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I read your post and related to so much of what you said. I don't know if my not wanting to accept the diagnosis is my denial and fear or if it is based on reality. Ya know what really bothered me about your post was that some GP perscribed Zoloft for you! Just because he has perscription rights does not make him qualified to diagnose any sort of suspected psych. issue -I am not suggesting that you have any -I am just making a point. Lord, we have teachers who think they are qualified to diagnose ADD/ADHD but then ask them what the diagnostic criteria is and they look at you like you are from Mars (don't mean to offend any teachers out there - just my experience)! Just goes to show how screwed up the entire system is. The only people who are qualified to assess your Mental Health status are Psychiatrists or Psychologists. To just hand you a script and pass you off? :o

I begin IV Rocephin treatment this week and even to date still question my diagnosis - even though I am very very highly positive. Family hx of MS and diagnosed with Adrenal Dysfunction makes me wonder of my neurological symptoms are more about those conditions then the Lyme. I just seem to always have those questions in the back of my mind. As I wrote on another post..... Hard part is not knowing if treatment is going to help or not....Lots of $$$$$$ without alot of confidence.

Take Care,
TG
[QUOTE=trigal]I read your post and related to so much of what you said. I don't know if my not wanting to accept the diagnosis is my denial and fear or if it is based on reality. Ya know what really bothered me about your post was that some GP perscribed Zoloft for you! Just because he has perscription rights does not make him qualified to diagnose any sort of suspected psych. issue -I am not suggesting that you have any -I am just making a point. Lord, we have teachers who think they are qualified to diagnose ADD/ADHD but then ask them what the diagnostic criteria is and they look at you like you are from Mars (don't mean to offend any teachers out there - just my experience)! Just goes to show how screwed up the entire system is. The only people who are qualified to assess your Mental Health status are Psychiatrists or Psychologists. To just hand you a script and pass you off? :o

I begin IV Rocephin treatment this week and even to date still question my diagnosis - even though I am very very highly positive. Family hx of MS and diagnosed with Adrenal Dysfunction makes me wonder of my neurological symptoms are more about those conditions then the Lyme. I just seem to always have those questions in the back of my mind. As I wrote on another post..... Hard part is not knowing if treatment is going to help or not....Lots of $$$$$$ without alot of confidence.

Take Care,
TG[/QUOTE]

TG,

If you're stressing about MS, definitely get an EMG to get that notion out of your head!

:)
Hey everyone...I've been reading through the posts and I noticed some things here, maybe some of you will agree, maybe some of you won't. I myself, when first diagnosed with Lyme Disease by the Elisa/Western Blot, was very thrilled at the idea--Finally my enemy has a name! However, through my medical training as a pharmacist, I was also very skeptical...My symptoms didn't sound very much like Lyme disease to me; they seemed more like Chronic Fatigue Syndrome. I suffer mostly from cognitive problems (anxiety, panic attacks, depression) and fatigue (unrefreshing sleep, post- exertional malaise). I thought no way could I have Lyme Disease--never remembered getting a tick bite, never got a rash, don't have arthritis anywhere! I, myself, supplied antibiotics to several patients for Lyme Disease and there symptoms sounded nothing like mine. However, I figured I need to give antibiotics a trial run. We were taught in school that, at least for most people, a Lyme infection is not something that requires extensive antibiotic use over and beyond a few month period. The reason for this is that it is a very treatable infection--the antibiotics should and do work very quickly. In the majority of typical cases, at least some benefits are noted within a 3-4 week period. For me, however, after being on antibiotics for over 3 months, I noticed that I never truly realized any benefit from them at all. My treatment included IV Rocephin and Doxycycline which are the hallmarks of Lyme Disease treatment. Honestly, by the end of treatment, in some ways I felt worse. I noticed that while on the antibiotics I felt even worse (not herx worse, just felt lowsy) and my body was slowly deconditioning from just lying around and resting so now I had even less energy and stamina than before going on them.

