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Starting Raltegravir

Discussion in 'XMRV Testing, Treatment and Transmission' started by jimbob, May 27, 2010.

  1. Charles555nc

    Charles555nc Senior Member

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    I would really like to try the Raltegravir...can someone please email either the list of "xrmv literate" doctors or whoever your seeing who would be willing to prescribe antiretrovirals for lyme/cfs. Charlesbeutt@gmail.com. I can keep the list to myself if you'd prefer.

    I have had lyme/cfs for about 5 years (Im 30) but my symptoms are more advanced because I was put on steriodal anti-inflammatories (immune suppressants). Truly a tragedy, I dont think I really even have two years to wait for a treatment. I have tried hundreds of treatments including a combo of viracept, tenovir, and AZT. I didnt try raltegravir because I couldnt purchase it. Azt made me worse, anyone who reads the side profile knows that it makes you more susceptible to bacteria infections (nasty even if they are secondary to xrmv). I'd also love to see how a protease inhibitor would work in this disease, like Darunavir or Atazanavir...but thats probably for much later. I have a small list of things that worked for me but the three most noticeable were...

    1. I used to having insane sweats, sometimes at night or during the days. Felt like I was melting and my mind along with it. Two weeks of Famvir and my sweats are 95% better for the last two years. Sadly did not effect my other symptoms. Got the idea from a lymenet poster.

    2. Edta, either suppository or intravenously helps break up biofilm (orally only 5 percent is absorbed). Biofilms develop whenever "bad" bacteria, fungus or group of parasites hang out too long inside the body-like in immune suppressed individuals. Viruses can exist inside bacterial biofilms also. I took tindimax (less neuro toxic than flagyl) after several suppositories of EDTA (over about 6 hrs) and noticed a 15-20% improvement in mental clarity+overall well being for the last 3 weeks. So I'm about 30% of my former self. My thoughts for my experiment were that the EDTA eats away the metallic or calcium coating on the biofilm then the tindimax blows up the cyst form of lyme which is also known to exist inside biofilm communities. Take a day off every time you use EDTA and do NOT take zinc when you use EDTA, is what my doctor suggests. Repeated use of edta (every other day) may help stop what I think is biofilm related autoimmune responses I have gotten from certain vitamins/drugs.

    3. Sugar, diet sodas, high stress, poor sleep, iron from high meat intake, especially red meat or from supplements, copper, and vitamin D can make your symptoms 10x worse. Vitamin D supplements make my symptoms 4x bad and practically locks my jaw for a week or two afterward, for whatever reason. Melatonin (2-3mg) can really help you get some decent sleep (skip a day in between uses) and gives a general immune boost. Dont take too much at once, I get an autoimmune type reaction.

    So
    1. You get sick (I was bit by a tick) probably by a combo of lyme disease, herpes viruses, and xrmv
    2 Your immune system is suppressed rapidly
    3 Biofilm develops, different compositions in everyone- Lyme or otherwise, about two to three months in
    4 Your finally treated with antibiotics (one or two months after the initial infection)
    5 You feel better on a certain antibiotic combo but the biofilm regrows antibiotic resistant (since the shell is not disrupted) and the xrmv is not addressed
    6 Slow growing xrmv continues to spread, which with the biofilm- keeps you immune suppressed. Even if the lyme/herpes infections are knocked down.
    7 Continued antibiotics after a certain point just harm good bacteria in your gut but not the biofilm bacteria
    8 You go off antibiotics and lead a low functioning life
    9 You come to this forum and others looking for help :D


    Edit: Selenium, NAC, and glutathione are supposed to be good natural antivirals, and have been used for support against HIV. I get crazy reactions from these vitamins...generally feeling slightly better then slightly worse but not really bad worse- immune reconstitution syndrome or hexheimer could also explain these reactions.
  2. shannah

    shannah Senior Member

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    Don't want to hijack this thread - just want to welcome you to the forum Tia.

    I have two children - both born ill - and no matter whether you're born ill or 'acquire' it along the way, it's one heck of journey isn't it???

    You are not alone!

    Don't think I've heard before that the WPI is working on a cancer medication that may be available in the next couple of years so thanks for that tidbit. If there is no info on it already here, perhaps you could post the details of what you've heard in a new thread.

    Blessings

  3. Daffodil

    Daffodil Senior Member

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    i wonder if the cancer drug being referred to is Velcade. they talked about it a few times in the media last year, with respect to CFS.
  4. Cloud

    Cloud Guest

    Welcome Tia. Being struck ill after many years healthy, or being born sick, we are all in this together. Sorry you have to be here, but glad that you are.
  5. redo

    redo Senior Member

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    Great post Charles! Welcome to the forums. I think you're spot on with your thoughts about biofilm (and lyme), xmrv and the effect of the steroids. Hope RAL works out for you if you give it a go.
  6. Charles555nc

    Charles555nc Senior Member

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    So the process to get Raltegravir is to get an xrmv test from http://www.vipdx.com/ then take that test to local hiv doctor and hope he treats? I dont have alot of money so Im trying to find the cheapest/easiest way possible to try this. If there is a doctor who doesnt require the test would help save money...any tips? charlesbeutt@gmail.com
  7. Daffodil

    Daffodil Senior Member

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    charles.....remember u can get RAL free from Merck if you are eligible....u just need a cooperative doctor.

    good luck
  8. katieann

    katieann

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    colorado, US
    Well, my infectious disease doctor isn't ready to prescribe for me, and I get that. She wants more information from a larger population of patients trying the meds. I am ok with this as well. But, if by the new year, she hasn't come around, then I will look elsewhere.

    What will really help is the FAD/NIH paper: and rumor has it, it's in the press:

    http://www.cfscentral.com/2010/08/fdanih-paper-in-press.html
  9. cfs since 1998

    cfs since 1998 *****

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    That is helpful information. Thanks.
  10. redo

    redo Senior Member

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    How's it going with you now jimbob? It's a while since you've stopped it. Are you now worse/better/the same as before you begun?
  11. redo

    redo Senior Member

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    Are you here jimbob?
  12. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    I gave it one more shot redo, for 8 days, and it did'nt do much one way or the other. been off nearly 3 months now. Did lose 22 lbs rather quickly somewhere along the line, which scared me bigtime. That is why I kind of disappeared from the forums and chat rms for a while, which I apologize for. Had a lot of scary tests done and found out I all of a sudden have arthritis and diverticulitis. Weight starting to come back some. Don't know if any of this had to do with taking Ral alone or not. Still don't know if I'm completly out of the woods, but I certainly feel better than I did when I thought I might not be around much longer! Just praying for the day the experimenting can stop and we have a safe and effective treatment. Thanks for checking on me, and you pass this along for me if you like, Jim
  13. RivkaRivka

    RivkaRivka Senior Member

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    jim

    good to hear from you. i'm so sorry things got hard there! glad you are coming back!!!!

    rivka
  14. Tia

    Tia Senior Member

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    Damn, was kind of hoping for raltegravir to work, but the hope is long from out: Keep in mind they 're working on a treatment for us, tailormade. :) It's what keeps me up, anyway.
    And Jimbob: Thank GOD you're better at least. 22 pounds lost doesn't sound good, so if you can, try to eat alot now so you get the weight back. Maybe it was too much of a strain on the organs or something?

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