CFS If you could choose your treatment course

Discussion in 'Fibromyalgia Main Forum' started by foxglove9922, Nov 28, 2006.

  1. foxglove9922

    foxglove9922 New Member

    Hi Everyone,

    Been awhile since I've been on but would like to pose a question. I and my daughter have suffered with CFS for over 5 years.

    Recently I went through yet another bout of shingles (17 now in 5 years) and then bronchitis. I got a SEVERE herx reaction to both the antiviral and antibiotic which leads me to believe that I am suffering from both bacterial and viral overload.

    I have 2 very supportive CFS physicians who I must travel a great distance to see. Money is becoming a very tight but I do have a good Medicare Part D plan.

    I am also endocrinely involved,,,,,,low IGF-1 from the pituatary gland, flucuating thyroid and low adrenal output. My daughter and I both take Klononpin and Zanaflex at night for deep sleep, sensory overload, and RLS.

    I read alot about CFS and believe I really need to start to knock these critters out of my system. I was on Famvir for 6 months to keep the shingles at bay and then 2 years on doxy for a mycoplasma......my health really showed no marked improvement.

    I believe I need to rotate antivirals and antibiotics to cover all bases on what is going on and then possibly finish up with Transfer Factors.

    I'm thinking Valtrex and then Valcyte followed by varying antibiotics.

    I know Ken Larsson had good luck with varying antibiotics but can't locate his page for the variety of ABs needed.

    Any advise would be greatly appreciated.

    foxglove
  2. elliespad

    elliespad Member

    Can't help you with your Ken Larson quesiton. But, you asked If You Could Choose Your Treatment Course?

    If money were no object, of course.

    1. Dr. Nash Petrovic Protocol - Uses high dose Antioxidants and ImmuneModulators. Can find his website if you search for Petrovic CFIDS Health Center.

    There has also been some discussion on this board so can likely find it by doing a search.

    2. Dr. Patricia Kane - Uses IV Prospholipids and IV Glutathione, to detoxify and heal the cell membrane.

    If I could afford to, I would treat first with Petrovic and then Kane.
    [This Message was Edited on 11/28/2006]
  3. foxglove9922

    foxglove9922 New Member

    Thanks ever so kindly for all that responded.

    Bumping for more responses.

    Best wishes to all,

    Foxglove
  4. Slayadragon

    Slayadragon New Member

    After almost a month on an AV (Famvir), I'm of the strong opinion that a person should do everything possible to improve their overall health before starting.

    This especially means yeast. But it also may mean things such as bowel health, hormones, treatment of food allergies, proper nutrition, etc.

    Once a person's body is functioning as well as it can, it will be more able to tolerate the strong effects of the AV's.

    I did these things before I started. And despite the fact that a number of other people started AV's at the same time I did, I think the fact that i addressed other issues first is part of that.

    The fact that i added only the AV rather than the AV plus other stuff undoubtedly also contributed to my doing well.

    Even under the best of circumstances these are hard drugs to take. I also think that most CFS sufferers may be better off taking a small dose first and then working up.
  5. Slayadragon

    Slayadragon New Member

    Bacterial overload may possibly be more successfully treated than viruses, by the way. This is just my own experience though.

    See my recent posts on Famvir and Jolielulu's on Valtrex for some info on AV's.
  6. Slayadragon

    Slayadragon New Member

    A brief note....those AVs are quite potent! Please read my posts on Famvir. It seems to be the mildest of the major AV's, and I've still had a difficult time. I'm getting better though, I think.

    It may be helpful for you to consider other measures (especially for yeast control) before moving on to the AVs. The less stress on your body when you move to them the better, I think.

    Antibiotics may be easier to try at first. They're more tested. But then you have to be especially careful with yeast.

    If you search the content of my posts, you'll find lots of info on the standard basic yeast protocol.

    I didn't realize I had that much yeast when I started getting rid of it (it tends to creep back insidiously, especially if you don't address it _continually_), but it turned out I did. I think that's true for a lot of people.

    Taking five weeks to fix that problem is by far the best thing I've done with regards to taking the AV, I think.
  7. cherylsue

    cherylsue Member

    Hi,

    Sorry you and your daughter are still having a tough time. Did you notice (check ProHealth announcements) that the Ampligen trial is still open? It sounds like you two would surely qualify. Do you still see Dr. Enlander?

    Having enjoyed an 11 month remission, I relapsed again in July. So I'm back on this board. Very discouraging, but I am slowly improving. Spent 3 months bedridden. Just when you think you are getting better, BAM!

    My CFS doc in Chicago says Ampligen sounds very promising and is statistically significant even in the most severe cases. Patients have made an 100% recovery. Hopefully, the FDA will approve it withing 3-5 years.

    Check it out.

    Hugs,
    CherylSue