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Adrienne Dellwo

Chronic Fatigue Syndrome: Dr. Lerner on Ampligen, XMRV

By November 3, 2009

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Dr. A Martin Lerner: Thoughts on XMRV (Updated), Ampligen

In my recent conversation with Dr. A. Martin Lerner, a former chronic fatigue syndrome sufferer who says he used his specialty in infectious diseases to find treatments for himself and others, I asked him about both the XMRV discovery (which was just days old at the time) and also about Ampligen, the proposed chronic fatigue syndrome drug currently awaiting FDA approval.

XMRV

XMRV is a retrovirus that researchers recently linked to chronic fatigue syndrome (CFS or ME/CFS). Dr. Lerner says that in his patients, he's discovered that 3 viruses are found in nearly everyone with ME/CFS -- Epstein-Barr virus (EPV), human herpesvirus 6 (HHV-6) and cytomegalovirus (CMV) -- and that some patients also have Lyme disease on top of one or more of those viruses.

At the time of our conversation, Dr. Lerner hadn't yet been able to look over the XMRV data but said he was definitely interested in seeing it.  Since then, he's had the opportunity to examine the research for himself, and he has this to say:

"I am delighted with Dr. Mikovitz's findings concerning XMRV in the bloods of CFS patients.  The more we understand of the science of CFS the better our care for our patients will be.  I look forward to the confirmation of the XMRV findings from another investigator(s) in another laboratory(s).

There is unequivocal evidence that EBV, HCMV and HHV-6 are etiologic in CFS.  Illness disappears upon antiviral treatment and CFS patients remain well.  If XMRV findings are confirmed, they will coordinate our better understanding for treatment of CFS.  We look forward to the science."

On the surface, it might seem like other research -- especially the XMRV finding -- could disprove Dr. Lerner's theories about EBV, HHV-6 and CMV. However, (and these are my words, not his) that's not necessarily true. If the XMRV findings are replicated and nearly everyone with ME/CFS is infected with it, that wouldn't meant that other infectious agents didn't play a role. Could XMRV make people more susceptible to complications/long-term infection by EBV, HHV-6 or CMV? Could EBV, HHV-6 and CMV make us more vulnerable to XMRV infection? These are all areas that researchers could explore in the future.

Ampligen

Dr. Lerner treats his ME/CFS patients with one of two antiviral medications:

I asked him about Ampligen, which many hope will become the first drug ever approved for ME/CFS. "The science behind Ampligen is sound," Dr. Lerner said. He doesn't use it because it has to be given intravenously, which means patients have to come to the office more often, whereas people can take the other two at home.

Dr. Lerner and I also talked a lot about exercise in people with chronic fatigue syndrome, and he has a very interesting take on it. That's coming up soon.

More on Dr. Lerner

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Comments
October 29, 2009 at 6:19 am
(1) Mindy Leavell says:

Adrienne, Check out this website. http://www.codiagnostics.com/XMRV/index2.php
They say they have a diagnostic test available for XMRV…..?

Guide Response: Right now, there’s no reliable commercial lab test for XMRV. Please see this post for more information:
XMRV Lab Tests: Should You Be Tested?

October 29, 2009 at 9:48 am
(2) Nancy A. says:

I saw that website myself, and my reaction was that I’m not paying $399 for a DNA test even if my results are positive. Just what am I supposed to do with these results? I’ve had CFS for 25 years, so I’m going to be patient and wait until the test is available at doctors’ offices and labs around the USA and until it’s covered by medical insurance. Yes, I won’t be holding my breath waiting, but that’s what CFS/FMS is all about. Save your money, friends!

October 29, 2009 at 11:37 am
(3) George says:

A presenter at the CDC said it was a VERY BAD idea to spend $400 for that test at that web site.

FYI.

October 29, 2009 at 1:35 pm
(4) Mick says:

Very sad that CFS patients do not attack the FDA for Ampligen approval. I know that it might not help all CFS patients but it does help many. FDA are a bunch of clowns sitting on their asses while many people suffer.

Guide Response: I shared your sentiments until the latest word came out, that the FDA is waiting for the manufacturer to provide toxicology information and resolve compliance issues at 2 facilities. It seems this time it’s the company that didn’t have all it’s i’s dotted and t’s crossed. If all goes well, we could have a decision early in 2010.

October 29, 2009 at 2:10 pm
(5) Franklin says:

If the test is reliable, makes sense to get it done even if there is no approved treatment for XMRV. Why? Results could be negative…. can move on to other investigations. *Some* (definitely not most) CFS folks are wrongly diagnosed.

October 30, 2009 at 4:17 pm
(6) Walk says:

Were the Ampligen trials used just for severe cases of chronic fatigue syndrome?…or were there mild to moderate cases on the medication as well?

October 31, 2009 at 4:45 pm
(7) Tom says:

Do NOT get tested by this lab. It is not authorized by the Whittemore Peterson Institute. It is not a valid or reliable test. The only test licensed at this time is by VIP dx in Reno, NV.

