XMRV and Transmission: The Big Question

How Many Retroviruses Are There ?

Well, I'm a little confused. Not the first time. I thought I had read that there are only 4 retroviruses known; HIV, HTLVI, HTLVII, and now XRMV. But Dr. Klimas seems to be stating some things that are completely contrary to my own understanding.

RE: """... the horror and anguish of those that might have thought that it might be as debilitating as H.I.V., as well as the dread of the thought of potentially passing it on to another person."""

I'm a little surprised by this statement. It seems a lot of people with ME/CFS (which might be caused by XMRV), are in a lot worse shape than people infected with HIV but are able to control it with anti-retroviral drugs. Seems many with HIV are able to live pretty normal lives. Not many with ME/CFS that I know of live normal lives.

Also, I'm concerned, and I would think researchers should be concerned about transmission, and certain safety precautions should probably be taken until we know more. Specifically, I think there should probably be some immediate steps taken to safeguard the nation's blood supply. If 4% of the general population is infected with XMRV, it seems like somebody receiving blood has about a 1 in 25 chance of becoming infected with it (if it is indeed transmitted by blood, which would seem likely to me). From what I've learned about XMRV, I would be hesitant to accept a blood donation unless it was absolutely critical.

Which brings up a whole other topic of why our nation's blood supply is not sterilized with ozone. My understanding is that ozonating blood can safely sterilize blood of all viruses. But like I say, a whole other topic.

I believe Dr. Mikovitz (sp) believes that in order to become infected with XMRV, we need to have certain predispositions (genetics being one) to allow it to happen. I seem to remember she thinks it is likely that it is much more difficult to transmit that HIV.

Well, a few thoughts, perhaps somewhat rambling. I'm not sure if they're very coherent or not.

Wayne

Something I put on the Phoenix Rising website.

I'm always careful about Dr. Cheney because my sense is that he tends to be a bit dramatic; eg 'most infectious retrovirus" when retroviruses are usually not very infectious.

http://aboutmecfs.org/Rsrch/XMRVTransmission.aspx

Transmission issues, etc.

This is especially bothersome I think and I hope it is sorted through fairly quickly too but who knows. Several thoughts:'

In the late 40's all the way to 1971 millions of pregnant women were given a drug, DES (synthetic estrogen) to prevent miscarriage, often given as "pregnancy insurance", and some women were told they were "pregnancy vitamins. I found out at age 19 that I was DES exposed (had been in utero) and it causes (or can cause) a variety of gyn issues (cervical dysplasia, cancer, increased chance of breast cancer), infertility, or problem pregnancies. At first this was all that was focused on but further studies have shown that all animal studies indicate that when a pregnant mother lab animal is given DES (early in pregnancy) the damage is done to the daughter and son offspring---to include immune system damage. Research continues in this area, but it is interesting that the numbers of pregnant women that were given this drug was just tremendous worldwide and then along came things like CFS in the age group of the offspring. Could be a part of a subset in that a DES son or daughter (or grandson or granddaughter) could be set up for getting various illnesses and having difficulty fighting them off effectively. Everyone who reads this, ask your mother is she took DES or was given any drug when she was pregnant with you that she couldn't really identify (as I recall my mom saying, it was a little round red pill but could have been variations.) Ask though and if so, go to a gyn or urologist who knows about DES and be checked for evidence that you might have been effected. This is just a wise thing to do for anyone really. Also, check out DES ACTION online.

Do you guys renember the genital herpes scare? Folks who had it felt like pariahs. Then people calmed down. Apparently acyclovir works but these days it's not an issue.

I suspect XMRV is more easily transmissable during active phases which probably would be early in infection or relapse. Unlike HIV it appears to be completely latent in some folks. (Well, one percent of Caucasians are immune to HIV).

I think it is transmissable in ticks. If I have it that's how I got it. I treated with antibiotics within twelve days of a tickbite. So why am I so sick?

All I can say is that for 9.5 years I have read endlessly on borrelia and babesia. I've read tons of animal and human studies. I've read about and communicated with thousands of Lyme patients. I could never explain the bizarre aspects of this epidemic with the existing science. Now I have an elegant explanation and all the pieces fall into place for me. XMRV could be the gatekeeper--immunosuppressive and devastating, allowing other tickborne infections to proliferate. That would be in, as Mikovits motes, genetically vulnerable people.

Here's an example. Wildcondor (moniker) on lymenet. I met her during my first hyperbaric dives. She and a friend had camped in a tick infested area. They got hundreds of ticks in them. He got a brief infection and recovered easily. She was ill for years, almost died. Did tons of antibiotics and hyperbaric. Had sepsis from her IV line and almost died. After years of incredibly aggressive therapy and hundreds of hyperbaric sessions she slowly recovered.

