IgeneX Lyme Positive

Discussion in 'Fibromyalgia Main Forum' started by lilbird, Feb 6, 2006.

  1. lilbird

    lilbird New Member

    I got my Lyme test back today. Looks like it is positive. Not by CDC standard but by IgeneX standard.
    My appointment is on the 21st.

  2. pumpkinpatch

    pumpkinpatch New Member

    You're finally getting some answers. Good for you for being persistent.
    I went to the LLMD this past Sat. Changed up my antibiotic combination.
  3. CAAnnieB

    CAAnnieB New Member

    I'm glad you got the Igenex test. Are you still going to the FFC? Who is your appointment with? I wish you well on your treatments.

    I'm now seeing a Dr. Michael Powell in Sacramento. He tests for hormonal imbalances & underlying/ chronic bacterial infections. I'm on a gazillion supplements! They must be helping because my pain IS improved and so is my stomach!

    Unfortunately, after adding a new Antibiotic last week, I've experienced major die-off symptoms! So I'm backing off a bit & going with a lower dose starting tomorrow.

    I'd like to hear an update from you on what treatments you have done & if you have had any improvements.

    Good luck with your appointment on the 21st.

  4. lilbird

    lilbird New Member

    Cindy, I'm glad you got second opinion. Are you still going to go to FFC? I have cut my ties with them. The new office I'm going to can take care of my hormones and I already have a pretty good handle on what suppliments are helping me.

    Anne, how are you? I'm glad you have found a Dr. Are you treating for Lyme? I think you had told me at one time you were positive.

    I'm seeing the Dr. in Santa Rosa that we had talked about. The one where someone got hep B fom the office. I got in touch with allot of his patients and there allot who are really happy with him. The office was great and I'm really happy with the Dr. He has already started treating me for mold and mercury. I have an appointment with him on the 21st to talk about my Lyme test. We will see what his protocal will be. He really like Richie Shoemaker. His new book Mold Warriors makes allot of sense to me. Try to get you hands on a copy and read it. You too Cindy. If have read the book, I had the gene testing done and it shows that I am suseptable to mold.

  5. lilbird

    lilbird New Member

  6. lilbird

    lilbird New Member

    you guys go?
  7. CAAnnieB

    CAAnnieB New Member

    Hi Cathy,

    I'm having a MAJOR fatigue attack right now! This is due to being on my new protocol. I started with many supplements including NAC for killing Chlamydia Pneumonia in January...Now I know what it feels like to have CFS! It stinks! Sometimes, I can barely keep my eyes open. It happens to me at least several times each day.

    Last week I started adding INH, an antibiotic. This gave me worse fatigue & other unpleasant side effects! Ugh! Gotta feel worse to eventually feel better! I AM feeling an improvement in my overall pain levels! Yippee! Hope it continues.

    Dr.Powell does not treat Lyme. Not that he & his P.A. don't believe that Lyme is a problem...They have just decided to go after the Chlamydia Pneumonia as they have a 90% success rate when treating for it. I DID bring it up at one of my visits. They would write the order for Igenex testing. I'm not doing it right now because I'm already spending oodles on supplements, Rx's, etc.(Lyme test is pretty expensive, isn't it?) What's interesting is that on a CPn site I visit; many are treating their Lyme with the same antibiotics as my protocol. I'm not sure, but it sounds like some antibiotic protocols cover Mycoplasmas, CPn & Lyme? I'm still learning about all this!

    Why did you stop going to the FFC?

    Good that you talked to other Gordon patients...I hope the reusing needles report was just a rumor. I can't imagine any Dr's office reusing needles! It just isn't done. WAY too risky & there would be no reason for it. Anyway, I hope you are happy there & receive outstanding care. What types of treatments are you doing so far?

    Take care & keep us posted on your progress.


    [This Message was Edited on 02/07/2006]
  8. CAAnnieB

    CAAnnieB New Member

    Bumpity Bump!
  9. lilbird

    lilbird New Member

    I'm glad that you are seeing a good Dr. To bad that we have to feel so rotten while treating.

