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    Old 01-14-2005, 11:40 AM   #16
    dealer1111
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    Re: Difficulty accepting Lyme as a diagnosis

    My first visit was $300.00 and each after this as been $85.00.

    He is located in PA near King of Prusia, if this is of help to you please let me know I will get his information for you.

    Today he called me at 9:30 (my doctor) just to ask how I was feeling!

    I would like to know how many other doctors do this?

     
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    Old 01-14-2005, 11:49 AM   #17
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    Re: Difficulty accepting Lyme as a diagnosis

    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.

    Last edited by CFD 333; 01-14-2005 at 01:05 PM.

     
    Old 01-14-2005, 08:33 PM   #18
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    Re: Difficulty accepting Lyme as a diagnosis

    Standard medical doctors were going to let my son die! I'll stick with my LLMD--the ONLY one who is letting him live a normal life again.

     
    Old 01-15-2005, 03:59 AM   #19
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    Re: Difficulty accepting Lyme as a diagnosis

    For a cold or a broken leg standard doctors are fine, but they did kill my mother and almost killed me.

    You say standard doctors to me this means they will for the standard screw up your life totally.

    And I know for a fact that fillings in your teeth that are silver are dangerous with no doubts I am living proof of this. If you could see the color of my skin and the way I looked before the fillings where removed and now, it is night and day!

    And it is hard to believe what any doctors say about Lyme since everyone seems to have different ideas? But if you could see me two years ago and today, there is no doubt that my LLMD is on the money and the only one after 30-years of doctors that found that I had anything wrong with me!

     
    Old 01-16-2005, 01:50 PM   #20
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    Re: Difficulty accepting Lyme as a diagnosis

    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.

     
    Old 01-16-2005, 05:43 PM   #21
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    Re: Difficulty accepting Lyme as a diagnosis

    lamotta, i have a question for you and a response in general to my very brief experiences with lyme and 'standard docs' over the last few months.

    Your initial post in this thread stumps me. You tell of your diagnosis, questioning it in comparison to others' symtoms but feeling relieved at having a diagnosis, going on abx and getting no relief whatsoever, discussing this whole scenario with your nurse, being initially angry at the medically community, to ??? what? Where are you at today? How are you dealing with whatever it is that is ailing you and what do you think it is?

    Secondly, three and 1/2 years ago I noticed a ringworm like rash, it spread, once went away, but overall, I've had it this whole time in various locations on my body.

    My old GP never 'heard' me when I mentioned lyme and I had no reason to push it, just a thought at the time.

    The dermatologist that I was refered to for rash told me she KNEW I didn't have lyme - 1 year ago.

    The GP I tried on referra from a friend, fresh out of school WAY pooed the lyme theory 3 months ago, and by then I was feeling miserable and scared as by body was under attack for the first time. He convenienently honed in my depression medications... was I taking enough?

    The next GP I sought (is a GP to the lyme support leader in my area, we thought he was sympathetic/open and possibly would coordinate with LLMD that wasn't taking new patients) WAY, WAY, honed in on my depression, and told me while looking at the list of symptoms I had given him, 'If I take this list of symptoms out to my waiting room and ask them whether or not they have these symptoms or not, 3/4 of them would say THEY had lyme disease!
    He too encouraged me to STAY ON MY 'MEDS' and said without a doubt I had exzema, if i'd take a buttload of oral steroids for two days, that by turkey day, i'll be feeling good as new.

    I knew after that, that no matter what, I had to find a LLMD and be tested by a knowledeable lab and at least, rule lyme out. I was not going to re-live the horror stories I had been reading here on the boards and beginning to experience first hand.

    The gyn I saw last week (recently moved here from AZ) was absolutely positive that I should be able to walk into any Infection Disease doc's office and be treated with the best that the medical community can offer. YOU'D THINK SO, WOULDN'T YOU??? I appreciated the opportunity to respectfully tell him what was going on - that it didn't matter what your speciality or lack of, was. What mattered was whether or not one had done there homework, are still doing their homework, works independently of what the health insurance company docs spew, and is willing to risk much to see that patients are adequately tested and treated.

    so...
    Standard docs to mean equates to all docs of any specialty who have not been educated on this still much unknown bacterial disease. And that is the nice description. I believe from what I hear, that there are plenty in the field that know what they are doing is WRONG and still put their heads in the sand.

    When antibody tests show that indeed, bacteria are on a mutiny in after many different combinations of abx, lyme sufferers KNOW that they still have spirochettes and waste ravishing their bodies. Yet, doctors say... no, you can't STILL have lyme... ????

    As a professional in the medical community, seeing first hand the lyme patients alone that have been wrongly diagnosed and/or sorely undertreated for YEARS, I question how you can 'edit' recommend 'standard' docs.

    And Lamotta, please do let me know where you stand in terms of your healing today.
    Puzzled & frustrated... cj

    Last edited by cjFTWORTH; 01-16-2005 at 08:05 PM.

     
    Old 01-17-2005, 03:27 AM   #22
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    Re: Difficulty accepting Lyme as a diagnosis

    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.

