I'm on month 3 of i.v. rocephin and I'm feeling GREAT. Not just good, but great. There are more days of feeling normal now and last month, while I still had a flare, it was minimal and I was functional during it. I've gained 6 pounds and it doesn't hurt to sit anymore. I've been able to exercise, now walking again for 45 minutes without fatigue. I actually have an appetite. I think the multi-pronged approach has really been what has worked for me. We're treating the adrenals, the hormones, the viruses (EBV and Herpes), and now crushing the lyme with i.v. antibiotics. I also take Grapefruit Seed Extract and Diflucan (both of which help to eradicate the cyst form of the spirochete.) I take B5, B6 and B12 (shots), L-Lysine, Cysteplus, Valtrex (anti-viral), Vitamin D, Hydrocortisone (which I feel I will be able to finally be weaned off of!), Magnesium, and a sleeping pill. I'm still doing a photo oxidation session every few weeks. All of these things combined have gotten my body to a place where it feels the best it has felt in years. I'm also doing healing meditations which have definitely helped with my sleeping issues.
Reading back over my blog it is so frustrating to see that in 2009, when I was treated with doxycycline I started feeling so much better and it was clear even then that I had lyme. But it took until this year to really be properly treated for it. That is why this illness is so confusing sometimes. I never had a positive test and so again and again I wasn't treated for lyme, and despite knowing intuitively that I felt toxic, I became doubtful myself and wondered if I had an autoimmune disease. It has definitely been a frustrating uphill and downhill journey.
Now that I feel like the lyme situation is under control, I am doing research regarding the hormonal aspect of my health. Having been kicked into early menopause, and having dealt with a breast cancer scare at the end of last year, I am doing all of the research I can to understand hormone replacement therapy. I'm reading "What Your Doctor May Not Tell You about Breast Cancer," by Dr. John Lee, David Zava and Virginia Hopkins. I'm doing as much reading as I can and then I need to make a decision about how to move forward regarding the breast cancer. I listened back to my little digital recorder of my appointment with my oncologist, and she basically said that because of the kind of cancer I had I actually have the option to do nothing. Meaning, not even going on Tamoxifen. But most importantly, I have to go off of the estrogen cream. So I'm trying to figure out how to maintain my sanity, stay as symptom free as possible and protect my health, and whether that means I have to go off of all hormone replacement or can at least stay on the progesterone cream. Apparently, as a menopausal woman, I am still making small amounts of estrogen and even that can be a problem with estrogen receptor positive breast cancer. My intuition tells me I need to find an integrative oncologist, if such a person exists. It also tells me I need to find a naturopath or homeopath to help me stay healthy and strong beyond lyme and breast cancer.
After listening back to my oncologist appointment I was very depressed for days. I finally had to face that I am 100% in menopause and having children isn't an option. I'm 44, and while that is considered older for most pregnancies my example was that my older sister had her last child around this age, so it didn't seem that abnormal to me to think I could still have a baby. I had to let go of the last shred of hope I was holding onto, which hurt a place inside of me so deep that I felt like if I let it out it would consume me. I always felt I would have two girls, and I feel like I have let down two souls who were supposed to come into the world through me. I have mourned the loss, although sometimes unexpectedly seeing a small baby will make it hurt and I will get weepy. Now the practical side of me has emerged and I think seriously about the process of adoption. And I am grateful that I have three beautiful children to love in my nieces and nephew.
Saturday, June 22, 2013
Monday, June 10, 2013
Happiness Pressure
When I'm depressed one thing that makes me feel even more depressed is that constant feeling of "I should be happy" or "I want to feel happy." Despite being really sick, for some reason I have this ridiculous expectation that I'm miserable because I'm not "happy" and that because happy is the exact opposite of unhappy that's what I should be striving for. It occurred to me though that I don't put that same expectation on myself in any other area of my life. When starting an exercise program I don't assume that after day one I'll be running a marathon. When starting a job I don't expect I'll be an assistant and the next day CEO. In my romantic relationships, I don't assume I'll go out on a first date and be married to the guy on date two. And I've been sick for years, knowing that I didn't go from sick one day to well the next. It was a long process. So why this pressure when it comes to happiness?