    Yes the Lyme test was expensive. $650.00 to test for Lyme as well as all the co-infections. you don't have to test for all the co-infections all at once, you can just do the lyme. That way it would be less out of pocket all at once.

    I stopped going to the FFC because my Dr. there would not test for lyme through Igenex. That kind of suprised me sense all the other FFC's use Igenex. I also talked to him about testing for c0-infections to lyme and he acted like he didn't know what I was talking about. So many Dr. are getting scared to treat lyme at all and I got the feeling that was part of it with the L.A. FFC.

    I felt I had gone as far as I could with the FFC without treating Lyme, so I went to see Wayne.


    Have you ever had a positive Lyme test?
  10. CAAnnieB

    CAAnnieB New Member

    Sorry the FFC Dr. was disappointing. You'd think they'd be up on all the Lyme stuff.

    No, I had a negative Lyme test years ago...Of course, it was just your standard test...not Igenex.

    Lyme is always in the back of my mind because I grew up living outdoors! All us neighborhood kids spent our vacations & free time playing in the woods & fields of Western N.Y. We didn't have a clue about ticks. I never even heard about them until I moved to CA as an adult! I definetely could have been exposed to Ticks without even knowing.

    One step at a time for me! If I can just be able to take my antibiotic without major side effects from die-off, I'd be happy.

    Best wishes,
  11. pumpkinpatch

    pumpkinpatch New Member

    I guess I was one of the fortunate patients at the FFC because Dr. Labair suspected lymes right away. She wanted me tested for lymes at Igenex. That was my first appointment.

    I can't believe your FFc doctor didn't follow through with this Cathy and didn't know about co-infections. You were smart to move forward and look for a LLMD.

    One of the main reasons I went to the Canadian LLMD was because the biaxin I was on through the FFC was way too powerful. I just couldn't eat and so lathargic. At my last FFC phone appointment she said to cut out the biaxin which I did. Have to 1/2 function with a family.

    Anyway I just feel more at ease dealing with a specialist who has been dealing with lymes patients for 30 years. He will follow my progress closely and will probably switch up my combinations a few times.

    I've also started taking BIO K a probotic that you drink. My stomach feels so much better. I think the yeast and the bugs were taking over.

    Cathy we're going to see our way through this maze.

  12. lilbird

    lilbird New Member

    Yes we will get our lifes back. May take some time but it will happen.

    The Dr. I see does some of Richie Shoemakers protocal. Especially using Cholestyramine to get the toxins out of the body. Cholestyramine is a colestoral lowering drug. biotoxins bind to fat cells, the cholestyramine binds to the fat cells and takes them out of the body. If you haven't read Mold Warriors get a copy its worth reading.

    Say in touch,

  13. pumpkinpatch

    pumpkinpatch New Member

    Last year I took the Shoemaker visual test online and failed. Couldn't see any of the lines. One big blurr. Anyway I tried 2 cans of the Cholestyramine and didn't notice a difference.

    I really think the abx are going to be the kicker and over time they will lessen the bacteria load. Just have to find the right combination and work my way up. I started the amozillian and tolerating it so far. Also will be starting tinidazole next week. Coming from a compound pharmacy in B.C. That is to deal with the cyst form. Not as strong as the flagl and really target them.

    Are you on any abx at this time Cathy? I wonder what the LLMD is going to recommend for you.
  14. lilbird

    lilbird New Member

    right now. Thats the other thing about the FFC they wouldn't put me on ABX. So I hope my new dr. does.
  15. pumpkinpatch

    pumpkinpatch New Member

    I wonder why one FFC doctor prescribes abx's and another FFC only recommends herbs. I thought they had weekly phone sessions to discuss all these issues. You definitely need something stronger.

    Do you have to travel to see the LLMD? My son drove me last weekend. 9 hr. drive through the Rockies.

    Such a hassle trying to get answers. But you are on the right track.

