Discussion in 'Fibromyalgia Main Forum' started by herbqueen, Jan 24, 2010.

  1. herbqueen

    herbqueen New Member

    Since the discovery of LDN's immune modulating effects were on HIV patients where it halted their disease by Dr. Bihlari (spelling?).........wondering if LDN would work to suppress XMRV?

    Wondering if any you with CFS has tried this and what your experience was?

    There is also a trial going on for HIV/AIDS in Africa spear headed by Dr. McCandless (famous autism doc who is using LDN for autism).. results have not been published yet, but rumor is study is progessing nicely.
  2. equanimous

    equanimous New Member


    I've had CFIDS for about a decade now, and I started LDN as an experimental treatment for it last year. It has been somewhat helpful for me although it is only part of a bigger picture (of supplements, diet, prescription drugs, etc) that has allowed me to go from being bedridden to fairly high-functioning. The one thing that I have evidence for is that LDN probably decreased the amount of inflammation that was going on in my body. The indirect evidence for this is that almost as soon as I had started LDN, I was able to dramatically decrease the amount of hydrocortisone I was taking. Given that XMRV is thought to increase inflammation in those who have it, I would think that LDN would be an appropriate treatment. The fact of the matter is that LDN seems to be having a positive effect in treating numerous illnesses from fibromyalgia to chron's, so it wouldn't surprise me if it were effective in treating XMRV. I wouldn't call it a wonder drug in that it doesn't necessarily cure you (and at least for me, the results weren't uber impressive), but it's certainly amazing in terms of its scope of effectiveness across diseases. Hope this helps.

  3. herbqueen

    herbqueen New Member

    Pharmacy recommended by Dr. Bihari:


    Bernard Bihari, MD, is the discoverer of the clinical effects of LDN in humans.
    In his groundbreaking clinical trial of patients with HIV/AIDS at Downstate
    Medical Center in1985-86, Bihari discovered the significant effectiveness of low
    dose naltrexone in protecting the battered immune systems of those who were
    infected. With that knowledge, he entered private practice in an attempt to
    counter the then untreatable disease.

  4. herbqueen

    herbqueen New Member

    I seem to have CFS brought about by chronic EBV and HHV-6 infections. (Still
    looking for a doc in the DC metro area to help with that.) Three years ago I was
    diagnosed with adrenal fatigue and hypo thyroid. (No kidding doc! Is that why my
    temp is never greater then 96 degrees?) So I'm on HC and thyroid meds. It is not
    uncommon for me to take more the 50mg of HC just to make it though my day at
    work and my temps and still low and variable. I do not have any FM pain or
    related symptoms. CFS is so bad some have suggested I file for disability.

    Ten days ago I started on VERY low dose of Naltrexone: .5ml in the evening.
    Most nights I slept fine, 2 nights I woke up and couldn't get back to sleep but
    I don't know if I can blame the Naltrexone. Two of the past 4 mornings I took
    another .5ml.

    I'm hoping the terrific results I'm experience can be attributed to Naltexone,
    though I would think my amounts are too small to have any impact. In addition
    to the mental fog lifting I have more physical energy. (Keeping things in
    perspective I'm still in really bad shape) After the very first night I woke up
    the next morning feeling better. It was a Saturday morning and since I don't
    have to force myself to go to work I usually stay in bed until mid-afternoon but
    got out of bed at 8:00 AM! And I didn't have to lay down for several hours
    after getting out of bed!! Another symptom of CFS is inability to concentrate.
    Not knowing about CFS last spring, my concentration was so bad I convinced my
    PCP I had developed ADD (at 51 years old, sure, it could happen) and pleaded
    with her for ADD meds. I tried Stratera for three weeks with no benefit and only
    weird side effects. If the past couple days are any indication of future
    progress I might even have enough concentration to read a book!!

    Just feedback from the field. Sally

    Tue Jan 12, 2010 9:02 pm

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  5. herbqueen

    herbqueen New Member

    Good news on your progress. Curious as to what were the other components of your improvement? Did you find a knowledgable doctor to help treat you or do this on your own?
  6. equanimous

    equanimous New Member

    Hi herbqueen,

    Sorry it took me a little while to respond here. I'm going to try to be thorough in explaining what I've done to regain a decent amount of health and functioning. First of all though, I do have two very knowledgeable doctors who have been helping me along the way, one of whom is located in MA, the other in NYC. So here's a list of the things that I am fairly sure have been necessary components of my recovery. Most of these treatments were based on various tests that I've had done.

    1) Diet. I have had several tests for food allergies, both the ELISA blood test and comprehensive skin prick tests, which turned up numerous sensitivities. I have therefore eliminated certain major offenders such as gluten, milk, peanuts and soy. I have also eliminated refined sugars, so basically I eat some sweet things like apples or bananas, but nothing sweetened like candy. I think this is necessary as it is easier on the adrenal glands not to receive this sudden sugary burst of energy that can be followed by a crash. I am also taking allergy desensitization shots for all of my food sensitivities. I am not sure if this is helping or not, but I'm sure that the change in diet has helped. In addition, I avoid sulfur foods such as garlic because they tend to stir up or redistribute mercury causing brain fog.