I think it's partially being an American, a Westerner, generational and living in a society with a very high expectation of the success=happiness equation. So if I'm not successful right now, whatever one's definition of that is, not working, not in a relationship, sick and living at home of course it seems I would be unhappy.
But I discovered that if I changed what I was striving for it would create an equation I could live up to for myself. Meaning, instead of striving so hard for happy and being more depressed when I fall short of that, I could strive just to be one click away from depressed. My equation could look like this...not in any pain today=less depressed. If I work this like a muscle, less depressed might eventually equal content. That makes me happy.
I think it's partially being an American, a Westerner, generational and living in a society with a very high expectation of the success=happiness equation. So if I'm not successful right now, whatever one's definition of that is, not working, not in a relationship, sick and living at home of course it seems I would be unhappy.
But I discovered that if I changed what I was striving for it would create an equation I could live up to for myself. Meaning, instead of striving so hard for happy and being more depressed when I fall short of that, I could strive just to be one click away from depressed. My equation could look like this...not in any pain today=less depressed. If I work this like a muscle, less depressed might eventually equal content. That makes me happy.
Monday, May 13, 2013
10 Lyme Lessons Learned
1. I must be my own advocate. No one can be inside my body and fix what is broken. I am 100% responsible for eating healthy, exercising, getting enough sleep, drinking enough water, taking my medicine, creating healthy boundaries, educating myself and getting up every day despite the pain and pushing to the next level of wellness.
2. What it means to relax. In my old life a day of "relaxation" was cleaning, doing laundry and a workout. Now a day of relaxation means lying down, doing nothing, daydreaming, filling the tank and actually relaxing.
3. The only thing I can really control on any given day is my attitude.
4. Nobody has the one answer that is going to heal this illness for me.
5. Pain and darkness are balanced by joy and light.
6. Crying has it's purpose. Throwing a tantrum at the universe has it's purpose too.
7. When all else fails, go to bed. It will be better the next morning.
8. I am way more spiritually strong than I thought.
9. Trust my intuition. The body knows.
10. Everything in my life up to this point that tested me, has been trumped by lyme disease.
2. What it means to relax. In my old life a day of "relaxation" was cleaning, doing laundry and a workout. Now a day of relaxation means lying down, doing nothing, daydreaming, filling the tank and actually relaxing.
3. The only thing I can really control on any given day is my attitude.
4. Nobody has the one answer that is going to heal this illness for me.
5. Pain and darkness are balanced by joy and light.
6. Crying has it's purpose. Throwing a tantrum at the universe has it's purpose too.
7. When all else fails, go to bed. It will be better the next morning.
8. I am way more spiritually strong than I thought.
9. Trust my intuition. The body knows.
10. Everything in my life up to this point that tested me, has been trumped by lyme disease.
Friday, April 12, 2013
Breast Cancer Follow up & I.V. Antibiotics
It took a few weeks but my body finally recovered from the
lumpectomy. There was scar tissue in my armpit where the incision was
made, but my body healed there. So at least in all of this illness my
body can still heal itself. That was a small ray of light. I saw the
geneticist and again, I am lucky in that I do not have a gene mutation
and the cancer I had rated low. I do however have estrogen positive
cancer, so have been advised to go off of my estrogen cream. I haven't
done that yet, because I am using such a miniscule amount, and because I
was feeling so sick across the board. I know that the estrogen and
progesterone creams have helped my mood and general state of well being.
I was also advised to start taking Tamoxifen. There have been so many
decisions to make health wise in the past few years with the lyme that
this cancer diagnosis still feels surreal. My body is telling me that
it was a bump in the road and there isn't going to be any more cancer so
I can move on. Maybe stupid and naive, but intuitively I feel that it
was a fluke because of the condition of my body. I have to make a
decision about the Tamoxifen soon, but I am exhausted by these
decisions.
