Part I
Ever since I first got very sick four years ago, the lyme question has haunted me. Although my intuition told me I had it and that lyme was the silent, insidious bacteria inside of me that was keeping me from getting well, my continued negative test results made me doubt. The negative test results also kept my doctors from treating me, except for one doctor in the beginning. But that treatment didn't get me 100% well. I have, at this point, probably seen more than 25 doctors. Even my current doctor, who is amazing and treated me for babesia, never treated me for lyme.
But still, I just keep having a hunch that the current state I am in, though well, isn't good enough. I am also one of the lucky ones who has amazing family and friends around me, "you know who you is," who keep encouraging me to listen to my intuition and to keep seeking answers. So many don't have this support which makes them even sicker, because being denied one's own reality is maddening.
I read about Advanced Laboratory Services because another lyme patient tells me about it. The best, most informative information has come to me mostly through other patients. I had asked my doctor months ago to get these lab test kits and he did it right away, even though he hadn't used them with anyone else. I am so appreciative that he is so open minded. I don't remember why we didn't test me then, but I think we got side tracked because I asked to be given something for bartonella, thinking that I was possibly dealing with that. Also, because I am relatively functional about two weeks out of every month now, it's easy to get distracted and forget how much pain I'm in during a flare. Advanced Laboratory Services test also requires that one be symptomatic for the blood draw and so each time I didn't get tested during a flare, I had to wait for another one!
(A sidebar regarding lyme tests: lyme tests are UNRELIABLE. The two tiered standard approach with the ELISA and Western Blot are known to often return FALSE NEGATIVES. These are the two tests I was tested with many times in the beginning. What these tests are looking for is whether or not the patient has created antibodies to the lyme bacteria. However, depending on the timing of the test, the patient's overall immune system and other factors, oftentimes the result will be negative. My weakened immune system, hormonal fluctuations, adrenal fatigue and timing of the tests I did previously all contributed to negative test results. Even Igenex, the gold standard for lyme tests which also tests for the antibodies the patient has made in response to the bacteria (not the bacteria itself), returned a negative test for me. Advanced Laboratory Services tests for the bacteria itself. And, I had blood taken while I was symptomatic.)
The last flare I have is incredibly painful and debilitating. I am on the couch for days and it hurts to just breathe. I can't eat for three days either because I am so nauseated. This is really hard on the body too because any weight I've gained during my "healthy" days I immediately lose and thus lose strength. I will myself to get to the doctor so he can do a blood draw while I am so sick. And hallelujah, the test comes back POSITIVE. I have read that a woman's menstrual cycle (hello, I have been saying this ALL ALONG) influences not only her flares but the probability of a positive or negative lyme test. There is a great article about Dr. Marylynn Barkley, out of UC Davis who did research on hormones and how they influence the lyme testing that you can read here - Marylynn Barkley, Lyme Fluctuations, Tests, and Hormones. If you are a woman who is experiencing painful lyme symptoms that are flaring around your period, or you feel crazy and your doctor isn't listening to you, read this. And no, you aren't crazy. You are sick and need to be treated. LISTEN TO YOUR INTUITION. I have been kicked into "early menopause" but now, because of this positive test, I can't help but wonder if I get treated and actually get better if my hormones won't regulate themselves. And I am sending a copy of my positive lyme test to all of the doctors who told me I was wrong.
Part II - the protocol to eradicate these nasty bugs from my body...coming soon!
Tuesday, November 13, 2012
Monday, October 15, 2012
Neurologist, Low Level Light Therapy, Monthly Flares & A Mammogram!
NEUROLOGIST
I go to see a neurologist because of the horrible nerve pain in my shoulders, neck and head. He is nice enough and listens as I try to give him my history, but about half way through he checks out. I know it's overwhelming for a doctor to hear my history because it's long and detailed, but never a good sign. Despite having spent the last three years DETOXING my body from whatever tick borne illnesses I was dealing with, the antibiotics used to rid my body of said tick borne illnesses, heavy metals, viral infections etc, his recommendation for the headaches is botox injections. Um, yeah, no thanks. He does suggest an MRI, which I get, and I am happy that it is normal.
LOW INTENSITY LIGHT THERAPY
I'm doing low intensity light therapy now. My doctor recommended it to help heal the cells in the muscles of my shoulder and neck. Within two sessions the severe pain I was dealing with is going away. One thing that has drastically changed is that when I used to turn my head from side to side it would creak and crack. I also lost the ability to tip my head back because of the muscle pain. After a few sessions my neck doesn't hurt like that anymore and I can do yoga poses that involve moving my neck around without pain.
MONTHLY FLARES
Despite getting stronger on a daily basis, I am still having monthly flares. I'm on progesterone and estrogen so we are not sure still if it's hormone influenced or lyme flaring in a four week cycle. I am going to get tested at Advanced Laboratory Systems (ALS), which does a direct culture for the spirochetes, as opposed to testing the antibodies that one makes to the spirochetes (all of the other tests). From the ALS site it says that it is best to draw blood for this test when one is symptomatic, so I have to wait until my next flare to do so.
MAMMOGRAM
I had my first mammogram during all of this and unfortunately there were microcalcifications. From Wikipedia - "Microcalcifications are tiny specks of mineral deposits (calcium), that can be scattered throughout the mammary gland, or occur in clusters." Now they want to do a biopsy. I wonder how many other women fighting tick borne illnesses have had this happen and if the chronic inflammation from the bacterial infection contributed to these calcifications? Menopause can also apparently bring these on, and because of this illness I have been kicked into early menopause. None of the doctors I've asked has an answer as to what really causes these. This seems to be a theme in my journey. :(
I go to see a neurologist because of the horrible nerve pain in my shoulders, neck and head. He is nice enough and listens as I try to give him my history, but about half way through he checks out. I know it's overwhelming for a doctor to hear my history because it's long and detailed, but never a good sign. Despite having spent the last three years DETOXING my body from whatever tick borne illnesses I was dealing with, the antibiotics used to rid my body of said tick borne illnesses, heavy metals, viral infections etc, his recommendation for the headaches is botox injections. Um, yeah, no thanks. He does suggest an MRI, which I get, and I am happy that it is normal.
LOW INTENSITY LIGHT THERAPY
I'm doing low intensity light therapy now. My doctor recommended it to help heal the cells in the muscles of my shoulder and neck. Within two sessions the severe pain I was dealing with is going away. One thing that has drastically changed is that when I used to turn my head from side to side it would creak and crack. I also lost the ability to tip my head back because of the muscle pain. After a few sessions my neck doesn't hurt like that anymore and I can do yoga poses that involve moving my neck around without pain.
MONTHLY FLARES
Despite getting stronger on a daily basis, I am still having monthly flares. I'm on progesterone and estrogen so we are not sure still if it's hormone influenced or lyme flaring in a four week cycle. I am going to get tested at Advanced Laboratory Systems (ALS), which does a direct culture for the spirochetes, as opposed to testing the antibodies that one makes to the spirochetes (all of the other tests). From the ALS site it says that it is best to draw blood for this test when one is symptomatic, so I have to wait until my next flare to do so.
MAMMOGRAM
I had my first mammogram during all of this and unfortunately there were microcalcifications. From Wikipedia - "Microcalcifications are tiny specks of mineral deposits (calcium), that can be scattered throughout the mammary gland, or occur in clusters." Now they want to do a biopsy. I wonder how many other women fighting tick borne illnesses have had this happen and if the chronic inflammation from the bacterial infection contributed to these calcifications? Menopause can also apparently bring these on, and because of this illness I have been kicked into early menopause. None of the doctors I've asked has an answer as to what really causes these. This seems to be a theme in my journey. :(
Wednesday, August 15, 2012
I am still in the lyme lands. Since treating babesiosis last year I have gotten better, but not well. I live in lyme limbo, well enough to get through my good days, but cycling every month with bad days of incapacitating flares of nerve pain so deep I can't breathe. The symptoms have completely changed their nature; where I had classic throbbing migraines before, I now have headaches that start in my nerves. I also now have lower rib aching, spontaneous scabs on my body, eye, scalp and all over body itching, vagus nerve pain and thus a gag reflex and hot flashes.
HORMONES
Dr. X and I are still doing a multi-pronged approach. Finally my hormones are being addressed. After a month of testing my estrogen and progesterone every week, it is determined that I am at levels so low they are almost unable to be registered. I had been asking doctors to test me every week for a month since I first got sick 3 years ago. The endocrinologist tells me I am in early menopause. I don't entirely believe this though. I think it's because of being so sick, all of the meds I've been on, and the fact that I've lost 20 lbs. because of the illness. I'm doing estrogen cream, along with the progesterone, and am to start supplementing pregnenolone (the mother of all hormones) soon.
BARTONELLA
A friend in the know tells me she thinks I have bartonella. I suspected this a few months ago because of the rib pain, but like every step in this journey I am at first in denial and then finally acceptance. It is now time to treat the bartonella. Dr. X. prescribes Cipro, but I am STILL battling candida so I can't do antibiotics again that will wreak havoc on my gut. I have upped the intake of pro-biotics and am still doing grapefruit seed extract. An herb, houttynia, is recommended to me to battle bartonella. I try Byron White's A-BART, and do only 1 drop. However, I react strongly two days later and stop taking it because it throws me in to a flare.
HERPES VIRUS 6 (HHV-6)
I see an immunologist who guesses that I am having a reactivation of the Herpes Virus 6 (the virus that gives one chicken pox). I had a bad case of chicken pox when I was younger, so this makes sense. She tests me and it does come back positive but for the IgM, which indicates previous infections. I really think the Bell's Palsy (7th cranial nerve inflammation), the Herpes Virus, hormones and tick disease are all playing off of each other, and it is just a domino effect of events. My eyelids are inflamed sometimes and my eyes feel sticky, particularly before a flare. I remember when I had bell's palsy my left eye felt that way. I think either the tick borne disease, the herpes virus or both are now in the nerves in my neck and head and during a flare this is where the pain is.
ZOMIG NASAL SPRAY
I use zomig nasal spray (which is for migraines) during a flare. It is now giving me a bad rebound headache that is almost worse then the initial headache I took it for. Also, I have found that I can't let any of the spray run down my throat into my stomach. It is toxic and if I let any get in my stomach it makes me almost vomit a couple of days later. Need to find a neurologist to talk to about alternative therapies for these nerve headaches.
The journey continues.
HORMONES
Dr. X and I are still doing a multi-pronged approach. Finally my hormones are being addressed. After a month of testing my estrogen and progesterone every week, it is determined that I am at levels so low they are almost unable to be registered. I had been asking doctors to test me every week for a month since I first got sick 3 years ago. The endocrinologist tells me I am in early menopause. I don't entirely believe this though. I think it's because of being so sick, all of the meds I've been on, and the fact that I've lost 20 lbs. because of the illness. I'm doing estrogen cream, along with the progesterone, and am to start supplementing pregnenolone (the mother of all hormones) soon.
BARTONELLA
A friend in the know tells me she thinks I have bartonella. I suspected this a few months ago because of the rib pain, but like every step in this journey I am at first in denial and then finally acceptance. It is now time to treat the bartonella. Dr. X. prescribes Cipro, but I am STILL battling candida so I can't do antibiotics again that will wreak havoc on my gut. I have upped the intake of pro-biotics and am still doing grapefruit seed extract. An herb, houttynia, is recommended to me to battle bartonella. I try Byron White's A-BART, and do only 1 drop. However, I react strongly two days later and stop taking it because it throws me in to a flare.
HERPES VIRUS 6 (HHV-6)
I see an immunologist who guesses that I am having a reactivation of the Herpes Virus 6 (the virus that gives one chicken pox). I had a bad case of chicken pox when I was younger, so this makes sense. She tests me and it does come back positive but for the IgM, which indicates previous infections. I really think the Bell's Palsy (7th cranial nerve inflammation), the Herpes Virus, hormones and tick disease are all playing off of each other, and it is just a domino effect of events. My eyelids are inflamed sometimes and my eyes feel sticky, particularly before a flare. I remember when I had bell's palsy my left eye felt that way. I think either the tick borne disease, the herpes virus or both are now in the nerves in my neck and head and during a flare this is where the pain is.
ZOMIG NASAL SPRAY
I use zomig nasal spray (which is for migraines) during a flare. It is now giving me a bad rebound headache that is almost worse then the initial headache I took it for. Also, I have found that I can't let any of the spray run down my throat into my stomach. It is toxic and if I let any get in my stomach it makes me almost vomit a couple of days later. Need to find a neurologist to talk to about alternative therapies for these nerve headaches.
The journey continues.
Friday, December 9, 2011
My Sister is Diagnosed, Adrenal Fatigue & Be Your Own Advocate
MY SISTER HAS BABESIA AND LYME
I'm in the kitchen watching my younger sister take Mepron, the yellow, mustard like medicine I took for seven months for babesia. She asks me, "will it make me sick?" Everyone responds differently to everything, so I can't tell her what will happen, and will just have to watch and see how this progresses for her. It feels surreal that she, too, has now been diagnosed with babesia and lyme. However, the silver lining is that she has, we hope, been diagnosed much earlier than I and will thus get better quicker. She has been feeling unwell for a couple of months but because she has some hormonal issues thought it might be that. Then a headache developed that she "couldn't get out from under" and weird symptoms started popping up. She was tested and came back positive for both. I am completely distressed that she has to deal with this mess now too, but grateful that she got an answer. It's always scary and disheartening to be so sick and not know why! At least the entire family has been through this drill, and everyone is now very educated about lyme and co-infections and we all know what to expect. She also seems to have a stronger immune system, so I am hopeful her body will fight hard and she will not become so intolerant to foods, environment, etc.
ADRENAL FATIGUE
It seems on my end that possibly the tick borne illness has been beaten down to manageable levels. What I seem to be dealing with now is the severe adrenal fatigue and hormonal imbalances. Since everything seems to be related my guess is that I was already heading towards adrenal fatigue from a stressed out life and the tick borne illness put me over the edge. I've been reading about adrenal fatigue and cortisol is a major factor in histamine response, food intolerances, sleep issues, and the ability to handle stress. My body is in such a sensitive state right now that any time I eat my body gets slightly inflamed and my nose itches like an allergy! Any negative information, emotion etc feel WAY bigger than they are, simply because my body can't regulate any kind of stressor. My doctor and I have decided to do a full assault on the adrenal situation so I am starting B5 and B6 vitamins as well as an adrenal support supplement. We'll see how that effects my sleep. Exhaustion continues to haunt me and is effecting my personality. I want to be happy and positive, but exhaustion this deep makes me want to weep like a baby.
ADVOCATE FOR YOURSELF
It's been a long journey and I think one major lesson has been that I must be an active participant in my own healing. I've said this before because it is such a vital part of getting well. My doctor is dealing with hundreds of patients, so I can't expect him to remember EVERY detail of my medical history. It is up to me to remind him, to do my own reading and research, to have intelligent questions to ask of him, to keep pushing and pushing for my own wellness. I must remind him I am a human being who had a life before I got sick, and that it is up to me, with his professional guidance, to do everything I can to get well. I have a couple of pictures of myself from before I got sick in my day planner, and when I was at my last appointment pulled them out and showed my doctor. He has only known me as a sick person, and I think photos like that can help a doctor see the patient as the full human being they were and want to be.
I'm in the kitchen watching my younger sister take Mepron, the yellow, mustard like medicine I took for seven months for babesia. She asks me, "will it make me sick?" Everyone responds differently to everything, so I can't tell her what will happen, and will just have to watch and see how this progresses for her. It feels surreal that she, too, has now been diagnosed with babesia and lyme. However, the silver lining is that she has, we hope, been diagnosed much earlier than I and will thus get better quicker. She has been feeling unwell for a couple of months but because she has some hormonal issues thought it might be that. Then a headache developed that she "couldn't get out from under" and weird symptoms started popping up. She was tested and came back positive for both. I am completely distressed that she has to deal with this mess now too, but grateful that she got an answer. It's always scary and disheartening to be so sick and not know why! At least the entire family has been through this drill, and everyone is now very educated about lyme and co-infections and we all know what to expect. She also seems to have a stronger immune system, so I am hopeful her body will fight hard and she will not become so intolerant to foods, environment, etc.
