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.
Friday, December 9, 2011
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.
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