HIV Medication for Chronic Fatigue

Discussion in 'Fibromyalgia Main Forum' started by scarflady, Sep 3, 2006.

  1. scarflady

    scarflady New Member

    Has anyone tried the prescription medication for HIV to help Immune systems? I saw my doctor recently and is treating a patient with the same meds being used for HIV patients. She said the results for her patients Chronic Fatigue were remarkable. The prescription has to be compounded and I plan to try it soon. I could not find any previous posts relating to this possibility and am very interested in finding out more.....

    Thanking you in advance for your responce.

  2. butterfly83

    butterfly83 New Member

    Interesting! i would definately want to hear more about that. Can you find out what the name of the med is? I'd like to ask my doctor about that also. He is always interested in new research.
  3. carebelle

    carebelle New Member

    I have thought about this to if it works let us know .VERY INTERESTING.

    We think its a virus so why not treat it with those strong drugs ?
  4. lenasvn

    lenasvn New Member

    I read somewhere that our immune system is down (just like in HIV), the only difference is- HIV has a fatal outcome, CFS doesn't (we're stuck with it, indefinitively).

    I was misdiagnosed with RA and for a while I took Plaquenil that is supposed to supress the immune system. Of course, the result was devastating, my immune system was not overactive like in RA, but "underactive". I was very sick indeed during this treatment.

    That was just a sign for me that I had CFS.

    I believe this treatment may be promising.

    professor Garth Nicolson told me that the Rf titer can often be seen in people with chronic inflammation (not only RA!) and that people with FM/CFS often are misdiagnosed with RA because of it.
  5. JenniferAnn539

    JenniferAnn539 New Member

    I find this extremely interesting.

    Could you please find out exactly what she is using and where it is being compounded? Could you also find out how many patients she has tried this on, and to what degree they responded favorably and if there were unfavorable responses? Lastly, is there any written material that she is basing her protocol on, that I would be able to direct my doctor to read? Thanks!

    PLEASE be sure to post if you give this protocol a try. I will be looking forward to it with much anticipation.

    Thanks again for this interesting post.

  6. scarflady

    scarflady New Member

    I will be seeing my doctor next week and should have the prescription information by then and will let you know what she prescribes. She did say it has to be compounded.
    I did a little research on Google for HIV Immune System Medication for Chronic Fatigue. There is some information but none specific whereby I could give you the exact name. I will let you all know when I have the information.

  7. Pianowoman

    Pianowoman New Member

    There are several different meds that are used to treat HIV depending on each one's situation. Most of the meds have very severe side effects and, in fact, some patients go off them because they can't stand the S/E.
    I would doubt that many doctors would be willing to use them for CFS without strongly positive studies to back them up.
    Given all that, though, it is interesting and may, at some point, help in our research.

  8. ulala

    ulala New Member

    I just watched a show on Discovery Health about a new treatment for AIDS called Secrets Of The Great Plague.

    Scientists discovered a mutated gene, that if a person inherited it from both parents it protected them from the Bubonic Plague and another diseae that killed almost everyone that it infected. Some people never got the diseases even though they were in close contact to those who had the disease and died.

    They have made some medicines that mimic this particluar gene. The gene prevents the HIV virus from entering the cells so they can never become infected.

    The medicines are called fusion inhibitors or entry inhibitors. People with HIV are being treated successfully with these drugs. I was just looking this up and now found your post. I was acxtually looking to see if any CFS sufferers have been treated with these drugs. So far I haven't found any but these may very well be the drugs that your doctor mentioned to you.

    Hopefully this is true! Keep us posted!

    Thanks for posting!
  9. JenniferAnn539

    JenniferAnn539 New Member


    How did your appointment go?

    Do you have any information to share about the protocol that your doctor is using.

    Any information would be greatly appreciated.

  10. scarflady

    scarflady New Member

    It's been two weeks since starting on Naltrexone. My doctor prescribed 3 MG and I take one capsule at bedtime. I wanted to wait to see if there was any improvement before emailing again. One week ago I added L-Thearnie capsules, an amino acid found in green tea and take both at bedtime and feel that there is some improvement. I am able to do a little more during the day and am sleeping a little better. Adding the L-Thearnine was probably not a fair trial for the Naltrexone but as you know, desperation sometimes over rules logic. I should also add that my doctor also increased my thyroid from 137 to 150. I will continue to take Naltrexone and L-Theanine and will keep you informed.

    Wishing you Wellness!

  11. alaska3355

    alaska3355 New Member

    For the update. I've been interested in the results people are getting from Valtrex, and this sounds like a similar drug. Let us know how you are doing....I imagine the treatment will take some time.... Terri
  12. elliespad

    elliespad Member

    Larry Freiders, Registered Pharmacist, has a GREAT website called "The Compounder". In it he discusses Low Dose Naltrexone. To find his website, just search for "the compounder". On the main page, hold mouse over "Health Topics', then pop out screen for "Multiple Sclerosis" then next pop out screen for LDN (Naltrexone).

    Hurray for your Doctor who is willing to THINK AND ACT, outside the box. I hope this treatment offers a measurable amount of improvement for you.
  13. CarolynAnne

    CarolynAnne New Member

    I have been taking LDN for 2 years. I take 3mg at night. This medicine has improved my immune system. In the past, I would get sick if I was in a room with someone who coughed. I can say that since taking this medicine - common colds are a thing of the past. My NK Cell count has also improved.

[ advertisement ]