ADRENAL FATIGUE
It seems on my end that possibly the tick borne illness has been beaten down to manageable levels. What I seem to be dealing with now is the severe adrenal fatigue and hormonal imbalances. Since everything seems to be related my guess is that I was already heading towards adrenal fatigue from a stressed out life and the tick borne illness put me over the edge. I've been reading about adrenal fatigue and cortisol is a major factor in histamine response, food intolerances, sleep issues, and the ability to handle stress. My body is in such a sensitive state right now that any time I eat my body gets slightly inflamed and my nose itches like an allergy! Any negative information, emotion etc feel WAY bigger than they are, simply because my body can't regulate any kind of stressor. My doctor and I have decided to do a full assault on the adrenal situation so I am starting B5 and B6 vitamins as well as an adrenal support supplement. We'll see how that effects my sleep. Exhaustion continues to haunt me and is effecting my personality. I want to be happy and positive, but exhaustion this deep makes me want to weep like a baby.
ADVOCATE FOR YOURSELF
It's been a long journey and I think one major lesson has been that I must be an active participant in my own healing. I've said this before because it is such a vital part of getting well. My doctor is dealing with hundreds of patients, so I can't expect him to remember EVERY detail of my medical history. It is up to me to remind him, to do my own reading and research, to have intelligent questions to ask of him, to keep pushing and pushing for my own wellness. I must remind him I am a human being who had a life before I got sick, and that it is up to me, with his professional guidance, to do everything I can to get well. I have a couple of pictures of myself from before I got sick in my day planner, and when I was at my last appointment pulled them out and showed my doctor. He has only known me as a sick person, and I think photos like that can help a doctor see the patient as the full human being they were and want to be.
Saturday, November 5, 2011
Histamine Intolerance, Hormones, Chiropractor, Acupuncture, Herbs and More!
HISTAMINE INTOLERANCE
I took a break for a few months from everything lyme and during the summer tried to just live, sit in the sun a little, read, relax and forget about "being sick." Now that it's fall, I've had a bad flare again and so I'm back to researching and actively seeking wellness. I had never heard the phrase "histamine intolerance" until last week. My stomach has been a major continuing issue in this nightmare I've found myself in and something my doctor said to me a few weeks back really blew my mind. He said, "you don't have a stomach ache because of your headache, you have a headache because of your stomach ache. I think your problem is originating in your stomach." I have been a migraine sufferer since college and migraines always came with accompanying nausea, vomiting and horrific pain. I always assumed, and have for the past 20 years, that any issues I was having from food, my menstrual cycle, etc were originating in my head. So I was always treating the head symptoms with aspirin, advil, motrin, excedrin migraine, nasal sprays of varying kinds. These only served to make my stomach more sick later, as I tried to digest these things.
Flash forward to now, after 3 years of bacterial infection, antibiotics and more supplements and meds than I can count. Following months of babesia (bacterial infection from a tick bite) treatment, I can feel in my body that part of the equation is gone. No more night sweats, no more nightmares, no more headaches that feel like someone is squeezing my head in a vise. HOWEVER, there are lingering symptoms, the worst of which has been these flares I go through in which my stomach is twisted in knots, throbbing, and basically feeling like I have a stomach migraine. So, after that weekend flare, I googled "stomach allergy," and after going down the rabbit hole of the internet I found my way to "histamine intolerance." AHA!
"Histamine intolerance refers to a reaction to foods that have high levels of naturally occurring histamine; in contrast, during a normal allergic reaction, the body itself produces high levels of histamine in response to a food it perceives as an invader. People with histamine intolerance often have low levels of either of two enzymes -- diamine oxidase (DAO) and histamine-N-methyltransferase (HNMT) -- that bind to and metabolize histamine. In these people, histamine can build up over time and cause symptoms throughout the body." (From foodallergies.com).
I realized I was reacting to certain foods but couldn't figure out why. After reading extensively about histamine intolerance, I am certain I have become more sensitive to this, as I have to everything because of the tick borne illness battle I was fighting. Having discovered this connection I have cut out even more foods, but I have noticed that I am not getting inflammation and headaches every time I eat! Even just being aware during any given day that I don't eat more than one histamine producing food has helped. I also have found that if I do get a headachy feeling taking a vitamin c will reverse the effect. I read that vitamin c is a natural anti-histamine, so that makes sense.
HORMONES
Another connection - I have read that estrogen dominance can make women more sensitive to things they are already reacting to, as in allergies. So, it makes sense that now that my flares are occurring around ovulation they are influenced by the escalating estrogen. I've been using the progesterone cream since about June, and it is definitely helping with libido, headaches, energy, etc. My periods are finally normal again, like before I was sick. I tried testosterone cream too for a week. It made me so irritated and angry that I was taken off of it immediately. Now I know why some men can be so quick to anger. Testosterone made me have "out of body" anger and I was ready to fight with everyone.
CHIROPRACTOR & ACUPUNCTURE
I've also added seeing a chiropractor, which has helped my body in the healing process enormously. I don't understand entirely how it's working, but somehow it's re-setting my parasympathetic nervous system back to being well. My body has been in pain for so long that it was in a pain cycle it couldn't get out of. Adjusting the spine has freed up the nerves to relax, and I can feel my body starting to heal on a cellular level. I see her 2 times a week, and an acupuncturist 2 times a month. The acupuncturist has also given me chinese herbs for the sleeping issues. Still not sleeping through the night, but I think the herbs are also beginning to help my body relax. But sometimes I think I will never get an actual night's sleep again.
If you are a lyme patient and in this nightmare too, what I can share with you is that it is a process. It requires patience and diligence on your part. I have been dealing with this for three years and while I am impatient to get back to my life and really frustrated often, right now I can feel that there has been progress. So hang in there. I hope these posts help, and that you uncover another layer of healing because of the information I'm discovering!
I took a break for a few months from everything lyme and during the summer tried to just live, sit in the sun a little, read, relax and forget about "being sick." Now that it's fall, I've had a bad flare again and so I'm back to researching and actively seeking wellness. I had never heard the phrase "histamine intolerance" until last week. My stomach has been a major continuing issue in this nightmare I've found myself in and something my doctor said to me a few weeks back really blew my mind. He said, "you don't have a stomach ache because of your headache, you have a headache because of your stomach ache. I think your problem is originating in your stomach." I have been a migraine sufferer since college and migraines always came with accompanying nausea, vomiting and horrific pain. I always assumed, and have for the past 20 years, that any issues I was having from food, my menstrual cycle, etc were originating in my head. So I was always treating the head symptoms with aspirin, advil, motrin, excedrin migraine, nasal sprays of varying kinds. These only served to make my stomach more sick later, as I tried to digest these things.
Flash forward to now, after 3 years of bacterial infection, antibiotics and more supplements and meds than I can count. Following months of babesia (bacterial infection from a tick bite) treatment, I can feel in my body that part of the equation is gone. No more night sweats, no more nightmares, no more headaches that feel like someone is squeezing my head in a vise. HOWEVER, there are lingering symptoms, the worst of which has been these flares I go through in which my stomach is twisted in knots, throbbing, and basically feeling like I have a stomach migraine. So, after that weekend flare, I googled "stomach allergy," and after going down the rabbit hole of the internet I found my way to "histamine intolerance." AHA!
"Histamine intolerance refers to a reaction to foods that have high levels of naturally occurring histamine; in contrast, during a normal allergic reaction, the body itself produces high levels of histamine in response to a food it perceives as an invader. People with histamine intolerance often have low levels of either of two enzymes -- diamine oxidase (DAO) and histamine-N-methyltransferase (HNMT) -- that bind to and metabolize histamine. In these people, histamine can build up over time and cause symptoms throughout the body." (From foodallergies.com).
I realized I was reacting to certain foods but couldn't figure out why. After reading extensively about histamine intolerance, I am certain I have become more sensitive to this, as I have to everything because of the tick borne illness battle I was fighting. Having discovered this connection I have cut out even more foods, but I have noticed that I am not getting inflammation and headaches every time I eat! Even just being aware during any given day that I don't eat more than one histamine producing food has helped. I also have found that if I do get a headachy feeling taking a vitamin c will reverse the effect. I read that vitamin c is a natural anti-histamine, so that makes sense.
HORMONES
Another connection - I have read that estrogen dominance can make women more sensitive to things they are already reacting to, as in allergies. So, it makes sense that now that my flares are occurring around ovulation they are influenced by the escalating estrogen. I've been using the progesterone cream since about June, and it is definitely helping with libido, headaches, energy, etc. My periods are finally normal again, like before I was sick. I tried testosterone cream too for a week. It made me so irritated and angry that I was taken off of it immediately. Now I know why some men can be so quick to anger. Testosterone made me have "out of body" anger and I was ready to fight with everyone.
CHIROPRACTOR & ACUPUNCTURE
I've also added seeing a chiropractor, which has helped my body in the healing process enormously. I don't understand entirely how it's working, but somehow it's re-setting my parasympathetic nervous system back to being well. My body has been in pain for so long that it was in a pain cycle it couldn't get out of. Adjusting the spine has freed up the nerves to relax, and I can feel my body starting to heal on a cellular level. I see her 2 times a week, and an acupuncturist 2 times a month. The acupuncturist has also given me chinese herbs for the sleeping issues. Still not sleeping through the night, but I think the herbs are also beginning to help my body relax. But sometimes I think I will never get an actual night's sleep again.
If you are a lyme patient and in this nightmare too, what I can share with you is that it is a process. It requires patience and diligence on your part. I have been dealing with this for three years and while I am impatient to get back to my life and really frustrated often, right now I can feel that there has been progress. So hang in there. I hope these posts help, and that you uncover another layer of healing because of the information I'm discovering!
Monday, June 6, 2011
Hormones & Tick Borne Diseases
It is amazing to me that even after Suzanne Somers' book, "Breakthrough," and Dr. Christiane Northrup's "The Wisdom of Menopause" and "Women's Bodies, Women's Wisdom" that hormones and hormone replacement remain such a mystery and somewhat taboo to doctors. After seeing so many doctors (see previous posts!), it wasn't until my current doctor, who is an integrative doc, got on board that hormone replacement came into the picture. I had been telling my sister and friends for years that part of my "fight or flight" feeling had to do not only with cortisol issues, but a progesterone deficiency as well. Finally, FINALLY, my doctor (love him!) has given me progesterone cream and I am putting it on at night. I had a very bad experience 2 years ago with Prometrium (the SYNTHETIC version of progesterone) and it is very important to know the difference. I didn't know enough then, and the doctor who was trying to help me at the time didn't know enough either. The Prometrium made me CRAZY and sick and I could only tolerate it for about 2 days. My current doc, Dr. X., tells me this is because it was synthetic and 100 mg is WAY too much for the body (or my body) to process.
The hormone connection is a very important one for women with tick borne disease. So many of the symptoms cross reference, and as a 42 year old woman who may or may not be starting peri-menopause, it has been very confusing differentiating what is hormonal and what is being caused by babesia, bartonella etc. In my own experience, it has been truly frustrating trying to discuss the hormone connection with doctors of all specialties. Many of the doctors on my journey were dismissive and couldn't or wouldn't discuss hormones with me. Even a reproductive endocrinologist I saw didn't have any suggestions about hormones or cortisol! This is an area I feel needs to be studied much more extensively in terms of healing the damage that these bacterial infections cause. Imagine going through peri-menopause or menopause (which are BAD ENOUGH), but add to that a bacterial illness that causes untold number of uncomfortable symptoms. No wonder I felt suicidal so often! My testosterone is also very low and I am now being put on testosterone cream as well. Haven't started that yet, but maybe it will help with the energy and lack of libido. I'm hoping! I'm doing B12 shots and cortisol, and STILL my energy is lagging. I'm depleted in so many ways beyond the bacterial infections, and it is so important that doctors educate themselves about how these infections further damage other systems in the body. And the hormonal connection can't be overlooked! Again, I'm not a doctor, just a patient who is going through this right now, so this is just my opinion!
I've just started the progesterone cream and will start the testosterone soon. Interested to see how this helps overall in the healing process.
The hormone connection is a very important one for women with tick borne disease. So many of the symptoms cross reference, and as a 42 year old woman who may or may not be starting peri-menopause, it has been very confusing differentiating what is hormonal and what is being caused by babesia, bartonella etc. In my own experience, it has been truly frustrating trying to discuss the hormone connection with doctors of all specialties. Many of the doctors on my journey were dismissive and couldn't or wouldn't discuss hormones with me. Even a reproductive endocrinologist I saw didn't have any suggestions about hormones or cortisol! This is an area I feel needs to be studied much more extensively in terms of healing the damage that these bacterial infections cause. Imagine going through peri-menopause or menopause (which are BAD ENOUGH), but add to that a bacterial illness that causes untold number of uncomfortable symptoms. No wonder I felt suicidal so often! My testosterone is also very low and I am now being put on testosterone cream as well. Haven't started that yet, but maybe it will help with the energy and lack of libido. I'm hoping! I'm doing B12 shots and cortisol, and STILL my energy is lagging. I'm depleted in so many ways beyond the bacterial infections, and it is so important that doctors educate themselves about how these infections further damage other systems in the body. And the hormonal connection can't be overlooked! Again, I'm not a doctor, just a patient who is going through this right now, so this is just my opinion!
I've just started the progesterone cream and will start the testosterone soon. Interested to see how this helps overall in the healing process.
Wednesday, May 25, 2011
Spiritual Home
I've decided to write about something other than lyme disease. I read in a book somewhere that the place you want to die and/or be buried is your spiritual home. That place for me is a beautiful garden called Woodstock Gardens in Inistioge, Ireland.
In 2001 I have a dream...I am following a 3 legged dog through an ornate, precisely designed English garden. Then we are walking through the soft underbrush in a dense forest. Everything around us gets very very quiet. All I can hear is the muted crunch of our feet on the moss underneath. Then, we burst through the underbrush into a vast, open space. On two sides, running parallel to each other are enormous trees, their branches touching at the top, creating a massive tree cathedral in the center of the forest. In the profound silence of the dream I know I am in the presence of the source of all things, and I fall to my knees and begin sobbing.
In 2004 I move to Los Angeles and my friend Heather introduces me to my future roommate and soul sistah Samantha. Within one of our first meetings we decide we will be going to Ireland together. In November of 2004 Samantha and I do just that. I tell her about my dream, and that I always thought the forest from the dream was not in the United States but maybe England. One day towards the end of our trip we decide to have no plans and let Ireland show us the way. We go to Nicholas Mosse, the beautiful pottery maker, and while there ask the salesclerk where we should go for lunch. She tells us to go down the road to the "Circle of Friends" restaurant. She thinks we will enjoy it because it's named after the movie. We do just that and find ourselves in the lovely town of Inistioge. The owner of the restaurant chats with us and suggests we go for a walk in the woods across the road after lunch. He says, "there's a lovely 12th century ruin up there to see."
We cross the road and begin our ascent up into the hills. It is late afternoon and the sun is beginning to get lower in the sky, but casting that honeyed, magic hour light down on us. The path we are on is bordered by trees and there is something in the air that begins to feel familiar to me. We reach the old tower and take pictures, enjoying the view of the valley below. On our way back, Samantha takes a picture of me under the trees, and I say to her, "the air here feels like my dream." She keeps being intuitively pulled further up the hill, towards sheep meadows that are at the top. I follow her and we get stopped by a fence we can't get over. We go back and make our way to the road and the car. But Sam says, "I really feel like we need to go drive to the top, the owner of the restaurant said there are gardens up there." It's about 4:00 by this time, and getting colder, but we decide to do it.
I'm driving and navigating the narrow road, houses clustered right up against it. I am taking a turn and suddenly a dog is in front of our car and I slam on the brakes. The dog looks me in the eye, and then turns and limps away off to the side. I glance at it, and then Samantha clamps her hand down on my wrist and says, "that dog has 3 legs." The dream. She says, "we HAVE to go to the top now!" All of my cells are on intuitive high alert as we drive up, up, up to the top of this hill. At the top we come to a stone entrance with marble dog heads on each side. We drive through and wind down a dirt road, through sheep meadows, and cows grazing. The sun is still a soft, sweet light in the fields, almost guiding our way. At the end, we come to a parking lot, "Woodstock Gardens," so we park and get out. Samantha practically jumps out of the car, my own personal divining rod and says, "this way, it's this way." She runs ahead of me and I am stopped by a park guide who hands me a map and simply says, "don't get lost."
