Continuing on my quest to be cured from chronic lyme disease. I have been doing lots of work and research. Had a great consulting session with Perry Fields today. She is an athlete [runner], who came back from a 4-year bout with lyme disease and is now healthier than ever. The single most inspiring person I have met yet in the lyme community. I so want the same outcome as she.
I'm taking lots of supplements now, mostly vitamins -- suggested by a doctor who also practices alternative medicine [Dr. Firshein in NYC]. I'm also getting Vitamin B-12 shots and vitamin infusions once/week in his office. Perry Fields gave me an enormous amount of information -- supplements to take, a machine to try ... lots to absorb. She recommends seeing a holistic dentist to have the mercury amalgams removed -- this is something I had wanted to do for a long time.
I'm spending a lot of time figuring this out -- it's become a full-time job! I'm on the Buhner Yahoo site. Haven't taken his herbs yet [based on Stephen Buhner's book 'Healing Lyme'] except for Reseveratol, which I am taking every day. I'm still on IV Rocephin and I believe that is keeping me in a holding pattern right now; however, that treatment is set to end next week. As glad as I will be to not have an IV in my arm, I am nervous about what will happen when I come off of the treatment.
There is lots more to do, that I need to get started with. I can't believe that one bug bite could cause so much ongoing illness for so long. And I'm not even hitting one year yet! It's really been a tough road, and an emotional roller coaster.
I wrote a letter to my neurologist this week, letting him know how I felt about being misdiagnosed for months. For a trained doctor to look at you and say it looks like you have lyme disease, and then to discount it because your first test [taken the same month that symptoms appeared] was negative, is terrible. I am most angry at him, but trying not to hold onto the past, even though his misstep kind of wrecked my life for a while.
Aside from that, I'm really trying to be hopeful and have a good attitude. There are people out there with chronic lyme who are better and I plan to be one of them, no matter how long it takes [and hopefully it won't take too long].
Tuesday, January 26, 2010
Sunday, January 10, 2010
Trying to have a good outlook
Well, here I am -- I thought I would post my story here, as a way to help myself through this -- and maybe if someone out there reads it, it could help someone else as well. I'm still learning about all of this -- I am no expert on lyme disease or its treatments, but I am trying to find the answers.
My story goes like this: Symptoms started in or around June 2009. Mental confusion [meaning that I would drive to - say, the dentist - and end up in a completely different area, even in a different state! Then I got a weird rash all over my abdomen -- looked like poison ivy, definitely wasn't a bulls-eye, but I got a fever with that and unbelievable fatigue. Saw a dermatologist about the rash -- he gave it a name, said it was viral and not to lose sleep about it, and sent me home. This was early July. Late July, the right side of my face went numb. That prompted me to see a doctor.
I went to a neurologist, who ran some bloodwork. Negative lyme titer. [Did not run a western blot and I later learned that lyme can take up to a couple of months to even show in bloodwork, if at all.] In the meantime, I knew something was not right with me -- but didn't know what. Neurologist determined that my right shoulder was weak on that visit. He said it seemed like I had lyme disease, but dropped the thought because of the negative test. I got scared; didn't know what to think. He started throwing out a neuromuscular disease name -- CIDP -- which is an autoimmune, inflammatory disease which causes demyelination. I left there, had an MRI of the brain and neck [both fine], had an EMG, which is a nerve conduction test [felt like being in a torture chamber] and that showed some problems with my sensory nerves and slight demyelination in my right arm [and yes, lyme can do that to you].
Now I was really scared. Took all my tests and saw 3 other neurologists within the next couple of months. In the meantime, started having severe arthritis in my neck & shoulders. Never had that before. Lasted 3-4 weeks and went away. Then my skin started burning [peripheral neuropathy]. I think this convinced my neuro even more that I had CIDP [as this is often a symptom of that -- however, it is also a symptom of lyme]. All the while, I woke up every day thinking I had this CIDP disease. Months went by, I visited other doctors. Then my fingers started to go numb -- the fingertips. Upon touch, they felt dead. Finally, my neuro decided to re-run bloodwork. I asked for another lyme test -- not because I thought I had lyme at all, but I wanted all bases covered. That's when the test came back positive. Now it's October. Months passed with no treatment and lots of crazy symptoms.
I saw an infectious disease doc who had lyme acclaims to his name and he put me on doxycycline for 2 months. I actually felt better for a month -- but neuropathy never went away. After a month on the doxy, my fingers started to feel dead again, and only got worse. Yet I finished the antibiotic and then things went from bad to worse. I started having trouble with my hands -- fingers, primarily. It was getting hard to do things -- like wrapping X-mas presents, for example. I finally saw another infectious disease doc @ Columbia Med Ctr. in NYC. This doctor me on an IV antibiotic to treat lyme for one month [still on it now]. About a week into it, I felt tremendously better. Even the burning neuropathy was nearly gone. But after week 2, symptoms all came back again.
I'm being told I might just have to live with these symptoms. I'm finding that hard to accept. I have been searching for alternative treatments. My goal in 2010 is to climb back up from the depths of despair that undiagnosed lyme disease had sent me to. I'm looking into herbs. Read Stephen Buhner's book HEALING LYME and I am about to start on his core protocol [which consists of Reservatrol, Andrographis, and Cat's Claw.] I have elminated gluten and processed sugar from my diet [in an effort to reduce inflammation].
