mycoplamsa Valcyte?

Discussion in 'Fibromyalgia Main Forum' started by winsomme, Feb 11, 2007.

  1. winsomme

    winsomme New Member

    i was just reading some of the info over at the Dr Nicolson site, and i at one point is his treatment section he mentions the use of antivirals like Ganciclovir.

    this is what Valcyte converts into once in the body.

    and one of the reasons for this is that mycoplasmas have many properties of viruses.

    so, is it possible that Valcyte could be helping because it also helps fight off a chronic mycoplasma infection.

    he also mentions HHV-6 and others, so i guess there is no way to know for sure.

    here's his site:

    http://www.immed.org/index.htm

    and here is the quote for the "treatment considerations" section:

    "...Some add the antiviral Famvir (500 mg 3X/day) or other antivirals (Ganciclovir, 1000 mg 2X/day) for the first 2 weeks (see next section). Mycoplasmas may have some characteristics of viruses, so this can be useful, and viral infections are also important in these illnesses. Often patients have multiple mycoplasmal infections along with other bacterial and viral co-infections.

    thank
    bill
    [This Message was Edited on 02/11/2007]
  2. Mikie

    Mikie Moderator

    At least one strain of the mycoplasma includes a virus and that may be why he suggests AV's. Many of us also suffer from chronic viral infections. If we do and we only treat bacterial infections, we cannot heal.

    It was a mycoplasma infections which triggered my illnesses full blown. I also have chronic viral infection(s). I've taken Doxycycline and Famvir long term and now pulse transfer factors following a three-month round of them. I also use an electronic zapper.

    Because mycoplasmas can reactivate, I always have Doxycycline on hand.

    Dr. Nicolson's website is a good place for info on mycoplasmas. He is also a very nice man who has answered my questions on several occasions.

    Love, Mikie
  3. ravenpaige

    ravenpaige New Member

    Bill,

    I'm no expert in this, that's for sure, but what I understand is that mycoplasma is structurally similar to chlamydia...both tend to cause upper respiratory distress, walking pneumonia, etc. While they are larger than viruses, they are smaller than bacteria.

    Apparently, they can typically be killed by certain kinds of antibiotics, but I see no mention of them being killed by antivirals. Since I don't really know how antivirals work, I can't really say for sure if they would be affected by antivirals or not, but my guess is not, because bacteria are not killed by antivirals, and mycoplasma shares most characteristics with bacteria.

    Anyway, I think the mycoplasma idea is a good guess, but probably not, unless there is an unknown mycoplasma (or hybrid) that is affected by antivirals. I do know that these organisms were, at one time, strongly considered as a possible agent for CFS. But they are pretty easily tested for, and I believe no strong connection has been found.

    That is not to say that a person with CFS might not have an ongoing or recurring mycoplasma infection. In fact, since the immune system works so strangely in CFS, this is probably quite possible.
  4. Mikie

    Mikie Moderator

    At least one of them does cause pneumonia. One of them, according to experts, does not occur in nature but was bioengineered by combining a virus with the bacteria to make it much more virulent. Again, Dr. Nicolson's website is a treasure trove of info on mycoplasmas.

    Studies have found high levels of chronic mycoplasma infections in people with ME/CFS and FMS. High levels have also been found in patients with RA, ALS, MS, and Parkinson's Disease.

    Once the infection has gone chronic, it isn't easy to test for. It requires a PCR DNA test done within 24 hrs. of the blood's being drawn. The blood must be very carefully handled; the half-life of mycoplasmas is only 24 hrs. There are only a couple of places which do these tests. There is a fairly high incidence of false neg. results.

    Mycoplasmas are cell-wall-deficient bacteria, like Lyme, and, also like Lyme, they can change form in the body. When mycoplasma infections are under control, they likely have deposited cysts deep in the body's tissues. These cysts can reactivate the infection if one gets run down or injured.

    Hope this helps. Again, I suggest reading the articles and protocol for treatment at Dr. Nicolson's website, Immed.

    Love, Mikie

  5. foxglove9922

    foxglove9922 New Member

    Hi Bill,

    First of all good post. I find this all very interesting.

    I hope you don't mind if I get off topic just a bit with Mikie as we traveled similiar roads with the AB and AV,,,maybe it would be contributory to this thread.

    Mikie - I was on Doxy for 2 years as well as Famvir for 6 months, then I pulsed the Doxy with no herx. Labs came back mycoplasma gone. I then pulsed the Famvir and had only a mild herx. Here's where it gets strange. I've had recurrent shingles (17 times in 5.5 years of CFS) and was given Valtrex that sent me into a herx like I've never experienced before. I'm back on Valtrex, just worked up to 1000 mg from 500 mg and herxed again for 4 days to the max.