There is a stone wall in front of me and I jump over it. I find myself standing in the outlines of what used to be the English garden of this manor house. No flowers are here anymore, but I can see the outline of what the garden used to look like. Samantha is ahead of me now, so I hurry to catch up to her. Something is telling her "this way, "that way," so I follow. She leads me to an area of massive redwood trees. I have to step down about 3 feet into the shade of the trees, and when I do, I start to sob uncontrollably. Samantha says, "what is it?? I say, "it's here, the forest, I'm here, but it wasn't red wood trees in my dream. It's somewhere close though. I can hear it." I leave her, my own intuition kicking in, and am guided by something completely outside myself. I aim for short grasses and trees, beckoning me with dappled sunlight. When I get into this area everything gets very quiet but for the pulsing of my own heart. My feet start to move of their own accord. I am being drawn to something that not even my mind has caught up to yet. And then I see it.
Through the small trees I'm walking in, I start to see large tree trunks, many of them, lined up in a row, in a pattern, making sense. My heart starts to beat faster and I can barely breathe. I burst out of the underbrush I've been walking through and I am standing on a path that is in the exact center of a massive tree cathedral. There are 40 300 foot pine trees on either side of this path, their branches touching at the top. It is almost 3 football fields long. As the sun sets and day turns to night, the air in-between the trees feels alive with energy. I have the strange sensation that if I were to reach my hand out, it would be touched by someone from the other side. I am humbled and awed because I know something far bigger than myself is in control here. And yet I feel safe, at peace and like my soul is finally home. I feel the full weight of my human exhaustion, and that here in this place my soul is free.
I have told this story to people and they often ask the same question: what do you think it all meant? I used to answer that what it meant for me is to understand there are bigger forces at work in the universe and I just need to let go, trust, and let it happen. But after being ill for 3 years and facing my own mortality it has come to mean much more than that. In my times of darkness in this journey, a place my heart goes to is the forest. Just remembering the smell of it, the profound silence and the wisdom of the old trees there, calms me. Mortality has taken on a new meaning; I take comfort in knowing when it happens, my soul will return to my forest and finally, truly, be home.
Monday, May 9, 2011
May - Lyme Disease Awareness Month
It's Mother's Day and I'm at my sister's new house in the great, big back yard, with my family all around me. I'm feeling the best I've felt in a long time, despite having a bad candida infection (yeast overgrowth) now that I must battle. And there are still symptoms every day - Mepron (one of the meds for the babesia infection I have) makes me have nightmares, hurts my stomach, I am still fatigued, I can feel my muscles hurting under my skin, etc. However, my good days are getting better, and that's something. It's a stunningly beautiful day here in Philly, the kind of May day that makes me feel grateful to be alive. The sun is glorious, it's a perfect 65 degrees, no humidity, and flowers have burst into color everywhere. We are in my sister's backyard before dinner, and I'm having an easy lacrosse catch with my niece. Everyone is laughing and enjoying the day. But in the back of my mind, I keep thinking that I shouldn't be standing in the grass. I keep looking at the woods that surround her house, and the place where the lawn meets the trees, the places ticks like to live waiting for a host (humans!) to walk by so they can jump on. I feel slightly uneasy and it makes me mad. I was always an adventurous person who liked to try new things and get in the middle of the action. Now, I just want to put down the lacrosse stick and go sit on the deck where I feel more safe. What a bummer.
Lyme disease and co-infections are no joke. I've been sick now going on 3 years, which to some lyme patients is nothing at all. I know lymies who have been infected for 15 years without knowing what the cause of their misery was. When I was healthy and had never experienced debilitating illness before, I just didn't care about what someone was going through if they were ill. Well, it wasn't that I didn't care, I just didn't KNOW. I had no experience in that arena in my life to commiserate or be compassionate about what it is like to be that sick. So imagine...take the worst illness you've ever experienced, I'm talking so sick you can't get out of bed, fever, vomiting whatever. Ok, your WORST hangover. Now multiply the pain by about 10, and then imagine you have that level of pain every day for YEARS. Oh, and the doctors you see for this pain tell you your crazy, and that they don't know what's wrong with you. Yeah. That's what it feels like to be a lyme patient.
So, what is my point? As May is lyme disease awareness month; check in with your lyme friends, be diligent about checking yourself and your children for ticks, if you see a tick on you, SAVE IT, get your butt to the doctor immediately, get on anti-biotics immediately and don't screw around. And if you are a lymie; be kind to yourself, forgive your body, know that it will get better, watch a funny movie, keep negativity out of your life, treat your body like a temple, get enough sleep, eat only healthy foods that will heal your body, and most importantly TRUST YOUR INTUITION.
P.S. - my sister calls me when I get home from our Mother's Day gathering. She had found a tick in her bed earlier when she woke up from a nap and she has a perfect, round, mark on her collarbone. She is going to the doctor tomorrow.
Saturday, April 9, 2011
Dear Doctors I have seen in the past 3 years
Dear Doctor-
You are receiving this letter because you treated me sometime between 2008 and 2011. This letter is not to place blame or find fault with anyone, but simply to show the extensive number of doctors a lyme patient must go to before they get a diagnosis. This letter will also hopefully inspire each of you to learn more about the disease, and to thus be better educated and far more open minded when a patient presents with the symptoms that I did.
The following are the doctors I have seen in the past three years;
1. General Practitioner, Los Angeles - Treated me for the "flu" 3 different times, gave me anti-nausea medicine and Advil
2. ER in Hospital in Los Angeles - Given morphine for the pain, told to see a rheumatologist - X-ray, Cat Scan - all normal
3. Rheumatologist, L.A. - Diagnosed me with a "lupus like" autoimmune disease, fibromyalgia - Did a lyme Western Blot (because I asked) with a negative result. Put me on meds for lupus and fibro, which made me feel worse.
4. Neurologist, L.A. - I presented with Bell's Palsy (facial paralysis) of the left side of the face - My roommate (who was with me) and I asked if it could be lyme disease. He said, "no." Put me on steroids and anti-virals. I later learned that steroids can effect the outcome of a lyme test and aren't recommended when one has lyme.
I was so debilitated by the illness at this point that I had to move home with my parents in Philadelphia, PA, putting on hold the acting career I was pursuing.
5. Rheumatologist - Told me I had UCTD (undifferentiated connective tissue disease). Told me he did believe me when I said I was sick, but that he didn't know what it was.
6. Infectious Disease Doc - Tested me with the lyme Western Blot which was negative. I told him my symptoms were cycling monthly and he said, "in all of my years of practice I have never heard of that." Although I have read in numerous places that the lyme bacteria can flare in 4 week cycles, from Dr. Burrascano's 2008 Lyme Disease Guidelines - "It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism’s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species)."
7. Rheumatologist - Diagnosed me with fibromyalgia, depression. Prescribed Zoloft, a therapist and a sleep study. When I told him my symptoms seemed to get worse during menses, he ended the consultation and made me feel like it was "all in my head."
8. Therapist - sent to by above doctor - I told her something is very wrong, that I am really sick and trying to cope. I also told her that I am having suicidal thoughts and can't sleep. She says to me on my second appointment - "You look fine. So...why are you here?"
9. Dr. K - Endocrinologist - tested me for hormonal imbalances, including cortisol. Everything seemed to be normal.
10. General Practitioner - Lyme Endemic area in MD - when I asked him about co-infections he didn't know what they were (!) so I chose not to be tested by him and not to go back to him
11. LLMD - Tested me at Quest for borrelia burgdorferi, the lyme bacteria. All tests negative. Treated me based on a clinical diagnosis with 2 months doxycycline. Two weeks into treatment symptoms were resolving, I started sleeping through the night for the first time in a year. Took me off after 2 months to see what might happen, after a month off of the doxy, symptoms began to creep back in and I couldn't sleep. Put me on 2 more months and I began to get better again. Took me off AGAIN because my white blood cell count was low and suggested that I see a rheumatologist. I felt like I was going in circles. I didn't go back because he didn't address co-infections and offered no complimentary treatment in terms of combating yeast. Also no supplements or vitamins to help my immune system.
12. Hematologist - Doc #11 sends me here to get my white blood cell count checked.
13. LLMD - Did Western Blot and PCR testing of lyme and co-infections at MDL - tested me weekly for approximately 2 months - all tests negative - got a positive test result for Q Fever - (which he told me could be a false positive) and was given no meds or protocol to go forward but was still very sick. My instinct told me yet again that I needed to get another opinion.
14. Gynecologist - Was afraid I had another cyst, this doctor assured me I didn't and did a standard gyno exam. I asked if he could check my hormone levels (I still thought my monthly flares could be hormone/menstrual related) and he said they didn't do that.
15. Allergist - Examined me and checked that I had no polyps as I was still getting severe headaches, and thought they might be allergy related.
16. Allergist - Dr. #15's colleague, did a skin scratch allergy test on me. No "allergies."
17. Gynecologist/Holistic - Diagnosed me with leaky gut, adrenal gland fatigue - put me on many supplements but after about 2 months, I was still very sick.
18. Integrative Medicine Specialist/LLMD - Tested through Igenex, got a positive babesiosis (co-infection from a tick bite) test. I also had a cortisol test which showed that I have a very low level of cortisol in my body. Toxins that showed up were high on lead and mercury. Also shown to have food intolerances. Treating me for babesiosis first, severe adrenal fatigue, also doing complimentary /supplemental treatment such as iv vitamin drips, b12 shots, diet and hormone therapy. Beyond this he will determine if I have the co-infection bartonella and if, indeed, I am positive for borrelia (the lyme bacteria).
It is 4 months into my babesiosis treatment. I haven't had a headache for the last month, which is the first 30 day period I've had headache free in about 3 years.
It is my hope that doctors will start to take lyme disease and co-infections seriously, and to make them standard tests that are run along with all of the other tests that they do when first seeing a patient. Imagine if, when I went to doctor number one on this list, my general practitioner in Los Angeles, he was educated about the disease and had thought to test me. That was THREE years ago. If I had been treated then it would have been the difference between the cost for a few bottles of doxycycline and antibiotics for babesiosis, compared to the upwards of $60,000 I have now spent getting myself well. As the years went by, I fell further and further down the rabbit hole of illness, so that now it is an enormous undertaking just getting myself back to functioning. I have also not been able to work, and so the career that I was building has completely lost momentum.
Yes, I am aware that most think lyme disease is an "East Coast" disease, and so being in Los Angeles made it even more difficult for me to be tested. That is a fallacy though as lyme disease and co-infections are absolutely present in California, across the United States and around the world. Many doctors on the East Coast and elsewhere don't have lyme disease on the mind, and so patients continue to fall through the cracks, only to follow the list of doctors that I had to go through. What a waste of time, money, and life.
It is one thing to be so sick you can't get out of bed and to slowly feel yourself slipping away. It is another thing entirely to then have to fight the very people you are depending on to diagnose you. Please educate yourselves about lyme and co-infections so others coming to you now won't have to suffer the way I and so many others have.
Addendum #1 - I wrote the above in 2011. It is now 2013. It seems the babesia protocol kicked that bacteria into remission and I haven't had a recurrence of those particular set of symptoms (night sweats, nightmares, band around my head headaches). I did test positive for lyme through Advanced Laboratory Services (ALS). I was tested while I was symptomatic using their culture test. I am now being treated with I.V. Rocephin and not only has my clear headed thinking come back, but many symptoms have resolved; swollen glands, throbbing nerve pain in my head, muscle aches, throbbing stomach, gi distress, although I still have word recall issues and sometimes reverse words in a sentence. I am finally gaining weight (I lost 20 lbs while sick and couldn't keep weight on) and many of the food intolerances I had are resolving. I even have days now where I think about my future, because I can hope I actually have one.
You are receiving this letter because you treated me sometime between 2008 and 2011. This letter is not to place blame or find fault with anyone, but simply to show the extensive number of doctors a lyme patient must go to before they get a diagnosis. This letter will also hopefully inspire each of you to learn more about the disease, and to thus be better educated and far more open minded when a patient presents with the symptoms that I did.
The following are the doctors I have seen in the past three years;
1. General Practitioner, Los Angeles - Treated me for the "flu" 3 different times, gave me anti-nausea medicine and Advil
2. ER in Hospital in Los Angeles - Given morphine for the pain, told to see a rheumatologist - X-ray, Cat Scan - all normal
3. Rheumatologist, L.A. - Diagnosed me with a "lupus like" autoimmune disease, fibromyalgia - Did a lyme Western Blot (because I asked) with a negative result. Put me on meds for lupus and fibro, which made me feel worse.
4. Neurologist, L.A. - I presented with Bell's Palsy (facial paralysis) of the left side of the face - My roommate (who was with me) and I asked if it could be lyme disease. He said, "no." Put me on steroids and anti-virals. I later learned that steroids can effect the outcome of a lyme test and aren't recommended when one has lyme.
I was so debilitated by the illness at this point that I had to move home with my parents in Philadelphia, PA, putting on hold the acting career I was pursuing.
5. Rheumatologist - Told me I had UCTD (undifferentiated connective tissue disease). Told me he did believe me when I said I was sick, but that he didn't know what it was.
6. Infectious Disease Doc - Tested me with the lyme Western Blot which was negative. I told him my symptoms were cycling monthly and he said, "in all of my years of practice I have never heard of that." Although I have read in numerous places that the lyme bacteria can flare in 4 week cycles, from Dr. Burrascano's 2008 Lyme Disease Guidelines - "It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism’s cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species)."
7. Rheumatologist - Diagnosed me with fibromyalgia, depression. Prescribed Zoloft, a therapist and a sleep study. When I told him my symptoms seemed to get worse during menses, he ended the consultation and made me feel like it was "all in my head."
8. Therapist - sent to by above doctor - I told her something is very wrong, that I am really sick and trying to cope. I also told her that I am having suicidal thoughts and can't sleep. She says to me on my second appointment - "You look fine. So...why are you here?"
9. Dr. K - Endocrinologist - tested me for hormonal imbalances, including cortisol. Everything seemed to be normal.
10. General Practitioner - Lyme Endemic area in MD - when I asked him about co-infections he didn't know what they were (!) so I chose not to be tested by him and not to go back to him
11. LLMD - Tested me at Quest for borrelia burgdorferi, the lyme bacteria. All tests negative. Treated me based on a clinical diagnosis with 2 months doxycycline. Two weeks into treatment symptoms were resolving, I started sleeping through the night for the first time in a year. Took me off after 2 months to see what might happen, after a month off of the doxy, symptoms began to creep back in and I couldn't sleep. Put me on 2 more months and I began to get better again. Took me off AGAIN because my white blood cell count was low and suggested that I see a rheumatologist. I felt like I was going in circles. I didn't go back because he didn't address co-infections and offered no complimentary treatment in terms of combating yeast. Also no supplements or vitamins to help my immune system.
12. Hematologist - Doc #11 sends me here to get my white blood cell count checked.
13. LLMD - Did Western Blot and PCR testing of lyme and co-infections at MDL - tested me weekly for approximately 2 months - all tests negative - got a positive test result for Q Fever - (which he told me could be a false positive) and was given no meds or protocol to go forward but was still very sick. My instinct told me yet again that I needed to get another opinion.
14. Gynecologist - Was afraid I had another cyst, this doctor assured me I didn't and did a standard gyno exam. I asked if he could check my hormone levels (I still thought my monthly flares could be hormone/menstrual related) and he said they didn't do that.
15. Allergist - Examined me and checked that I had no polyps as I was still getting severe headaches, and thought they might be allergy related.
16. Allergist - Dr. #15's colleague, did a skin scratch allergy test on me. No "allergies."
17. Gynecologist/Holistic - Diagnosed me with leaky gut, adrenal gland fatigue - put me on many supplements but after about 2 months, I was still very sick.
