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  • Late Stage Lyme Disease

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    Old 10-10-2009, 11:12 AM   #1
    ChasChan's Avatar
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    Late Stage Lyme Disease

    Forgive me for not having read all of the previous posts, as there are too many of them, and attention span is not my strong suit at this point. So please accept my apologies if this topic has already been covered.

    I suspect that I have late stage Lyme disease, but the diagnoses have been ambivalent. The screening test was positive, but the spinal tap and the Western Blot were negative. My neurologist has dismissed my symptoms as neuropathy from an unidentified source. But I'm not done fighting. And my GP still thinks it's Lyme disease.

    I'm not asking for a diagnosis here, but just additional information that might help me direct future efforts. I have peripheral sensory neuropathy, joint pain, lack of attention span, and lethargy. I am pretty sure that 20 years ago I was infected, as I had a baseball-size bruise on my leg that wasn't a bruise. I was living in Connecticut at the time. But I didn't know what it was, and I didn't experience any identifiable symptoms, so I didn't seek treatment. Is there any chance this is, in fact, late stage Lyme disease, but the tests for the antibodies are coming up negative because it's such a late stage?

    Any information would be greatly appreciated, and again, my apologies for not fully researching this before posting.



    Last edited by ChasChan; 10-11-2009 at 03:34 AM. Reason: added follow-up comment

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    Old 10-11-2009, 06:56 AM   #2
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    Re: Late Stage Lyme Disease

    Hi ChasChan,

    Lyme testing is not accurate. There are 300-400 different strains. There just isn't testing for all of the strains.

    And from what I have found out, the bacteria does not like oxygen. So it imbeddeds into the muscle, bone, brain, ect ect....

    Spinal taps are one of the worst ways of trying to find lyme. I think it is like 3 or 5 per cent will show a positive. I did one and it knocked me for a loop and nothing showed.

    You might look up Igenex Lab, in Palo Alto. Ca. They are suppose to be the best labs around for testing.

    My thoughts would be, find a Lyme Literate Medical Doctor, LLMD. They go on clinical symptoms and not soley on a test.

    Yes you could have had it for 20 years. The bacteria can lay dormant in your body.

    Hope you can find the right treatment soon!


    Old 10-11-2009, 03:52 PM   #3
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    Re: Late Stage Lyme Disease

    Thanks so much for your response. This is more information than I had. So I'll keep pushing on...

    Old 10-14-2009, 09:47 AM   #4
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    crunchiepoochie HB User
    Re: Late Stage Lyme Disease

    Hey Chas,

    Like you, that brain fog is always there. I am doing so much better than before, thanks to my LLMD. It was suggested to follow the Lyme Immflammation Diet, which basically is not sugars , white flour etc.

    I try my best. Good luck to ya


    Last edited by Administrator; 10-15-2009 at 07:26 PM. Reason: inappropriate info

    Old 10-16-2009, 06:16 PM   #5
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    Re: Late Stage Lyme Disease

    My niece finished medical school in Mi, I told her at that time I had Lyme, she lovingly informed me that there was no lyme in Mi. Please know that this is what we are up againest. I got sick in 96, on steroids in 97, taken off steroids in 99 by a Lyme Literate Dr., my results came from the lab in CA., I spent 2 1/2 years on ivs. I have late lyme, it does become dormant and can attack us when we least expect it. Get yourself a good lld, an infectious disease dr has a better chance of being left alone by your state (most of the time). Keep talking about it to people who care, find a good support system, learn all can, find a good advocate who does not have lyme and if you can't that be your own. Good luck and do not give up.

    Old 10-19-2009, 08:08 AM   #6
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    Re: Late Stage Lyme Disease

    Your story is similar to mine......I have replied to Sick and Tired and will suggest the same protocol to you. I have been struggling with this for years and have finally found the answer. The Marshall Protocol takes a strong commitment, but there is lots of support. Traditional doctors are NO help because this is not only a medical problem, but a political one. Hope you will check it out!! And my answer to Sick and Tired also.

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