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Lyme Disease Message Board


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CJFTWORTH, first let me explain what had initially happened to me again as I didn't write out my whole story and hopefully I can clear up what I wrote earlier. Stay with me cause this is gonna be a long one!

The first problem I noticed when I first got sick was I developed some kind of "overreaction" to Zoloft which I had been on for a couple of years without any problems. Suddenly, I was unable to take it anymore--the effects were greatly exaggerated and caused me to have a "serotonin syndrome-like reaction" that resulted in my hospitalization. I was tried on other medications to no avail....still the same problems. At the time, June of of 2003, I was having a trouble with a girlfriend which caused a lot of stress and lost a lot of sleep. Somewhere during this turmoil, I started having panic attacks and I naturally attributed it to the stress of the relationship, loss of sleep, and possibly withdrawal from the Zoloft. We broke up and the panic attacks had stopped although I still felt anxious and irritable a lot of the time. Ok, I thought I was fine until about three months after that, I came down with a severe flu (or so I thought) which came on very abruptly with me feeling like I was going to faint. For the next couple of weeks, I was extremely fatigued to the point where I couldn't hardly get out of bed and my anxiety levels were through the roof. I slowly but eventually fully recovered from this or so I thought. I tried to make it back to the gym on day and all of a sudden, the faint feeling returned and back in bed I went. I suffered for another couple of weeks only this time, I never recovered. From that day on, which has now been well over a year, I never felt the same. Been sick ever since and nothing has really help me. The symptoms got worse over the winter and better in the summer, but I never returned to any signs of normal. My symptoms were and still remain as unrefreshing sleep, persistant fatigue, constant anxiety, bouts of depression, brain fog, frequent panic attacks with no warning, intolerance to exercise or stress (post-exertional malaise), and intolerance to several medications, herb, vitamin and mineral supplements. When I first got sick, I didn't know what it was...I thought I had mono. I was given a thorough blood test and nothing showed up. I took me a couple of months to finally get so fed up that I told my doc, "test me for everything!" And so he did---i was even tested for HIV! After a laundry list of blood tests only ONE thing showed positive. And it was, you guessed it, a positive Lyme Elisa/Western Blot.

OK, that's how my story began, but like I mentioned in my previous post, I was happy but at the same time skeptical about the diagnosis. I had mixed feeling about it, but was just relieved to have some clue as to what was happening to me. However, from all the tales and studies of Lyme Disease I've been told or read about, there would have been a bull's eye rash and most likely I would suffer from arthritis, usually in the knees...I noticed neither of these. Of course, not everyone suffers with both, but having at least one or the other is VERY common so I had reason to be skeptical. Of course, I had to give antibiotics a trial run and my doctor felt that since my symptoms were mostly neurological, IV Rocephin would be the best choice. After 6 weeks, It did nothing for me which my doc thought was very odd. I saw another doc and he figured we could try Doxycyline and afterward I noticed a slight reduction in symptoms a couple of weeks after stopping them. I can't honestly tell you I started feeling a little bit better because of the Doxycycline for 2 reasons---1) I didn't feel better while I was on them, only after I had stopped 2) It was turning spring and getting warmer which was making me feel better anyway (more energy and sleeping better). At this point I started to get frustrated, scared, and desperate. Because 3 months of continous antibiotics had failed me, I thought I needed more!

So, to answer your question, I got angry because I was still sick and for some reason convinced that more antibiotics were the answer, yet none of my doctors thought so and would give me any. To answer another question, I've now been diagnosed as having "Post Lyme Syndrome" which is in a sense "Chronic Fatigue Syndrome with a known trigger" and I myself believe this is what I have. My doctors believed that at some point I may have been exposed to the Lyme Disease bacteria, Borrelia B., but since I was adequately treated for it, it's no longer an issue. This bacteria was most likely the "triggering factor" for my now chronic condition. Angrily, I fought this diagnosis in my mind for a long time of thinking this can't be, but after thinking it through and doing my own research, I realized they were probably right. I came to this conclusion in a number of ways. First, 6 weeks of Rocephin had absolutely no effect on my symptoms which is nearly impossible if Borrelia was causing them in the first place. Rocephin is just to powerful an antibiotic for a large majority of this infection to withstand and it works FAST (you should start feeling better in 2-3 weeks). Some may have remained, of course, but an additional 6 weeks of Doxycycline would have been more than enough to handle that. However, neither treatment seemed to improved my symptoms. Secondly, I have the 2 "hallmark" symptoms of Chronic Fatigue Syndrome which are post-exertional malaise which means I'm quickly and easily bedridden by overexertion or stress and extreme and unusual sensitivities to certain medicines. These are the symptoms that seperate Chronic Fatigue Syndrome from most any other disease. Thirdly, I had an MRI scan of my brain and it was normal. People with Lyme Disease suffering from neurological problems usually show abnormalities, however people with Chronic Fatigue Syndrome do not. Fourthly, the New England Journal of Medicine studied the continued use of antibiotics in chronically symptomatic patients in two separate studies and they were found to be of no benefit.

I want to address some misunderstandings. In your post, you wrote that showing a positive ELISA/Western Blot antibody test means the Lyme bacteria "are on a mutiny." This is not necessarily so---as the CDC and infectious disease specialists know, these test were only designed and intended to be confimatory---not soley used for a positive diagnosis of Lyme Disease. This is a very important distinction to be made! Like one of my docs explained to me, I may have been exposed to the bacteria, hence a strong antibody response, but that does not mean the bacteria lived to tell the tale or are responsible for my symptoms, ESPECIALLY since the antibiotics didn't work. Studies have shown, people with no symptoms at all can show a strong antibody response so it really proves nothing. Antibodies only show that the immune system at some point recognized exposure. To say every time a positive antibody test means an active infection MUST be present is like saying every time you see firemen, there must be a fire! It just isn't so.

You stated that you question how I can 'edit' or recommend 'standard' docs. I find this comment laughable! First, I am a Pharmcist! A medical professional! Counseling patients is part of what I do for a living everyday! Second, there are several people on this health board with absolutely no medical training whatsoever giving out all sorts of advice, yet no one seems to have a problem listening to them...Why should you have a problem listening to mine? I don't think that was very fair of you to say that. Thirdly, what makes you so sure a LLMD is any better than any other doctor? Do they have crystal balls or something or is it just because they practice outside the box? Does not accepting insurance, as most of them don't, somehow make them better? Where did you get the notion that insurance companies tell the doctors what to do? All insurance companies try to do is cut costs...The doctors only listen to them when the patient says its ok to do so...its always up to the patient to decide if he/she wants to pay for the meds...that's it. Let me tell you something else, I do believe that many people who think they have Chronic Lyme Disease actually have something else going on, especially if 3-6 months of antibiotics have failed to show benefit. Wouldn't you say thats pretty reasonable to assume this especially when no one can even prove a live infection is still even present? Until there is a definitive test for cure, I guess we are all in the dark.

And Finally, to answer your last question, my current situation is as it has been since this whole thing started. I'm still sick, I'm still frustrated, and I still haven't found a thing that helps me feel better for longer than a couple of days. I believe that unless I stumble upon an effective treatment for Chronic Fatigue Syndrome, I'm gonna suffer until it eventually resolves on its own and there is a very good chance that it will. It is a VERY real disease and very debilitating. So tell me YOUR story...I would like to know your symptoms in detail and how well you have done so far on your treatments.





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