Our experience with antiretrovirals

Two months shy of three years, I discontinued antiretrovirals, began after receiving reports of positive XMRV cultures from VIP Dx in January 2010. Ali and I started AZT and Isentress in March 2010, added Viread in May 2010, discontinued AZT in Feb 2011. I discontinued Isentress in August 2011 and remained on Viread monotherapy until two weeks ago. Ali continues on Viread and Isentress. We also tried the protease inhibitor Lexiva, and I tried it a second time, but didn’t tolerate it.

We both improved for the first year, but it wasn’t a clean experiment, as I’ve said all along. We did other things concurrently. When we started, I thought we’d ride on the coattails of HIV and have viral load measures in a year or two. We sent lots of blood to the WPI and Dr. Mikovits was studying us, but the specific results were never shared with me and are now lost, with the rest of Dr. Mikovits’ data.

We stopped AZT after 11 months, with no way to monitor, to prevent long term toxicity. Neither of us noticed much of anything coming off of it. By the summer of 2011, I knew there would be no help with monitoring and came off Isentress in anticipation of our both stopping the drugs. I wanted to see what happened to me first, before Ali came off. I tried to stop Viread shortly after. Nothing noticeable happened when I stopped Isentress, but I felt worse after a few days of stopping Viread, better when I went back on. I did that two other times by the first part of 2012, with the same results.

Meanwhile, Ali continued to go uphill. Me not so much. In hindsight, I wish I had not stopped Isentress, since Ali continued to improve and I didn’t. I functioned fairly well, with lots of travel and stress, through my last trip to Hawaii in October, but then crashed pretty hard. By Christmas I was feeling very poorly. I always say, when things go south, stop the drugs, so I did. Since then, I am feeling a little better. I am having less nausea than I was having on Viread, but my nausea predated arv’s by several years and when I went on arv’s, I didn’t think it was worse. I am now on only Cozaar, baby aspirin and hormones. As I got sicker, I my tolerance for Deplin lessened, interestingly, and I am now taking an OTC dose of Folapro 800mcg once per day. I have increased nutriceutical and nutritional support, am doing biofeedback, and am about at my October baseline, I’d say.

Here’s an interesting paper about raltegravir, though reactivated Herpesviruses are not a part of our clinical picture: A Drug Against AIDS Could Be Effective Against The Herpesvirus and here’s the paper: Structure and inhibition of herpesvirus DNA packaging terminase nuclease domain. It isn’t new, but I hadn’t seen it before. Here’s a new one: Biochemical, inhibition and inhibitor resistance studies of xenotropic murine leukemia virus-related virus reverse transcriptase:

We demonstrated that XMRV RT mutants K103R and Q190M, which are equivalent to HIV-1 mutants that are resistant to tenofovir (K65R) and AZT (Q151M), are also resistant to the respective drugs, suggesting that XMRV can acquire resistance to these compounds through the decreased incorporation mechanism reported in HIV-1.

So there are still scientists working on this really creepy virus that was created in a lab and infects human cells, but fortunately, not particularly well, though the statement below is not very comforting. Severe Restriction of Xenotropic Murine Leukemia Virus-Related Virus Replication and Spread in Cultured Human Peripheral Blood Mononuclear Cells:

In summary, our results show that XMRV replication and spread is severely restricted in PBMCs, but these cells can serve as a reservoir for generation of infectious virus that can potentially spread to cells that express low levels of these restriction factors.

It’s good for us that they are still studying it, because, although we don’t have XMRV, we still may have something very much like it. I still find the extreme resistance to trying HIV drugs for something besides HIV to be completely bizarre. AIDS drugs have been noted to be useful on occasion for Sjogren’s, MS and HTLV, but then generally nobody follows up even so. Here is the latest reference on clinical trials for HTLV associated leukemia: Clinical Trials and Treatment of ATL. I aways find it disheartening to read about HTLV, because it has been neglected for so long, even though it was isolated by Bernard Poiesz, Francis Ruscetti and their co-workers in Gallo’s lab over 30 years ago.

