Q:… What are your favorite treatments for ME/CFS?
A:… There are two levels of treatment. The one we understand best is how to deal with the complications of CFS including poor sleep, fibromyalgia pain, secondary depression, physical deconditioning, negative thinking, poor social support. An experienced and sympathetic doctor can do a lot of good in these areas with fairly standard and well accepted treatments. Specialists (of which there are only a handful) will likely do better than non-specialists.
The next level is how do we actually treat the underlying disease? As you know there are no approved treatments. We don’t even know for sure if some, all or almost none of our patients have an active viral infection that could be treated with antivirals.
We have some possible but not proved partial treatments that I explore with selected patients.
These approaches include:
1. Antivirals, if Epstein Barr or HHV6 or CMV titers are very high. I prefer to use Valtrex or Famvir over Valcyte. Even though Valcyte is probably stronger, it’s much more toxic and very expensive.
2. It might make sense to add an immune boosting product such as AHCC (a shiitake mushroom derivative) to the antiviral or to use this on its own. I’ve just started using this.
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3. There’s considerable evidence that there’s inflammation in the brain in many CFS/ME patients.
There’s a fair number of medicines and herbs with anti-inflammatory effects on glial immune cells of the brain. Low dose naltrexone is one. Potentially, the antibiotic Doxycyline is another. Various herbal products have anti-inflammatory effects e.g. curcumin, green tea, panax Ginseng and others.
Low dose naltrexone has two double blind studies supporting its use in fibromyalgia, but has not been tested for chronic fatigue. Doxycyline has no studies for CFS/ME or fibromyalgia but has some favorable studies with early rheumatoid arthritis. So far as I know none of the herbs have data on CFS/ME.
The virtue of low dose naltrexone and the herbs is that they are very safe.
Doxycyline is not perfect but as drugs go is relatively safe.
One anti-inflammatory that has one good double blind study supporting its use for CFS/ME is rituximab. But, this immune system suppressing agent is very toxic. Until we have further studies, I don’t use it, although a few physicians are using it and claiming benefit, for example, Dr. Andreas Kogelnik in California.
Another approach is to improve the function of the energy pathways within mitochondria. A combination of pycnogenol and nicotimamide riboside improves mitochondrial function in rats. But human data is minimal. Again, these are likely to be safe.
We also screen for repairable metabolic abnormalities including the MTHFR folic acid mutation, which is quite common. We check for low coenzyme Q, low carnitine, magnesium, zinc and other nutritional metabolic factors. If abnormal we treat.
– Dr. Richard Podell