International ME/CFS and FM Awareness Day is May 12: The World Will Know
Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and tug at the sleeve of the rest of the world.
Discuss the article on the Forums.

Antiretroviral Trial

Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, May 29, 2010.

  1. Charles555nc

    Charles555nc Senior Member

    Messages:
    478
    Likes:
    85
    I have a consistent pain under my right rib cage...I'm also passing out at mild exertion...I guess my question is, what tests should I ask my doctor to test me to rule out cancer? Its a real fear for me.
     
  2. jimbob

    jimbob ME/CFS84-XMRV+

    Messages:
    321
    Likes:
    9
    myrtle beach, s.c.
    Strangely enough, I also have consistent pain under my right rib cage. I've had xrays, abdominal ct's, pelvic ct's and an ultrasound. Only thing found is minor sludge in my gallbladder. I know the fear of which you speak, believe me, but hopefully my results take the edge off for you.
     
  3. Charles555nc

    Charles555nc Senior Member

    Messages:
    478
    Likes:
    85
    I suspected an infection in the gallbladder, I take malic acid and edta suppositories to lessen the pain. Anyone else feel like, when they go to sleep, like they die and are reawakened in the morning? So many neurological and cognitive issues...
     
  4. undcvr

    undcvr Senior Member

    Messages:
    818
    Likes:
    166
    NYC
    Charles555nc did u start taking enzymes for your hypercoagulation ? See to that soon, it will help in a a general way with your other issues slowly, but see to that soon.
     
  5. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    It might be good to see a cradiologist, but aside from that, have you considered taking propranolol? It acts, if I'm not mistaken, as a beta blocker. It is supposed, as far as I know, to slow the heart rate, among other things it does. I took it for a few times when I had a driving tests - because in the first two tests I was so stressed that my leg shaked on the clutch. And when I took it, it worked like a magic on the physical symptoms. It didn't make me less stressed, but I had no shakes anymore. And again, if I'm correct, it should also slow the heart rate. They give it, I think, to people with hypertension.
     
  6. undcvr

    undcvr Senior Member

    Messages:
    818
    Likes:
    166
    NYC
    Yes Propanolol is a beta blocker. Cardiac issues is also part of the theory that the viruses hide out in the heart muscle amongst other places, causing all the complications there. It is also the reason why excercise is so dangerous to us and why we get exhausted so quickly. Daff while you wait to see a cardio specialist you can take some Coq10 at high doses, that will help your heart too. Heart muscles use alot of Coq10 and it is still considered a semi-vitamin. The body can make some of it but not much.
    The other theory is that what ever is affecting us hides out in the CNS too, causing events that are already stressful to be even more stressful. Its really a lose-lose situation. It makes us unable to cope with stress.
     
  7. pinkytuscadaro

    pinkytuscadaro

    Messages:
    68
    Likes:
    4
    Seattle Washington
    Liver Ache

    I have had the same pain under my right rib cage. It feels as if my liver is aching; I have described it like a headache in my liver. Do either of you have chemical sensitivities? I think it is our liver.
    I had a test done years ago on my liver detoxification system and it showed that I had an overactive phase 1 and my phase 2 was so slow that it was off the chart, literally. The doctor at the time who was a M.D. who primarily worked with alternative medicine, told me that all he could tell me was to take a lot of antioxidants.
    Pinky
     
  8. Daffodil

    Daffodil Senior Member

    Messages:
    3,190
    Likes:
    1,308
    hi all. i went to see my ID doctor today. he says that if i have not improved in this long- 10 to 11 months - on the meds, he would be surprised if i made any drastic improvements later on.

    i guess stopping active viral replication means very little with this disease.

    he said infected cells do not necessarily undergo apoptosis on their own.

    so it looks like the fight is just beginning for those of us who were untreated for a long time...no end to this suffering yet.
     
  9. Daffodil

    Daffodil Senior Member

    Messages:
    3,190
    Likes:
    1,308
  10. Daffodil

    Daffodil Senior Member

    Messages:
    3,190
    Likes:
    1,308
    thanks, moon.

    Question for dr. mikovits: Is the inflammation from XMRV being caused by viral reservoirs? If so, how can it be managed? Will the reservoirs decay over time?



