Difficulty tolerating Lyme treatments - anyone else?

Discussion in 'Lyme Disease Archives' started by pepper, Oct 27, 2008.

  1. pepper

    pepper New Member

    I have been given a clinical diagnosis of Lyme Disease but am worried about having the Western Blot, etc. done if I am not going to be able to tolerate the treatments. When I tried low dose ABX before, the doctor stopped after a couple of weeks because my liver enzymes were so high. They have been on the high side ever since. Does that mean I can't do long term ABX?

    My CFS doc is a natural MD and tried treating me a number of times for 'stealth infections' using colloidal silver and herbs similar to the Cowden protocol. He tried different combinations and differ strengths but I end up with the same result - an unbearable itch from head to toe, including my eyeballs and the insides of my ears. It continued for 2 weeks after stopping treatment.

    Does anyone else have these problems? And is there any way to get around the problems?

    I would appreciate any ideas before I continue on with this research and my search for a doctor to treat me in Canada. Not easy.

    Thanks for any ideas.
    (((HUGS))) Pepper
  2. Renae610

    Renae610 New Member

    If you have had Lymes for months/years, Western Blot may not prove you have Lymes because if you test too early, your body may not have built up enough antibodies to it yet and if you test too late, the Lymes has burrowed so deeply into your cells that your body no longer recognizes it is there so it stops producting antibodies. So I recommend using IgeneX Lab in CA, the Lyme IFA (Immunofluorescence Assay), B Burgdorferi G/M/A. IGeneX also tests coinfections.

    It is common with Lymes to have nutritional deficiencies. Use SpectraCell lab.

    Also do a CD-57 test. This is very important! (through Lab Corp)

    Look up RedLabs USA, Inc. Order Chronic Infection Screen Panel, Immunobilan, and Complete CFS + Nitric Oxide Synthase.

    If you have Lymes, your body does not detoxify as well as it should. Do you use Burbur (Nutramedix herb in the Cowden Protocal) to help you detoxify and minimize herx reactions? Ion cleansing helps too.

    The itching sounds like an allergic reaction to one of the products you are taking, and you may have to use an alternative product.

    At the time my daughter was diagnosed in 2007, she was unable to tolerate most medications and supplements (very hypersensitive), so she could not do the protocal the doctor uses, and we had to search for another protocal. She is doing the Cowden protocal this year, while I have been researching Bio-photon (Light) therapy at an 880 frequency which kills both Lymes and coinfections and restores the body's hormone levels.

    If you choose to continue with antibiotic treatment, you should take a probiotic that can survive being on antibiotics so it can help keep a balance of good flora in your gut. The product my daughter uses is 4RHealth Flora Immune. I have heard that antibiotic treatment can cause the bacteria to go dormant in cyst form and become more resistant to treatment in the future and a likelihood of relapse.

    I hope this helps.
    Best wishes for your recovery,
  3. Bluebottle

    Bluebottle New Member

    Are you taking niacin/B3? It makes me itch like mad.
  4. pepper

    pepper New Member

    Yes, my CFS doc is really special. He has suspected LD in many of his CFS patients and has treated them successfully over the past few years. I am afraid I am more of a challenge for him.

    He has pretty well turned his back on the medical profession and does his own thing. He gets persecuted for it though by the powers that be as you can imagine. I love reporting some of the stupid things that I have been told by traditional doctors. The latest was by an Infectious Diseases "Specialist": "If you had Lyme disease, you would remember a tick bite". He also told me that I "don't fit in the Lyme box" so wouldn't test me - but he had me tested for AIDS and HepC and syphilis and a bunch of other things that are just beyond ridiculous considering my lifestyle. I saw him today and the tests were all negative. What a surprise!

    I have never heard of Barrowinnovations and Munch1958 but will check that out tonight. I did go to canlyme and learned of a LLMD a five hour drive from here. I have emailed one of his patients who lives in this city and hope to hear back from her. It would help so much to hear that he is wonderful!