In the meantime, I have been on three rounds of i.v. rocephin for the lyme. We were trying to do it only on the days I was flaring, but each time I went off of it I got very sick. So, now it's i.v. rocephin every day, probably for the next two months. I am feeling really good. Symptoms that have gone away are; pounding stomach, brain fog, itchy eyes, muscle aches, nerve pain in my jaw and head, swollen glands, racing thoughts, anxiety and that deep, soul sucking fatigue. Unfortunately, I think lyme heals in layers and now that those symptoms have disappeared new ones have shown up. Most significantly my knee and elbow joints are killing me. I never had joint pain in all of this time, which many lyme patients do. Perhaps the bacteria were always lurking there, but compared to all of the other horrific symptoms that was the least of my problems. Now that the body has been freed up of those others pains, the bacteria are wreaking havoc in the joints. And after only three weeks on the rocephin I am once again dealing with yeast, despite taking high doses of pro-biotics and anti-fungals. It feels like it never ends. But right now I am hopeful, more hopeful than I have been in a long time.
In the meantime, I have been on three rounds of i.v. rocephin for the lyme. We were trying to do it only on the days I was flaring, but each time I went off of it I got very sick. So, now it's i.v. rocephin every day, probably for the next two months. I am feeling really good. Symptoms that have gone away are; pounding stomach, brain fog, itchy eyes, muscle aches, nerve pain in my jaw and head, swollen glands, racing thoughts, anxiety and that deep, soul sucking fatigue. Unfortunately, I think lyme heals in layers and now that those symptoms have disappeared new ones have shown up. Most significantly my knee and elbow joints are killing me. I never had joint pain in all of this time, which many lyme patients do. Perhaps the bacteria were always lurking there, but compared to all of the other horrific symptoms that was the least of my problems. Now that the body has been freed up of those others pains, the bacteria are wreaking havoc in the joints. And after only three weeks on the rocephin I am once again dealing with yeast, despite taking high doses of pro-biotics and anti-fungals. It feels like it never ends. But right now I am hopeful, more hopeful than I have been in a long time.
I.V. Antibiotics, Cancer
I do my first round of i.v. rocephin. I wait until I am in a flare, the theory being that the lyme cycles in a four week cycle and that is when I'm getting sick. My left eye always gets sticky and itchy and that's how I know a flare is coming. So when it happens I go to the doctor the next day and have a photo oxidation session first, then the i.v. antibiotics. I do that for 6 days in a row. I don't get sick. We might be onto something. I don't herx either. I'm thinking I don't herx because of the photo oxidation. I have a ton of energy too, also from the photo ox. Waiting to see what happens during the next flare. We are going to double the amount of antibiotics and see what happens. But I am all in because it intuitively makes sense to me. Why would I douse my body in antibiotics when I am asymptomatic? Pulsing seems to be the right fit for me.
A few days after treatment I have a day that throws me back to how I felt in the beginning, with incapacitating depression. Depression is depressing. I am so depressed in my body that I can't function. I do everything I know of to help myself...B12 shots, do yoga, eat healthy, drink green tea and watch a funny video. But it is so heavy it crushes me. I cry all day. This is the element of this illness that is hard for those who never had it to understand. The bacteria is in the BRAIN. It messes with your emotional center. So while there are debilitating physical symptoms, some days there are emotional ones; anxiety, irritability, soul crushing depression. I think I have this bad day because of the strong treatment I just did and it is essentially a herx.
On another note entirely... I still can't believe that I'm typing the word cancer. It is completely surreal to me. I stand by my conviction that I got a tumor in my breast because my body couldn't fight off the cancer in it's current depleted state. With severe adrenal fatigue and constant inflammation from the tick borne disease my body didn't stand a chance. I think the photo oxidation is not only helping with the bacteria, viruses and candida, but also from a cancer perspective by boosting my immune system. What a mess. In terms of cancer news I did get good news. I do not have a genetic mutation and my tumor level is a 1. So it's not aggressive. It IS estrogen receptor positive. So now there is a discussion of me going off of my estrogen cream and going on tamoxifen (a drug that blocks estrogen). This makes me really frustrated because I finally got my hormones and moods relatively stable with the estrogen and progesterone cream. It's all pretty stressful. See above paragraph on depression.
A few days after treatment I have a day that throws me back to how I felt in the beginning, with incapacitating depression. Depression is depressing. I am so depressed in my body that I can't function. I do everything I know of to help myself...B12 shots, do yoga, eat healthy, drink green tea and watch a funny video. But it is so heavy it crushes me. I cry all day. This is the element of this illness that is hard for those who never had it to understand. The bacteria is in the BRAIN. It messes with your emotional center. So while there are debilitating physical symptoms, some days there are emotional ones; anxiety, irritability, soul crushing depression. I think I have this bad day because of the strong treatment I just did and it is essentially a herx.
