We need a LIST OF TREATMENT OPTIONS to send to Judy Mikovits

Hope123

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1. Rituximab - already in trial in Sweden at Haukeland University; supposedly trial is ending this month and it'll be a while before results come in

BMC Neurol. 2009 Jul 1;9:28.
Clinical impact of B-cell depletion with the anti-CD20 antibody rituximab in chronic fatigue syndrome: a preliminary case series.

Fluge , Mella O.

Department of Oncology and Medical Physics, Haukeland University Hospital, N-5021 Bergen, Norway.
Abstract

BACKGROUND: Chronic fatigue syndrome (CFS) is a disease of unknown aetiology. A patient with CFS had unexpected, marked recovery of CFS symptoms lasting for five months during and after cytotoxic chemotherapy for Hodgkin's disease. We reasoned that the transient CFS recovery was related to methotrexate treatment, which induces immunomodulation in part through B-cell depletion. METHODS: In a case series, this patient and two additional CFS patients were B-cell depleted by infusion of the monoclonal anti-CD20 antibody rituximab. RESULTS: All three had improvement of all CFS symptoms. Patients 1 and 2 had major amelioration from 6 weeks after intervention, patient 3 slight improvement from the same time, but then improved markedly from 26 weeks after intervention. The symptomatic effect lasted until weeks 16, 18 and 44, respectively. At relapse, all were retreated with a single (patient 1) or double rituximab infusion (patients 2 and 3). Again, all three had marked symptom improvement, mimicking their first response. After new symptom recurrence, patients 1 and 2 were given weekly oral methotrexate, patient 1 having effect also from this agent. Patients 1 and 2 were again treated for a third rituximab infusion after new relapse, again with a marked clinical benefit. No unexpected toxicity was seen. CONCLUSION: These observations suggest that B-lymphocytes are involved in CFS pathogenesis for a subset of patients. Benefit for all CFS symptoms, the delayed symptom relief following B-cell depletion, the kinetics of relapses, and the effect also from methotrexate treatment, provide suggestive evidence that B-cells play a significant role in the ongoing clinical features, and that CFS may be amenable to therapeutic interventions aimed at modifying B-cell number and function. More systematic investigations of this therapeutic strategy, and of its biological basis, are now needed.

PMID: 19566965 [PubMed - indexed for MEDLINE]

2. Staphylococcal vaccination - haven't read it all yet but very interesting; especially seeing one patient who benefitted from it is a prof. of medicine at the Karolinska Institute (a well known place) A few articles on this; this is one:

Eur J Pain. 1998;2(2):133-142.

Effects of staphylococcus toxoid vaccine on pain and fatigue in patients with fibromyalgia/chronic fatigue syndrome.
Andersson M, Bagby JR, Dyrehag L, Gottfries C.

Pain Unit, Kunglv Hospital, Sweden

Abstract
Positive results of pilot studies of the effect of staphylococcus toxoid vaccine in patients with fibromyalgia and chronic fatigue syndrome were the incitement to the present, placebo-controlled study. It included 28 patients who fulfilled the criteria for both fibromyalgia and chronic fatigue syndrome. The effect of vaccination with a staphylococcus toxoid was compared with the effect of injections of sterile water. Psychometric assessment was made using 15 items from the comprehensive psychopathological rating scale (CPRS), Zung's self-rating depression scale and clinical global impressions (CGI). The visual analogue scale (VAS) was used to measure pain levels, and a hand-held electronic pressure algometer was used to measure pressure pain thresholds. Significant improvement was seen in seven of the 15 CPRS items in the vaccine group when pretreatment values were compared to post-treatment values. In CPRS <<fatiguability>>, there were significant intergroup differences, and in CPRS <<pain>> intergroup differences bordered on significance. There was no significant improvement in CPRS items in the placebo group. Clinical global impressions showed significant improvement in the vaccine-treated group, and VAS did so in both groups. In a follow-up study of 23 patients, the vaccine treatment was continued for 2-6 years. Fifty percent were rehabilitated successfully and resumed half-time or full-time work. The results of this study support the authors>> hypothesis that treatment with staphylococcus toxoid may be a fruitful strategy in patients with fibromyalgia and chronic fatigue syndrome. Copyright 1998 European Federation of Chapters of the International Association for the Study of Pain.

PMID: 10700309
 
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Rrrr - you always surprise me with your ingenuity - I love how you get involved! :victory:

THis was posted on another thread by orgenix (sp) - It would be great if the WPI could find a non-toxic way to help us :Retro smile:

Non-drug treatments for viruses: virus sponge and hemopurofier
A couple of new inventions look promising for removal of viruses (and retroviruses?) without using drugs.

One is a 'virus sponge' : http://www.sciencedaily.com/releases...0513083222.htm

Another is the blood filter, sort of like a dialysis machine, that uses antibodies to filter out viruses:
http://www.sciencedaily.com/videos/2...cted_blood.htm
 

dsdmom

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I support Rituximab and other emerging monoclonal antibodies
As a side note...
Nancy Klimas told me that she wants to do a study on monoclonals for those patients with high IL-1 (which I have) as another possible avenue of treatment.
 
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Promote Protein kinase R or PKR (Eukaryotic translation initiation factor 2-alpha kinase 2) with Heparin. PKR is a protein protecting against viral infections. I developed a DVT after foot surgery, and felt really well after rest and 6 months of Heparin, but relapsed after.

I also had a huge improvement ( 1 1/2 years and counting) after taking Inosine (hypoxanthine riboside) and DMAE (Dimethylethanolamine) along with the other antioxidant/vitamin supplements, methylation unblockers.
Inosine is a nucleoside ( building block for RNA and DNA), possibly repaired cell damage or increased PKR or some other essential amino acid by promoting or resetting phosphorylation. Inosine also helps nerves regrow. DMAE promotes acetylcholine and choline, which reduces vascular inflammation, and has an antidepressant effect.
 

Rrrr

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okay, thanks everyone. i'm going to compile this list and email to judy m.

any last additions, add them now.

reminder: we are seeking supplements and meds to suggest to judy mikovits from WPI, to do trials on REGARDING XMRV (i.e. we are not looking for supplements and meds that you think help cfs in general, but XMRV specifically).

warmly,
rrrr
 
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Promote Protein kinase R or PKR (Eukaryotic translation initiation factor 2-alpha kinase 2) with Heparin. PKR is a protein protecting against viral infections. I developed a DVT after foot surgery, and felt really well after rest and 6 months of Heparin, but relapsed after.

I also had a huge improvement ( 1 1/2 years and counting) after taking Inosine (hypoxanthine riboside) and DMAE (Dimethylethanolamine) along with the other antioxidant/vitamin supplements, methylation unblockers.
Inosine is a nucleoside ( building block for RNA and DNA), possibly repaired cell damage or increased PKR or some other essential amino acid by promoting or resetting phosphorylation. Inosine also helps nerves regrow. DMAE promotes acetylcholine and choline, which reduces vascular inflammation, and has an antidepressant effect.
That is very interesting because to my knowledge, you are the first person to report taking inosine and DMAE long term. Inosine and DMAE in combination is very similar to isoprinosine (Immunovir), a drug that has helped some patients and that Dr. Cheney and Dr. Klimas use. Personally, I found the side effects of DMAE significant (overstimulation and anxiety) but did not have any side effects with isoprinosine. Can I ask you what kind of dosage you were/are taking?
 

Rrrr

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someone very knowledgeable mentioned these to me in a PM...

all cytokine inhibitors: Pycnogenol and Acubin spring to mind, and gemfibrazil