Need help with new CFIDS diagnosis and treatment plan

Discussion in 'Fibromyalgia Main Forum' started by brainfoggy, Jun 16, 2008.

  1. brainfoggy

    brainfoggy New Member

    I just found out from my FFC doc that I have other co-infections, mycoplasma and chlamydia pnemonia along with chronic EBV. The next test is for lyme. Here is what I currently take:

    Acicylovir 4 x day
    Diflucan off and on
    Transfer Factor
    Tons of Vitamins and mito fuels
    Whey, aminos
    Coag Clear
    T3 Compounded Thyroid
    Simplified Methylation Supps (folapro, b12, intrinsi b12)

    He is adding the following:
    Cipro 2x day
    Heparin shots 2x day
    Higher dose thyroid
    their own Anti-viral supplement

    Is cipro the best abx for these co-infections? Who has improved on this abx or others?
    Should I be on both anti-virals and abx together?

    I'm lucky enough to get treatment, but my doc seems to think I can be on all of these things simultaneously and not have problems. Any thoughts from those with experience are greatly appreciated.


  2. mshvan

    mshvan New Member

    Hi Brainfoggy,

    that seems like a Holtorf grocery llst to me.

    I don't know. I would suggest you do a search here on the board for different peoples' experiences with these various treatments.

    In no way would I want to alarm you...I went to Holtorf myself, and had very high hopes. But I would suggest, in retrospect to my own experience, that you make your regular GP or PCP aware of this treatment. Not to stop it, but so that you have someone available who knows what all you're taking. That's a lot. Even just the pharmaceuticals is a lot.

    They had me on Heparin (and pretty much everything else they have you on...though I'm only assuming you're going to Holtorf). I had a bad reaction to it. The Holtorf clinic people-at least when I was going there--have no after hours contacts or anything. And a few other people on this board seem to have had unpleasant reactions to things given at Holtorf, and very inconsistent ability to reach them when they needed to.

    The other thing I would strongly suggest....get a copy of your various tests. Learn how to basically read and understand the results. I took them at their word...and to be honest, a number of things they said were "way off" in my system were absolutely NOT when I later got copies of my tests. Thyroid, for example.

    I do think they help some people. I also think that.....look, so many of us run into nothing but obstacles in the 'normal' medical system. And find a place that understands, and seems to have some answers...and we're desperate. At least, I was. So, we just accept what they're saying.

    Again, I think they help some people. And I DO have something wrong with me. I DO have some various bloodwork and etc that is way off. (though mostly not things Holtorf group tested me for). But I did give up on that clinic with a pretty bad feeling about the experience.

    I'm not the only person here who had a 6 month or so experience with them in which we ended up seemingly more sick (not FROM their treatment, but not really helped at all either), and having spent a genuine fortune for their treatments, tests, and consults.

    Again, my biggest suggestion is that you have another doctor (an open minded one) that you trust and maybe have some history with....that can help you make the right decisions about the treatments they are giving you.

  3. cbs1234

    cbs1234 New Member

    Very, very powerful antibiotic with lots of horrific side effects. These side effects can make fibro and CFS look like a walk in the park. Tendon ruptures, permanent nerve damage, liver damage, vision damage, are just a few of the nasty side effects you could encounter after just one pill.

    Unless you are on your deathbed and no other antibiotic will work, stay away from cipro and its sister drugs in the fluoroquinolone category such as levaquin and avelox.

    Go to for more info on the side effects.
  4. harmony21

    harmony21 New Member

    hope all is as well as can be expected with all those supplements and drugs......

    Make sure they are all ok and working as they should if you know what i mean

    I admire one so proactive I for one have problems taking mine becasue I sleep so much

    angel hugs and blessings

  5. brainfoggy

    brainfoggy New Member

    Holtorf is so expensive that I really cannot afford any other docs, I'd love to go straight to a homeopathic/LLMD who can also treat CFS. I am sicker than ever but have also heard of others getting benefit from heperin. On paper, thyroid is still way low. I'm slowly doubling my dose. If cipro is such a nasty drug, how do you treat the bacterial infections? Do they eventually go away? Are they communicable? I know I caught EBV from ex could he have given me the other infections as well, or is this developed from a weakened immune system? I tried to see if there were any other abx and he said cipro was drug of choice.
    He also encouraged me NOT to participate in the Georgetown study as he said they had everything I need and I would get no benefit.Also, will not help me with disability unless I pay him. I'm really tired of ego driven money hungry docs. It's a sad sad thing our medical system.
  6. cbs1234

    cbs1234 New Member


    Cipro was THE drug of choice when the anthrax scare first hit in 2001. Folks exposed were given 60 days worth.

    Mysteriously and without explanation, the CDC changed the drug of choice in the midst of the scare to doxycycline.

    Thousands of postal workers took the cipro as directed by the government. Post cipro, over 1000 of these postal workers were "mysteriously" disabled. These postal workers claimed it was the cipro and filed a class action lawsuit (later dismissed), but the CDC said no way EVEN THOUGH THE MANUFACTURER STATES THAT IT CAN CAUSE ALL OF THE PROBLEMS THE POSTAL WORKERS WERE EXPERIENCING (the CDC had no explanation for the weird array of symptoms).

    Yes some people take the drug without a problem, but way too many others become disabled. Is it worth the risk? Take it from me--NO WAY!

    Take it at your own risk and remember you were adequately warned.