I cannot explain that. Sure, some people get, say, strep throat and some don't. But if you give antibiotics for strep it goes away.

Lyme is a bacteria. The same should be true.

However if in the genetically vulnerable a virulent retrovirus that recently jumped species is added to the picture I can explain every disparity that has haunted me. Now I have a mechanism for immunosuppressiom, neurological damage, and persistence of other infections in the face of extremely aggressive treatment.

Lyme & XMRV

Hi Jen,

Soooo, would you be hesitant to aggressively treat Lyme (or any other downstream infection) at this point without knowing whether you are XMRV positive or not? That's kind of where I'm sitting right now. Seems it would make sense to try to address any XMRV infection before going after other "secondary" infections. What do you think?

Wayne

Wayne...

I'm on my iPhone so sorry for typos. Yes I would do the following if possible financially:

1) Get Geniva detoxigenomics test and Vitamin Diagnostics methylation tests. Or if you can tell from your sensitivities you have detox and/or methylation block consider those as any drug treatment will be difficult

2) If a history of suspected tickbites assume borrelia and babesia infections.if not sure get Igenex western blot and Fish tests.

3) Get tested for XMRV. If possible test R-nase which seems pertinent to this virus.

I'm probably just going to do 3. And that will be after a second wave of data that proves this is not an artifact.

Meanwhile, we see folks with #1 issues improve slowly on Rich's protocol. For #2 issues there are herbs, and hyperbaric. For #3 if I get the energy I want to push for testing of ticks. I did write WPI requesting this. In addition I'd like to see assays done on the thousands of known drugs against XMRV. This has been done on a few pathogens such as malaria. It's expensive technogy bit can uncover very unexpected drugs that surprisingly combat a pathogen. All the ME organizations would have to push for that.

One concern of mine is monotherapy for a retrovirus. I saw some early HIV patients do okay on monotherapies for a while only to die gruesome deaths because the virus built up resistance over time and then they were out of options. Patience is key here to find the optimal least toxic drug combos that avoid that hazard.

Jen....Agreed that xmrv makes sense of many things that just weren't connecting up. My trigger for ME/CFS was HepB vaccine. I had no acute infections or other known triggers at the time of onset....only the vaccines. Chronic retro-viral infection could explain this as well as all the other NeuroImmune diseases that seem to have vaccine as the trigger for some, yet not for others. XMRV seems to explain a lot.....but the proof is yet to be seen.


Wayne....great question about treating secondary infections if one has xmrv! I am on Vistide and doing just that.....well, I'm unsure of the xmrv test results as of yet. But cmon, 97% are xmrv positive? I have had mod-severe ME/CFS for 15 years....odds are I have it. Dr Peterson just said it will have implications for me being on the Vistide. I'm not sure what that will mean until my next visit a week away. But it seems to me that if one were xmrv positive, treating the secondary viral infections would be futile since the retro-virus re-activates them anyhow. Maybe hitting all of them? Would be super cool if Vistide worked on it, but doubt that. So many "what if's". More shall be revealed very soon.

Hi Ross,

"I'm not sure what that will mean until my next visit a week away."

Keep us posted!

Advocate....I'll be posting on that as soon as I return.

Bev....I find that DES issue interesting. I am tempted to ask my mother because she would have been pregnant with me during that period. But, knowing my mom and that she is fully aware of how sick I have been, it would cause her a lot of guilt even just raising the question. So, I am wondering if having that knowledge would be worth it? Can anything be done about it anyhow?

Hi Ross,

Did you get ill immediately after any of your Hep B vaccinations or was it later on? Also how many did you have, did you have the full course of jabs?

I believe my health problems were triggered by a course of Hep B vaccines too. I became ill after coming down with an ear virus about 1-2 weeks after my 4th jab/booster, so was just curious about your experience.

Well done on your lab results too they are really impressive, hope you continue to make headway.

Thanks

Hi Froufox......I got my HepB series in 1993....it was 3 shots spread over 6 months. I got the first one....the second one a month later....the 3rd shot 5 months after that. I got sick immediately after the second shot. I was on disability before I could get the 3rd shot, but did return to get it because I just didn't get what was happening at the time (The docs said I was depressed). So yes, the trigger was pretty much immediate especially in light of the fact that I had no acute infections at the time. I was on and off disability and making job adjustments (for less stress) for the next 8-9 years until I crashed into severe illness about 6 years ago.....Thanks to some great doctors I have at least returned from that abyss.

Why were you folks getting hep b shots anyway? The high risk behaviors are dirty needles and unprotected sex. Were you in the healthcare professions perhaps?