    2) Amalgam Removal and Chelation. I had tests done that showed abnormally high levels of mercury in my blood so I had my amalgams removed by a holistic mercury-free dentist, and I have so far completed a month's worth of chelation. I don't know if it's directly correlated or not, but I haven't had nearly as much brain fog since I had the amalgams removed. I am currently chelating with DMPS according to Andy Cutler's protocol and will be adding in ALA as I can tolerate it.

    3) Hormonal Supplements. I take several different supplements that address endocrinological deficiencies. I am currently taking 2.5 mg of hydrocortisone. This helps a bit with energy levels. As mentioned before, I used to be on quite a bit more, but the LDN has allowed me to cut back on it. I am taking about 2 mg of pregnenolone as well. This has definitely helped with my mood if nothing else. I also take two adrenal support supplements that are absolutely crucial. Even with all the other improvements I've made, if I am unable to take my adrenal support supplements for some reason, if I run out say, I crash hard. I take Cortisol Control which is a combination of Relora and Sensoril (found in other supplements too) and I take CalmPRT which includes rhodiola rosea, phosphatidylserine, glycine, and taurine.

    4) EFAs. Essential fatty acids have indeed been an essential part of my treatment. I take DHA and evening primrose oil on a daily basis. There's a good deal of evidence that EFAs are typically depleted in those with post viral syndromes as they were in my case. The DHA and GLA also help to decrease inflammation.

    5) Additional Supplements. I also have taken coenzyme Q10, selenium and vitamin E at various times. I think that the coenzyme Q10 was necessary for awhile as my levels were severely depleted, but I don't really need to take it as much now. I believe the selenium helps somewhat with energy levels, perhaps because of its role in glutathione synthesis.

    6) Methylation Protocol. I started a simplified version of the methylation protocol about half a year ago. I still haven't added in all of the component supplements, but I think it has already started to help me a little bit.

    7) LDN. Low-dose naltrexone. I believe that this has helped to decrease inflammation in my body and therefore give my adrenal glands a break.

    8) Moderate Exercise. I think that a moderate amount of exercise is helpful for me now that I can do it. I never would have suggested doing it to the old me when I was bedridden, but now with my extra reserves of energy, I think it's good for me just like it would be for a perfectly healthy person.

    9) Mold Avoidance. I was getting sick from the house I was living in where there was evident mold problems. Now that I live in a clean, dry, environment, I feel much better.

    10) Avoidance of Other Environmental Sensitivities. I also get sick around a couple of other environmental toxins, including bleach, so I need to be careful to avoid those, or I crash hard.

    So those are the main things that have sort of nursed me back to health. I mean I literally went from being incapacitated lying in a hospital bed with my family having no idea what to do with me, to several years later holding down a part time job, having an active social life, traveling, participating in new activities like rock climbing and flying trapeze, etc. None of that would have happened though without trying out a million different treatment options until I could finally figure out what worked for me. Hope this helps!
  7. HeavenlyRN

    HeavenlyRN New Member

    Equanimous - as I was reading your above response, I was getting exhausted! I am truly impressed by all you have done to help yourself.

    I am fairly new to this forum, though I was diagnosed over 9 years ago. In reading so many of these posts, I realize how truly ignorant I have been about this disease that has robbed me of so much of my former self.

    I had never heard of LDN, or XRMV, or many of the other things I have read about on this forum. I was taken out of work and put on short term diability 6 weeks ago. Mostly for very severe back and leg pain, along with a fibro flare. I have spent most of that time in bed, sleeping - or going to doctor's appointments. Since December 3rd I have been to the emergency room 3 times for pain control.

    In reading these posts - all over the board - it has made me realize that it is time for me to take control of my health. It's obvious that no one else (ie: the doctors) is going to do it for me.

    Now, here is my question: how long did it take for you (or anyone else for that matter) to accomplish all of the things you mentioned above? My intentions are good - I WANT to feel better. I WANT to go back to my job. I WANT to get out of the house for something more exciting than doctor appointments. I have seen a naturopath and will be seeing her again next week. She had many ideas about why I might be feeling so cruddy, and has given me some "supplements" to help. The problem is, I already take so many other pills, there are days that I just cant get those supplements down. In the evening, I have 20 pills that I have to get down. My stomach is already upset enough and when I think of getting all those pills down it just gets worse.

    I've tried cutting out processed foods and have mildly succeeded. The problem is that "real" foods are expensive. My husband is not working right now and I am on New York State disability which is laughable. So, it is hard to buy "real foods."

    I could go on and on, but I don't want to put anyone to sleep. How have other people taken care of themselves and had improvment when feeling so lousy?

    Thanks in advance - Jan
  8. LonelyHearts

    LonelyHearts New Member