Discussion in 'Fibromyalgia Main Forum' started by mindbender, Oct 4, 2006.

  1. mindbender

    mindbender New Member

    Hello all of you in the know. I have to be going now, but will check this post tommorow. I have been checked for Lyme Disease before, and came out negative. Can the test be wrong? I'm getting real antsy about these things the more I read.

    The drugs I take don't work the way they have been discribed to me. After all the drugs that I have been prescribed, it all comes down to Lyrica 900mgs a day.
    (Elavil), when ever I want, and I'm still in pain and disgruntled.

    Can the Lyme test be wrong? Do the antibiotics really work? I've had problems for a very long time, and felt comfortable here, since I've been here. Please help. Can a tick bite when I was younger affect me now, and the test be wrong?
    [This Message was Edited on 10/05/2006]
  2. victoria

    victoria New Member

    Believe it or not blood tests are NOT 100% reliable for Lyme or almost anything else. (If anyone knows what tests ARE 100% reliable, please let me know, seriously.)

    Blood tests only measure what is in your bloodstream, ie not is what in tissues or end-organs. Lyme and coinfections and other stealth pathogens are good at hiding out - they can go inside blood cells, tissue cells, etc and also form cysts with immature lyme cells to be released as needed.

    I'm assuming you had the Western Blot done by Igenex? It's the best, but not 100%... many who have had Lyme for a long time do not show as positive until after a period of being treated with abx actually, as the spirochetes are released into the bloodstream.

    That is why you need to go to a 'Lyme-Literate" MD. Check out the Lyme board here, and also go to for info about why it is so hard to dx by tests, etc., and to find LLMDS. Also please read about how there are over 100 strains of Lyme alone and different abx work on different strains, there isn't one for all strains of Lyme.

    Pts should be treated based on a 'clinical picture' overall, even the CDC says that... yet your average, ie, most, doctors hold back treatment if the blood tests don't show it, won't even try a trial of abx. If you take abx plus Flagyl for the cyst form, and you have a herxheimer effect - you know it is killing the nasty little bugs!

    all the best,

    [This Message was Edited on 10/04/2006]
  3. cbs1234

    cbs1234 New Member

    The lyme test can be false positive OR false negative--just like any other medical test. Be very, very wary of the lyme diagnosis. Although it is real, lyme is also a fad diagnosis amongst alternative practitioners. Long term treatment with antibiotics carries heavy risks, so be careful before moving forward with treatment.

    Don't beleive for a second that the Igenex test is the only one that works. I have never heard of a negative from Igenex. Be wary of a lab that claims to have the only effective test for a particular disease when there are many much more reputable labs that also test for lyme.
  4. victoria

    victoria New Member

    I certainly have heard of and know there are negatives from Igenex, a good friend of mine got a negative, I have since talked to others as well; Igenex was also recertified as a lab, even tho the NY Times ran an article against it; so it is a reputable lab.

    but you're right, it's not 100% either way at detecting or not, NO test is, that is my point. The only way to tell is a clinically monitored trial of abx.

    I know chronic Lyme is something of a political football right now as to the 'right' way of treating and whether or not it exists as chronic Lyme after 28 days of treatment... as well as what bands should be read and should not, etc., and interesting that certain band was reserved for making a vaccine yet isn't included in CDC's protocol.

    Speaking of CDC, even they say suspected Lyme shouuld be treated based on a clinical picture... even if the tests (plural) are negative.

    These are decisions that need to be weighed carefully by everyone. If one takes the time to read the research & medical history (ie, how the use of penicillin cleared up syphilis and they also 'cured' many schizophrenic pts who really had syphilis, not to mention many many other diseases), IMHO Lyme is a bigger masquerader than Syphilis. And to the doctors I know as well, even tho they won't stick their necks out to treat it.

    As are the other stealth pathogens.

    Not in a fighting mode here, just discussing... big difference I hope...

    all the best,

    [This Message was Edited on 10/04/2006]
  5. mollystwin

    mollystwin New Member

    I have heard of several who have had negative Igenex Lyme tests. Never heard of a false positive on a lyme test, but I guess it could happen.
  6. cbs1234

    cbs1234 New Member

    Just be very, very careful before going on a long term abx treatment protocol for something that is not proven beyond a shadow of a doubt. The proposed cure can be much worse on the body than the purported "infection" you are trying to kill. I am a living breathing example of antibiotics gone wrong (5.5 years later).