Speaking of dishearteningly slow progress, look at this paper from 2005: Association of human endogenous retroviruses with multiple sclerosis and possible interactions with herpes viruses. From the abstract: “Gammaretroviral HERV sequences are found in reverse transcriptase-positive virions produced by cultured mononuclear cells from MS patients, and they have been isolated from MS samples of plasma, serum and CSF, and characterised to some extent at the nucleotide, protein/enzyme, virion and immunogenic level.” And this one from 2010: The human endogenous retrovirus link between genes and environment in multiple sclerosis and in multifactorial diseases associating neuroinflammation. “In particular, certain viruses transactivate promoters from endogenous retroviral family type W (HERV-W). HERV-W RNA was first isolated in circulating viral particles (Multiple Sclerosis-associated RetroViral element, MSRV) that have been associated with the evolution and prognosis of multiple sclerosis. HERV-W elements encode a powerful immunopathogenic envelope protein (ENV) that activates a pro-inflammatory and autoimmune cascade through interaction with Toll-like receptor 4 on immune cells. This ENV protein has repeatedly been detected in MS brain lesions and may be involved in other diseases.” But nobody wants to try antiretrovirals on these patients?

Why is it such a stretch that the concepts learned from the AIDS epidemic could have vast utility beyond the treatment of that one well funded infection. Where are the drug companies??? We don’t have specific drugs and we don’t have any way to monitor the effects of the drugs we do have. So we are effectively stopped from studying something promising. A good percentage of the people who tried antiretrovirals experienced mild to moderate improvement for a period of time. Very little harm happened, even though it was a completely random and uncontrolled experiment. The drugs are not scary compared to many drugs that are given to ME/CFS patients every day. I can tell you there is a lot more possibility of harm from the SSRI’s, pain and sleep meds which are routinely offered, with no chance of positively impacting the disease process.

So, we as a community paid VIP Dx a bunch of money to tell lots of us we had XMRV. They are lucky the damages were only financial and not large enough individually for anybody to spend the effort to recover. Several people have sent me this: Transcribed  and posted on MECFS forums from Mass CFIDS/ME & FM Association’s Fall 2012 Lecture: (YouTube video of lecture by Dr. Byron Hyde)

Byron Hyde: The other thing he [Lombardi] says is that he studied under Dr. Suhadolnik at Temple University. So I picked up the phone and I [Hyde] phoned Robert [Suhadolnik] – who is a wonderful wonderful researcher man – and I said: ‘Tell me about Lombardi – who studied Chronic fatigue Syndrome under you and did research with you’.

He [Suhadolnik] said: ‘He never did’.

I said: ‘Oh ? What do you mean he never did ?’

[Suhaldolnik:] ‘Well, he came here for a few days and I got rid of him because he was a nuisance and he didn’t knew what he was doing and that was it.’

…one minute later:

Byron Hyde: I figure they (WPI) made somewhere between two and three million dollars on that [XMRV-test]. People all over Europe, people all over Canada, the United States, were sending their blood in. The other thing which is interesting is the Whittemore-Peterson advertises as a charitable institute. It is not a charitable institute. It’s got a Cameo institute on the floor below which is for fee for service. And they are there to make money.

Here is the WPI version: Date: January 6, 2013 (link)

Vincent C. Lombardi, Ph.D., Director of Research (…) He later continued to work in CFS-related research in the laboratory of Dr. Robert Suhadolnik at Temple University, studying the interferon regulated RNase L antiviral pathway and its involvement in CFS. (…)

The bio then goes on to give Lombardi credit for Dr. Mikovits’ ideas. Of course they also give him credit for the collaboration with Silverman. You’d think he wouldn’t be so quick to take credit for that. So let’s see what is left. He got a PhD at University of Nevada, Reno in 2005 and then invested in Redlabs and went to work running tests on humans. What was his dissertation about? When did the training happen that qualified him to be culturing retroviruses from humans? What prior experience did he have running a clinical lab? It would appear that anything he learned after finishing school must have been from Dr. Mikovits. Actually he was already trying to take credit for her ideas when I was there. He took me to breakfast in December 2010 and told me that it was really his discovery. He was rewriting history already, a dishonest post-doc, trying to discredit his mentor to a new colleague.