November 1, 2009 at 3:05 am
(8) HeadacheSlayer says:

Like most of the CFS community, I am so mixed about these findings. However, after having CFS for 14 years, I tested negative for CMV and EBV–only tested positive for EBV 2 years ago when I had mono. Hard to find a reliable test in FL for Lyme’s though (the only doc who seems to know his stuff charges $500 for the first visit.)

I am of the opinion that there is no one definitive cause for CFS, which would explain why some respond to treatments, others don’t, the range of symptoms and how sick some are (until last year I was mobile–then had gallbladder surgery and have been nearly bedridden since).

Great article, thank you.

November 1, 2009 at 2:17 pm
(9) Kelly says:

I’m truly saddened that so many have jumped on this new XMRV bandwagon. History will show that it’s not the bug, it’s the terrain.

Note that more healthy people have XMRV than people with CFS.

Guide Response: Actually, only about 3 or 4% of healthy controls have been found to have XMRV, while 66% of people with ME/CFS were positive for it in the published study.

November 3, 2009 at 9:58 pm
(10) keith says:

Actually the study showed many more people with CFS have the virus compared with controls. Review the study again.

November 5, 2009 at 11:05 am
(11) Walk says:

I have a mild case of CFS (muslce weakness/fatigue, sore throat, swollen/painful glands in neck, cough) and am still able to work. Been dealing with it for almost 2 years.
My doctor (who is an expert in CFS) tested me for the usual EBV, CMV, HHV6 but all results came back fairly normal. I still feel like I have a “bug” I can’t get rid of. I hear about most of these cases where EBV, CMV, HHV6 seem to be contributing factors in CFS patients.
My question…since I don’t have high counts of these viruses, would Ampligen or other anti-virals help in my case? Any input would be greatly appeciated, as I am still searching for relief.

November 16, 2009 at 1:33 pm
(12) Adrienne Dellwo says:

Walk,

It’s tough to say whether Ampligen or another anti-viral would help. If you have a rare or undiscovered virus, or something like XMRV, it might. If not, probably not. Has your doctor tested you for Lyme disease?

November 7, 2009 at 12:55 am
(13) Kelly says:

“Guide Response: Actually, only about 3 or 4% of healthy controls have been found to have XMRV, while 66% of people with ME/CFS were positive for it in the published study.”

Exactly my point.

Extrapolated to the population of the US alone, that means perhaps 1 to 1.5 million CFS patients have the XMRV retrovirus, while 10-12 million healthy controls do not.

Therefore it cannot be “the” cause of CFS.

Guide Response: It’s clearly not as simple as “if you have XMRV you will get ME/CFS.” Scientists have long believed there’s a genetic predisposition that contributes to ME/CFS, and there may be other factors that play into it as well. It could be that XMRV+genetic predisposition+some other 3rd thing (and maybe 4th thing and 5th thing) is necessary for XMRV to trigger ME/CFS. Keep in mind that not everyone who is HIV-positive develops AIDS, either.

November 7, 2009 at 10:47 am
(14) Rich says:

Kelly, that’s THE most negative and contorted take on statistics i’ve ever seen. The 10 -12 million healthy controls don’t have ME/CFS! “Lies, damn lies and statistics” Ben Disraeli.

November 7, 2009 at 10:07 pm
(15) Laura says:

Does any one take D-ribose for fibromyalgia?

November 8, 2009 at 9:56 pm
(16) Joe says:

Kelly has a good point. If 90% of people who test positive for XMRV are healthy, it would seem unlikely that it can cause CFS, at least not by itself. I think even the WPI researchers stated that something else must be involved.

November 9, 2009 at 12:49 am
(17) Kelly says:

Thanks Joe. I was obviously a little brain fogged when I left my last comment, and should have been more clear.

Rich, my point was that 10-12 million healthy people have XMRV, but yes, don’t have CFS. So to me, that suggests the XMRV alone, cannot be “the” cause of CFS.

I’ve been sick for over 15 years, and would LOVE it if XMRV is found to be the cause. It just doesn’t make sense that it is, or else a lot more people would be sick. It seems to me like CFS is caused by many different things, which are different for each person depending on their individual circumstances. XMRV might be a big part of CFS, but I don’t understand how it can be the sole cause.

The main reason I posted was because it seems like everyone is just automatically reacting like this is THE answer, and I”m worried that if it isn’t the answer, they might be devestated because they got their hopes up too high. Put all their eggs in one basket, you know?

I’m just trying to be more cautious and ask questions.

November 10, 2009 at 12:13 pm
(18) David says:

Kelly, though I think we all agree that it is to soon to jump to conclusions and that many viral agents have been indicated in the past that have not born out. The solution to your logic problem is not as easy as you have stated.

It has been shown that viruses affect immune functions differently in many people. As Dr. Coffin stated in his explanation to the NIH, 99.999 percent of people with HIV if left untreated will die of illnesses related AIDS but that does not mean that this retrovirus (XMRV) acts the same. It has been postulated that there may be a genetic precursor that when the XMRV virus comes in contact with individuals who have this gene, the virus is able to thrive. However the possibility that the same interaction with someone who does not have the same gene expression could be extremely different. It would then become a situation where there could be multiple gene expressions that allow the virus to thrive in different ways.

