When I was looking into GcMAF last year, I found a lyme disease researcher/physician whom was experimenting with low-dose chemo in combination of GcMAF to “tease out” infection. I assume his logic was based on this vein of HIV research:
“In the new study, researchers gave single doses of a skin cancer chemotherapy drug called vorinostat (Zolinza) to eight HIV-infected patients. The drug seemed to flush out the hidden virus so it was more easily visible.” http://www.healthfinder.gov/news/newsstory.aspx?docid=667028
I thought to myself, “Change is afoot!”, started asking around, seeing if the most open-minded doctors I knew would be willing to experiment with this approach. As it turns out, the most balls-to-the-FDA-walls doctors weren’t willing to touch this. Instead of low-dose chemo, I got low-dose tears at the thought of this brilliant concept being stuck in mad scientist territory.
Shortly after, the bombshell Rituximab study on ME/CFS patients came out of Norway from Fluge & Mella, and all of a sudden there was speculation (justifiably) about whether our disease is autoimmune and a spike of interest in drugs used in autoimmune illness. Rituximab is mainly used in rheumatoid arthritis but has been used off-label in lupus, MS, and others. I’ve started digging around to see which immune modulating drugs are most effective in other autoimmune illnesses besides Rituximab which carries a rare but potentially fatal risk of JPL, and here is what I found:
The first line therapy is often antimalarial drugs. Plaquenil seems to be the most prescribed. You may be wondering what antimalarial has to do with immune suppression:
“Antimalarials improve lupus by decreasing autoantibody production” - http://www.lupus.org/webmodules/webarticlesnet/templates/new_learntreating.aspx?articleid=2246&zoneid=525
Digging through patient ratings, the response seems above-average & incredibly consistent:
Curetogether for plaquenil (n=6) : 66%
Curetogether for antimalarials (n=25): 60%
webMD (n=192): 76%
RemedyFind* (n=56): 66% *Note: this is an old survey from 2004
Plaquenil is already used in lyme disease, but not ME/CFS unless there is a high ANA:
“(Plaquenil) is prescribed to CFS and FMS patients if they have a high ANA level plus symptoms of Sjogren’s syndrome, lupus, or other autoimmune diseases. - http://www.wfprofessional.com/treatment.htm
The most commonly prescribed steroid for lupus, according to www.lupus.org, but as swift as it is in suppressing the immune system, it has an famously long list of side effects. Despite this concern, the ratings for effectiveness are overwhelmingly positive and again, incredibly consistent:
Curetogether (n=19): 79%
WebMD (n=35): 78%
RemedyFind* (n=14): 73% *Note: this is an old survey from 2004
Sifting through the forums such as http://www.healingwell.com/community/default.aspx?f=15&m=2345043, I find an intriguing pattern of responses vacillating wildly between amazing & downright horrible. I’ve read a number of patients say their long-standing pain went away while on it.
A bit of a buzz word lately on twitterverse. This is an antifolate & antimetabolite chemo drug. This is a great example of a high-dose chemotherapy drug that has been successfully used in lower doses for autoimmune disease. Although it’s the gold standard drug for rheumatoid arthritis (another post will focus on RA drugs), “it has also been shown to be very effective in treating skin lesions, arthritis, and pleuritis in people with lupus.” - http://www.lupus.org/webmodules/webarticlesnet/templates/new_learntreating.aspx?articleid=2246&zoneid=525. This is usually only prescribed after steroids are ruled out.
Here are some patient ratings:
Curetogether (n=6): 67%
WebMD (n=16): 76%
Important for ME/CFS patients: In another study by Fluge & Mella, they also used methotrexate to resolve recurring symptoms for 1 out of 2 patients (whom had been given Rituximab already):
“We reasoned that the transient CFS recovery was related to methotrexate treatment, which induces immunomodulation in part through B-cell depletion” - http://www.ncbi.nlm.nih.gov/pubmed/19566965
Caroline T. Anderson lived for 40 years with ME/CFS before recovering with a combo of famvir & methotrexate (she started with just methotrexate). She seems confident that methotrexate worked because of antiviral properties, but based on the very mixed results we hear from patients on Valcyte, I think the jury is clearly still out on why it helped.
Dr. Dantini mentioned in the link above that he finds an equal percentage of herpesviruses in Lupus as he does in Fibromyalgia. Despite the insistence from many in our communities that we have an infectious disease, the utilitarian approach is to find drugs that restore quality of life while looking for cause, infectious or otherwise. There needs to be more research on 1) what mechanisms our illnesses share with Lupus & 2) more clinical trials looking at off-the-shelf drugs for illnesses that haven’t traditionally been considered autoimmune.
If you have ME/CFS, FMS, or Lyme Disease and have been prescribed any immune modulating Lupus drugs, we would love to hear about your experience. You can write us privately as well at [email protected]