  16. cbs1234

    cbs1234 New Member

    I wouldn't be telling anyone else that they need to take antibiotics when their doctor says not to. Antibiotics can be nasty, nasty, nasty in terms of side effects. You should not take them lightly and only when recommended by a doc. in addition, you should read the manufacturers insert diligently before ingesting any antibiotic to know what to look out for. Simply saying you are having die off is risky if you are feeling a lot worse while on an antibiotic. Be very careful--I know from personal experience.
  17. hopeful4

    hopeful4 New Member

    I'm glad that you got your diagnosis and are going to an LLMD that really knows how to treat you.

    I'm going to Seattle FFC and so far pleased with the lyme treatment. I do have in the back of my mind the possibility that I may choose to switch to an LLMD at some point.

    I find it puzzling that each of the FFCs seems to work the lyme testing and treatment a bit differently. I think that lyme disease is a newer addition to their background in CFIDS/FM, and, each doctor has an individual take, to some degree, on what to do with handling lyme.

    As I get further into reading about and talking with people who have lyme disease, I'm seeing just how political and hot-button issue it is within the medical community. Many doctors are being persecuted for treating lyme patients. So I'm guessing that different states may have different political climates around lyme and it's treatment.

    Right now I'm on Azithromycin 500 mg once per day, Cumanda, soon to start burbur, then samento. Also on nystatin, probiotics, artemisinin, and plenty of supplements.

    I'm reading Stephen Buhner's book Healing Lyme and finding it fascinating. He does a great job of explaining the spirochete, how it changes in the body, and the amazing interactions it has in out bodies, and of course, the herbs used to treat it.

    I haven't had a mack-truck herx with this so far, but more like an increase in symptoms, but tolerable. In the summer I had a huge, miserable herx from diflucan for candida, and in retrospect (it was pre-lyme diagnosis) I believe it was hitting the lyme as well, which could have reduced the BB load, therefore not such a bad herx right now. Anyways, that's a theory.

    Wishing everyone well in their treatment and progress. Hold on to your vision of living well!


  18. dancingstar

    dancingstar New Member

    I am pretty sure that I don't have Lyme as I grew up in So. Cal. and didn't spend a lot of time in the woods...a little maybe, but I doubt it anyway. Whatever...not my point at all.

    At my next appointment LA FFC, I'm going to ask for a clarification on this subject since everyone here, including me, is now wondering what the story is, and I don't feel like we have the whole picture. k? Not till April, though, I'm afraid :-(.
  19. dancingstar

    dancingstar New Member

    There are a lot of different opinions on the board about whether or not FFC treats Lyme and why they do or do not treat it. I doubt that I have it, but at this point I'm curious.
  20. hopeful4

    hopeful4 New Member

    Exactly my sentiments. You said it so well. After struggling with years of illness and no answers, the FFC has uncovered the causes for me, not only by testing so comprehensively, but by understanding how to interpret and act upon the testing plus history and symptom picture.

    If I discover that my lyme treatment is not progressing to my satisfaction, I will seek out an LLMD. I also believe that my doctor at FFC would work together with an LLMD to benefit my health.

    I don't know what your symptoms are or your history. But, please be aware that it is ONE of the TOP MYTHS ABOUT LYME DISEASE, that you must be bit by a tick a'walkin in the woods. I know this is not the point you were trying to make, but for the benefit of your health, please be aware of this.

    Lyme disease can be transmitted by other critters, such as mosquitos, mites, and fleas. The spirochete that causes Lyme disease has been found in breast milk and semen. It has been transmitted from mother to child gestationally as well as through breast milk. It can also be transmitted sexually.

    I'm the last person to be a sensationalist. From what I'm reading, and others will back me up, lyme is a much bigger health problem than what is reported. OK...I'm done with the rant!

    Because I've suffered with illness so long, and so misdiagnosed, and so want to get well and LIVE LIFE, just passing this info along to you and others.

    Best wishes and good health to all,