I often get discouraged. I felt that if I get myself out there by writing this blog, then perhaps it could give me some encouragement for all of those moments I feel despair. To be honest, I am scared. I don't know what is ahead with this. I know I can't live on antibiotics forever. I have hope that this can get better, but I do get scared. In my times of hope, I feel I can beat this and not only that, I can eventually eradicate these lingering symptoms which cause me stress. I feel like I can be back to my old self again. And at other times, I really do worry. I try not to look back, but it has been very difficult to think about the bite I saw on my leg last spring which looked very weird and which I even asked my husband if I should see the doctor about. Then I think about the dermatologist I saw, who didn't think about lyme. Or the neurologist, who saw the negative lyme test but said it seemed like I had lyme -- but didn't think to re-run the test until months later [and on my insistence]. Why didn't he know that lyme doesn't always show up right away on blood tests?
I can't change anything back there. I need to change my attitude. It's hard. I still do have hope that I can recover.
My story goes like this: Symptoms started in or around June 2009. Mental confusion [meaning that I would drive to - say, the dentist - and end up in a completely different area, even in a different state! Then I got a weird rash all over my abdomen -- looked like poison ivy, definitely wasn't a bulls-eye, but I got a fever with that and unbelievable fatigue. Saw a dermatologist about the rash -- he gave it a name, said it was viral and not to lose sleep about it, and sent me home. This was early July. Late July, the right side of my face went numb. That prompted me to see a doctor.
I went to a neurologist, who ran some bloodwork. Negative lyme titer. [Did not run a western blot and I later learned that lyme can take up to a couple of months to even show in bloodwork, if at all.] In the meantime, I knew something was not right with me -- but didn't know what. Neurologist determined that my right shoulder was weak on that visit. He said it seemed like I had lyme disease, but dropped the thought because of the negative test. I got scared; didn't know what to think. He started throwing out a neuromuscular disease name -- CIDP -- which is an autoimmune, inflammatory disease which causes demyelination. I left there, had an MRI of the brain and neck [both fine], had an EMG, which is a nerve conduction test [felt like being in a torture chamber] and that showed some problems with my sensory nerves and slight demyelination in my right arm [and yes, lyme can do that to you].
Now I was really scared. Took all my tests and saw 3 other neurologists within the next couple of months. In the meantime, started having severe arthritis in my neck & shoulders. Never had that before. Lasted 3-4 weeks and went away. Then my skin started burning [peripheral neuropathy]. I think this convinced my neuro even more that I had CIDP [as this is often a symptom of that -- however, it is also a symptom of lyme]. All the while, I woke up every day thinking I had this CIDP disease. Months went by, I visited other doctors. Then my fingers started to go numb -- the fingertips. Upon touch, they felt dead. Finally, my neuro decided to re-run bloodwork. I asked for another lyme test -- not because I thought I had lyme at all, but I wanted all bases covered. That's when the test came back positive. Now it's October. Months passed with no treatment and lots of crazy symptoms.
I saw an infectious disease doc who had lyme acclaims to his name and he put me on doxycycline for 2 months. I actually felt better for a month -- but neuropathy never went away. After a month on the doxy, my fingers started to feel dead again, and only got worse. Yet I finished the antibiotic and then things went from bad to worse. I started having trouble with my hands -- fingers, primarily. It was getting hard to do things -- like wrapping X-mas presents, for example. I finally saw another infectious disease doc @ Columbia Med Ctr. in NYC. This doctor me on an IV antibiotic to treat lyme for one month [still on it now]. About a week into it, I felt tremendously better. Even the burning neuropathy was nearly gone. But after week 2, symptoms all came back again.
I'm being told I might just have to live with these symptoms. I'm finding that hard to accept. I have been searching for alternative treatments. My goal in 2010 is to climb back up from the depths of despair that undiagnosed lyme disease had sent me to. I'm looking into herbs. Read Stephen Buhner's book HEALING LYME and I am about to start on his core protocol [which consists of Reservatrol, Andrographis, and Cat's Claw.] I have elminated gluten and processed sugar from my diet [in an effort to reduce inflammation].
I often get discouraged. I felt that if I get myself out there by writing this blog, then perhaps it could give me some encouragement for all of those moments I feel despair. To be honest, I am scared. I don't know what is ahead with this. I know I can't live on antibiotics forever. I have hope that this can get better, but I do get scared. In my times of hope, I feel I can beat this and not only that, I can eventually eradicate these lingering symptoms which cause me stress. I feel like I can be back to my old self again. And at other times, I really do worry. I try not to look back, but it has been very difficult to think about the bite I saw on my leg last spring which looked very weird and which I even asked my husband if I should see the doctor about. Then I think about the dermatologist I saw, who didn't think about lyme. Or the neurologist, who saw the negative lyme test but said it seemed like I had lyme -- but didn't think to re-run the test until months later [and on my insistence]. Why didn't he know that lyme doesn't always show up right away on blood tests?
I can't change anything back there. I need to change my attitude. It's hard. I still do have hope that I can recover.
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