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.