Please read Larry’s comments after the last blog (link). We were robbed and the WPI is still sucking up all the money. I expected a federal investigation of the lab, holding them accountable for the money they made on the tests, but it hasn’t happened. There seems to be no critical thinking on the part of the government agencies in question. So they have the grants, which will run their multi-year courses, irrespective of whether the money is producing anything meaningful or not. Nevermind that it is a very significant chunk of all the government money available to study our disease and it might be much better used. Why not give that money to Dr. Ruscetti or Dr. Lipkin? Or give it back to Dr. Mikovits, so she can get on with her work, as should have happened in the first place.

Posted last night on Facebook by Joan McParland:

NEWRY & MOURNE ME/FMS SUPPORT GROUP STATEMENT

As most patients are aware, Dr. Judy Mikovits has been forced into bankruptcy due to recent unfortunate events. A number of members discussed this issue at our monthly meeting last night and have made a decision to send some financial help to Dr. Mikovits.

The main reason for this action by some members of the support group is to show our support and also in an attempt to return the unreported kind acts and dedication shown to us by Dr. Mikovits on her numerous visits to N. Ireland.

Many more patients, worldwide, who have contacted me recently have also witnessed and benefited from the caring nature of the human being behind the scientist.

As from today, Dr. Mikovits is now free to return to work, we wish her well and hopefully she will be able to continue her dedication to helping find the answers we all so desperately need and deserve.

The entire situation has already been well summed up by Ian Lipkin’s quote below..

“I feel very badly for Mikovits, [her co-author] Ruscetti and Harvey Alter [a hematologist at the NIH Clinical Center in Bethesda, Maryland, who led one of the CFS studies]. Mikovits in particular — she has lost everything. She can be wrong but she’s not a criminal. She has been honest in a respectful, forceful way and said that we have to conclude that we were wrong. You can imagine how difficult it must be, and I think she should be applauded. Lots of people wouldn’t have the balls to do that. She has come across as a scientist who really believes in the importance of truth.”

On a much happier note, Michael Snyderman is still stable on full HAART. Stable cancer for 31 months. No chemo brain. And still no interest from the scientific or medical communities??? It is a travesty.

Dr. Snyderman’s update…

My study so far shows:

1. The combination of AZT+raltegravir has activity but is not sufficient to maintain the response.

2. Tenofovir has activity but is not sufficient to maintain the response.

3. Lopinavir has activity which so far is longer than previous responses. More data is necessary to know how long this drug will work.

4. A trial with more cancer patients is indicated.  We need to know what are the predictors for response and what is the optimal drug combination.  What is learned from cancer patients would potentially be valuable to patients with CFS.

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Tonight’s song: Slip Sliding Away by Simon and Garfunkel

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24 thoughts on “Our experience with antiretrovirals

  1. There is very little doubt that tenofovir is in fact an immunomodulator

    J Acquir Immune Defic Syndr. 2011 Aug 1;57(4):265-75. doi: 10.1097/QAI.0b013e3182185276.
    Tenofovir selectively regulates production of inflammatory cytokines and shifts the IL-12/IL-10 balance in human primary cells.
    Melchjorsen J, Risør MW, Søgaard OS, O’Loughlin KL, Chow S, Paludan SR, Ellermann-Eriksen S, Hedley DW, Minderman H, Østergaard L, Tolstrup M.
    Source

    Department of Infectious Diseases, Aarhus University Hospital Skejby, Aarhus, Denmark. jespmelc@rm.dk

  2. This is also a different way of looking at drugs which are supposedly anti HIV only

    Biochem Pharmacol. 2009 Jul 1;78(1):70-7. doi: 10.1016/j.bcp.2009.03.022. Epub 2009 Mar 31.
    HIV protease inhibitor lopinavir-induced TNF-alpha and IL-6 expression is coupled to the unfolded protein response and ERK signaling pathways in macrophages.
    Chen L, Jarujaron S, Wu X, Sun L, Zha W, Liang G, Wang X, Gurley EC, Studer EJ, Hylemon PB, Pandak WM Jr, Zhang L, Wang G, Li X, Dent P, Zhou H.
    Source

    Department of Microbiology & Immunology, Virginia Commonwealth University, Richmond, VA 23298, USA.