On another note entirely... I still can't believe that I'm typing the word cancer. It is completely surreal to me. I stand by my conviction that I got a tumor in my breast because my body couldn't fight off the cancer in it's current depleted state. With severe adrenal fatigue and constant inflammation from the tick borne disease my body didn't stand a chance. I think the photo oxidation is not only helping with the bacteria, viruses and candida, but also from a cancer perspective by boosting my immune system. What a mess. In terms of cancer news I did get good news. I do not have a genetic mutation and my tumor level is a 1. So it's not aggressive. It IS estrogen receptor positive. So now there is a discussion of me going off of my estrogen cream and going on tamoxifen (a drug that blocks estrogen). This makes me really frustrated because I finally got my hormones and moods relatively stable with the estrogen and progesterone cream. It's all pretty stressful. See above paragraph on depression.
Tuesday, January 8, 2013
Lyme Disease & Breast Cancer
I have a lumpectomy in the middle of battling lyme and company. The breast microcalcifications are benign but, within the area they take out, 2 small nodules the size of a pencil point show up. One is benign, the other is cancer. I am one of the lucky ones though, because they got all of it and an MRI of the breasts show I have no other calcifications or nodules in either breast. Now I am waiting test results to tell us if the cancer is hormone related, genetic, among a bunch of other things so we know how to proceed in terms of prevention. The lumpectomy is a piece of cake, however, I get VERY sick in the days after. I think most healthy women don't have that reaction, but because my body is in a weakened state already, I react badly to the trauma of it.
I can't help but wonder if the condition my body has been in for so long created an unhealthy environment that allowed cancer to grow. I ask the breast doc about this and she says that the two aren't related. She is really smart and I respect her enormously, so I want to agree. But considering my journey, I can't help but think they ARE.
One thing I learn with the breast cancer situation is that breast cancer is taken very seriously and I am treated with respect, kindness and made to feel I have an entire team around me. What I find ironic is that I have had lyme disease for four years and have been so sick I thought I would die from the pain. Yet it took me two years to get a doctor to listen to me and believe me. With the breast cancer I have had no pain, no warning, and simply because I listened to my older sister and had my annual exam did it even show up. I didn't have to convince the doctors it was there, I didn't have to feel like I was crazy, telling everyone "I have breast cancer!" In fact, everything we do in the process is essentially preventative, to make sure I don't DEVELOP breast cancer down the road.
I don't understand why lyme disease isn't taken as seriously as cancer. Lyme kills. It's REALLY painful. It sucks the life out of you and it made me feel like a zombie in my own body. It can destroy your brain. If not diagnosed right away it wreaks havoc on all of the other body systems...my adrenals, hormones, and gut were drastically effected. I don't know if they will ever fully recover. I can't imagine what it would be like to have gotten lyme disease and to go to a place where not only do I NOT have to fight for my diagnosis and treatment, but I am treated kindly, and supported by an entire team of people who understand lyme and co-infections, and there are different types of docs to help me, alternative therapies, a BINDER even. They handed me a BINDER at the breast center with everything I could possibly need to recover. If only this had been my experience with lyme four years ago when I first got sick. LYME DISEASE IS REAL. WAKE UP MEDICAL COMMUNITY!!!
I can't help but wonder if the condition my body has been in for so long created an unhealthy environment that allowed cancer to grow. I ask the breast doc about this and she says that the two aren't related. She is really smart and I respect her enormously, so I want to agree. But considering my journey, I can't help but think they ARE.
One thing I learn with the breast cancer situation is that breast cancer is taken very seriously and I am treated with respect, kindness and made to feel I have an entire team around me. What I find ironic is that I have had lyme disease for four years and have been so sick I thought I would die from the pain. Yet it took me two years to get a doctor to listen to me and believe me. With the breast cancer I have had no pain, no warning, and simply because I listened to my older sister and had my annual exam did it even show up. I didn't have to convince the doctors it was there, I didn't have to feel like I was crazy, telling everyone "I have breast cancer!" In fact, everything we do in the process is essentially preventative, to make sure I don't DEVELOP breast cancer down the road.
