EBV and M/E

How closely are EBV and ME linked ?
Ive read that they are two completely different conditions, but ive also read that they are one in the same?
Reason im asking, is that when Cher was bed bound, suffering from all of the symptoms that are common in M/E,
she was diagnosed as having EBV and successfully treated not once, but twice by german doctors.
Anyone know what her treatment was, and if it could be applied to M/E patients ?

Hi Andrew, it was some form of homeopathy and she was treated in Germany I believe.

hi, ive found this link where people have researched where she was treated, and what possible forms of treatment she under went ;

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1228881

Now i could be wrong, but i thought lots of people, both well and unwell could test positive for EBV and that when the virus is activated
its actually a relapse of severe M.E.
I understand why she hasn't come out and said she has M.E, considering that there's no insurance thats covers the illness, but surely she could
have been less secertive of her treatment, if it helped her come out of a bed bound condition, surely it'd help many others?

Andrew,

I just posted a response under a thread about the Rituxan trial where I make some references to EBV. Here is the link if you are interested in taking a look at it. http://forums.phoenixrising.me/showthread.php?16203-Status-of-Rituximab-ME-CFS-Studies/page4. All the of the herpesviruses remain in the host for life, so it is how the virus stays under the body's immune radar that appears to play a role in symptom suppression. The earlier the treatment of the viruses seems to also impact remission of symptoms, as well as actively treating when symptoms reappear. If I was guessing, Cher probably fits into a subset of viral CFS/ME patients. If you are involved in a line of work where ongoing insurability of the employee is necessary I think I would weigh heavily the risks of advertising my personal health issues.

I believe that EBV (or other herpesviruses) still remains one of the important clues in diagnosing CFS/ME patients. I thought Dr. Lerner's video lectures/published studies are very interesting in helping to understand why EBV may be so elusive. I would think that the particular lab conducting these tests may also play a role on whether or not EBV or one of the other viruses can be detected. Perhaps the current lab tests are only picking up a subset of patients with high enough EBV titers. Quest/Focus Labs is one of the labs most often used by infectious diseases doctors in the U.S. to look for these type of viruses.

I believe research conducted by Dr. Lerner, Dr. Montoya, Dr. Kogelnik and others has found that the dose and length of time for treatment with antivirals is a significant factor in suppressing EBV and other herpersviruses such as HHV-6 and CMV. Looking at the research related to the oral antivirals of Acyclovir, Valtrex, Famciclivor and Valcyte they all seem to have some effect on these herpesviruses, but it appears to be dose related. While Valcyte might be the strongest of these oral drugs and most effective on CMV (and possibly HHV-6). In looking at the limited research on these drugs at high doses it appears that all of these drugs may have some effect on EBV.

When you read or listen to Dr. Lerner's studies you will see that he substituted Famvir for Valtrex for his EBV patients who experienced certain side effects to Valtrex. Famvir or generic famciclivor has a higher rate of bioavailability than Valtrex or Acyclovir. However, there have not been very many published studies conducted on high doses of these drugs. Valcyte, Famciclivor and Valtrex continue to show some significant results in treatment of CFS/ME patients subject to the type of virus treated, dose amount and length of treatment. For Famciclivor, high doses ranging from 1 gram and up given every 6 hours for six months or more seems to be where the research is headed. The constant round the clock dosing is a critical factor in being able to knock the viruses down. One of the promising results from this research is that Valtrex and Famvir are now off patent (at least in the U.S.), so the cost of treatment with these drugs using generics has gone from thousands or dollars a month to less than $5.00 if covered by an insurance drug plan. Not sure of the status of the Valcyte patent.

At high doses for long periods of times any of these antivirals can have serious health risks (especially to the kidney and liver). Valcyte has the added problem that it can cause severe mood alterations including suicidal thoughts and possible carcinogenic effects. I think there is great concern by a number of the CFS/ME doctors that people are self treating with these medications because they are desperate for a treatment, but any high dosing of these drugs really needs careful monitoring by a clinician who is knowledgeable in this type of treatment.

Wally

Edit: I just looked at the Prohealth link noted above about Cher and EBV. It is interesting to note that Dr. Dantini talked about his belief that treatment of food allergies accelerates the antiviral treatment for EBV. [URL="http://forums.phoenixrising.me/content.php?388-A-Fibromyalgia-Doctor-Steps-Out-Dr.-Dantini-Treating-Fibromyalgia-and-CFS-ME-CFS-with-Antivirals"/URL]

one big clue that these herpes infection leave is that there is some type of immune supression(studies show nk function is low), if its a cause or an effect is hard to tell, maybe a combo of both for some. People with normal immune systems generally can keep these herpes viruses suppressed.
There are many of us who have had some success with much lower doses of av's compared to what lerner uses for his patients. I think if patients have their liver and kidney function checked regularly then i think the risks are low, valcyte maybe a different storie.

cheers!!!