    Last edited by CFD 333; 01-17-2005 at 04:03 AM.

     
    Old 01-17-2005, 04:27 AM   #23
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    Re: Difficulty accepting Lyme as a diagnosis

    Good morning Lamotta,
    Though I wish I could have slept longer...

    First of all, after reading your post, I realize that my post came off as attacking you personally and for that, I apologize. Please forgive me. I was spewing out of frustration, out of my own short history with the medical profession, and greatly for those who've gone through truly, horror stories because, in my opinion the medical community is in the dark ages about lyme. In saying that, I do mean that this is unecessarily so.

    I'm brand new to lyme. So much of what I shared I do not KNOW, I'll have to admit. Lamotta, I did use the term 'antibodies' but what about those who use other tests that show live spirochettes? After months and months of treatment? For me to try and 'debate' lyme with my knowledge base is using my resources poorly... - I'm not sure why, but your post just stirred 'fight' in me. Maybe from fear... I need to trust that somebody will be able to treat me and be trusted. Your post threatened that.

    You asked me to share my story. My diagnosing history is in a nutshell been told. I've tested positve for lyme with Ignenex labs on the IGM & IGG and waiting on coinfections testing results - hoping to get them today. I'm hoping to attack this disease with complemenary medicine.

    I do hope you find health and answers and peace. Hope the same for me and the rest that suffer with anything.

    Happy Monday. cj

     
    Old 01-17-2005, 06:44 AM   #24
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    Re: Difficulty accepting Lyme as a diagnosis

    Question for Lamotta - From your professional point of view - How good are antibiotics at penetrating soft tissue such as the brain, heart, liver, kidneys, etc.... I know that some are better than others but is this even possible of antibiotics?

    Thanks,
    ncgirl88

     
    Old 01-17-2005, 07:10 AM   #25
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    Re: Difficulty accepting Lyme as a diagnosis

    Hello Fellow Lymies,

    This struck me as the crux of the dilema "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"
    I am going to a LLMD who has an excellent reputation. He said " Medicine is much of an 'ART' as a science. Forty years from now many of the ideas about diseases and other medical problems will have proven false."
    So Lyme disease is not fully understood. For example, now they think it may be over a hundred different pathologies. Perhaps the medications work on some of those pathologies and so people find they are "cured".
    So what can one do. I have tested positive. I am seeing a LLMD. I am also taking supplements. I am exploring alternative methods e.g. Modern Chinese medecine. I also try to let anything go that can effect my immune system like ANGER & RESENTMENT. I read Healthboards most every day.
    I have been duped by false promises for cures. I have had my battle with the doctors billing staff & insurance. Lawyers are a whole other topic. It is frustrating! God Damn it!

     
    Old 01-17-2005, 12:14 PM   #26
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    Re: Difficulty accepting Lyme as a diagnosis

    I have heard from many including a doctor of vet medicine who works at NC State Vet School who knows a lot about Babesia - he said that he is sure there are strains that have not even been discovered yet that exist. The same goes for lyme...

     
    Old 01-17-2005, 12:45 PM   #27
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    Re: Difficulty accepting Lyme as a diagnosis

    CjWorth, your apology is accepted. I understand how my previous reply could seem threatening because of the negative nature of it. I wish it wasn't so, believe me...I want to be cured as bad as anyone else on here, but I just refuse to lose sight of reality. Please remember though that my situation would be classified under the "worst case scenario" group. Fortunately, many people can and do see some benefits from antibiotics very quickly, so for them treatment is justified. You can't argue with results---or the lack there of for that matter. About detecting the actual bacteria in the body, there is a way to do this, however, it just isn't very reliable as a diagnostic tool. It's called the Lyme Disease PCR which can detect the Borrelia DNA in blood, urine, and spinal fluid. Unfortunately, in late stages of the disease, these bacteria rarely remain in these fluids; they tend to reside in body tissues and organs. Trying to find the bacteria with this method is like finding a needle in a haystack. Therefore, you could have tons of false negatives with this. I wouldn't rely on this test for a diagnosis, unless of course, you wouldn't object to them taking a brain sample! No thank you!

    Ncgirl88, fortunately some antibiotics are very effective at penetrating tissues which are also quite effective at eliminating Borrelia. The tried and true of these would include Rocephin, Tetracycline, Doxycycline, and Minocycline. Any of these would be great choices, especially late in the disease. I've read that other drugs like Cipro and Levaquin are starting to be used at high doses to improve tissue penetration, however, they aren't very good candidates for long term use due to the risks of side effects.

    Samaya35, I agree with the point of view that Lyme Disease is not fully understood. There are things going on with the disease in some people that even antibiotics can't seem to cure. It can leave a lot of damage in its wake for people like me. Unfortunately, this leaves many of us at wits end and we fall victim to bogus claims for a cure. I'm sorry that this happened to you--i'm sure everyone of us has been let down at some point. I can sympathize with billing and insurance problems---seems like thats going to be a problem for anyone with long term problems unfortunately---i've had my share as well.