    Many abx, especially the fluoroquinolones like levaquin, cipro, avelox, etc, can produce some very nasty side effects that can be permanent. Many folks on these antibiotics for lyme are told that the side effects of the drugs are simply herxing and to continue to take the abx. Playing off side effects as herxing could be fatal at worst and life changing at best.

    Do a quick google search for adverse reactions to levaquin, cipro, etc and you will find folks that have been harmed long term by these drugs. You can also do a quick search of this site for these drugs and find many posts telling of the horrors of ingesting these abx. The long term problems look an awful lot like the symptoms people play off as the symptoms of herxing.

    So, be careful before jumping on the lyme bandwagon.
    [This Message was Edited on 10/05/2006]
  7. victoria

    victoria New Member

    informed consent is what is important here... it always is.

    But there are few drugs that don't have side effects. Like chemo for cancer, etc... I was just reading something that it could take 10+ years for the effects of chemo on the brain to disappear.

    Serious diseases are difficult to treat, and one always runs a risk no matter what one does or does not do. Even having my daughter with Rocky Mtn Spotted Fever treated with the heavy duty abx used for it was risky... and no guarantees... but without it I know she would've died, she was in really bad shape by the time she was admitted to the hospital (10 days in ICU).

    Actually Tylenol even is a drug that is often toxic to people even tho it is OTC, because so many thing have it in it now and people get in trouble because of overdosing.

    all the best,

  8. baanders

    baanders New Member

    Keep getting tested once a month or so for both the Elisa and Western Blot test. Get tested 3 times. Within 3 times of both tests, you should know for sure!

  9. Gail8899

    Gail8899 New Member

    I tested highly positive on the Western blot twice, and not from Igenex. My best friend tested negative, but had spirochetes cultured from her urine. She is much sicker than
    I am because her body did not fight the Lyme at all, and so produced no antibodies.

    There are also many other tick borne infections that will not show up on a Lyme test.

    Yes, a tick bite from childhood could have infected you, and you may now be having problems because your body is getting too tired to fight it anymore. If the immune system can not pin point the enemy it will start going after everything in an attempt to kill something it knows is there, but can not see.

    Drs who will treat "late stage" Lyme are few and far between. Even with proper treatment it is not a sure thing that you can be cured. The Lyme simply has better ways to hide and to travel where antibiotics have a hard time reaching it.

    Personally I would not recommend Levaquin, or Cipro for treating long term Lyme. I had a carotid artery to disect because of Levaquin, and Cipro did nothing for my Lyme, but sure did a number on my guts.

  10. hopeful4

    hopeful4 New Member

    Since lyme disease is known as the "great imitator", yes, you can be misdiagnosed. Many of us here have been. Most doctors just don't know enough about lyme, it's symptoms, and how to diagnose and treat it.

    As people have already said, the tests can be false negative. In chronic lyme sometimes people test negative until after beginning treatment. Then, after a couple of weeks, they will test positive. It is a clincial diagnosis, testing alone is not proof that you have it or don't.

    There are many different treatment protocols, depending on the doctor, the patient's symptoms and presence of co-infections and/or collatoral issues, and how the patient responds to treatment.

    Some protocols use prescription antibiotics and other meds, some are more naturally based, and others are a combo of the two. The treatment I am on uses prescription antibiotics and antivirals, herbal tinctures, supplements, vitamins, diet, sleep meds, probiotics and more.

    For more info on treatment see Dr. Burrascano's Treatment Guidelines and Diagnostic Hints. For alternative healing get a copy of "Healing Lyme" by Dr. Buhner (naturopath). Also, look into cumanda, samento, and burbur (I use these in conjunction with RX meds).

    Yes, a tick bite when you were younger could affect you now. My suggestion is to find a lyme literate doctor and get a real diagnosis. You can find a doctor by posting on lymenet, or by finding a lyme support group in your state. Get googling!

    Best wishes,
  11. Chootik

    Chootik New Member

    I was just diagnosed by an IGENEX Western Blot test and am wondering what protocal are you on?

    What meds are you taking? and what has helped you the most?

    You mentioned that you are doing much better now, so I'm really curious to find out.

    Thanks :)
  12. mindbender

    mindbender New Member

    Tank you all, you are all so inforative


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