Hi Jenbooks,

I had the Hep B series too--healthcare profession--required. I was on another forum (a dysautonomia forum) where we took a poll on how many had had the Hep B shots--most had. This is interesting in light of Judy Mikovits saying that vaccines can cause activation and replication of viruses you might already be carrying.

Sushi

I'm an RN......

Dr Hyde in Canada has some studies on post HepB vaccine ME/CFS. Significant numbers of people have reported onset after vaccines...especially the HepB vaccine. By the way, have you noticed that Nursing is a dominant profession presenting with ME/CFS? Sure we are exposed to more infections than the general population....but ALL Nurses get Vaccinated, and I think Dr Mikovitz is definitely onto something in that regard.

Hep-B vaccines

I had the Hep-B series last fall and started with a relapse of symptoms a few months later. Curious!

Anybody know of any other studies/research re ME/CFS and specific vaccines? I've had symptoms since childhood so way before Hep B (I as born in '65), but I did have extra vaccines as a child (relative to the normal schedule which if course was a fraction of what kids get now) because my dad was in the Foreign Service and so had extra "travel" vaccines.

Nina

I'm sorry that I do not Nina.....I would have to search it. But I am sure there have been many studies, it's just an issue of getting at them. I know that Polio and Small Pox Vaccines have been suspect. I would recommend searching that topic. Even though controlled by the CDC, the Brighton Collaboration archives may give ya something.

Hi Ross,

Thanks, that was the same year I had my vaccines too! I got my first jab in Dec 92, then the second in January '93and the 3rd one in March. After I was tested and found to not be producing enough antibodies (which I guess was a sign that my body wasn't responding anyway) I had a 4th booster around April/May.

So instead of the usual course spread out over 8mths I had an advanced course within the space of just a few months. I do remember coming down with quite a bad cold/flu in the January as I remember losing my voice but got over that ok, but do wonder if that was a sign that my immune system was already struggling. Then within a week or so of the 4th jab I caught an ear virus that was going round and never got over it. I developed neurological symptoms and initially thought I had MS. I started a full time Masters course a few months later which was I was unable to complete with all the fatigue and brain fog so had to give it up in the end. Typically I was told I was depressed too but had never had depression in my life! Then after that I did some part time work for a while but was too ill to continue and havent worked since 1997.

I didnt really associate it with the vaccines at the time, not until later did I start to learn more about how vaccines can suppress the immune system and about the thimerosal in them did I think there might be a connection.

Jenbooks I was a healthworker too, I worked in Occupational Therapy with adults with learning disabilities and some of my clients had Hep B so I was told that I needed the vaccine. I was also due to work on a summer camp with a similar client group that summer so having an advanced course seemed like the best thing to do at the time..

Ross as you became ill quite suddenly did your employers believe it was down to the vaccine too and did you ever try to get compensation? Mine wasnt really that obvious and you have to make a claim within 3 yrs so I was too late. Anyway I'm so glad you found good doctors and are improving a lot with your treatment.

Nina there is some interesting info here..

http://www.investinme.org/InfoCentre vaccines-past research.htm

It is thought that the Salk and Sabine vaccines for polio that were administered during the 1950s might have led to an increase in ME as there were outbreaks of ME/CFS following immunisations as found by ME specialist Dr Elizabeth Dowsett and Dr Melvin Ramsey. One reason this is thought to occur is by possibly allowing enterovirses such as Coxsackie viruses which are common in people with ME, to proliferate in the body, as viruses compete with eachother. Interestingly this is similar to how Dr Mikovits is describing how vaccines may reactivate an XMRV infection by altering the balance of viruses in the body. ME has been compared to poliomyelitis by Dr Dowsett and here is a really interesting interview with Dr Richard Bruno who has researched post polio syndrome and found it remarkably similar to ME.

http://www.mefmaction.net/Patients/...equelae/BrunoInterview/tabid/456/Default.aspx

More info here.

http://www.whale.to/vaccines/cfids.html

Dr Charles Shepherd also discovered in one study he did of a group of 91 ME patients that 50% of them had developed the illness shortly following Hep B inoculation.

I contacted Byron Hyde a few months ago with regard to vaccines and ME as I know this is something he has gathered evidence on.. he told me he has a long list of cases of post immunisation ME/CFS cases mostly from the RHB (Recombinant Hepatitis B) and influenza vaccines.

Peterson on Hep-B Vaccinations and CFS

I've just listened to Dr. Peterson's talk in Gothenberg Sweden. During the Q&A (at 1:04 mins. into the pgm), the question was asked,

"About the connection with viruses and CFS: Can vaccination be a cause or an explanation for CFS later?"

Peterson replied, "There's a whole group of patients that we've separated out that the onset was a vaccination, particularly Hepatitis-B, for some reason."