How many negatives before you say enough is enough??

Discussion in 'Lyme Disease Archives' started by HppeandMe, Jun 5, 2006.

  1. HppeandMe

    HppeandMe New Member

    I am so confused!!! I have been told I have Fibro by one doc, CFS by another, and Lyme by at least 2 others. I have had over a dozen Lyme tests with at least half a dozen at Igenex. All negative. I was exposed to tics before I got sick so I thought I had Lyme. Over the past couple years I have had a picc line with Rocephin as well as many other antibiotics for Lyme. I am no better. The docs who say I have Lyme are LLMD's and the ones who say I have something else are not. Who do I believe? I have one last shot. I have some money which I can either continue to spend on Lyme treatments and hope to get better or go to a treatment program for CFS/Fibro. I don't know what to do.

    The Lyme/CFS symptoms are almost identical. The only thing that I have that I don't see a lot of CFS/Fibro patients have is the tearfulness (I feel like I am going crazy/hormonal feeling). I also have a lot of phlegm in my throat and I have only read that as a symptom on a Canadian Lyme symptom site. I have never read about phlegm as a symptom elsewhere.

    Any advice would be truly appreciated!!!
  2. jarjar

    jarjar New Member

    This is tough if you have had 6 Igenex Western blots and all 6 came back negative. I do remember my brother was bitten by a tick and got the bulls eye rash and got on abx early. I remember phlegm was one of his problems. He was bitten in N Carolina.

    When you say your Igenex Western Blot came back negative do you mean not a single number came back positive or did some numbers come back inconclusive? Or do you mean negative by CDC standards.

    jar
    [This Message was Edited on 06/06/2006]
  3. victoria

    victoria New Member

    Hppeandme, as Jay suggested, you may want to request a copy of your results and see if any of the bands were positive - that may be the only way you can find out. At least your doctor(s) tried treatment based on symptoms tho, more than most do.

    Also, treatment protocols vary - my son's LLMD told me that since there are over 100 variations of Bb just in USA, that different abx are needed for different strains... flagyl also needs to be taken a week a month to kill cyst form.

    My son has had extremely slow response to oral abx, we cannot afford IV abx right now... decided to hold off in any case due to recent research showing that whether oral or IV, it can take abx up to 18 monhts to penetrate cell wall of Lyme.

    And then there's the question of co-infections. My son has just completed a babesia protocol since he had sweats, felt different cognitively altho not necessarily improved... is about to start one for bartonella as a result.

    They told us this is what they routinely do even when treating with IV - treat Lyme first, then treat for any (possible) co-infections, then Lyme again...

    his tests for co-infections were negative (altho lyme was positive) but of course it doesn't mean he doesn't have them.

    You might also want to do some reading at ilads.org and also look at lyme flash discussions on treatments etc...

    hope this helps,
    Victoria



    [This Message was Edited on 06/06/2006]
  4. HppeandMe

    HppeandMe New Member

    Thanks for the two responses! Ihope I get many more.

    I have had every test under the sun with Igenex, not just the Western Blot. The first time I did the Western Blot bands 39 and 41 were inconclusive, but the test as a whole was negative.

    The second time I did the Western Blot only band 39 came back inconclusive.

    This is so frustrating. I feel so sick. I don't know how I am going to get disability with all of the negative tests.

    Thanks again and much love!
    Hope
  5. victoria

    victoria New Member

    have you been tested for other stealth pathogens, like Mycoplasma, bartonella, babeosis, etc...??

    V
  6. HppeandMe

    HppeandMe New Member

    I believe I have been tested for everything except Mycoplasma. Is this something I should be tested for?
  7. jarjar

    jarjar New Member

    As they say Lyme is a clinical diagnosis..if you have many lyme symptoms and only one band positive or inconvlusive many LL docs would diagnose that as Lyme. Especially since you remember a tick bite prior to being ill.
    Most LLdocs consider even a inconclusive as a positive.
    So don't worry about test being inconclusive or only one band as postive. Its the LLMD call based on test and symptoms that gives you the lyme diagnosis.

    I think you need to find a really good LLMD that works with a lot of different ABX to help you.
    The majority of FM cases are nothing more then a lyme case that hasn't been diagnosed. Same goes with most of CFS.

    You need to find a really good lyme doc. What state are you in?

    jay

    [This Message was Edited on 06/06/2006]
  8. victoria

    victoria New Member

    mycoplasma was also one of the things tested for by my son's LLMD...

    Another reason to find a really good LLMD, as Jay suggested... and it can take a long time to find the 'right' abx or combination thereof that works for Lyme anyway.

    Victoria

  9. HppeandMe

    HppeandMe New Member

    Thanks Victoria!!
  10. hopeful4

    hopeful4 New Member

    You have been given some good advice here. Lyme is a clinical diagnosis. Testing is notoriously unreliable. So, the LLMD bases the diagnosis on your symptom picture, your history (like exposure to ticks), as well as your labs. Just because you have an inconclusive or negative lyme test does not mean you don't have lyme.

    There are so many different ABX and combination therapies, maybe you just haven't found the right one for you...YET. In addition, you MUST be treated for co-infections, even if those tests come back negative as well.

    Also, it could help you to boost your immune system. Have you been tested and treated for hypercoagulation? Have you used any of the herbal treatments together with the pharmaceutical treatments? For example, I'm on artemisinin, lumbrokinase, cumanda, samento and burbur, along with the prescription meds!

    Most "treatment programs" for CFIDS/FM are not even looking for Lyme Disease, let alone how to treat it. For 5 years I went to different CFIDS/FM doctors, and the words "Lyme Disease" never came up...so how would they know how to treat it?

    I know it's extremely frustrating. Lyme disease is NOT simple, and treating it is NOT a quick fix. Have you looked over the Dr. Burrascano Diagnostic and Treatment Guidelines? You will find some help there. It may take a few times reading through it.

    Most of all, don't give up! You're worth the fight and recovery from this.

    Best wishes,
    Hopeful4

  11. HppeandMe

    HppeandMe New Member

    Hopeful4-

    You always know the right thing to say. I was on many different supplements as well as meds. I am still on many, many meds. With my schedule it is almost impossible just to get the meds down much less the supplements.

    I will continue to go to my LLMD and pray she comes up with the right medication. She would like to put me on Biacillan injections next. I sure hope they work.

    Take good care!!
    Hope