November 19, 2009 at 7:54 pm
(19) Walk says:

Hi Adrienne-
Yeah he did, and tests came back normal. He made the comment that it could still be a possibility. Saying Lyme can be a “Clinical” diagnosis. I don’t think its Lyme because I don’t really have muscle pain, just weakness.

December 7, 2009 at 2:04 am
(20) keir says:

Folks,
some of you seem to have the wrong idea about how viruses work and assume that if someone has the virus and is not sick, then the virus doesn’t cause the disease. WRONG. The vast majority of viruses cause disease in only a proportion of those who they infect. The vast majority of those who contract one of the polio viruses for instance will not get sick (for every patient with polio there are 50-100 more that got the virus but didn’t show any symptoms or had subacute symptoms that they recovered from.) It also seems likely that with ME (CFS) that contracting XMRV sets one up for issues later on when one contracts other pathogens (EBV, CMV, HHV6a, mycoplasma, chlamydia peneumonia, etc.) In other words, getting XMRV doesn’t immediately cause the illness to start but sets up the immune dysfunction that allows other pathogens to invade the heart and brain later on when these viruses are contracted. This is the same model by which HIV works; HIV is NOT found in infected tissues of dead AIDS patients whereas many other opportunistic viruses are and these are the pathogens that kill AIDS patients, not HIV itself. This is just like the everday situation with colds and flu, not everyone will get sick who gets the virus.

January 16, 2010 at 2:46 pm
(21) D B Catlin says:

As a patient of Dr. Lerner’s, I feel he is an outstanding source of information and help. He is open minded about new findings, yet has great results from his patented testing and treatment. In his testing, it is not merely the presence of the viruses that cause the the CFS hallmark symptom – post-exertional malaise – it also involves the heart and its inability to recoup from activity. There is no instant cure, we didn’t get here overnight. Be patient, vigiiant, and thank God for the good days.

February 10, 2010 at 6:30 pm
(22) mimisue2 says:

Has anyone been treated with anitvirals for CFS? What was the result?

Guide Response: A lot of people do get anti-viral treatment for this, and usually with 1 of 3 results: It really helps, it doesn’t help at all, or the side effects are unbearable. Like with every treatment, it just depends.

May 14, 2010 at 6:48 pm
(23) aidan walsh says:

here we go again,another doctor who claims to have recovered or says he had the disease! the problem with this illness is there are to many so called researchers who come across as world researchers and experts in this illness and come across as these are 3 or 4 infections as the cause! be aware of the medical doctor charlatans whose only purpose is to see how much money they can suck from your pockets in their stupid idiotic theories when they cannot get out of bed themselves!pretty soon i will put on the cfs websites the complete list of the names of these charlatans and i think from this all of you will have a different out look on these supposed research charlatans. also there are a group of people out there who also run these fancy cfs websites and claim that their vitamins/minerals will help cfs patients. the only thing this total garbage will do for you is less money in your bank accounts! these are the other charlatans who get rich off of sick people!until a true and complete replicated cause(s) of this illness is proven beyond a doubt, then and only then will anything truly give you back a normal healthy life. please be very wise and stop giving your hard earned savings to these criminal charlatans… god bless all of you and i truly hope all of you are well very soon. sincerely. aidan walsh southampton,united in the kingdom…

August 6, 2010 at 10:59 pm
(24) venus moonlight says:

I do like Dr. Lerner and I went to him- he treated me with toxic doses of IV antibitoics that became very ill and had to be admitted to the hospital for my liver enzymes went so high and every test was off- I almost needed a blood transfusion 5 times the normal amount of Dioxy IV plus zitro IV- I have been worse ever since…. he gives toxic doses of antivirals- if you just become ill he may get you better- but for anyone sick for over 5 year – or like me for 20- not sure he really cures as many as he claims- I spoke with many of his patients- many are on prohealth- he told me he did not believe in ampligen-
He does do excelllent testing. For at least I do know I have CMV, HHV6 and mycoplasma and immune problems.
XMRV makes a great deal of sense to me- for it is a retrovirus that causes immune problems- once your immune system does not work- then you are open to getting other infections- just like HIV!!!
Who ever wrote about the stats, you need to take a class- as someone who is a scientists by trade- that is not how you do stats!!! the healthy controls were low- and very normal to have any virus in healthy controls, if there were none, I may not trust the data- but the American Cancer Institute, Cleveland Clinic are serious scientists- along with WPI who on their own patients who they knew had CFS- their test showed I believe 99% of CFS patients had XMRV!!!! XMRV is in the blood supply- other countries have banned the blood of patients with CFS- also in Japan- they call people with CFS- low natural killer cell disease- meaning it is an immune system problem. If your immune system does not work- you are going to get many pathogens- that is really the heart of XMRV- this is not a normal virus but a retrovirus that get in your DNA- it never goes away like EBV,CMV,etc… again- like HIV not everyone get Aids… Ampligen works for many patients and it should be approved even if it only helps 20% of patients- not all cancer treatments work for people with cancer- that is true for just about every med our there. It is sad it was not approved and the CDC and FDA are just letting people rot away- dieing if slow torture.

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