18. Integrative Medicine Specialist/LLMD - Tested through Igenex, got a positive babesiosis (co-infection from a tick bite) test. I also had a cortisol test which showed that I have a very low level of cortisol in my body. Toxins that showed up were high on lead and mercury. Also shown to have food intolerances. Treating me for babesiosis first, severe adrenal fatigue, also doing complimentary /supplemental treatment such as iv vitamin drips, b12 shots, diet and hormone therapy. Beyond this he will determine if I have the co-infection bartonella and if, indeed, I am positive for borrelia (the lyme bacteria).
It is 4 months into my babesiosis treatment. I haven't had a headache for the last month, which is the first 30 day period I've had headache free in about 3 years.
It is my hope that doctors will start to take lyme disease and co-infections seriously, and to make them standard tests that are run along with all of the other tests that they do when first seeing a patient. Imagine if, when I went to doctor number one on this list, my general practitioner in Los Angeles, he was educated about the disease and had thought to test me. That was THREE years ago. If I had been treated then it would have been the difference between the cost for a few bottles of doxycycline and antibiotics for babesiosis, compared to the upwards of $60,000 I have now spent getting myself well. As the years went by, I fell further and further down the rabbit hole of illness, so that now it is an enormous undertaking just getting myself back to functioning. I have also not been able to work, and so the career that I was building has completely lost momentum.
Yes, I am aware that most think lyme disease is an "East Coast" disease, and so being in Los Angeles made it even more difficult for me to be tested. That is a fallacy though as lyme disease and co-infections are absolutely present in California, across the United States and around the world. Many doctors on the East Coast and elsewhere don't have lyme disease on the mind, and so patients continue to fall through the cracks, only to follow the list of doctors that I had to go through. What a waste of time, money, and life.
It is one thing to be so sick you can't get out of bed and to slowly feel yourself slipping away. It is another thing entirely to then have to fight the very people you are depending on to diagnose you. Please educate yourselves about lyme and co-infections so others coming to you now won't have to suffer the way I and so many others have.
Addendum #1 - I wrote the above in 2011. It is now 2013. It seems the babesia protocol kicked that bacteria into remission and I haven't had a recurrence of those particular set of symptoms (night sweats, nightmares, band around my head headaches). I did test positive for lyme through Advanced Laboratory Services (ALS). I was tested while I was symptomatic using their culture test. I am now being treated with I.V. Rocephin and not only has my clear headed thinking come back, but many symptoms have resolved; swollen glands, throbbing nerve pain in my head, muscle aches, throbbing stomach, gi distress, although I still have word recall issues and sometimes reverse words in a sentence. I am finally gaining weight (I lost 20 lbs while sick and couldn't keep weight on) and many of the food intolerances I had are resolving. I even have days now where I think about my future, because I can hope I actually have one.
Monday, March 7, 2011
Phone Trees & Paperwork will do me in before Lyme
I just spent the last few days very sick again in a bad flare. I'm talking in bed for 2 days, unable to move. My stomach so sick I couldn't eat for 2 days. My body hurt so much in every muscle and crevice I was walking hunched over when I finally got up.
Today I am ok, the flare has passed. I just got off the phone with my health insurance company. I had to switch over from Old Insurance to New Insurance because my Cobra ended. The transition may be more painful than the actual illness I'm dealing with. I have spoken to New Insurance in the past few weeks at least 2 times a week. Here is how this transition went:
1. I couldn't get new insurance company to send me the application for the insurance I was applying for - had to call them 3 times to get it mailed to me because they said I had to fill out a hard copy and I couldn't do it on-line (mind you I was running out of time b/c my Cobra was about to end and I cannot have a lapse in coverage b/c of this illness)
2. When I called the third time the operator apologized and said I could do it on-line (?) which I did and she personally took it to the department that would approve it (ok, I'll give an A+ for being helpful here)
3. I got the application I had been asking for in the mail AFTER I'd already applied and been accepted, then I got the SAME application 2 more times in the mail
4. They sent me the bill for the policy they approved me for before they sent me the actual information for the policy
5. I've been incorrectly invoiced already (!?) (I've only had their coverage for 2 months)
6. After my first check was IMMEDIATELY cashed, they continued to send me policy information for policies that didn't apply to me
7. When they did send me my policy information, it was the wrong packet, almost causing me to have a heart attack because it said I have pre-existing condition exclusions (even though that was the whole point of the exorbitant fee I am paying so that wouldn't apply to me)
8. They finally sent me my ID cards, and they are for the wrong policy
9. In the middle of all of this I hadn't had a chance to go to my pharmacy and change over my insurance info. (which I couldn't do anyway because I had the WRONG INFORMATION) and I got horribly sick, desperately needed some medicine only to find out that that particular medicine needs a PRE APPROVAL from my doctor before I can get it.
My friend and I say that there are always bumps in the road when switching from one system to another. But seriously, what exactly about this "system" is working?
This is completely unacceptable to me. What's even more annoying is that despite having just gotten off of the phone with them and feeling like I've worked everything out, I know for a fact that I will be on the phone with them many more times. I already feel like I've had to let go of control in my illness (see previous post!), and now insurance has me by the balls. How is it ok to be this sick and have to deal with this level of incompetence (I was going to say bullshit but wanted to take the high road) on a daily basis? Why aren't we all protesting more?
I have now probably spent at least a total of 1 day of my life waiting on hold for someone at new insurance to pick up. I think for every minute I have been on hold with them it should be exchanged for a reduction in my premium. And for every piece of paper that I have received in the mail that is incorrect, I should be able to get a price reduction on my prescriptions. Or at least a vanishing deductible!!!
Add in the amount of time spent trying to decipher the disability application process and all I'm asking is that it should count towards at least a day of reprieve from being sick. Are you listening universe?
Today I am ok, the flare has passed. I just got off the phone with my health insurance company. I had to switch over from Old Insurance to New Insurance because my Cobra ended. The transition may be more painful than the actual illness I'm dealing with. I have spoken to New Insurance in the past few weeks at least 2 times a week. Here is how this transition went:
1. I couldn't get new insurance company to send me the application for the insurance I was applying for - had to call them 3 times to get it mailed to me because they said I had to fill out a hard copy and I couldn't do it on-line (mind you I was running out of time b/c my Cobra was about to end and I cannot have a lapse in coverage b/c of this illness)
2. When I called the third time the operator apologized and said I could do it on-line (?) which I did and she personally took it to the department that would approve it (ok, I'll give an A+ for being helpful here)
3. I got the application I had been asking for in the mail AFTER I'd already applied and been accepted, then I got the SAME application 2 more times in the mail
4. They sent me the bill for the policy they approved me for before they sent me the actual information for the policy
5. I've been incorrectly invoiced already (!?) (I've only had their coverage for 2 months)
6. After my first check was IMMEDIATELY cashed, they continued to send me policy information for policies that didn't apply to me
7. When they did send me my policy information, it was the wrong packet, almost causing me to have a heart attack because it said I have pre-existing condition exclusions (even though that was the whole point of the exorbitant fee I am paying so that wouldn't apply to me)
8. They finally sent me my ID cards, and they are for the wrong policy
9. In the middle of all of this I hadn't had a chance to go to my pharmacy and change over my insurance info. (which I couldn't do anyway because I had the WRONG INFORMATION) and I got horribly sick, desperately needed some medicine only to find out that that particular medicine needs a PRE APPROVAL from my doctor before I can get it.
My friend and I say that there are always bumps in the road when switching from one system to another. But seriously, what exactly about this "system" is working?
This is completely unacceptable to me. What's even more annoying is that despite having just gotten off of the phone with them and feeling like I've worked everything out, I know for a fact that I will be on the phone with them many more times. I already feel like I've had to let go of control in my illness (see previous post!), and now insurance has me by the balls. How is it ok to be this sick and have to deal with this level of incompetence (I was going to say bullshit but wanted to take the high road) on a daily basis? Why aren't we all protesting more?
I have now probably spent at least a total of 1 day of my life waiting on hold for someone at new insurance to pick up. I think for every minute I have been on hold with them it should be exchanged for a reduction in my premium. And for every piece of paper that I have received in the mail that is incorrect, I should be able to get a price reduction on my prescriptions. Or at least a vanishing deductible!!!
Add in the amount of time spent trying to decipher the disability application process and all I'm asking is that it should count towards at least a day of reprieve from being sick. Are you listening universe?
Saturday, March 5, 2011
Lyme Rehabilitates the Control Freak in Me
When I was little, my Mom used to say I was a "sock and belt roller." Meaning, I was so organized I literally would roll my socks and belts in a drawer so they were all lined up in a row. I made my bed before I went to school. I liked to make "to do" lists. Order made me feel like I was in control. As an adult, that translated to my own apartment, work environment, car etc. Everything needed to be in it's place and orderly. I liked to count things and I liked things to be even. Odd numbers bothered me. If I walked into my kitchen and certain things were out on the counters, I had to put them away to feel like things were "right." Can you say, obsessive compulsive? It never occurred to me that this was over the top, until my roommate in L.A. said it was stressful to live in that environment, because EVERYTHING had to be in it's place. Only then was I able to step outside of myself and see my obsessive need to keep things in order, and laugh at myself because of it. Even my desk at work was like that...every paper where it should be, things neat and clean and orderly. My appearance too...I ironed shirts and pants before work, never allowing myself to leave the house with a wrinkle. Even when I didn't feel well I put on my make-up and tried to present a perfect front.
Up until now, I had never come up against anything in my life that I couldn't organize and order into some kind of sense. And then lyme disease arrived. My whole life I have been about setting a goal and laying out the steps to achieve it, a very orderly system. I keep trying to "organize my illness" and it is almost laughable, because lyme disease will just not jump into line. It is teaching me that not everything has to be rolled up neatly in a row. That sometimes it's really messy, that I'm really messy, that things are ugly and imperfect and that even if I organized the hell out of everything around me, that the illness is going to be there anyway. So I've learned that I can let things go sometimes, that it doesn't matter if everything is clean, shiny and orderly. That I can let myself be ugly, messy and out of control and that I can still be lovable that way. Most importantly that I can still love myself that way. That I don't need the counters to be clean and things to be put away to feel safe. That what I need is my own forgiveness, love and compassion.
Up until now, I had never come up against anything in my life that I couldn't organize and order into some kind of sense. And then lyme disease arrived. My whole life I have been about setting a goal and laying out the steps to achieve it, a very orderly system. I keep trying to "organize my illness" and it is almost laughable, because lyme disease will just not jump into line. It is teaching me that not everything has to be rolled up neatly in a row. That sometimes it's really messy, that I'm really messy, that things are ugly and imperfect and that even if I organized the hell out of everything around me, that the illness is going to be there anyway. So I've learned that I can let things go sometimes, that it doesn't matter if everything is clean, shiny and orderly. That I can let myself be ugly, messy and out of control and that I can still be lovable that way. Most importantly that I can still love myself that way. That I don't need the counters to be clean and things to be put away to feel safe. That what I need is my own forgiveness, love and compassion.
Wednesday, February 2, 2011
Long Term Antibiotic Treatment
I am cautiously optimistic. I have been on a mix of hydrocortisone, mepron and zithromax for about 2 months, and dare I say I am feeling better!? I have been in this place twice before, so I have learned my lesson about getting excited that I am on an upswing. However, this is exactly the case. Somewhere around week 5 or 6 I start feeling changes for the better in my body. The constant muscle ache and burning starts to ease. The nightmares are gone, as are the night sweats. I had been cycling every 30 days with "flares," in which I was vomiting, bed ridden with severe muscle aches, bad headaches, fever, sweats, chills, etc. I have just reached the 30 day mark again and alas, no severe symptoms. Granted, I also had 2 vitamin drips within a week to help thwart the flare I anticipated was coming, but so far so good.
Seeing that it took almost 5 to 6 weeks for me to "turn the corner," it is maddening to continue to read articles that vilify doctors who treat lyme and/or co-infection patients with long term antibiotics. If I had been given only 21 to 28 days of this hydrocortisone/mepron/zithromax mix, I would not have gotten to this place of wellness I am in. At about 3 weeks in, I was as sick as I could be. I am tired of reading literature that says long term antibiotics are damaging and to treat beyond a short term course is fool hardly. I am living it right now, and from personal experience I was not getting well until just recently. I also know from being in this position twice before that stopping the antibiotics too quickly will only result in a relapse. This time, I am in it for the long haul until I get through an entire month without a sick day. Getting "well" is relative though. I am nowhere yet near the person I was before I got sick. I don't know if I ever will be. When I say well, what that means is I am not lying in bed or on the couch in a suicidal depression from the pain and fatigue.
Also, this time I feel like I am finally getting the supplemental treatment I should have gotten a year ago. The adrenal fatigue is being addressed and I am taking supplements & vitamins that are helping counteract all of this medicine. Meaning, things like probiotics and anti-candida supplements. Which, by the way, I found to be necessary even when on a short course of antibiotics in the past say, for a sinus infection. The supplements, hydrocortisone etc were the missing ingredient I think the last time I was on antibiotics and also partially why I relapsed. My cortisol levels are very low and because of that my immune system just couldn't get kick started and take over when the antibiotics were out of my system. I finally feel like I have the right doctor and am on the proper path. Hallelujah! But we shall see...
As the symptoms start to lift again and I emerge from the grayness, I start to question my future and who I will be. I know I can't go back to the person I was before I got sick; working full time, auditioning, working out like a maniac, a busy social life and stress. I know for certain that stress will not physically be allowed to be in my life because it will hurt my body. But my mind can't help but start to formulate a plan for "when I am well," which of course begins to make me feel anxious. So somehow I will have to create a life that allows me to live joyfully and leaves space for healthful living. I don't want to do all of this work to get well, only to fall back into old habits thus creating an environment in my body that allows illness to invade again!
Seeing that it took almost 5 to 6 weeks for me to "turn the corner," it is maddening to continue to read articles that vilify doctors who treat lyme and/or co-infection patients with long term antibiotics. If I had been given only 21 to 28 days of this hydrocortisone/mepron/zithromax mix, I would not have gotten to this place of wellness I am in. At about 3 weeks in, I was as sick as I could be. I am tired of reading literature that says long term antibiotics are damaging and to treat beyond a short term course is fool hardly. I am living it right now, and from personal experience I was not getting well until just recently. I also know from being in this position twice before that stopping the antibiotics too quickly will only result in a relapse. This time, I am in it for the long haul until I get through an entire month without a sick day. Getting "well" is relative though. I am nowhere yet near the person I was before I got sick. I don't know if I ever will be. When I say well, what that means is I am not lying in bed or on the couch in a suicidal depression from the pain and fatigue.
Also, this time I feel like I am finally getting the supplemental treatment I should have gotten a year ago. The adrenal fatigue is being addressed and I am taking supplements & vitamins that are helping counteract all of this medicine. Meaning, things like probiotics and anti-candida supplements. Which, by the way, I found to be necessary even when on a short course of antibiotics in the past say, for a sinus infection. The supplements, hydrocortisone etc were the missing ingredient I think the last time I was on antibiotics and also partially why I relapsed. My cortisol levels are very low and because of that my immune system just couldn't get kick started and take over when the antibiotics were out of my system. I finally feel like I have the right doctor and am on the proper path. Hallelujah! But we shall see...
As the symptoms start to lift again and I emerge from the grayness, I start to question my future and who I will be. I know I can't go back to the person I was before I got sick; working full time, auditioning, working out like a maniac, a busy social life and stress. I know for certain that stress will not physically be allowed to be in my life because it will hurt my body. But my mind can't help but start to formulate a plan for "when I am well," which of course begins to make me feel anxious. So somehow I will have to create a life that allows me to live joyfully and leaves space for healthful living. I don't want to do all of this work to get well, only to fall back into old habits thus creating an environment in my body that allows illness to invade again!
Tuesday, January 18, 2011
How to Support Your Lyme Patient
A few thoughts for those who have a lyme patient in their lives.
Is it a lot to ask a caregiver to know the details of a loved one's illness? I don't think so. I totally take into account and respect that those who aren't sick have lives of their own; jobs, daily stress and their own every day aches, pains, cold, flus, etc. However, small gestures, even just knowing the lingo of a loved one's illness makes them feel respected and cared for.