    A: That is the hypothesis and what is seen in animal models of this family of viruses. We don’t know what the reservoirs are..but it is possible that some are short lived..Long lived reservoirs would not decay over time rather could harbor virus for the life of the infected host as in all other human retrovirus infections (HTLV, HIV)
     
  11. undcvr

    undcvr Senior Member

    Messages:
    818
    Likes:
    166
    NYC
    Daff I am sorry to hear that the ARV trial did not go so well. But the last few posts that you put up, you were going through so much, it seemed better that you just came off it at that point. Just keep your daily regimen of nutrient rich foods high and it will help some. Not a cure but will definately help. I think that I am about 6.5, and I got to this point all on my own just with supplements, eg, eggs, garlic, brewer's yeast, Bifidum probiotics, etc. To me all these together, at the same time has definitely done something.
     
  12. Charles555nc

    Charles555nc Senior Member

    Messages:
    478
    Likes:
    85
    What do you all think of DCA and GcMAF? I am thinking about ordering some of each if I have enough money.
     
  13. mojoey

    mojoey Senior Member

    Messages:
    1,098
    Likes:
    62
    I haven't thought about DCA and gcmaf in combination but that sounds intriguing. DCA to render apoptosis in infected cells plus gcmaf to gobble up infected cells and active virus. I haven't heard anything about DCA for CFS though. Have you heard of any other patients trying this and to what effect?
     
  14. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    undcvr I started 4.5 mg low dose naltrexone LDN just because was amount recommended years ago by Bihari.

    Charles A dr recently thought I had cancer and did CA-125 and CEA called tumor markers on the test. and regular white red blood count. said why not get a colonoscopy. (mine showed I have an infection, haven't found it).

    Daffodil, are you saying below ribcage or heart level under right side? I think i get inflammation or something that causes soreness with the rapid heart rate. have a script to fill for propranolol. has anyone been taking it? I agree building up with good diet, any immune system boosters. Everything I tried in the past and didn't work as far as PEM, I now think maybe would have helped in not getting to such a bad state. Someone said Cheney site says broccoli twice a day. I think I do better on the days I can make soup veggie broth.
     
  15. Daffodil

    Daffodil Senior Member

    Messages:
    3,190
    Likes:
    1,308
    thanks all. i am still on the ARV's. i wake up very inflammaed and remain so for throughout the day. it really hasnt done much for me at all. i am kind of surprised because there should be SOME reservoir decay, unless the entire XMRV population exists in post-mitotic, long-lived cells? how awful.

    i just hope that whatever intravenous treatment we will need, it won't be more than a 1-time deal cuz i will not be able to afford it more than once (if that!). and that's if i make it until they figure out what to do.
     
  16. Daffodil

    Daffodil Senior Member

    Messages:
    3,190
    Likes:
    1,308
    thanks. doesnt lauricidiin have some antiretrovirals properties as well?
     
  17. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    hi sue, did you have the igenex test for lyme? If lyme makes harder to treat... My friend with lyme has a lot of brain symptoms, getting relief with iv antibiotics.
     
  18. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    Hi, I believe Lauricidin does have Antiviral properties...not sure about RV's, but their website has a lot of info about viruses, bacteria, dosing info, etc. I think there was an old thread on Lauricidin I'll try to dig up for you.

    P.S. Just found the thread....it is up under the Antivirals, Antibiotics and Immune Modulators section
     
  19. undcvr

    undcvr Senior Member

    Messages:
    818
    Likes:
    166
    NYC
    Monolaurin is supposed to the the part of coconut oil that is anti viral. You have to take about 2 tbl a day for over a few months.
     
  20. Daffodil

    Daffodil Senior Member

    Messages:
    3,190
    Likes:
    1,308
    thanks guys. yes i have been tested for lyme multiple times, including testing at igenex.

    i've sort of given up on the idea that i will be helped much with ARV's alone. at best, it might be keeping the disease from progressing at the same pace it was before. I don't even think the reservoirs will decay over time. I think they are long-lived (just a guess).

    i am in agony so this is very unfortunate. i will have to wait for whatever the WPI will do, such as IVIG or Rituxan or something...which I have no idea how I will afford. And the travel will be excrutiating.
     

See more popular forum discussions.

Share This Page