    My question to you is: How are you doing now that you've been through the AB/AV/Heparin/TF? At what percentage are you functioning? Will you be adding anythig else into your protocol?

    Again, bill thank you for the post. I also have read Garth Nicholson's site and much of it makes sense but in order to proceed correctly as Mikie mentioned proper lab testing is vital to know exactly your bacterial and viral load. Bill, are you working with a good CFS physician?

    best wishes,

    Foxglove
  6. Mikie

    Mikie Moderator

    Is that, like everything else, we all react differently to treatments. I've taken Famvir and Acyclovir with about the same results except that the Acyclovir upsets my stomach. Famvir is just too expensive with our wonderful new Part D Medicare, but I digress...

    I am so sorry to hear of the harsh Herxing. I Herx hard but fast so I don't mind it so much. As I've gotten better, the Herxing isn't so harsh. Still, though, the penacillin ABX I had to take for that root canal and sinus infection really caused big Herxing. I feel so much better now.

    Last year, it was just one thing after another and I actually regressed, getting weak and exhausted. Now that my gallbladder surgery seems fully healed and the other infections appear to be gone, I am starting to feel so much better, like I was before all this started. My progress has been very slow over the last six years but I have steadily progressed, except for this last year. I feel better every day but still tire easily if I overdo it. At this level, I can live a fulfilling life if I am careful. What I am aiming for is to live an active life with good energy and infections under control. I believe the chances are excellent that I will eventually reach 80 percent of where I was before I got so sick.

    I hope and pray for everyone's healing and that a cure is found soon.

    Love, Mikie
  7. Mikie

    Mikie Moderator

    I'm sorry, I forgot to answer your question.

    Some days, I function at about 75 percent but some days, I don't function very well at all. Considering how bad a year I had in 2006, though, I don't believe this is typical. I am hoping to get to 80 percent of where I was before I got so sick and be able to sustain that. I think this is reasonable but I doubt it will happen fast. Progress has really been slow.

    At this point, I am not considering any particular treatment as I'm making progress with what I've been doing. Still, I try to keep abreast of what is being done for our illnesses and will consider anything if it's not too risky. I really need some time, now that all the infection from the gallbladder, tooth, and sinuses appears to be gone, to evaluate where I am.

    A lot of success at this point seems to be energy/activity management. It becomes a way of life but I do try to push the envelope to see where I am. This last year, I was just in what my shrink calls "survival mode." Most of us feel guilty when we have to scale down but he made it clear that there is nothing wrong with that and that sometimes it's the wisest thing to do. Tada! No more guilt. Who needs that kind of stress anyway?

    Love, Mikie
  8. deliarose

    deliarose New Member

    the only thing I can think of is that you had HHV6 which does not respond to Valtrex.

    I dont' know what your bloodwork says.. but my doc says that there are no good tests for HHV6.. so even if u tested negative for it.. it doesn't necessarily mean u don't have it.

    Or at least that's his position.

    One other thing.. I see some physicians treat empirically in the absence of test results.

    Someone on another list said Prof.de Meirleir treated one of his patients with abx for mycoplasma. This patient repeatedly tested negative for this pathogen.. and then suddenly tested positive.

    so these stealth pathogens can be hard to nail.

    Having said that, I am puzzled by your history. Although, I would agree that in my early days I was so sick I couldn't see teh benefit of certain treatments that I now see a direct benefit from.. namely glutathione... So I agree that you can be so sick you can't see the wood from the trees.

    One last thing.. since you are all-natural, you might be interested in Rich Van Konyenburg's theory/protocol. He seems to be saynig that if you can get teh body's glutathione problem fixed, the body will take care of pathogens on its own.

    There's a short version and a long version of his protocol. I am trying the first: add methyl donors to your supplement regime and then add in glutathione.

    Best]
    Delia

    Delia

  9. Mikie

    Mikie Moderator

    I believe everything your doc is saying about HHV-6. It wasn't until I tried the Transfer Factor 200 that I Herxed differently and started to improve more. This TF targets both strains of HHV-6. I have mentioned that the first two Herxes while on the TF 200, I felt as though I were purging ashes from my body. This was after 1 1/2 years on Famvir.

    If one tests neg. for mycoplasmas with the PCR DNA, they will often give ABX and retest. Any time one uses any treatment which can cause dieoff of pathogens, they become more active.

    All my treatments were done empirically because my HMO would not cover the costs of the tests. It's just easier to try something and see what happens, as long as it isn't too risky. Of course, one has to have a doc who is willing.

    Love, Mikie