1. Weight - Don't comment on their weight, whether they've gained or lost. For some reason people think it's okay to say, "oh my gosh, you're SO skinny!" Despite our society's screwed up notion that "skinny = beautiful/healthy" no one would ever say that to a cancer patient. Depending on the person, lyme can make one gain or lose weight, so it's best to just not comment at all. Some people may have lost weight and perhaps "look better," but you can bet they don't feel good at all.
2. Sleep- lyme manifests in different people in different ways; some want to sleep all the time and some can't sleep AT ALL. It doesn't help to make comments about their sleeping all the time. This is not exactly how they would want it either. Unfortunately, the wanting to sleep all the time is a symptom of the illness, so allow the patient the ability to deal with this symptom with no pressure. It is NOT because they are lazy, it is because they are very sick and they literally can't stay awake. On the other end, I can't emphasize enough how prolonged sleep deprivation effects one's personality. It is maddening to be exhausted to your very core, but unable to get a good night's sleep. Be patient with your lymie, you would be cranky too if you hadn't gotten a good night's sleep in 2 or more years.
3. Noise, smells, lights - Lyme can effect the nervous system and the immune system, and thus a lyme patient can become extremely sensitive to noise, smells and bright lights. I now can't stand the smell of green beans or peas. They are totally overwhelming to me and make me nauseous. Being in a crowded place with a lot of people/noise/bright lights is painful. Strong perfume, cleaners, paint etc give me a headache almost immediately. Because of the sleep issues loud noises while I'm falling asleep, during the night, or in the morning sound even louder to me than others. Something that wouldn't wake a normal person up during the night will wake me up. The sleep deprivation is beyond what a normal person thinks of as having "not gotten a good night's sleep." So any help you can give to make the environment for the lyme person odor free, noise free etc helps them enormously.
4. Irritability - Constant pain, lack of sleep, nervous system aggravation - these can all lead to serious irritability and a short temper. I am still struggling with this. I can feel that I am irritable because I am exhausted on a level so deep that it's hard not to just burst out crying most of the time. Remember that your lyme patient is dealing with a lot of different pains etc going on in their body, and then they don't get sleep at all. If you notice irritability etc try to be patient and remember that it is the illness, and not your loved one. Unless of course they were irritable BEFORE lyme disease, and then you're on your own. :)
5. Memory - Lyme can severely affect memory and speech - when I was first very sick I often stuttered, couldn't think of a word, reversed letters at the beginning of a word, and couldn't remember what I was going to say - that has gotten better but I now still have bad short term memory and I can't do anything too detailed yet. My boyfriend has had to hear the same story over and over, and the scary part for me is I have no recollection of having told him before. He says, "honey, you already told me that." Very frustrating for the lymie. So, if you have a lymie in your life, and they keep telling you the same story over and over, or are talking to you and can't remember their thought or word, be patient and understanding.
6. Diet - Diet plays a major part in healing for a lyme patient - yes, it can be tiring and annoying to deal with someone in your life who now can't go out to restaurants, drink alcohol, participate in the social activity of eating. Just think how your lymie feels! It is very non-productive and destructive for the caretaker of a lyme patient to be resistant about the diet changes the lyme patient must make. The lymie is already exhausted, scared and sick, and doesn't have the energy to not only think about and prepare healthy food, but to also argue with you about why they need to eat this way. Anything you can do to encourage them to avoid sugar, unhealthy foods, alcohol etc is helpful. Also, whatever help you can give to prepare healthy meals, freeze things for them to heat up, help them find foods they CAN eat when you go out. All of this serves to help the lymie towards healing.
7. Medicine - Lyme patients often end up taking a LOT of medicine and supplements. For me, it feels like I take medicine ALL day. Sometimes, all you need to say to your lymie is, "did you take your medicine today?" "Do you need me to pick up anything for you at the drugstore?" Also, some lyme patients are in a very bad "lyme fog," and just the simple task of sorting all of these meds/supplements into a pill box could be daunting. Taking a 1/2 hour to help them sort their pills for the week actually reduces their stress and will aid in them remembering to take their meds. Also, for me, each time a new medicine is added there is always an adjustment period. So, if your lymie seems particularly irritable, unwell and/or you notice they are really struggling, it could be they are adjusting to the medicine and/or having a herx. Make sure you know what a Jarisch-Herxheimer response is when your lymie starts their antibiotics.
8. Pain - Lyme disease can be painful and uncomfortable. When I go through a "flare," I am extremely uncomfortable in my body. It hurts to lie on the couch doing nothing. Even on a "good" day, my muscles burn and twitch. As a lyme patient I actually got used to it, and what would possibly considered unbearable for others, a lyme patient must learn to tolerate on a daily basis while they get diagnosed and wait for antibiotics to do their job. Think about it; there are a myriad of symptoms going on in the lyme patient's body at any given time - headache, inflammation of the muscles and joints, nausea, fever, sweats, chills, dizziness, muscles twitches, exhaustion etc. Again, late stage lyme / chronic lyme can manifest in different ways for everyone, but it is still painful! And, once they go on antibiotics they may experience a severe flare of symptoms in reaction to the medicine, so now they are dealing with even more pain. That said, anything to make their environment more comfortable is helpful. For me, hot baths with magnesium really help. Offer to run the water for them and prepare a bath. If they are nauseas, offer to make something to eat that will help quell the nausea. Even just asking, "what can I do to help you feel more comfortable?" goes a long way.
9. Paperwork - HELP!!! - Disability/insurance/doctor's bills/monthly bills etc - I can't emphasize enough how overwhelming it is to try to navigate the maze that is disability and insurance when one has lyme. Not only is a lymie's brain in a complete fog, but again, there is so much physical discomfort it can be hard to just sit at a desk, let alone comprehend confusing information. The disability process can be slow and frustrating, and if the lymie is now unemployed and uninsured that is a whole other paperwork nightmare to deal with. The lyme patient is going to need help! Seriously, who has the mental wherewithal to combat government red tape when one is well, let alone suffering from a debilitating and exhausting illness? Help the lyme patient organize all of their paperwork, look at things on-line with them, help them navigate disability and insurance. Trust me, you will get an education too that you might need yourself some day!
10. Advocate - Lyme is a hot mess. It is not a cut and dry disease where you go to the doc, he tells you what's wrong, you get the medicine, you get better. Well, yes, that can happen if you are lucky enough to get a tick bite, SEE IT, get a rash, get tested in a timely manner and actually get a positive test. In this scenario a few weeks of antibiotics and you are fine.
HOWEVER, that is not who I am talking about here. I am talking about myself, and the rest of the lyme patients who went misdiagnosed or undiagnosed for years, and now have late stage lyme. Lyme is a disease that not only the patient but the caregivers/support team MUST EDUCATE THEMSELVES ABOUT. It is enormously helpful to a lyme patient to have 1 or 2 friends or family members to be on their team, and go to doctor appointments with them! When I first started going to doctors I was so sick it hurt to even sit on the exam table, let alone take in whatever the doctor was saying. I am so grateful I always had either a friend or family member with me. There is an enormous amount of information for a lyme patient to take in. Particularly in the beginning, if you are fighting to get diagnosed. So, if you have a lymie in your life, take the time to read the literature about lyme disease, watch the film, "Under Our Skin," read "Cure Unknown," by Pamela Weintraub, go to the doctor's appointments with him/her, be invested in the person's healing. It will go a long way to getting the person you loved before illness back!
Disclaimer: I am not a doctor. I am a lyme patient and this information is based on my own experience, please do not take this as medical advice. If you or a loved one have or suspect you have lyme disease, please consult a Lyme Literate Doctor for any questions you have.
Is it a lot to ask a caregiver to know the details of a loved one's illness? I don't think so. I totally take into account and respect that those who aren't sick have lives of their own; jobs, daily stress and their own every day aches, pains, cold, flus, etc. However, small gestures, even just knowing the lingo of a loved one's illness makes them feel respected and cared for.
1. Weight - Don't comment on their weight, whether they've gained or lost. For some reason people think it's okay to say, "oh my gosh, you're SO skinny!" Despite our society's screwed up notion that "skinny = beautiful/healthy" no one would ever say that to a cancer patient. Depending on the person, lyme can make one gain or lose weight, so it's best to just not comment at all. Some people may have lost weight and perhaps "look better," but you can bet they don't feel good at all.
2. Sleep- lyme manifests in different people in different ways; some want to sleep all the time and some can't sleep AT ALL. It doesn't help to make comments about their sleeping all the time. This is not exactly how they would want it either. Unfortunately, the wanting to sleep all the time is a symptom of the illness, so allow the patient the ability to deal with this symptom with no pressure. It is NOT because they are lazy, it is because they are very sick and they literally can't stay awake. On the other end, I can't emphasize enough how prolonged sleep deprivation effects one's personality. It is maddening to be exhausted to your very core, but unable to get a good night's sleep. Be patient with your lymie, you would be cranky too if you hadn't gotten a good night's sleep in 2 or more years.
3. Noise, smells, lights - Lyme can effect the nervous system and the immune system, and thus a lyme patient can become extremely sensitive to noise, smells and bright lights. I now can't stand the smell of green beans or peas. They are totally overwhelming to me and make me nauseous. Being in a crowded place with a lot of people/noise/bright lights is painful. Strong perfume, cleaners, paint etc give me a headache almost immediately. Because of the sleep issues loud noises while I'm falling asleep, during the night, or in the morning sound even louder to me than others. Something that wouldn't wake a normal person up during the night will wake me up. The sleep deprivation is beyond what a normal person thinks of as having "not gotten a good night's sleep." So any help you can give to make the environment for the lyme person odor free, noise free etc helps them enormously.
4. Irritability - Constant pain, lack of sleep, nervous system aggravation - these can all lead to serious irritability and a short temper. I am still struggling with this. I can feel that I am irritable because I am exhausted on a level so deep that it's hard not to just burst out crying most of the time. Remember that your lyme patient is dealing with a lot of different pains etc going on in their body, and then they don't get sleep at all. If you notice irritability etc try to be patient and remember that it is the illness, and not your loved one. Unless of course they were irritable BEFORE lyme disease, and then you're on your own. :)
5. Memory - Lyme can severely affect memory and speech - when I was first very sick I often stuttered, couldn't think of a word, reversed letters at the beginning of a word, and couldn't remember what I was going to say - that has gotten better but I now still have bad short term memory and I can't do anything too detailed yet. My boyfriend has had to hear the same story over and over, and the scary part for me is I have no recollection of having told him before. He says, "honey, you already told me that." Very frustrating for the lymie. So, if you have a lymie in your life, and they keep telling you the same story over and over, or are talking to you and can't remember their thought or word, be patient and understanding.
6. Diet - Diet plays a major part in healing for a lyme patient - yes, it can be tiring and annoying to deal with someone in your life who now can't go out to restaurants, drink alcohol, participate in the social activity of eating. Just think how your lymie feels! It is very non-productive and destructive for the caretaker of a lyme patient to be resistant about the diet changes the lyme patient must make. The lymie is already exhausted, scared and sick, and doesn't have the energy to not only think about and prepare healthy food, but to also argue with you about why they need to eat this way. Anything you can do to encourage them to avoid sugar, unhealthy foods, alcohol etc is helpful. Also, whatever help you can give to prepare healthy meals, freeze things for them to heat up, help them find foods they CAN eat when you go out. All of this serves to help the lymie towards healing.
7. Medicine - Lyme patients often end up taking a LOT of medicine and supplements. For me, it feels like I take medicine ALL day. Sometimes, all you need to say to your lymie is, "did you take your medicine today?" "Do you need me to pick up anything for you at the drugstore?" Also, some lyme patients are in a very bad "lyme fog," and just the simple task of sorting all of these meds/supplements into a pill box could be daunting. Taking a 1/2 hour to help them sort their pills for the week actually reduces their stress and will aid in them remembering to take their meds. Also, for me, each time a new medicine is added there is always an adjustment period. So, if your lymie seems particularly irritable, unwell and/or you notice they are really struggling, it could be they are adjusting to the medicine and/or having a herx. Make sure you know what a Jarisch-Herxheimer response is when your lymie starts their antibiotics.
8. Pain - Lyme disease can be painful and uncomfortable. When I go through a "flare," I am extremely uncomfortable in my body. It hurts to lie on the couch doing nothing. Even on a "good" day, my muscles burn and twitch. As a lyme patient I actually got used to it, and what would possibly considered unbearable for others, a lyme patient must learn to tolerate on a daily basis while they get diagnosed and wait for antibiotics to do their job. Think about it; there are a myriad of symptoms going on in the lyme patient's body at any given time - headache, inflammation of the muscles and joints, nausea, fever, sweats, chills, dizziness, muscles twitches, exhaustion etc. Again, late stage lyme / chronic lyme can manifest in different ways for everyone, but it is still painful! And, once they go on antibiotics they may experience a severe flare of symptoms in reaction to the medicine, so now they are dealing with even more pain. That said, anything to make their environment more comfortable is helpful. For me, hot baths with magnesium really help. Offer to run the water for them and prepare a bath. If they are nauseas, offer to make something to eat that will help quell the nausea. Even just asking, "what can I do to help you feel more comfortable?" goes a long way.
9. Paperwork - HELP!!! - Disability/insurance/doctor's bills/monthly bills etc - I can't emphasize enough how overwhelming it is to try to navigate the maze that is disability and insurance when one has lyme. Not only is a lymie's brain in a complete fog, but again, there is so much physical discomfort it can be hard to just sit at a desk, let alone comprehend confusing information. The disability process can be slow and frustrating, and if the lymie is now unemployed and uninsured that is a whole other paperwork nightmare to deal with. The lyme patient is going to need help! Seriously, who has the mental wherewithal to combat government red tape when one is well, let alone suffering from a debilitating and exhausting illness? Help the lyme patient organize all of their paperwork, look at things on-line with them, help them navigate disability and insurance. Trust me, you will get an education too that you might need yourself some day!
10. Advocate - Lyme is a hot mess. It is not a cut and dry disease where you go to the doc, he tells you what's wrong, you get the medicine, you get better. Well, yes, that can happen if you are lucky enough to get a tick bite, SEE IT, get a rash, get tested in a timely manner and actually get a positive test. In this scenario a few weeks of antibiotics and you are fine.
HOWEVER, that is not who I am talking about here. I am talking about myself, and the rest of the lyme patients who went misdiagnosed or undiagnosed for years, and now have late stage lyme. Lyme is a disease that not only the patient but the caregivers/support team MUST EDUCATE THEMSELVES ABOUT. It is enormously helpful to a lyme patient to have 1 or 2 friends or family members to be on their team, and go to doctor appointments with them! When I first started going to doctors I was so sick it hurt to even sit on the exam table, let alone take in whatever the doctor was saying. I am so grateful I always had either a friend or family member with me. There is an enormous amount of information for a lyme patient to take in. Particularly in the beginning, if you are fighting to get diagnosed. So, if you have a lymie in your life, take the time to read the literature about lyme disease, watch the film, "Under Our Skin," read "Cure Unknown," by Pamela Weintraub, go to the doctor's appointments with him/her, be invested in the person's healing. It will go a long way to getting the person you loved before illness back!
Disclaimer: I am not a doctor. I am a lyme patient and this information is based on my own experience, please do not take this as medical advice. If you or a loved one have or suspect you have lyme disease, please consult a Lyme Literate Doctor for any questions you have.
Wednesday, January 5, 2011
"The World Ain't All Sunshine and Rainbows" - Rocky Balboa
I find I don't want to write and don't even know what to write about anymore. I discover that I no longer have hope. I no longer expect a doctor to tell me he has "the answer," because after 2 1/2 years of this I FINALLY get that no one is going to say that. I have accepted that this is just going to keep going on, that getting well is not going to happen over night and that it is going to take time. I have accepted that this is my life right now, and every choice I make has to be about healing.
I have been on Mepron/Zithromax and hydrocortisone for a month now. I do not feel better. In fact, I have had two very bad episodes in which my neck/shoulder/head hurts so bad I can barely get out of bed. With this headache comes severe nausea and muscle inflammation. On one I occasion I had a fever and was vomiting. I am also now sweating profusely while I sleep. If the theory goes that the antibiotics can give you a herx, I could be experiencing something like that. Babesia is a malarial like illness, so sweating, fever, nightmares are par for the course. I never understood what "night terrors" were until this illness took hold of me. I have dreams of demons and visions so terrifying that I still can't forget them. I remind myself that this is not my brain, it is the illness in my brain causing this. Although the nightmares have stopped in the last few days. And my heart, once again, has stopped racing. That happened when I was on doxycycline, and it always feels so good when it calms down.