    However, I want to stick with my CFS doc as long as he can come up with stuff to treat me. I don't know if my liver could tolerate long term ABX although I sure would like a few weeks on IV ABX. I had a week of them this summer including Flagyl and three others and I felt better than I have in years. After a week of feeling great, I crashed and have felt much worse. My CFS doc says that the drugs just made the bugs mad and they multiplied like crazy.

    Thanks so much for your input.

    I will check out Tansy's posts.
  5. pepper

    pepper New Member

    So much information! Yes, my CFS doc does use Igenex. Do I have to ask for each of these tests individually or are they done as part of the Lyme disease testing? I have copied these tests down to make sure he does them.

    Does Igenex not do the CD-57?

    Dumb question. What is SpectraCell lab? Do you send your blood away to them?

    When I tried my CFS doc's protocol a few years ago, Burbur from Nutramedix was part of it. The itch was unbearable. So bad that I couldn't sleep.

    In Sept. I tried a new kind of Colloidal Silver which is the basis for my CFS doc's Lyme protocol. He said that it was a much gentler silver than the ones I had tried before and I wouldn't itch. He was wrong! I took a Reactine when the itch started and it didn't help one bit. From that, I decided that it wasn't an allergy but perhaps I am wrong.

    I think when I was taking the Burbur, Cumanda and Quina that I was not taking the silver. But I will have to check that out with him when I see him in a month. I need to know what made me itch.

    I am most interested in alternative treatments because my liver is bad and I probably cannot tolerate long term ABX use. Bio-photon therapy is new to me. I am going to google that now. Along with a lot of the info you have given me here.

    Thanks so much.

  6. pepper

    pepper New Member

    (Nice username!) I don't take niacin because it makes me flush to a brilliant red!

    Thanks for the idea though.
  7. pepper

    pepper New Member

    I did find out that the LLMD who is a 5 hr drive from here is very good. I received an email from one of his patients who had been dx with MS for 12 yrs and is now doing great after one year on his treatment for Lyme. So I think I am going to call on Mon. and make an appt to see him.

    I emailed this lady back asking about lodging, etc. so I hope I hear back from her.

    He orders the Igenex testing so I guess I will have to have that done. After the many many thousands of dollars I have spent trying to get better from CFS, I guess this is worth it.

    I told my family doc that I have a clinical dx of Lyme Disease and he told me that I don't have Lyme Disease if I don't have blood work proving it. So I will need positive test results to get his cooperation. Grrr..

    Thanks for all your help, Kathy. Your posts on this site are very informative.

    LISALOO New Member

    I was on the protocol and was able to work up to 30 drops of cumanda in 15 days. Didn't herx, then added Samento, still no herx.

    My igenix only had two positives and some indeterminents, does this mean since I had to herx, change in symptoms that I don't have lyme and had a false pos.
  9. pepper

    pepper New Member

    I never got past two drops and the itch drove me insane.

    I have no idea what it means when you have no herxing whatever. That might be a question to post on this board. You could have a false positive on the testing but you must have symptoms consistent with Lyme, don't you?

  10. redsox10

    redsox10 New Member


    Do you take any liver support? A good milk thistle is recommended for liver support. If your liver enzymes are high I would look into Zhangs Hepa F no.2. My son had extremely high levels and this brought them down quickly. If he goes off it they go back up. It is wonderful.

    Hope this helps
  11. pepper

    pepper New Member

    I do not take liver support even though I know I should. I have never heard of Zhangs but will look into that. I have tried milk thistle in the past and, because my liver is so toxic, it causes me to crash badly. My doctor explained that the milk thistle causes my liver to release toxins and there are so many toxins being released that I feel awful.

    By feeling awful I don't just mean I don't feel well. I mean that after ONE milk thistle I couldn't walk. I had to spend two days flat in bed and ask for support to get to the bathroom. I am terrified of this happening again.

    How does your son feel after taking the Zhangs? I really need to do something before I start treatment so I would like to find a good liver support that still lets me lead my life.

  12. bullbustin

    bullbustin New Member

    Hi Petter,

    Try looking at www.canlyme.com, www.ilads.org, www.lymepa.org and www.lymediseaseassociation.org.
    [This Message was Edited on 11/25/2008]