I don't understand why lyme disease isn't taken as seriously as cancer. Lyme kills. It's REALLY painful. It sucks the life out of you and it made me feel like a zombie in my own body. It can destroy your brain. If not diagnosed right away it wreaks havoc on all of the other body systems...my adrenals, hormones, and gut were drastically effected. I don't know if they will ever fully recover. I can't imagine what it would be like to have gotten lyme disease and to go to a place where not only do I NOT have to fight for my diagnosis and treatment, but I am treated kindly, and supported by an entire team of people who understand lyme and co-infections, and there are different types of docs to help me, alternative therapies, a BINDER even. They handed me a BINDER at the breast center with everything I could possibly need to recover. If only this had been my experience with lyme four years ago when I first got sick. LYME DISEASE IS REAL. WAKE UP MEDICAL COMMUNITY!!!
Thursday, January 3, 2013
Chasing the bugs
Part II
So I finally get a positive lyme test result. Now what? I'm still having these excruciating monthly flares...nerve pain in my face so bad it hurts to breathe air through my nostrils. I spend about 5 days curled up, not moving, just trying to get through it. Zomig migraine spray helps the pain, but then I pay with a rebound headache.
I see my doctor and I've now done four UBI (ultraviolet blood irradiation) therapies. The blood is taken out of my body (about 60ccs), then oxygen is mixed with it. Then the blood goes through a machine that looks like a little tanning bed and is irradiated with ultraviolet rays. This process "cleans up" the blood irradiating viral, fungal and bacterial bugs in the process. I definitely feel better the day of and the day after. I have much more energy and can think clearer. I also think it's helping my sleep. But these monthly flares aren't responding.
Now it's time to "chase the bugs." We are doing the anti-viral Valtrex (to help with the Herpes aspect). Many people have herpes whether it's Herpes Simplex 1 or 2 (oral or genital) or Herpes Virus 6, but their immune system is strong and keeps it in check. Sometimes a trauma, whether it be physical illness or emotional can trigger the herpes. Types of Herpes Viruses Because I've been fighting a bacterial infection for so long my immune system is weak and I can't keep it in check anymore. I've tested positive for oral herpes and HHV-6. So we are going with Valtrex to start. Then, I'm adding Olive Leaf Extract. Then, during a flare, we are hitting it with two ultraviolet blood irradiation sessions. If the flares don't start to cease, the big guns are coming...I.V. antibiotics. I have tried the diet route, I have tried anti-bacterials and now I've had enough and want the bugs gone. I want my life back.
So I finally get a positive lyme test result. Now what? I'm still having these excruciating monthly flares...nerve pain in my face so bad it hurts to breathe air through my nostrils. I spend about 5 days curled up, not moving, just trying to get through it. Zomig migraine spray helps the pain, but then I pay with a rebound headache.
I see my doctor and I've now done four UBI (ultraviolet blood irradiation) therapies. The blood is taken out of my body (about 60ccs), then oxygen is mixed with it. Then the blood goes through a machine that looks like a little tanning bed and is irradiated with ultraviolet rays. This process "cleans up" the blood irradiating viral, fungal and bacterial bugs in the process. I definitely feel better the day of and the day after. I have much more energy and can think clearer. I also think it's helping my sleep. But these monthly flares aren't responding.
Now it's time to "chase the bugs." We are doing the anti-viral Valtrex (to help with the Herpes aspect). Many people have herpes whether it's Herpes Simplex 1 or 2 (oral or genital) or Herpes Virus 6, but their immune system is strong and keeps it in check. Sometimes a trauma, whether it be physical illness or emotional can trigger the herpes. Types of Herpes Viruses Because I've been fighting a bacterial infection for so long my immune system is weak and I can't keep it in check anymore. I've tested positive for oral herpes and HHV-6. So we are going with Valtrex to start. Then, I'm adding Olive Leaf Extract. Then, during a flare, we are hitting it with two ultraviolet blood irradiation sessions. If the flares don't start to cease, the big guns are coming...I.V. antibiotics. I have tried the diet route, I have tried anti-bacterials and now I've had enough and want the bugs gone. I want my life back.
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