I continue to do vitamin drips and they help. I definitely have more energy the day after I've had one. Because of these, I get through Christmas Eve and Christmas Day with no pain. A small victory! Although, come New Year's, I find myself curled up in bed, fighting an episode. This one lasts 5 days. It hurts to the core of my being and it is even difficult to get a hot bath, which usually helps the muscle inflammation. I see Dr. X right after this and I feel so defeated. It is during this appointment that I finally get real with myself, and realize that he is not a magician and can't wave his wand and "fix me." I think up to this point I was unrealistically wishing that would still happen, someone would have an answer that would have me better in two weeks time. Although it is hard to face, I am glad for this epiphany. Now I will gather all of my internal resources, dig deep, and fight yet again. Mental toughness doesn't necessarily mean courage, to me it is getting knocked down over and over and over and getting back up anyway. My boyfriend and I watch "Rocky Balboa" on New Year's Eve, (before I get sick), and there is a speech in the film Rocky gives to his son. It resonates for me. "Let me tell you something you already know. The world ain't all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't how hard you hit; it's about how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward. That's how winning is done."
It's a new year. I hope 2011 is my come back year. That's what my sister keeps telling me. I am adding more medicine/supplements to the mix I am already on, and I am trying to practice patience with myself and the healing process. What I want in this new year is; to help more people who are just discovering they have this illness, to be more actively involved in the politics of the disease and to help raise awareness to the best of my ability, to educate everyone around me about the pitfalls of this illness. I want to be less hard on myself, to let go of the anger I feel about being sick for so long, to accept that even if I am sick like this for 3 years that is just a blink in the big picture of my life. For now, I am not making any long term plans. I am just sitting with this illness, not in pain today, grateful for this small moment.
I have been on Mepron/Zithromax and hydrocortisone for a month now. I do not feel better. In fact, I have had two very bad episodes in which my neck/shoulder/head hurts so bad I can barely get out of bed. With this headache comes severe nausea and muscle inflammation. On one I occasion I had a fever and was vomiting. I am also now sweating profusely while I sleep. If the theory goes that the antibiotics can give you a herx, I could be experiencing something like that. Babesia is a malarial like illness, so sweating, fever, nightmares are par for the course. I never understood what "night terrors" were until this illness took hold of me. I have dreams of demons and visions so terrifying that I still can't forget them. I remind myself that this is not my brain, it is the illness in my brain causing this. Although the nightmares have stopped in the last few days. And my heart, once again, has stopped racing. That happened when I was on doxycycline, and it always feels so good when it calms down.
I continue to do vitamin drips and they help. I definitely have more energy the day after I've had one. Because of these, I get through Christmas Eve and Christmas Day with no pain. A small victory! Although, come New Year's, I find myself curled up in bed, fighting an episode. This one lasts 5 days. It hurts to the core of my being and it is even difficult to get a hot bath, which usually helps the muscle inflammation. I see Dr. X right after this and I feel so defeated. It is during this appointment that I finally get real with myself, and realize that he is not a magician and can't wave his wand and "fix me." I think up to this point I was unrealistically wishing that would still happen, someone would have an answer that would have me better in two weeks time. Although it is hard to face, I am glad for this epiphany. Now I will gather all of my internal resources, dig deep, and fight yet again. Mental toughness doesn't necessarily mean courage, to me it is getting knocked down over and over and over and getting back up anyway. My boyfriend and I watch "Rocky Balboa" on New Year's Eve, (before I get sick), and there is a speech in the film Rocky gives to his son. It resonates for me. "Let me tell you something you already know. The world ain't all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't how hard you hit; it's about how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward. That's how winning is done."
It's a new year. I hope 2011 is my come back year. That's what my sister keeps telling me. I am adding more medicine/supplements to the mix I am already on, and I am trying to practice patience with myself and the healing process. What I want in this new year is; to help more people who are just discovering they have this illness, to be more actively involved in the politics of the disease and to help raise awareness to the best of my ability, to educate everyone around me about the pitfalls of this illness. I want to be less hard on myself, to let go of the anger I feel about being sick for so long, to accept that even if I am sick like this for 3 years that is just a blink in the big picture of my life. For now, I am not making any long term plans. I am just sitting with this illness, not in pain today, grateful for this small moment.
Wednesday, December 8, 2010
Saturday, December 4, 2010
Lymie: Highway to Hell
Life stuff doesn’t seem so scary
after I looked death right in the eye
lying on cold bathroom tiles
and then decided to get up
I know what determination is
having nothing left inside
getting up every morning
even while I cry
I know what strength is
fighting from emptiness
because there is no choice
but to give it another try
I know what faith is
believing, in the pain,
that another day will come
and ease me from this hell
I know what hope is
holding onto silent air
praying at the end of this
that I will be well
Life stuff doesn’t seem so scary
after I looked death right in the eye
lying on cold bathroom tiles
and then decided to get up
after I looked death right in the eye
lying on cold bathroom tiles
and then decided to get up
I know what determination is
having nothing left inside
getting up every morning
even while I cry
I know what strength is
fighting from emptiness
because there is no choice
but to give it another try
I know what faith is
believing, in the pain,
that another day will come
and ease me from this hell
I know what hope is
holding onto silent air
praying at the end of this
that I will be well
Life stuff doesn’t seem so scary
after I looked death right in the eye
lying on cold bathroom tiles
and then decided to get up
Thursday, November 25, 2010
Happy Thanksgiving - Grateful
I am grateful for the unending, unconditional love and support of; my sisters, parents, brother-in-law, nieces and nephew, boyfriend and friends. I am grateful for friends (you know who you are), who have continued to check in on me, make me laugh, remind me who I was before I got sick and not let that part of me fade away. I am grateful to have an amazing man in my life who fell in love with me even though I felt broken. I am grateful I am still standing after the past 2 years. I am grateful to have a confirmed diagnosis. I am grateful that I am lucky enough to have the amazing people in my life that I do. I am grateful that I got sick, because I needed to learn the hardest lessons and I wasn't listening before. I am grateful that I am privileged to understand what it means to honor and appreciate my body. I am grateful I truly understand what it means to say, "you don't have anything if you don't have your health." I am grateful that illness taught me what the real priorities in life are. I am grateful that illness showed me that the only things that matter in life are the connections I have with others, and to help and be of service to others. I am grateful that illness taught me perspective and that my heroes are now the doctors and researchers who are literally saving lyme patient's lives every day. I am grateful to have met other lyme patients, whose courage has shown me the way. I am grateful that I have the means to see a doctor who can help me, get the medicine I need, and to be in a place I can heal. I am grateful that this illness showed me I am stronger than I ever knew I was.
Wednesday, November 24, 2010
Igenex Test Results - Babesiosis Confirmed
I see Dr. X. for my follow up appointment. My sister and Mom go with me because they have been on this journey with me and are hoping, like me, we will finally get an answer. Up to this point, we have been going on the assumption I have lyme based on a clinical diagnosis. My Igenex test results show borrelia burgdorferi (Lyme) result and a positive babesiosis (co-infection). After a year and a half of limbo, too many doctors to count and questioning my own sanity, I have validation. I hear a character on a show say, "there is no place as lonely as not being believed." I wouldn't have known what he meant prior to this experience, but after having my own doctors make me feel like I am crazy, I understand. Lyme testing is unreliable, and there are many factors that come into play to determine if someone gets a positive test; timing of the test, the person's immune system, what kind of test, amongst others. Lyme patients who don't remember a tick and never saw a rash have to insist that their doctor test them, often to loud protests from said doctor. I had Bell's Palsy (paralysis of the left side of my face) which is a classic lyme symptom a year and a half ago. I asked the neurologist at the time if it could be lyme and he gave me a resounding 'no." I was eventually tested with the standard Western Blot and Elisa tests by various rheumatologists, always getting a negative result. What I didn't know then that I know now is that approximately 50% of patients who have lyme get a negative test result. If I had just gone to Igenex in the beginning, I could have avoided almost 2 years of pain, frustration and fear. And saved a lot of money!
Dr. X. also tells me that my cortisol levels are below normal range. In a healthy person, cortisol levels rise in the morning upon waking and slowly go down throughout the day, hitting a low point in the evening so one can go to sleep. My cortisol level is in a flatline, with no spike in the morning. This explains the severe exhaustion upon waking. When the cortisol doesn't go up, I have no energy to get out of bed. I asked every doctor along the way about my cortisol levels, and only one of them entertained the idea that there could be a problem with it. She tested me for it, but told me it "was fine." Perhaps at the time it was, but I have told my sister for two years that I have constantly felt like I am in "fight or flight" mode and that something is wrong. I learn from this experience to never doubt my own intuition again.
Dr. X. gives me Mepron and Zithromax (standard for babesia) and Hydrocortisone. The hydrocortisone (a steroid) is for the cortisol. There is no "synthetic" hormone of cortisol, like there is for progesterone or estrogen. But hydrocortisone, (in small doses), closely resembles cortisol and can help raise the levels. This, hopefully, will allow my sleep to regulate. It has been SO SO SO long since I have had a night's sleep in which I slept through the entire night without waking from nightmares, sweats, or noises. What a joy it will be to actually SLEEP. He also gives me some supplements to help balance what the antibiotics will do to my gut. I am now taking:
Kolorex & Probiotics (candida)
GI Caps (for the gut)
Vitamin D
Potassium/Magnesium
Mepron
Zithromax
Hydrocortisone
I feel like I have been in a dark tunnel for two years. Once in a while a very tiny shaft of light would burst through in the form of a day here and there of feeling good, or the love of my family, friends, and boyfriend. Along this journey, I have been so deeply depressed. Some days there has been no hope and I had no idea how I was going to get through the day. Now that I have a confirmed diagnosis I can finally see a big light at the end of the tunnel and have something good to move towards. I can allow myself the luxury of thinking what it will feel like to actually run again, or have the energy to get through a day. I know I still have a hard road ahead while I fight to recover, but at least now I am not in some infinite limbo. I have hope in my heart again for a future that I couldn't see for a long time.
Dr. X. also tells me that my cortisol levels are below normal range. In a healthy person, cortisol levels rise in the morning upon waking and slowly go down throughout the day, hitting a low point in the evening so one can go to sleep. My cortisol level is in a flatline, with no spike in the morning. This explains the severe exhaustion upon waking. When the cortisol doesn't go up, I have no energy to get out of bed. I asked every doctor along the way about my cortisol levels, and only one of them entertained the idea that there could be a problem with it. She tested me for it, but told me it "was fine." Perhaps at the time it was, but I have told my sister for two years that I have constantly felt like I am in "fight or flight" mode and that something is wrong. I learn from this experience to never doubt my own intuition again.
Dr. X. gives me Mepron and Zithromax (standard for babesia) and Hydrocortisone. The hydrocortisone (a steroid) is for the cortisol. There is no "synthetic" hormone of cortisol, like there is for progesterone or estrogen. But hydrocortisone, (in small doses), closely resembles cortisol and can help raise the levels. This, hopefully, will allow my sleep to regulate. It has been SO SO SO long since I have had a night's sleep in which I slept through the entire night without waking from nightmares, sweats, or noises. What a joy it will be to actually SLEEP. He also gives me some supplements to help balance what the antibiotics will do to my gut. I am now taking:
Kolorex & Probiotics (candida)
GI Caps (for the gut)
Vitamin D
Potassium/Magnesium
Mepron
Zithromax
Hydrocortisone
I feel like I have been in a dark tunnel for two years. Once in a while a very tiny shaft of light would burst through in the form of a day here and there of feeling good, or the love of my family, friends, and boyfriend. Along this journey, I have been so deeply depressed. Some days there has been no hope and I had no idea how I was going to get through the day. Now that I have a confirmed diagnosis I can finally see a big light at the end of the tunnel and have something good to move towards. I can allow myself the luxury of thinking what it will feel like to actually run again, or have the energy to get through a day. I know I still have a hard road ahead while I fight to recover, but at least now I am not in some infinite limbo. I have hope in my heart again for a future that I couldn't see for a long time.
Tuesday, November 16, 2010
It's My Life
"I just wanna live while I'm alive." Love these lyrics. Because living like this is not living at all.
It's My Life lyrics
Songwriters: Bon Jovi, Jon; Martin, Max; Sambora, Richard S;
This ain't a song for the brokenhearted
No silent prayer for the faith departed
And I ain't gonna be just a face in the crowd
You're gonna hear my voice when I shout it out loud
It's my life
It's now or never
I ain't gonna live forever
I just wanna live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life
This is for the ones who stood their ground
For Tommy and Gina who never backed down
Tomorrow's getting harder, make no mistake
Luck ain't even lucky, gotta make your own breaks
It's my life
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life
You better stand tall
When they're calling you out
Don't bend, don't break
Baby, don't back down
It's my life
It's now or never
'Cause I ain't gonna live forever
I just wanna live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
(It's my life)
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life!
It's My Life lyrics
Songwriters: Bon Jovi, Jon; Martin, Max; Sambora, Richard S;
This ain't a song for the brokenhearted
No silent prayer for the faith departed
And I ain't gonna be just a face in the crowd
You're gonna hear my voice when I shout it out loud
It's my life
It's now or never
I ain't gonna live forever
I just wanna live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life
This is for the ones who stood their ground
For Tommy and Gina who never backed down
Tomorrow's getting harder, make no mistake
Luck ain't even lucky, gotta make your own breaks
It's my life
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life
You better stand tall
When they're calling you out
Don't bend, don't break
Baby, don't back down
It's my life
It's now or never
'Cause I ain't gonna live forever
I just wanna live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
(It's my life)
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive
(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life!
Tuesday, November 9, 2010
From Hell to Glitter in the Air
I've just spent a few days in hell. I took the antibiotic minocycline and it made me so dizzy I couldn't stand up from the couch. When I did, I was weaving all over the place and bumping into walls. I was so nauseous I couldn't eat, but the ironic beauty of antibiotics is that I must eat to take them. Gr. My body is so out of whack again and I can't seem to get it back on track. I am experiencing severe pain, like I experienced 2 years ago at this exact time before everything came crumbling down. At least this time I am armed with information and know that a) I'm not going to die, b) I have a great doctor in my corner who is fighting this with me and c) family and friends know what is going on and I have a lot of love and support.
I feel like I'm hanging on by my fingernails when I am in that much pain and it is really hard to find the willpower to get out of bed in the morning. I lie there and for a few minutes I feel kind of okay, but I know that as soon as my feet touch the floor the pain will come rushing back. I don't know what the day ahead is going to hold for me, whether I will feel ok or be so sick by dinner that I can't move. I'm experiencing new symptoms now too that are scary; my actual bones are starting to ache, and sometimes when I walk the bones in my left foot have stabbing pains running through them.
My friend H, who also has lyme, encourages me to let go of the facade that I am strong and can do this on my own. She asks me where my fortitude comes from, and supports me being honest with people around me about how much I'm struggling. I don't know why I'm still doing this, but it's like I want to protect my family, boyfriend and people close to me from knowing how much pain I am really in. I think there is a part of me that feels like they can't handle that level of pain. But she reminds me that they are adults, and that they can decide what they can handle. So I have a conversation with my mother in which I fall apart. I have been holding it together for months, trying to mentally will myself into being healthy. I have been in complete denial that I am not getting better. It is just too hard to accept that I am going down the rabbit hole again and that this time it might be much worse. I have been trying so hard to be normal; social engagements, trips, and plans on my calendar. I've had to cancel most of it because I can't get up off of the couch. I have been in denial too about the symptoms that are coming back. I just can't accept that my body is betraying me again. My Mom takes matters into her own hands and calls Dr. X. He prescribes some painkillers and also suggests I come in immediately for a vitamin i.v. drip. My Dad takes me and it is the best thing I could have done. As soon as the drip gets into my body I feel a release that is beautiful. I start to get drowsy and cozy and my body feels warm and good. Who knew vitamins and minerals could make me feel like this!? It's a party in body, but this time in a good way!