Heapsreal,

I believe you are correct that these antivirals (even Acyclovir) at low doses have helped suppress symptoms in some CFS/ME patients. The high doses seem to show some success in larger groups of patients and suppression of symptoms may last longer. I have been told that some of the side effects with Valtrex and Famciclivor may be alleviated if you hit your system hard and fast with antiviral treatment. I know this goes against a lot of what people have experienced, but it has worked for some. I went the hard and fast route and only experienced bothersome side effects the first 24 hours of treatment and then when the dose was increased again for the first 24 hours.

Wally

I think the reason that alot of us havent used such high doses is expense. eg in australia famvir cost $200 for 30 x 500mg tablets. I did end up using a much cheaper source online but still using lerner doses would cost me more then i can afford.

Yes that's possible and I was just reading a thread about Dr Lerner who seems to get a few patients well on antivirals. From reading that thread, however, it seems that only a subset of patients are that "straightforward" to treat and then get well.
Also there are other infections that are one with CFS in symptoms. Other herpes viruses, Dr Chia's viruses I remember, Lyme disease...and EBV and Lyme seem to be good mates according to some research, as often are present together.

Is there any word on the Montoya infection study yet??

Not that I have heard yet. I was hoping that Dr. Lipkin could be persuaded to giive the CFS/ME community a first quarter update on where the study stands. It is coming up on 3 months since his last communique, so it seems like a reasonable time to ask if he can provide another update.

Heapsreal,

Do you know why Famciclivor is so expensive in Australia? I can get a 3O day supply of 8 grams a day for $5.00 thru my health insurance coverage. The generic brand that I use is TEVA and it was recommended over the generic coming out of India. I have not checked to see the cost without insurance coverage, but I can look into it to see how expensive it would be. Does Australia have any patient assistance drug subsidies to offset the high cost of drugs? I wonder if the mfg. might also offer a discounted payment plan?

According to Rich Van Konynenburg hypothesis, a screwed up methylation cycle will lead to glutathione depletion. In turn, glutathione depletion will lead to immune suppression.

We have a different health system to the states, so meds are only cheap if prescribed for certain indications, famvir is only indicated for shingles and genital herpes, so if its not indicated it is an off label prescription and have to pay full price.

I just did a quick on-line search for the price of generic famciclivor and I was very surprised to see that the least expensive price for 100 tablets of 1/2 gram was about $215. For the high dose recommended under Dr. Lerner's protocol you would be looking at about $850 a month. I now understand why even the generic drug could be cost prohibitive for many people. Additional costs for blood testing and office visits to monitor the patient while on the drug would just add to the overall cost.

Dr Marshal talks about how certain viruses inhibit the VDR- vitamin d receptor, and epstein barr and lyme are mentitioned to inhibit the VDR greater than 8 fold. He is a microbiologist and said he wonders why bacteria didnt try to inhibit part of the immune system (the VDR) and then discovered certain viruses/bacteria, already DID inhibit the VDR.

http://www.youtube.com/watch?v=MRx8eHBufHQ&feature=related

Charles, I don't think that Dr Trevor Marshall is a microbiologist is he? (or has any medical, research or medical scientific qualifications)? He was an Engineer last time I asked.

Watch the video I posted if you have question about Dr Marshall lol.

There has been much confusion over the years. EBV which lasted a long time used to be called post viral syndrome which was said to improve within 2 years. CFS also has been called post viral syndrome at times.

Ive read some study ages ago which said that 10% of those who get mono (sick from EBV, note not everyone gets sick from EBV) end up getting CFS. The same rate is mentioned for lyme disease and a Ross River fever (a mosquito carried disease in parts of Australia so I guess the study I read must of been an Aussie one)... 10% of people who get these illnesses end up developing CFS.

There is are tests which can be done which indicate if something like EBV is reactiving. I personally think that more then 10% of ME people have had or have issues with EBV.

Dear Andrew, I am writing from India. I am male, 40 and came across your interesting posts on the prohealth message board. How are you doing ? I was interested in knowing if you had done Dr Brice Vickerys protocol and if it helped you. I have been having symptoms of Fibromyalgia since a year though I dont habe an official diagnosis. is there any way to contact you by email ?

With love and hugs ,

Deepak