  3. personally i feel that ME/CFS has been dragged through the mud for so long that it will be impossible for it to ever be seen for what it is without all the peripheral shit. I sadly believe that we wont ever see a real treatment in our lifetimes.

  4. I have had this disease for around 50 yrs now, (first minimally and then worse and worse for a long time), and been involved in support groups etc since about 1998. In that time I have observed a significant number of people who, using various essentially unrelated treatments, none of them arv’s, had the same overall experience as yours, Dr. Jamie. Big improvement sometimes for years, and then- crash. Sometimes a second leap upward, more often not.
    I personally have experienced it on a smaller scale. Small improvements leading to small increases in normal living lead to a crash.
    Right now I am recovering from a stomach flu. First time I have had an acute illness in over 7 yrs. I am sure I somehow became vulnerable because, after 3+ yrs holding back due to a-fib I finally learned how to control it (couldn’t tolerate ANY of the pharmaceuticals), and started living a little more. My impression is that increased activity always leads to some kind of difficulty, even when it feels right. I think the key-if there really is one- is NOT to do what feels natural and right, but to stay behind that curve and move forward more gradually. Hard to manage.
    (I do wonder just what sort of whatever could cause such a pattern, but I think it is an important clue.)

    • Adrienne, I would be most interested to hear more about your case. You are the only patient I have read who has been sick for 50 years. Did you get some other diagnosis in the past? What was your onset like? Were there others in your community who got sick? Thanks for any information you wish to share.

  5. Lombardi’s thesis can be found here,
    http://innopac.library.unr.edu/record=b2425438~S0
    The problem to solve is what ‘M.S.’ means. Does it mean
    ‘master of science’ (that is: Lombardi doesn’t have a Ph.D.)
    or does it mean ‘medical sciences’ (it might be a Ph.D.
    thesis) ?

    If you want to know what is going on here go to,
    http://web.archive.org/web/20110211200921/http://vipdx.com
    Then turn your head sideways by 90 degrees and go to,
    http://en.wikipedia.org/wiki/Square_and_Compasses
    The trick is to notice the astrology.

  6. Jamie, You said above that “reactivated Herpesviruses are not a part of our clinical picture.” I have read that Dr Nancy Klimas prescribes famvir for CFS/ME because she thinks EBV is a factor. And there are some others who believe HSV1 in the CNS can be a big factor. Can you tell us why you think reactivated Herpesviruses are not part of your clinical picture?

    In addition to the above question, I thought I should share a warning from my recent experience with tamiflu. I got the flu and took tamiflu for the 1st time. It caused an explosion in my central nervous system, with flashing lights, jumping feelings and pain that felt like I had a cup of crushed glass in my head. After 5 days of fever between 102 – 103, I took 1 amoxicillan, and broke out in an itchy, stinging rash, that an allergist/immunologist and my internist agreed was an “Epstein Barr Virus Amoxicillan rash,” and they considered that rash to be diagnostic for re-activation of EBV. (Blood tests aren’t back yet.) So their thought is that EBV has been just below active level, but able to cause some of the inflammatory symptoms in my brain and CNS, and the tamiflu and flu were enough to let it fully re-activate. Has anyone else with CFS/ME had such an experience with Tamiflu?

    • I got the flu in December – first flu I have had in 20 years, and only 2 colds in 17 years. I started it the second day of symptoms and it worked great! I was sick in bed 5 days and fully recovered in 10. Go figure.

      • I’m glad it helped you and hope Amantadine helps Jackie (below). I had looked forward to trying Tamiflu, hoping it might have some little suppressive effect on the chronic illness because I’d read of others having that experience. It felt like it initially re-activated my CFS/ME, so I went off the drug. I wonder if it would eventually have suppressed it if I had stayed on.