I have an acupressure session that is long and intense. The women who do the session are true healers and touch knots and pain in my body that feel like they have been there for months. I feel release so deep that I alternately sweat and have chills. They touch certain tense places on my body and ask me what I am holding onto there. When they touch my solar plexus it hurts so much I almost throw up. The wise woman, D., says, "what is being held here?" I tell her, "my fear that I'm going to die and that I am so alone." As soon as I say that, the pain releases. Amazing.
I watch a "Behind the Music" on the artist Pink. What I am inspired by is that she has always done what she wants, said what she wants, and followed her gut. I wonder how she would handle having this illness and realize that she would probably do everything she could to kick it's ass and would become a spokeswoman for the disease. She is definitely someone who is not afraid to speak out. This performance at the 2010 Grammy's was incredible. It was vulnerable and ballsy at the same time. It reminds me that I can be both too.
I feel like I'm hanging on by my fingernails when I am in that much pain and it is really hard to find the willpower to get out of bed in the morning. I lie there and for a few minutes I feel kind of okay, but I know that as soon as my feet touch the floor the pain will come rushing back. I don't know what the day ahead is going to hold for me, whether I will feel ok or be so sick by dinner that I can't move. I'm experiencing new symptoms now too that are scary; my actual bones are starting to ache, and sometimes when I walk the bones in my left foot have stabbing pains running through them.
My friend H, who also has lyme, encourages me to let go of the facade that I am strong and can do this on my own. She asks me where my fortitude comes from, and supports me being honest with people around me about how much I'm struggling. I don't know why I'm still doing this, but it's like I want to protect my family, boyfriend and people close to me from knowing how much pain I am really in. I think there is a part of me that feels like they can't handle that level of pain. But she reminds me that they are adults, and that they can decide what they can handle. So I have a conversation with my mother in which I fall apart. I have been holding it together for months, trying to mentally will myself into being healthy. I have been in complete denial that I am not getting better. It is just too hard to accept that I am going down the rabbit hole again and that this time it might be much worse. I have been trying so hard to be normal; social engagements, trips, and plans on my calendar. I've had to cancel most of it because I can't get up off of the couch. I have been in denial too about the symptoms that are coming back. I just can't accept that my body is betraying me again. My Mom takes matters into her own hands and calls Dr. X. He prescribes some painkillers and also suggests I come in immediately for a vitamin i.v. drip. My Dad takes me and it is the best thing I could have done. As soon as the drip gets into my body I feel a release that is beautiful. I start to get drowsy and cozy and my body feels warm and good. Who knew vitamins and minerals could make me feel like this!? It's a party in body, but this time in a good way!
I have an acupressure session that is long and intense. The women who do the session are true healers and touch knots and pain in my body that feel like they have been there for months. I feel release so deep that I alternately sweat and have chills. They touch certain tense places on my body and ask me what I am holding onto there. When they touch my solar plexus it hurts so much I almost throw up. The wise woman, D., says, "what is being held here?" I tell her, "my fear that I'm going to die and that I am so alone." As soon as I say that, the pain releases. Amazing.
I watch a "Behind the Music" on the artist Pink. What I am inspired by is that she has always done what she wants, said what she wants, and followed her gut. I wonder how she would handle having this illness and realize that she would probably do everything she could to kick it's ass and would become a spokeswoman for the disease. She is definitely someone who is not afraid to speak out. This performance at the 2010 Grammy's was incredible. It was vulnerable and ballsy at the same time. It reminds me that I can be both too.
Monday, November 1, 2010
Running in the Rain
I go to my college to support my friend D. as he is inducted into our Athletic Hall of Fame. It is a good and bad weekend. It is great to see people I haven't seen in a very long time, but it is also hard because I am very sick and struggling to get out of bed. I have the headache that is relentless, my neck is stiff, my period is killing me. By sheer force of will and medication I get myself to the dinner.
The dinner and athletes inspire me and remind me how when I was an athlete I went to practice every day no matter how cold, windy, wet, or nasty it was. It reminds me that I spent hours throwing a lacrosse ball into the net, lifting weights, running miles in the rain, just to be better. And sometimes, despite my hard work and that of my teammates, even after leaving our guts on the field and playing as hard as we could, we still lost. But the next day, I went to practice again. I didn't complain, I didn't think, "why do I even bother going to practice if we're going to just lose?" I showed up, I ran my drills, I joked with teammates, and I marched forward. It is like that with lyme disease; I do my research, I eat healthy, I try to get to yoga, do what the doctor says, take my medicine even if it hurts. But I feel like there are so many days that I lose. But thinking about being an athlete inspires me because after a loss I never would have made the choice to just quit. It never would have crossed my mind. If anything, it made me more fired up to go back to practice the next day and play harder.
I am so depressed today because I am now going to start another round of antibiotics and am waiting for test results yet again. But if the choice is to give up or move forward I realize that the athlete inside of me will not allow me to give up. I will keep relentlessly running in the rain.
The dinner and athletes inspire me and remind me how when I was an athlete I went to practice every day no matter how cold, windy, wet, or nasty it was. It reminds me that I spent hours throwing a lacrosse ball into the net, lifting weights, running miles in the rain, just to be better. And sometimes, despite my hard work and that of my teammates, even after leaving our guts on the field and playing as hard as we could, we still lost. But the next day, I went to practice again. I didn't complain, I didn't think, "why do I even bother going to practice if we're going to just lose?" I showed up, I ran my drills, I joked with teammates, and I marched forward. It is like that with lyme disease; I do my research, I eat healthy, I try to get to yoga, do what the doctor says, take my medicine even if it hurts. But I feel like there are so many days that I lose. But thinking about being an athlete inspires me because after a loss I never would have made the choice to just quit. It never would have crossed my mind. If anything, it made me more fired up to go back to practice the next day and play harder.
I am so depressed today because I am now going to start another round of antibiotics and am waiting for test results yet again. But if the choice is to give up or move forward I realize that the athlete inside of me will not allow me to give up. I will keep relentlessly running in the rain.
Saturday, October 30, 2010
Doctor #17
I see Dr. X. and finally, FINALLY, I might be in the right place. It is a good day to see him because I am on Day 2 of my period and I can feel the toxicity in my body. I am practically doubled over in excruciating pain from the poisonous feeling in my abdomen. I am so hesitant to have hope anymore, because each time I see a new doc I think this will be the one who helps me get well. I finally feel like I am with someone who is speaking my language, and all of the tests I have been wanting doctors to do all along are finally going to get done. He is sending my blood to Igenex to be tested for the lyme bacteria, and he suspects that based on my symptoms I possibly have babesia and bartonella as well. He is doing a battery of tests; stool testing, saliva testing and urine testing for toxicity. He is doing the IgG (immunoglobulin) tests for food intolerances, which I have read about and are different from the standard "skin scratch allergy tests." I had asked my allergist about this previously and they told me they didn't do this test. It is possible to have food intolerances that would not be considered a typical "allergy." The food intolerances are potentially what further make me feel toxic and make my muscles get inflamed any time I eat one of these foods. He is testing me also for a host of other bacteria, some I have never heard of and no one had thought to test me for before.
I read my journal to him from the past year, and how each time I was on doxycyline I clearly got better. It is obvious to both of us that the antibiotics were making me well. His theory though is that I am getting sick again because perhaps the doxy addressed the Q fever but clearly didn't address co-infections. I tell him the doxy was brutal on my stomach and made me extremely nauseous, so he decides he will put me on minocycline right away and that I am to come back in 4 weeks for my test results and to see where we go from here. He gives me supplements for yeast (because of the antibiotics), sleep aids, and something for the potential nausea. I am losing track of everything I am going to take in a day. I am also given a diet to follow, but luckily I am already pretty much following this so it won't be too difficult to do. It is easy to take sugar and things I used to love out of my diet when I know the painful consequences of eating these things.
He tells me that every single woman in his practice, it doesn't matter if she has lyme, lupus, chronic fatigue, epstein barr, etc gets much more sick during her period. He tells me that menses puts the body in a more vulnerable state, and that anything you are keeping in check during the rest of the month, will rear it's ugly head when you menstruate. Ovulation can do the same thing. He says we need to do a multi-pronged approach to the healing, and that the problem thus far is that I have been working on getting one thing healed at a time, but that then something else takes over and I continue to be sick. We must get my immune system back in shape so it can stay "on top" of the various infections. I am anxious because I know what putting antibiotics into my body will do; yeast infections and nausea. On the other hand, I am not sleeping at all again and having nightmares. But I remember that the doxy made that go away. I am at the starting line again so I am digging my heels in and gritting my teeth. I am determined to win.
I read my journal to him from the past year, and how each time I was on doxycyline I clearly got better. It is obvious to both of us that the antibiotics were making me well. His theory though is that I am getting sick again because perhaps the doxy addressed the Q fever but clearly didn't address co-infections. I tell him the doxy was brutal on my stomach and made me extremely nauseous, so he decides he will put me on minocycline right away and that I am to come back in 4 weeks for my test results and to see where we go from here. He gives me supplements for yeast (because of the antibiotics), sleep aids, and something for the potential nausea. I am losing track of everything I am going to take in a day. I am also given a diet to follow, but luckily I am already pretty much following this so it won't be too difficult to do. It is easy to take sugar and things I used to love out of my diet when I know the painful consequences of eating these things.
He tells me that every single woman in his practice, it doesn't matter if she has lyme, lupus, chronic fatigue, epstein barr, etc gets much more sick during her period. He tells me that menses puts the body in a more vulnerable state, and that anything you are keeping in check during the rest of the month, will rear it's ugly head when you menstruate. Ovulation can do the same thing. He says we need to do a multi-pronged approach to the healing, and that the problem thus far is that I have been working on getting one thing healed at a time, but that then something else takes over and I continue to be sick. We must get my immune system back in shape so it can stay "on top" of the various infections. I am anxious because I know what putting antibiotics into my body will do; yeast infections and nausea. On the other hand, I am not sleeping at all again and having nightmares. But I remember that the doxy made that go away. I am at the starting line again so I am digging my heels in and gritting my teeth. I am determined to win.
Thursday, October 21, 2010
Pain trumps ego
I spend 7 days with a headache that has me in bed, fetal position, unable to move. There are hours of relief in between because of Zomig nasal spray (prescribed for migraines), in which I can function, but otherwise, when it comes back, I can barely breathe. It makes me nauseous, my neck and shoulder are stiff and swollen, my uterus and lower back hurts, my muscles burn and ache, my upper back is inflamed and burning. It's a party in my body.
I am still on lots of supplements and they are still definitely making a difference, but when this headache comes and I am so sick for so many days, I wonder again if I need to go back to a lyme disease diagnosis. It seems like at this point after a Q Fever diagnosis (which in theory is gone because of the 4 months of doxycycline), and now 2 months of supplements, I shouldn't be feeling like crap on a daily basis. I am definitely better, but still not the healthy person I was before I got sick. Every day there is something; burning in my muscles, twinges, pins and needles, painful upper back, muscles that feel tired and sore, not sleeping again, irritability, depression, and searching for words. F@#K!
I decide to see Dr. X, an integrative medicine specialist, who was actually recommended to me a year ago but I didn't see him because I had a doctor and felt I was being treated. Dr. X comes highly recommended again and so I take that as a sign I should see him. I'm waiting for an appointment. I fill out the 20 page intake paperwork and it is the most comprehensive I have seen. There are questions on there that not one doctor asked me ever in my journey. I also take that as a sign he knows what he is doing. It is depressing also though to be preparing for yet another doctor's appointment, having hope that maybe this doctor will have some reasonable and helpful ideas as to how I can stop feeling like crap. I WANT MY LIFE BACK!
I spend a weekend feeling very sorry for myself. I cry for 3 days and can't stop. I think the prolonged pain has taken it's toll and put me on my knees. This seems familiar though because I've been here before. Finally, I have a meeting with myself and decide that I can keep crying or I can take matters into my own hands and get moving. I go grocery shopping and buy only healthy, organic foods and make a promise to myself that I am going to eat no sugar, no dairy, no bread, no glutamates, no aspartates, no preservatives etc, for the next month. I may not be able to control what is happening in my body, but I sure as hell can control what I am putting into it. I decide that I am going to start going for long walks again, and find a way to exercise more, even if it's just slow stretching. I will think of this as the Olympics of my body, and so whatever it takes to make me well, I am going to do it.
The silver lining in all of this pain is that I realize my ego has shrugged it's shoulders and taken a hike. It's kind of a relief. That amount of prolonged pain is so intense that it demands attention and literally everything else goes away. I can't read, watch TV, or even talk on the phone. The only thing I can do is lie there and get through each painful second, which seem like an hour, waiting for it to subside. It makes the moments when I feel well so much more precious. Pain has kicked my ego's ass, and I suppose I am being held down by it because I still hadn't gotten the message. But after these last days of pain I am finally, after a year and half, starting to get it; slow down, stop resisting, mindfulness, stop being so hard on myself, relax, stop trying to control everything, give in, give over, breathe. Terrifying.
I am still on lots of supplements and they are still definitely making a difference, but when this headache comes and I am so sick for so many days, I wonder again if I need to go back to a lyme disease diagnosis. It seems like at this point after a Q Fever diagnosis (which in theory is gone because of the 4 months of doxycycline), and now 2 months of supplements, I shouldn't be feeling like crap on a daily basis. I am definitely better, but still not the healthy person I was before I got sick. Every day there is something; burning in my muscles, twinges, pins and needles, painful upper back, muscles that feel tired and sore, not sleeping again, irritability, depression, and searching for words. F@#K!
I decide to see Dr. X, an integrative medicine specialist, who was actually recommended to me a year ago but I didn't see him because I had a doctor and felt I was being treated. Dr. X comes highly recommended again and so I take that as a sign I should see him. I'm waiting for an appointment. I fill out the 20 page intake paperwork and it is the most comprehensive I have seen. There are questions on there that not one doctor asked me ever in my journey. I also take that as a sign he knows what he is doing. It is depressing also though to be preparing for yet another doctor's appointment, having hope that maybe this doctor will have some reasonable and helpful ideas as to how I can stop feeling like crap. I WANT MY LIFE BACK!
I spend a weekend feeling very sorry for myself. I cry for 3 days and can't stop. I think the prolonged pain has taken it's toll and put me on my knees. This seems familiar though because I've been here before. Finally, I have a meeting with myself and decide that I can keep crying or I can take matters into my own hands and get moving. I go grocery shopping and buy only healthy, organic foods and make a promise to myself that I am going to eat no sugar, no dairy, no bread, no glutamates, no aspartates, no preservatives etc, for the next month. I may not be able to control what is happening in my body, but I sure as hell can control what I am putting into it. I decide that I am going to start going for long walks again, and find a way to exercise more, even if it's just slow stretching. I will think of this as the Olympics of my body, and so whatever it takes to make me well, I am going to do it.
The silver lining in all of this pain is that I realize my ego has shrugged it's shoulders and taken a hike. It's kind of a relief. That amount of prolonged pain is so intense that it demands attention and literally everything else goes away. I can't read, watch TV, or even talk on the phone. The only thing I can do is lie there and get through each painful second, which seem like an hour, waiting for it to subside. It makes the moments when I feel well so much more precious. Pain has kicked my ego's ass, and I suppose I am being held down by it because I still hadn't gotten the message. But after these last days of pain I am finally, after a year and half, starting to get it; slow down, stop resisting, mindfulness, stop being so hard on myself, relax, stop trying to control everything, give in, give over, breathe. Terrifying.
Under Our skin Screening and LDA/Columbia Conference
The screening of Under Our Skin goes well. I think there are maybe 40 to 50 people who attend and what's nice to see is people who don't have lyme have come to educate themselves about the illness. My boyfriend, KG, helps me set up and put out all of the lyme brochures and pamphlets, and my sister and parents come to support me. KG hasn't seen the film, and I know it's a lot to take in. When the film ends there is sort of a stunned silence, and I know the film has gotten it's message across. I don't think anyone is quite prepared to watch the film and to learn how incredibly debilitating the disease can be. And also to learn that it's not just about "borrelia burgdorferi" (the lyme bacteria) anymore. But it's also about co-infections, that patients have to actually fight to get care, and that doctors are losing their licenses because of the care they do give. I meet a woman who attends the screening who also has Q Fever, which validates for me I possibly did pick it up from a tick, and not in Ireland. I wonder if it is becoming a more prevalent co-infection too?
