MOVED POST What my Dr said about lymeleftygg

Discussion in 'Lyme Disease Archives' started by Sharon, Apr 30, 2008.

  1. Sharon

    Sharon New Member

    what my dr said about lyme 04/23/08 08:20 PM

    i asked my dr about testing me for lyme i was tested 5yrs ago dont know which test.

    she said it wasnt neccesary cause i was neg, it was an infectious disease doc i went to. i wasnt as informed then
    as i am now thx to this site.

    i said i always felt like i need a big dose of antibiotics. she said lyme isnt treated with antibiotics.

    all ive read here says different.

    shes been great about my meds but should i go else where.

    ty in advance love Gail

    ps 2 things seem to be at beggining of crash. stress from my son being arrested for assualt and then i was swimming in warm therepy pool and thought i caught something there.


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    monicaz49


    lyme 04/23/08 11:15 PM

    inquiring about lyme is like opening up a whole new can of worms.
    Controversy over the sensitivity of tests
    controversy over the reliability of negative & positive results
    controversy over the extent of treatment
    controversy over the diagnosis or lack thereof

    It wouldnt hurt for your doc to retest you....but that just brings up the issues above. Some say to test via Igenex lab, however there is again speculation that there are many positives coming out of this lab and how accurate their results are.

    I have tested several times negative on standart Elisa tests, but positive on Igenex. Diagnosed lyme by a reputable LLMD but laughed at by multiple infectious disease docs.

    Its horrible wondering through all of this "I wonder IF It is lyme?" It would be a shame if it was and we all ended up wasting so much time NOT taking treatment". Then again, it definitely may not be and it would be harmful to take antibiotics for such a long long time, aggravate candida at the same time and waste much needed money.

    At this point, I am a big time CFS sufferer. But...I do always keep lyme and the latest research/info in the back of my mind. Im on "lymie" hiatus for now.

    Good luck.


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    EricaCFIDS


    lyme lyme lyme??? 04/24/08 08:39 AM

    Hi Gail and Monica,

    I agree it's all confusing, but my understanding of the IGENEX testing is it can only be positive if it detects something (like a pregnancy test). I don't believe that there are false positives, only lots of false negatives. Also, most agree that the testing is marginally reliable at best (mainly due to the high incidence of false negatives) and go mostly off a clinical diagnosis.

    Monica, have you ever tried taking lyme specific ABX? If so, how did you feel during and/or after? In my opinion, lyme is very possible and likely for many disease sufferers out there, and I believe the reason for many of the CFS/FM diagnoses. I agree that the idea of taking ABX for a long time is a concern, but if your LLMD is good he will counter it with strong probiotics and antifungals. I believe that we are all sick, but what is the cause?? I don't believe CFS/FM are a cause, only an effect. Common sense tells me that there is a reason we are all sick. Treating the symptoms will help some, but eventually we will all get worse and never better without treating the cause.

    Have either of you been tested for metal toxicity? Apparently that can be a cause as well. I'm currently looking into both lyme and metal toxicity. I've spent so many years feeling bad and so much money that at this point for me I feel it's a good step to rule out both.

    Gail, if I were you I would give it a go. Find an LLMD who will do the right testing after "flushing" out the lyme first and rule out metal toxicity as well. Lyme is treated with ABX. IMO, it doesn't sound like that doctor knew what they were talking about. There are very few truly lyme literate doctors out there. Those are the ones to see.

    Good luck to both of you! It's a personal decision for each of us....

    All the best,
    Erica


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    blinkie


    lyme and Igenex 04/24/08 09:21 AM

    Hi Gail-
    I agress wholeheartedly with Ericacfids. I think lyme is at the heart of many of these "chronic" conditions. Research is jsut starting to come in about this in regards to alzheimers, autism, and even rheumatoid arthritis.

    Igenex may not be perfect, but it's the best we have. The CDC recognizes it as a valid test as well. IF they didn't, they wouldn't have introduced criteria to dictate a positive on that very Igenex test. I tested CDC positive on Igenex with many very lyme specific bands. I am responding to abx and I have hope that I will have my life back.

    In the end, I don't care what anyone says...this disease would have killed me without treatment and long term abx is the only way. I know they are bad to take long term but I, like many others, do not have a choice.