    • Once someone posted on this blog about lactoferrin reducing all pathogens without side effects , just by varying the dosage upward from 250 mg maintenance, according to the pathogen’s virility

  7. Jamie…I took the antiretroviral “Epivir” (Lamivudine/3TC) for 11 months – before it stopped working for me (of course it always stops working at some point – usually between 6 and 12 months).
    I became ‘toxic’ (who knows why) and my Doctor titrated me off of it. But remained on the very high dose Acyclovir that has been the mainstay of my ‘protocol’.

    Once Epivir had cleared my sytem I began to slowly improve – most noticeably my brain function – but eventually an all around improvement which enabled me to become the fulltime caregiver of my best friend while he dyed of terminal cancer (no small feat!).

    Naturally I crashed a bit following his death in May – but (miraculously) rebounded within a few weeks, back to my post Epivir status – able to leave my bed and couch, even able to drive and carry on with my life (though carefully, as always). Most importantly – no longer plagued with chronic shingles which I had been dealing with for the past 6 years. (and best of all, my brain function is still as sharp, and I am able to read so much that I’ve switched to a kindle)

    My doctors newest plan for me (and I think I’m the 20th patient to try this, with about a 40% responder rate) is Amantadine – and if I tolerate that for a month or so – a second trial of Epivir added to the mix! I am thrilled at the prospect. (unfortunately, I lost another very close family member on Dec. 5. – but even that extreme trauma did not produce PEM/PENE as I feared it would.) When I feel settled – I will begin both these drugs.

    An interesting note – my longtime Neurologist has also been using this very old (Parkinsons) drug Amantadine – predictable and generally well-tolerated – with his large group of MS patients with some success.

    My husband was diagnosed with ME a mere 3 years ago (forced into an early retirement by the disease) and has been on Equilibrant for those years to keep his disease stable and thankfully has not progressed to ‘severe’. (We have other family members diagnosed with ME, and we are all on varying drug protocols)

    As always, I give credit (and heartfelt thanks) to our Doctor – John Chia – for NOT giving up and for continuing to pull out all the stops when it comes to drug ‘trials” for his patients. His ME patient base ranges from the walking wounded who are able to make it into his office to be seen and treated…to those in hospitals, literally at deaths door.

    He treats ALL of us to the best of his ability – he’s tenacious and a real bulldog about finding SOMETHING that makes a difference – and his work has given many of us some manner of a ‘life’ again. The use of antiretrovirals is just another weapon to try in his everyday arsenal – no more, no less.

    Continued good luck to both you and Ali!…as well as to Dr. Snyderman (he had been on my mind, and I’m glad to hear his good news!)

    Regards, J.Nance

    • J., I’m happy that high dose acyclovir has helped you. I actually had a central nervous system reaction when I tried acyclovir in 2005 similar to what I described above with Tamiflu. I went off acyclovir after one day. Did you, perhaps, have an initial exacerbation of symptoms, that became suppressed as you continued the acyclovir? Or no initial exacerbation of symptoms? Thank you.

  8. Thank you again Jamie for another great article. I am pleased to hear too that Dr Snyderman is still stable.

    Lombardi’s Thesis for his Phd can also be found here. It appears he was looking at the actions of DDT, an insecticide. DDT by the way is banned in the EU.
    http://books.google.co.uk/books?id=89lrUAcPY78C&pg=PP1&lpg=PP1&dq=Vincent+Lombardi+dissertation+UNR&source=bl&ots=rWnHCHazoP&sig=a1XQNJzy7b5LjD3tS7SvzzTJRME&hl=en&sa=X&ei=uM_tUL68DbGk0AXkzoGwBA&ved=0CEMQ6AEwAw
    founder

    You raise an excellent point about a federal investigation. Why have the federal government still not begun an investigation of the WPI and Redlabs (which was selling tests under the name VipDX)? If the virus doesn’t infect any organism how could they have been selling clinically validated tests? A federal investigation could also uncover if the validation process was even done at the commercial lab.