I attend the Lyme Disease Association and Columbia conference in Philadelphia. It is a 3 day conference with lyme disease doctors, specialists and others with experience with lyme. It is informative but also depressing for me. I feel overwhelmed by the amount of information, and also that here I am with all of these people who are so incredibly intelligent and fighting lyme on the front lines, but I am still sick. There is a woman who is an entomologist and she tells us that from her research they have found that ticks are now in 26 of the 50 states, and that most are now carrying many different bacteria. She tells us that Rocky Mountain Spotted Fever takes only 10 hours to infect someone. Something else she tells us is that ticks can find humans 5 different ways; our CO2, our movement, body heat, vibration and sound. Wow. That really creeps me out! Another piece of advice she gives which I will NEVER forget; if you have been hiking or in an area with tick exposure, when you get home make sure to put your clothes in the dryer and do NOT leave them on the floor in your room next to your bed. While you are sleeping the ticks will find their way to you because of the above 5 reasons!
What is frustrating too is being at the conference and knowing that despite all of this fantastic research and scientific/medical evidence of what is happening with ticks/patients, it is not getting to the doctors fast enough so that they are able to recognize lyme disease in their patients and thus treat them in a timely way. There is still so much ignorance, resistance and fear in the medical community, even though patients are right in front of doctors, sick, and getting worse. I realize that is why it's so important for patients to continue to fight for awareness, better treatment options, and also on the political front.
I attend the Lyme Disease Association and Columbia conference in Philadelphia. It is a 3 day conference with lyme disease doctors, specialists and others with experience with lyme. It is informative but also depressing for me. I feel overwhelmed by the amount of information, and also that here I am with all of these people who are so incredibly intelligent and fighting lyme on the front lines, but I am still sick. There is a woman who is an entomologist and she tells us that from her research they have found that ticks are now in 26 of the 50 states, and that most are now carrying many different bacteria. She tells us that Rocky Mountain Spotted Fever takes only 10 hours to infect someone. Something else she tells us is that ticks can find humans 5 different ways; our CO2, our movement, body heat, vibration and sound. Wow. That really creeps me out! Another piece of advice she gives which I will NEVER forget; if you have been hiking or in an area with tick exposure, when you get home make sure to put your clothes in the dryer and do NOT leave them on the floor in your room next to your bed. While you are sleeping the ticks will find their way to you because of the above 5 reasons!
What is frustrating too is being at the conference and knowing that despite all of this fantastic research and scientific/medical evidence of what is happening with ticks/patients, it is not getting to the doctors fast enough so that they are able to recognize lyme disease in their patients and thus treat them in a timely way. There is still so much ignorance, resistance and fear in the medical community, even though patients are right in front of doctors, sick, and getting worse. I realize that is why it's so important for patients to continue to fight for awareness, better treatment options, and also on the political front.
Thursday, September 9, 2010
Delco Lyme Support Group
I have started a lyme support group for my county. It is the Delco Lyme Support Group for Delaware County, PA. Info is on Facebook as well!
When: Meetings are the third Thursday of every month, 7:00 PM
Where: Brookhaven Community Center
2 Cambridge Road
Brookhaven, PA 19015
Contact: delcolyme@palyme.org
When: Meetings are the third Thursday of every month, 7:00 PM
Where: Brookhaven Community Center
2 Cambridge Road
Brookhaven, PA 19015
Contact: delcolyme@palyme.org
Tuesday, August 17, 2010
The Wellness Quest continues, I am a Hermit Crab
I see Dr. W, (the gynecologist/holistic doctor) for a follow up to get my test results. It is confirmed from my cortisol (stress hormones) and DHEA levels that I have adrenal gland exhaustion/chronic fatigue. What this means is that while in normal people their "fight or flight" response regulates after a threat goes away, my response is in constant "fight or flight" and never regulates. This explains beyond the Q fever why I had insomnia, because cortisol also goes up and down during a typical day, but for me it stays elevated when it is time to go to sleep and keeps me awake/wakes me up in the middle of the night! More information on cortisol in the links to the right. There are also other factors working here; my magnesium levels are low (this can contribute to migraines and headaches as well as inflammation), and my Vitamin D is low. I am relieved but also angry when I get these test results. I was researching all of these things a YEAR ago, and asking various doctors about this. However, many conventional doctors do not recognize adrenal dysfunction if you have a test result that is not very low out of normal range, or very high. I am somewhere in the middle of what is considered "normal," let's say the criteria is 100-1000, and I scored 750. Although I didn't score 50 or 2000, in the range of 100 to 1000, 750 is HIGH. Therefore, other docs didn't discuss any kind of adrenal dysfunction, but that is what I have been dealing with all along, and then Q fever came along with a nasty bacterial infection and I was SCREWED.
Now that I know what I am fighting, it is time to trust that the information I have is the correct information and that I must go with the flow and take the supplements I am given. I am now on NINE different supplements, some of which I take 3x/day. In addition to the supplements I was given last time, I am now also given Vitamin D, Magnesium and Phyto Caps for Adrenal Glands. It's a lot to remember to take in a day, but I say BRING. IT. ON. One silver lining in this is that my progesterone and estrogen levels are actually normal, so I am grateful that I don't have to worry about adding that to this already delicate mix.
I've been taking the supplements from my last visit for about 3 weeks now, and already I see a slight difference. The nausea that I feel all of the time is starting to dissipate, and I haven't felt sick from food for about 2 weeks. I ovulated last week and for the first time in a LONG time I had no inflammation in my neck, no tension headache and no toxic feeling in my uterus. Hallelujah! I did get a migraine, but it was easily dispelled with Zomig nasal spray. Dr. W. surprisingly tells me that I need to stop exercising. She is the first doc to say this. Her point is that vigorous exercise actually raises the cortisol levels and that is something I can't do right now. I am to take long, slow walks and to do very gentle yoga, and that is it. She also recommends that I start a meditation practice, because a major part of the cortisol issue is stress and negative emotions. She is not the first person to recommend meditation, so it's time I listen. It's amazing that always worrying about the really stupid, small things in life contributed to making me so sick.
Right now I feel like a hermit crab between shells. I am no longer the person I had become when I was living in Los Angeles, so I don't identify with my past self at all. However, I have no idea who I will be in the future. I am that vulnerable hermit crab, growing but not knowing where I'm going to end up. My therapist told me that part of the problem is that I have always identified myself through whatever job it was that I was doing. And now I have no job, nor any prospect of what it is I want to do, and therefore I feel lost and with no identity. She says when people say, "oh, what are you doing?" I have to be okay with saying, "nothing." It is in the letting go that I will find myself.
Now that I know what I am fighting, it is time to trust that the information I have is the correct information and that I must go with the flow and take the supplements I am given. I am now on NINE different supplements, some of which I take 3x/day. In addition to the supplements I was given last time, I am now also given Vitamin D, Magnesium and Phyto Caps for Adrenal Glands. It's a lot to remember to take in a day, but I say BRING. IT. ON. One silver lining in this is that my progesterone and estrogen levels are actually normal, so I am grateful that I don't have to worry about adding that to this already delicate mix.
I've been taking the supplements from my last visit for about 3 weeks now, and already I see a slight difference. The nausea that I feel all of the time is starting to dissipate, and I haven't felt sick from food for about 2 weeks. I ovulated last week and for the first time in a LONG time I had no inflammation in my neck, no tension headache and no toxic feeling in my uterus. Hallelujah! I did get a migraine, but it was easily dispelled with Zomig nasal spray. Dr. W. surprisingly tells me that I need to stop exercising. She is the first doc to say this. Her point is that vigorous exercise actually raises the cortisol levels and that is something I can't do right now. I am to take long, slow walks and to do very gentle yoga, and that is it. She also recommends that I start a meditation practice, because a major part of the cortisol issue is stress and negative emotions. She is not the first person to recommend meditation, so it's time I listen. It's amazing that always worrying about the really stupid, small things in life contributed to making me so sick.
Right now I feel like a hermit crab between shells. I am no longer the person I had become when I was living in Los Angeles, so I don't identify with my past self at all. However, I have no idea who I will be in the future. I am that vulnerable hermit crab, growing but not knowing where I'm going to end up. My therapist told me that part of the problem is that I have always identified myself through whatever job it was that I was doing. And now I have no job, nor any prospect of what it is I want to do, and therefore I feel lost and with no identity. She says when people say, "oh, what are you doing?" I have to be okay with saying, "nothing." It is in the letting go that I will find myself.
Tuesday, August 3, 2010
Diagnosis!
I speak to Dr. B on the phone and he tells me after 22(!) lyme tests that are negative, he is willing to put the lyme diagnosis to rest. He says that I definitely had Q fever (see link at right for more information), and now the antibody tests for that are leveling out, so that means that the Q fever bacteria are leaving my body. However, I will always test positive for Q fever for the rest of my life, as I have now created the antibody to it. I am forever grateful to Dr. B. for being smart enough and aggressive enough to continue testing me until we had an answer.
I meet with Dr. W, yet another gynecologist, but also a holistic healer. She incorporates Eastern and Western medical philosophies into her practice. She was recommended to me by a friend's godmother. She is really fantastic, and spends an hour with me, letting me lay out all of the details of my illness over the past year. She isn't even fazed by everything I tell her, and she is totally no nonsense. At first I am a little taken aback by this, but then decide I respect her completely direct approach.
She tells me that besides my Q fever, she believes I have the following; leaky gut syndrome (which explains all of the nausea, headaches and diarrhea), autoimmune dysfunction, and adrenal gland dysfunction. Ugh!!! These are all things I have researched over the past year and have had one doctor after another tell me are not happening (other than the autoimmune disease). In terms of the autoimmune dysfunction, she doesn’t feel I have a “weak” immune system, but rather what she believes is an overly active one. She explains that with the overly active immune system, my body is basically identifying any and everything that comes into my system (including food!), as a “threat,” and therefore attacking it. She says this is why I get so sick often after I’ve eaten, why it feels like I have to “expel” everything, and then I feel better after I do. My body is literally identifying the food as an enemy and wants to get rid of it! She feels the hormonal pain at ovulation and menses is being caused by these three things simultaneously; the leaky gut, the autoimmune dysfunction and the adrenal glands. She says all of theses things cause inflammation, and then when you are ovulating there is an inflammatory response when the egg is released, and thus MORE inflammation and no wonder I am in so much pain. FINALLY someone explains to me why the hell I felt like I was dying during ovulation and Day 3 of my period. She says, “add to that the Q fever, and your body just couldn’t handle all of it.” I feel such a EUREKA moment I almost start crying in her office. Wow! What an amazing feeling to have that little thing in my gut, my intuition, just know all of the pieces of the puzzle finally fit! ☺
I ask her about getting pregnant after having Q fever. Reading the literature about the disease it says that the bacteria in the mammals that carry it lives, in females, in the reproductive system and causes those mammals, when pregnant, to abort. I explain this to her and she says that although she doesn’t know about Q fever her understanding is that I would only have to worry about that if I had an active infection. She also, very directly, tells me that she is actually more worried about my age in terms of getting pregnant than she is about Q fever. Depressing to hear, but the truth. She asks me if I plan to get pregnant some day. I tell her yes, hopefully in the next few years. She says it’s important for her to know this, because there are certain supplements she won’t put me on now.
She has a game plan for me – more blood tests, testing my FSH, LH, Vitamin D (I was told often when I thought I had lyme disease this was something that should be looked into, but no conventional doctors did), testing my magnesium levels as well as DHEA, cortisol, TSH, T4 and T3. All things I know I should be tested for. Someone finally gets it!!! And she has put me on the following supplements:
For the “leaky gut”: L-Glutamine, Parashield, Oil of Oregano, New Chapter Pro Flora
For my immune system: Pro Omega Fish Oil, Kaprex A1
In the meantime, I have some auditions and get booked on some acting gigs. It is a totally different experience for me these days. I used to get so anxious about everything, but now that seems to be a thing of the past. My illness has taught me what is really important and now standing in front of a bunch of people I don’t know who are judging me doesn’t matter to me anymore. I think too what I have learned is balance. In L.A. it is so easy to get so completely out of balance. And the entertainment world there does nothing to encourage keeping one’s sanity. I am grateful I found my way home, even if illness is what got me here.
I read a quote in a Joel Osteen book that is sitting on my boyfriend’s coffee table, “do not let your setback be your identity.” I like that. I think I am moving away from “being sick,” and can start to identify again with “being well.” Joy!
I meet with Dr. W, yet another gynecologist, but also a holistic healer. She incorporates Eastern and Western medical philosophies into her practice. She was recommended to me by a friend's godmother. She is really fantastic, and spends an hour with me, letting me lay out all of the details of my illness over the past year. She isn't even fazed by everything I tell her, and she is totally no nonsense. At first I am a little taken aback by this, but then decide I respect her completely direct approach.
She tells me that besides my Q fever, she believes I have the following; leaky gut syndrome (which explains all of the nausea, headaches and diarrhea), autoimmune dysfunction, and adrenal gland dysfunction. Ugh!!! These are all things I have researched over the past year and have had one doctor after another tell me are not happening (other than the autoimmune disease). In terms of the autoimmune dysfunction, she doesn’t feel I have a “weak” immune system, but rather what she believes is an overly active one. She explains that with the overly active immune system, my body is basically identifying any and everything that comes into my system (including food!), as a “threat,” and therefore attacking it. She says this is why I get so sick often after I’ve eaten, why it feels like I have to “expel” everything, and then I feel better after I do. My body is literally identifying the food as an enemy and wants to get rid of it! She feels the hormonal pain at ovulation and menses is being caused by these three things simultaneously; the leaky gut, the autoimmune dysfunction and the adrenal glands. She says all of theses things cause inflammation, and then when you are ovulating there is an inflammatory response when the egg is released, and thus MORE inflammation and no wonder I am in so much pain. FINALLY someone explains to me why the hell I felt like I was dying during ovulation and Day 3 of my period. She says, “add to that the Q fever, and your body just couldn’t handle all of it.” I feel such a EUREKA moment I almost start crying in her office. Wow! What an amazing feeling to have that little thing in my gut, my intuition, just know all of the pieces of the puzzle finally fit! ☺
I ask her about getting pregnant after having Q fever. Reading the literature about the disease it says that the bacteria in the mammals that carry it lives, in females, in the reproductive system and causes those mammals, when pregnant, to abort. I explain this to her and she says that although she doesn’t know about Q fever her understanding is that I would only have to worry about that if I had an active infection. She also, very directly, tells me that she is actually more worried about my age in terms of getting pregnant than she is about Q fever. Depressing to hear, but the truth. She asks me if I plan to get pregnant some day. I tell her yes, hopefully in the next few years. She says it’s important for her to know this, because there are certain supplements she won’t put me on now.
She has a game plan for me – more blood tests, testing my FSH, LH, Vitamin D (I was told often when I thought I had lyme disease this was something that should be looked into, but no conventional doctors did), testing my magnesium levels as well as DHEA, cortisol, TSH, T4 and T3. All things I know I should be tested for. Someone finally gets it!!! And she has put me on the following supplements:
For the “leaky gut”: L-Glutamine, Parashield, Oil of Oregano, New Chapter Pro Flora
For my immune system: Pro Omega Fish Oil, Kaprex A1
In the meantime, I have some auditions and get booked on some acting gigs. It is a totally different experience for me these days. I used to get so anxious about everything, but now that seems to be a thing of the past. My illness has taught me what is really important and now standing in front of a bunch of people I don’t know who are judging me doesn’t matter to me anymore. I think too what I have learned is balance. In L.A. it is so easy to get so completely out of balance. And the entertainment world there does nothing to encourage keeping one’s sanity. I am grateful I found my way home, even if illness is what got me here.
I read a quote in a Joel Osteen book that is sitting on my boyfriend’s coffee table, “do not let your setback be your identity.” I like that. I think I am moving away from “being sick,” and can start to identify again with “being well.” Joy!
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