When the treatment failed, I was angry...I thought, how could this happen? Why didn't it work? I need more antibiotics! I went to several infectious disease specialists and they all told me the same thing...if I had Lyme Disease at all, the infection has to be gone by now...if I am still sick, something else must be wrong with me. I didn't want to believe them...they are liars! They don't want to listen to me! The diagnosis that I was initially skeptical of, I was now defending at all costs! After some time passed, I realized some important things that I couldn't believe I had overlooked.

First, if the symptoms didn't respond in anyway to adequate treatment with Rocephin, there is a VERY good chance Lyme wasn't my problem. Rocephin KILLS bacteria very quickly and effectively. I talked this over with the nurse who came to my house every week to help me with the infusions. I asked her all sorts of questions and she told me she has treated HUNDREDS of people with Rocephin and it almost always works very well. She was in a way shocked that it did nothing for me. Secondly, when people have a mystery illness such as mine, they get scared! They want an easy explanation for why they are so sick! When I heard Lyme Disease, I actually got happy about it! I thought a few weeks on antibiotics and I'm cured! Oh well...i guess life can't always be that easy. Thirdly, I've read so much conflicting info on the web about people like me, it makes me even more sick! Some doctors think its Chronic Lyme Disease, some don't believe in it, some say you really have Chronic Fatigue Syndrome or Fibromylagia, some say there is no such thing--it's really Lyme Disease, some say you need to be on antibiotics for a gazillion years, some say thats absurd, some say it could be MS or ALS, some say it requires physchiatric help, some say you have a sleep disorder, some say Mercury Poisoning! Pull out your fillings! Some say there is NO way the mercury in dental amalgams can harm you, and the list goes on....My god, its enough to drive you CRAZY!!!! Who do you listen to?! Well, for starters, we need to trust our doctors...the real ones...the ones who practice standard medicine...and the reason for this is simple. When you tell ur family doc you have a problem, he will give you an honest answer---may not always be the right one, mind you, but it WILL be honest. There are a TON of qwacks out there and the internet is like their breeding ground! Believe it or not, there really are doctors out there who want nothing more than to seperate YOU from YOUR MONEY with pseudo-science and unproven remedies! Sure, some of these radical treatment may work, or they might kill you...who's to know. In the end, however, don't underestimate the power of the Placebo Effect! Medical studies have proven over and over and over again...when someone wants something to work, sometimes it will! That's a proven fact! Hey, we could all be so lucky as to have that be the case for us. Wouldn't it be grand if I believed in something so much that it cured me? Hmmmmm....I DO believe in God...maybe I should pray more.
Let me share a story with you...I went to see a infectious disease specialist over the summer. He gave me his opinion and told me after three months of treatment, there is no way the infection could have survived. He even went on to say that in my case, using Rocephin "was like dropping 5 atomic bombs on the state of Rhode Island!" He was surprised that I was even prescribed it to begin with and of course I didn't work for me anyway. Further, he shared a story with me. He told me about a woman who went to LLMD and, because her symptoms were so vague, he was able to convince her that she did in fact have Lyme Disease and that this will require long-term IV Rocephin. She took the doctors orders but in order to do so, she had to spend her ENTIRE LIFE SAVINGS and even SELL HER HOME to pay for it! He insisted that this was her only hope so she did it. After one year and over $100,000 dollars later, she had NO resolution in symptoms. Finally, after being fed up, she abandoned this LLMD and finally went to see my infectious disease specialist. He was appalled by what had happened to her and after running tests and clinically examining her, it turned out she never even had Lyme Disease to begin with! I believe they found she actually had Lupus so they treated her for it and a few months later she was doing great! This is a true story! In my case, this infectious disease doctor recognized that I may have contracted Lyme Disease sometime in the past year due to a very positive Elisa/Western Blot but that an infection was no longer an issue with me. He tested me for other possible causes of my illness and everything turned up normal. At this point, he admitted VERY HONESTLY to me that he understood that I was very sick, however there was nothing more from an infectious disease standpoint that could be done for me. He didn't know what to do so he wished me luck and that was the last time I saw him. Of course, I was disappointed with what I was told, but I appeciated his honesty and I didn't feel that he had abandoned me---he was actually doing me a favor by saving me time and money! Of course he could have probably made a fortune off of me by giving me more antibiotics and making more appointments, but he truely didn't believe it would help me in any way.
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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