    The relationship of the WPI and Redlabs (VipDX) to the Whittemore’s and Lombardi needs to be uncovered. Lombardi claims to be the founder of Redlabs. Is this correct, or is Dr Hyde correct? The WPI were adamant that the Whittemore’s own the lab, even claiming it was set up to help out after 9/11. Really?

    “VIP Dx is a small state certified laboratory in Reno, Nevada that was formed in response to the September 11, 2001 crisis which resulted in the cessation of blood sample shipments between the United States and Europe. Faced with the loss of important lab tests impacting patients with neuro-immune diseases, the Whittemore family made the decision to support the lab in Reno”
    http://www.wpinstitute.org/news/docs/WPI%20Release%20Diagnostic%20Test.pdf

    “WPI has licensed the latest version of the test to Viral Immune Pathways Diagnostic
    Laboratories (VIP Dx) in Reno, Nev. The non-exclusive license allows patients and their doctors access to a reliable diagnostic tool. The newly refined test uses a virus culture methodology that yields more reliable results in one test at a lower cost to patients.”

    “WPI Research Scientist and co-author of the Science paper, Dr. Vincent Lombardi, is providing technical assistance and oversight of the VIP Dx testing. In exchange for the non-exclusive license, VIP Dx will pay a royalty to WPI for each test it conducts.”

    “Dr. Lombardi is an employee of WPI, and has no personal financial interest in VIP Dx. Likewise, the Whittemore family put their interest in VIP Dx into a trust to benefit WPI. The availability of these tests has a dramatic impact to the CFS/ME community. These tests allow licensed laboratories to begin answering important questions about XMRV’s incidence in disease and prevalence in the world. WPI hopes that this will generate further research related to XMRV. “The institutes’ driving goal continues to be the translation of research to meaningful results for patients, explained Whittemore”
    http://www.wpinstitute.org/news/docs/WPI_pressrel_011410.pdf

    It was Lombardi who was assigned to validate the tests, in the lab he claims he founded and which the Whittemore’s admit to having an investment in. They say he had no personal financial interest, but this is business. What are his business interests in the lab? If he was in charge and an employee of the Whittemore’s, Annette who runs the WPI and Harvey who runs Redlabs, what about the Trust that was set up? How does this work? The Whittemore’s put their family interests in Redlabs into a trust, but they run both the WPI and Redlabs, and it is their staff working there and in charge of the testing? Who was running the Trust then? What if it was Lombardi?

    Now Vipdx has ceased being used as a name for Redlabs. They are just Redlabs again with Harvey still in charge. Instead the WPI is using another new company, UNEVX, which this time Annette runs. Just how many companies do these people need?

    So Redlabs are important enough to help out after 9/11, so surely they are important enough to be investigated by the federal Government, if, as Dr Hyde has said, they just made millions from patients.

  9. While potential of ARVs for MS has been neglected, at least a HERV Env monoclonal antibody is now being trialled :

    ” … GNbAC1 is a humanised monoclonal antibody of the IgG4 type, which is directed against the MSRV-Env protein. After validation of the MSRV-Env as a therapeutic target in preclinical experimental models, a clinical development programme has been initiated.

    http://registration.akm.ch/einsicht.php?XNABSTRACT_ID=155287&XNSPRACHE_ID=2&XNKONGRESS_ID=171&XNMASKEN_ID=900

    GNbAC1, a Humanized Monoclonal Antibody Against the Envelope Protein of Multiple Sclerosis-Associated Endogenous Retrovirus: A First-in-Humans Randomized Clinical Study http://www.ncbi.nlm.nih.gov/pubmed/23200102

  10. More about GeNeuro, the company behind GNbAC1 trial:

    http://www.geneuro.com/en/technologies/pipeline.php

    GeNeuro builds a therapeutic product pipeline for disorders of the nervous system with high unmet medical needs. GeNeuro’s therapeutic approach is to act upstream of the pathological process of the disease, thus increasing efficacy and safety. The company’s goal is to optimize the management of the disease, including the treatment, the diagnostic tools and the patient’s follow-up.