    If I seemed to offend anyone I apologize for that...having differing opinions can lead to some pretty heated posts. Just remember that we are all in this together and I'm only trying to help. If anyone has any questions for me, I would be more than happy to try and answer them. Thanks.

     
    Old 01-17-2005, 02:00 PM   #28
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    Re: Difficulty accepting Lyme as a diagnosis

    Hello Lamotta,
    "About detecting the actual bacteria in the body, there is a way to do this, however, it just isn't very reliable as a diagnostic tool. It's called the Lyme Disease PCR which can detect the Borrelia DNA in blood, urine, and spinal fluid. Unfortunately, in late stages of the disease, these bacteria rarely remain in these fluids; they tend to reside in body tissues and organs."

    The Chinese medicine man claimed the PCR test as proof that his herbal meds cured Lyme disease!!!! So your topic about "Difficulty accepting Lyme as a diagnosis" seems well founded. It is bad enough that I may experiment with this Dr's method, but what if I shared it on the Healthboards as an inexpensive way to cure Lyme with none of the potentially serious side effects of Antibiotics.

     
    Old 01-17-2005, 02:19 PM   #29
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    For Lomotta

    Lamotta,
    I appreciated your previous two posts. Yes, llmds do find lyme in many, many people and save their lives. But I do agree that there may be isolated cases such as your own and that of your friend in whom lyme is 'proven' yet not accurate. llmds are human beings and human nature being what it is, some could be misguided or motivated by great ideals yet seeing lyme even where it's not. They put their shoes on, after all, just like you and I and standard docs. It all comes down to each individual and his/her conscience and objectivity. I hope you will receive help by the right person along the way. I've spent googobs on trying to cure an 'ovarian problem' before I was told it was possibly lyme and frankly, my skepticism has grown taller and sharper than Pike's Peak.

    I am facing a dilema as well. I've tested for high fibrin in my blood, supposedly an effect from 'lyme' as proven by several other lyme special tests. Yet I feel okay. Occassionally I'll have what I think is flare up of rhematism or muscle aches but I overcome. I took my lyme tests to an ID and he said they were ridiculous becuase my sedimentation rate is so low (numeral #1) yet I can't see how that's relevant personally.
    I read, read, read and read on the internet until I'm blue in the face and bleary eyed. Liquid oxygen cures lyme! Hydrogen peroxide! Don't take antibiotics if you're not actively sick because they can't cure it anyway! and on and on--claim after claim. I just don't know what to do and even though I post on this board and get great insights, I just still don't know what to do.
    Frankly, I'm afraid the llmd I saw found lyme because that's what he was looking for. Whatever....I'm not meaning to vent but you seem to have a lot of insight.
    I figure if I take the antibiotics it will short circuit my immune system and the lyme (if I have it) will come back on my with a vengeance. After all, so far, my body is handling it.
    Do you or anyone have any suggestions on any next steps I should take? If not, that's okay.
    Thanks for sharing,
    Ozarka

    Last edited by Ozarka; 01-17-2005 at 02:29 PM.

     
    Old 01-17-2005, 03:37 PM   #30
    Ozarka
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    Re: Difficulty accepting Lyme as a diagnosis

    Samaya,
    Ticker is wonderful. I took his advice and saw a llmd he recommended. I think the fellow was superbly qualified but he talked down to me. I initially said, rather sheepishly, that I didn't know if I had lyme and thought I might be misdiagnosed. He then defended the 'diagnosis' of lyme in the medical community for a chunk of my appointment. I felt pretty stupid and that once again the other causations for my problem may not be expplored. I asked him if I should leave well enough alone but he said lyme would come back on me and be devastating if I didn't cure it. I questin though, what's a CURE.
    (I"ve had it probably for over a decade. I did have a time when I had lyme symptoms. I would lay awake in bed for four monthts at night, feeling like I was going insane. For these months, Pain would migrate all over my body, joints and muscles after an initial virus experience that left me with a sore chest when I breathed deep. Also, a few months later, I'd have facial paresthesis, weird electric sensations, skin sensations etc. and my primary doc just tole me to go to the mental health clinic. Clarify--one told me to see a psychologist, one told me I had hypoglycemia and the other told me I had the beginnings of something but he didn't know). Whatever...
    Truth is though, after that initial, probably time of infection either with lyme or another virus, I"ve been a ball of energy through tragedy and stress--deaths in the family, ended relationships, changed jobs and stress upon stress without any return of symptoms. I know I was fighting something then and I know it could have been lyme, but still...
    so are antibiotics the answer if it can't be eradicated anyway? Or should I find a way to strengthen my own immune system to continue to keep these spirochetes down and out. I never got an answer. In fact, this doc didn't even really ask me about my symptoms except to admit that the then symptoms (during the time of my appointment) such as tiredness etc. could just as easily be representative of the fact of a hormonal issue that was female realted.
    So, yes, I followed ticker's advice which was excellent but not necessarily a reflection of the larger experience.


    So...in short, I posed the queston and logically so. I'm tossing out lifelines.
    Ozarka

    Last edited by Ozarka; 01-17-2005 at 03:55 PM.

     
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