I made the long trek from Las Vegas to Santa Rosa hoping to find answers to mysterious questions such as “What is the origin of XMRV?” or “Why would a retrovirus spread like an epidemic at Incline Village in a high school?” Do I have more answers now? I do know I made a wise choice to drive from Vegas. My trip was more fun than Dr. Mikovits’. She was stuck on a plane in Reno for several hours.On the way up I marveled at the mysterious fog covering California. On the way back I wondered at Santa Cruz seeming to be a ghost town with virtually every beachfront restaurant not open for breakfast. There’s a lot I don’t understand. I did get some clues as to why I test negative so far for XMRV.I got answers or “almost answers” to many questions about this creeping retrovirus, XMRV. Here I am listing my observations. I will post a link to Dr. Mikovits’ presentation as soon as it is available.
- The retrovirus(s) has a high level of sequence diversity or different strains. The NIH (Alter and Lo) found a P (polytropic) MRV strain. This means that if you are infected with the PMRV strain you will currently test negative at The Whittemore Peterson Institute (WPI). Mikovits is working to develop more accurate testing for both strains. She hopes to have a test for PMRV by June 1, 2011.
- It takes up to 45 days to grow a culture from blood, if the retrovirus is in the blood at the time.
- XMRV leaves the blood and hides out elsewhere in the body until you are stimulated with another infection. [This could explain that the early outbreaks at Incline Village, NV, Lyndonville, NY and Raleigh, NC were caused by a secondary contagious infection superimposed on an existing XMRV infection.] Replication of XMRV is stimulated by inflammation and hormones.
- There do seem to be clusters of 20 to 400 patients in outbreaks in specific locales.
- Possible infections that enable XMRV to multiply would include EBV, HHV6, borrelia, babesia, bartonella, other?
- In families where there is XMRV infection 30% will develop severe mononucleosis (EBV) at puberty and never recover.
- If you test negative for XMRV in blood it may be because XMRV is not actively replicating in the blood. Dr. Cheney has suggested getting a flu shot which may activate the XMRV. [I think this may have been a joke: not that it wouldn't work.]
- In chimp studies the virus very quickly left the blood and went into reservoirs, lymph node, spleen, liver – maybe thyroid, sex organs, adrenal glands, salivary glands, brain.
- Current studies are ongoing (Eva Sapi) to see if there is an animal vector (mouse, tick) that might carry XMRV. [See Dr. Timothy Luckett http://cfidsresearch.blogspot.com/2011/01/xmrv-could-likely-be-emerging-zoonotic.html%5D
- Stress elevates cortisol levels which would in turn activate XMRV.
- Patients who are the sickest and patients sick for the longest time tend to test positive with XMRV in the blood.
- Some patients have a positive culture test but no antibodies. If they are treated and begin to get better antibodies for XMRV will show up.
- Paul Cheney, MD at the Cheney Clinic in North Carolina is seeing 81% of his chronic fatigue syndrome patients testing positive for XMRV. Males and females are equally sick with CFS. Family members of CFS patients are testing positive for XMRV at a rate of 50%. Family members are commonly found to have these issues: autism, fibromyalgia, mononucleosis and cancer.
- Given the high percentage of family members infected, transmission must be both casual and blood borne.
- The immune system of an XMRV positive CFS patient is found to be low in NK cells, CD56, DC19+ B cells are replaced with DC20 B cells which are immature and poorly functioning.
- Rituxan, a drug approved to treat rheumatoid arthritis, functions by killing these immature B cells and may work to kill XMRV by killing these infected B cells.
- One Lyme specialist found that all 65 Lyme patients he had tested for XMRV came back positive. Gordon Medical found 50% of their CFS and fibromyalgia patients were positive.
- If you have any of these labels you may find you are XMRV positive: Lyme, MS, Parkinsons, ALS, peripheral neuropathy, autonomic neuropathy, dementia or Gulf War Illness.
- What can we do to treat? If you test positive you may want to get an AIDS specialist to prescribe a triple combination of antiretrovirals: AZT, raltegravir, tenofovir. Dr. Joseph Brewer is finding his patients with XMRV are showing 20% improvement on these anti retrovirals.
- If you don’t want to take those yet, even though they are very safe under a doctor’s supervision, you can do some things a lot of us have already found helpful, namely boost the immune system and treat co-infections.
- Antibiotics for Lyme disease infections may be help. Antivirals for HHV6 and EBV may help.
- In Japan there was an epidemic of HTLV-1. Stopping breastfeeding stopped the epidemic.
- Taking anti-inflammatory drugs will reduce the replication of XMRV. If you can reduce inflammation and lower cortisol you will reduce XMRV. [This could explain why some of the natural treatments have helped CFS patients including meditation and deep breathing.]
- Potential treatments, for now, include reducing oxidative stress, increasing methylation and raising glutathione levels. [Now we see why nondenatured whey protein and B vitamins help.]
- Valcyte, Valtrex and Ampligen may reduce viral co-infections.
- If a patient has Lyme the treatment must include treatment for Lyme and XMRV.
- Dr. DeMeirleir is experimenting with GcMAF to treat XMRV infected patients. This makes sense as GcMAF is an immune modulator used to treat AIDS and certain cancers. Google it. It can only be purchased in Europe at this time.
- Stem cell therapy may be helpful in the future.
- Simple things you can take now that might help include Deplin (a medical food prescription) and N–acetyl cysteine or NAC.
- XMRV does seem to be related to certain cancers: chronic lymphocytic leukemia, mantle cell lymphoma an other non-hodgkins lymphomas.
We can help ongoing research by contributing to:
Whittemore Peterson Institute, Reno
Mail Stop 0552
1664 North Virginia Street
Reno, Nevada 89557
In conclusion I want to say that WPI is putting together an outstanding group of researchers and clinicians to study and TREAT patients. Key clinical leadership people will be the following doctors:
- Dr. Jamie Deckoff-Jones, M.D. Director of Clinical Services
Clinical Advisors will be:
- Joseph Brewer, M.D. Infectious Disease
- Jack Burks, M.D. Neurology
- Marcus Conant, M.D. HIV
- Robert Fredericks, M.D. Endocrinology
- Michael Snyderman, M.D. Oncology