    Multiple Sclerosis is GeNeuro’s most advanced indication. The lead compound is a therapeutic monoclonal antibody for the treatment of Multiple Sclerosis. GeNeuro’s goal is to provide a drug with a therapeutic advantage over existing drugs in Multiple Sclerosis, which mainly delay neurological damages and disability.
    Schizophrenia is GeNeuro’s second indication.

    GeNeuro also targets other neurological and autoimmune diseases.

  11. Researchers at Barts in London (yes, THAT Barts!) are advocating for trials of dual EBV-retrovirus inhibitors in MS. This blog entry addresses the question of why such trials have not been conducted yet:

    “… Unfortunately, this and other papers in the field on the topic of MS-associated retrovirus are very controversial; retrovirologists in general have yet to accept the virus as a definitive entity. This is causing problems for the field; for example funding agencies are unlikely to fund research in the field due to controversy that manifests itself as poor reviews. In my opinion the peer-review system acts as a hurdle for controversial topics. At the end of the day the only way to overcome this impasse is by doing further work in the field and getting experts from outside of MS involved. We are therefore planning to convene a meeting next year, of experts in field, under the umbrella of the Charcot Project to review the data and define a path forward. This is such an important issue that we are planning clinical trials in MS that target both EBV and human retroviruses. At the moment we are targeting them separately, but if this research is accurate we may need a dual therapy.”

    :(
    full blog entry here http://multiple-sclerosis-research.blogspot.co.uk/2012/10/ebv-and-herv-dual-viral-hyppothesis.html

      • Is it a case of one virus (HERV) leading to another retrovirus which could explain why “funding agencies are unlikely to fund research in the field due to controversy that manifests itself as poor reviews.”

      • Actually this makes no sense. There are loads of papers on HERVs published all the time. Loads on the MS retrovirus. The difficulty is in obtaining funding to research exogenous retroviruses, which are know to reactivate HERVs (endogenous retroviruses). Again the peer review system being at fault due to clique’s and anonymous review.

    • 20 mg daily of estriol (bioidentical/natural) repairs lesions, reduces pain and raises energy levels in MS , ME/cfs, Lupus, without side effects.

      The FDA is applying for patents of estriol with synthetic ‘poisons’ mixed in— so that big pharma can control estriol.

      FDA recently removed estriol from their approved drug list for Medicare Part D.

  12. I have a couple of curiosities to post – perhaps not relevant to anything here, but maybe worth noting. One is that there is a new study out linking fungal infections to MS. This is only the abstract, but check it out.
    http://www.ncbi.nlm.nih.gov/pubmed/23322279

    Second note, I now have had a mild case of the flu and a serious case of the common cold in six weeks’ time. I was assuming I may have finally gotten a normal virus because my immune system was more normal. BUT then I realized that I have not taken any vitamin C for about 2 months. I used to take 1 gram a day for years and never had a cold or flu for years. Go figure.

    As to TamiFlu, is it safe? I haven’t had time to read the link given above, but, hey, my flu was not serious at all, and I THINK that was because I got the TamiFlu within 24 hours of the onset.

    Enquiring minds want to know, but realize they probably never will know.

  13. I believe you would be interested in a response from the Parliament in the UK. In particular the last line.

    Gamma Retrovirus Infections
    “Mr Willetts: The Medical Research Council (MRC) is funded by the Department for Business, Innovation and Skills and is one of the main agencies through which the Government supports medical research.

    Researchers at the MRC’s National Institute for Medical Research are investigating infection and replication of retroviruses, such as xenotropic murine leukaemia virus-related virus (XMRV). Two papers resulting from work on XMRV in patients with Myalgic Encephalopathy/Chronic Fatigue Syndrome and also in prostate cancer patients have been published. Neither study identified a link between XMRV and disease. Details of the sensitive serological and PCR assays used in the studies are described in the papers. There are no clinically validated assays to study gammaretroviruses in humans.”

    http://www.publications.parliament.uk/pa/cm201213/cmhansrd/cm121127/text/121127w0008.htm

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