    I would keep your Dr to help with labs and prescriptions but I suggest seeking out a Dr knowledgable about lyme disease. You can have your life back.

    blinkie


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    liesandmorelies


    Ditto...... 04/24/08 09:39 AM

    I agree with the last two posters.....

    I've been dx with FM poss. ME but am awaiting my test results from IGeneX...I had a rash 16 yrs ago and given a small dose of abx....If my results are positive, then I've possibly wasted 16 yrs.

    I ran into many dr. that said they didn't want to test me. I've had Elisa's come back negative. But as you may or may not know. If you have had Lyme for a while, your body many times stops making the antibody that would show up in the initial Elisa, thus giving you a negative result. It's very important to be tested with a Western Blot and Coinfection Panel...

    As Erica points out and the CDC agrees, Lyme is a clinical dx. The tests are only there to help dr.s come to that conclusion....Erica is also correct regarding false positives....It's a lot like a pregnancy test.....

    PS. If all you have read says different than what your infectious disease doc. says then why would you at least not get tested?????Follow your gut...There are many ppl. on the Lyme board who can answer many questions you may have...

    Good luck,

    LAML


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    leftygg


    thank you so much 04/24/08 10:02 AM

    Monica Erica Blinkie Lanl thank you

    i needed you all to tell me what my gut was telling me.

    ive had hair analisis for metals.

    is infectious disease dr same as llmd.

    like all you if it is positive ive wasted a lot of yrs and money.


    love gail


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    pj1954


    leftygg 04/24/08 10:10 AM

    if it were me I would find a lyme literate doctor and request an igenix western blot test. dont waste your time with an infectious disease doctor most of them dont believe in lyme in the first place.

    I had 3 negative elisias ,was tested by a total of 7 different doctors all missed lyme. I went to a ilads doctor and got an igenix western blot test and found I had babesia after suffering for 16 + years.

    erica,blinkie,laml,molly,dar,munch and many others are here trying to get the message out hoping maybe we can help someone get the right dx earlier then we did and help them find the right doctor, one who will listen to you and not tell "you its all in your head " we all know its not -pj

    [This Message was Edited on 04/24/2008]


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    EricaCFIDS


    Hi Gail ( : 04/24/08 10:11 AM

    NO!! An infectious disease doctor is not the same as an LLMD. It's possible that some LLMD's are infectious disease specialists but they are not the same thing. An LLMD stands for "lyme literate medical doctor". They are hard to find and some have been treated terribly for helping people with lyme. Some have been stripped of their medical licenses for prescribing long term ABX, which is often the only treatment for lyme, especially latent lyme. The FDA and AMA has no understanding of this.

    I found my LLMD by posting on the California Yahoo lyme board, but I know there are many great places to get a referral (ILADS, CALDA, lyme disease organization, etc.) or post for help where to look on the lyme board here. There are very nice people over there who know great ways to find an LLMD in your area. They are better experts than I am! ( :

    Go with your gut! We're all here to help you too. Its great to have support and that's what we're here for. I think you are definitely making the right decision.

    Good luck and all the best!
    Erica


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    mollystwin


    leftygg 04/24/08 10:12 AM

    Not all infectious disease doctors are LLMDs, most are not. You need to find a doctor who understands lyme in order to get properly treated.

    Monica,
    I had candida even before I was diagnosed withe lyme. With careful diet, antifungals and probiotics I am keeping the yeast under control even after 15 months of abx. I am feeling so much better! I also had heavy metals.

    I would recommend everyone get tested to rule out lyme, heavy metals and any other stealth infections. You owe it to yourselves to find out what is wrong and treat it and get better!!

    Take care,
    dar




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    liesandmorelies


    NO!!! 04/24/08 10:13 AM

    A LLMD is a "LYME LITERATE DOCTOR"....They have spent many hours studying Lyme Disease specifically....Many only treat LD patients......An infectious disease doctor may alos treat Lyme, but they also teat many other infectious diesese as well....

    LLMD are the ones who specialize in Lyme Disease....

    There are people on the Lyme Board who can help direct you to a good LLMD. Check it out over there.


    Good luck,

    LAML


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    EricaCFIDS


    P.S. 04/24/08 10:14 AM

    You're welcome!!

    Love,
    Erica


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    leftygg


    you all are the best 04/24/08 04:20 PM

    only here can i get the answers i need.

    even tho my family believes im really sick they have no idea what i need.

    ill be looking for a llmd ty all love gail