IGENX positive western blots rates? Lyme? autoimmune?fibro? MS?

Discussion in 'Lyme Disease Archives' started by herbqueen, Aug 16, 2007.

  1. herbqueen

    herbqueen New Member

    Hi- question does anyone know what percent of IGENEX labs test positive for western blot? I've read that bowen tests 100% positive. If so, that makes me very suspicious. After 9 years of diagnosis of FMS , I then was diagnosed with optic neuropathy and now very scary MS like symptoms. I was on the Zhang protocol for 7 months and got this big flare with new and scary symptoms several weeks ago (muscles jerking, twitching all over, loss of percetpion of object.missing when reaching for things, dropping things loss of balance, arms /hands falling asleep at night, body on fire and nervous system on overdrive. Zhang recommended going off his herbs and looking at abx and getting checked out by a Neuro. I'm considering LDN therapy (the prescription in in th email). I have an app't with a Neuro in September. I did test positive on western blot but I am suspicous of high positive test rates for igenex. I called igenex and they could not answer my question. Any thoughts out there? Are there any cases of true healing with long term abx? I can't find any. I'm confused . I don't want to put my body throug hyears of abx if this is autoimmune and possibly do more damage. Also considering homeopathy. I'm pretty scared right now about MS.
  2. mollystwin

    mollystwin New Member

    I have several relatives that have tested Negative with Igenex western blots, so they do NOT have a 100% positive rate like some say they do.

    I was told by several doctors that I probly had MS. I am now in treatment for lyme and getting better.

    I believe if you test positive with an igenex western blot and you are having all these symptoms than you have lyme not MS. Did you have a CD57 test? A low score on this test could confirm your lyme diagnosis.

    There are cases of true healing with long term abx. I am a member of the lyme association in my state and have met some who have recovered. It takes a long time, but you can recover.
  3. Di1207

    Di1207 New Member

    I was told I had MS last year. I went to the head of the MS clinic at Temple Hospital IN Phialadelphia. He took one look at my Mri's and said no MS. My neuro was ready to treat me for MS. I have demylation And non specific white spots in my brain. Also had all the symptons of MS. You know them. I had the ones you are so frighten of. I have lymes. Please see an MS speicalist. My neuro was wrong. My preception is better. My balace is back (except when herxing). I dont trip and fall like I did. I can tolerate heat now. I can feel with my fingertips again. I came out of it on my own befor treatment. These symptoms return in a milder form.Some not at all. Think postive.
  4. munch1958

    munch1958 Member

    I had been on Doxy for 9 days before my blood was tested. Overall, my Igenex test was negative but I had some positive and indeterminate bands that are specific to Lyme. All bands are not created equal.

    My LLMD says I probably would have had a stronger positive blot pattern had I not been on ABX. My Detroit FFC doctor was too ignorant to know the test should be done while not on ABX.

    Some days I wish I would have had a positive test to show to nay-sayers. Most of the diagnosis doubters are doctors who have little to no knowledge of Lyme disease.

    I also have brain lesions on MRI. My neuro would like to do a spinal tap because because I also have sarcoidoisis. I don't want to subject myself to that just so he can see what's REALLY going on. NO THANKS! I've had enough invasive surgeries and tests.

    Even though I presented with multiple symptoms of many different disease processes my neuro never raised the possibility that it could be Lyme. Nor did he offer me anything other than Topomax for migraines.

    I know what you mean about getting your hopes up for yet another useless protocol. It is a very hard let down to have a treatment not work especially when you have years invested in it.

    Last year I took Minocycline for 6 months. My TMJ got better. My migraines only happen when it rains now instead of every day. My GERD went away and I was able to stop the purple pill for the first time in 20 years. My asthma went away and so did my long standing severe chest pain.

    All very good progress. Yes, I'd love to be able to say my FM went away too. I do have a problem with parasthesia or my arms, hands and feet falling asleep. My LLMD believes that I have one or more co-infections. The sicker you are the more likely you are to have another bacteria besides Borrelia.

    Lately, I've developed some new symptoms that could be due to killing off the bacteria. The Lyme spirochete is 5 times more sophisticated than the syphillis spirochete.

    Have you looked into the Roadback.org website? or cpnhelp.org website? There are new websites cropping up everyday dealing with long term ABX protocols. I think people are resorting to these protocols because they do find them helpful.