Dr. Holtorf Queries ME/CFS Community: How are Antiretroviral Treatments Working?

Cort

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Dr. Holtorf is interested in hearing how antiretroviral treatments are working for patients.

Dr. Holtorf here. I was hoping to get some info from you and members of the forum.

We are starting to do more testing and treatment for XMRV on our sicker CFS patients (those that have failed other antiviral therapies such as Valcyte and Lyme Rx). As would be expected, most of our positive XMRV positive patients are also positive for chronic active EBV and HHV6, which would be expected due to immune suppression, but also for Lyme so more clouding of which one is the primary vs. secondary opportunistic infection as well as specificity and sensitivity of the tests.

While I am not convinced that XMRV is the cause in most patients, I of course, have to keep an open mind and am always willing to change my mind if supporting data comes out. At this point with the evidence, I think it makes sense to give a trial of antiXMRV therapy for those who have not responded to other therapies and have tested positive. There is really no data on effectiveness of treatment, especially considering all the potential options, so the data is anecdotal at this point so we need to work with that (all therapies are an evaluation of risk/benefit ratio so patient selection and a mutual decision with a knowledgeable patient is the key).

Thus, I am interested in hearing about patients who have undergone or undergoing treatment with antiretroviral therapiesgood or bad (an initial decline may not be all bad). Thus, I am hoping to hear from anyone that has been or is currently being treated with the antiretroviralsIll also post as we get some feel for the effectiveness of treatment. Cort, please also feel free to email me or call to discuss.

Thanks and keep up the great work.

Kent Holtorf, MD
 
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On a quick Google search I found "Kent Holtorf, M.D. was the founding Medical Director for the Fibromyalgia and Fatigue Centers. . . "

But now he seems to run the Holtorf Medical Group in CA:
www.holtorfmed.com

Peggy
 

bakercape

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Seems to me

that all Dr. Holtorf like Dr. Teitalmaum really wants is it to be that immune dysfunction causes people to collect XMRV.
Why is this there first assumption. Why not assume like HIV that a retrovirus causes the immune dysfunction which then causes the collection or non suppression of other pathogens.
Don't they realize a retrovirus is different then a Herpes virus like EBV that most of us carry in our system all whole life.
I believe Holtorf like Teitalbaum is having a hard time wrapping his head around the concept that maybe CFS isn't the heterogeneous immune dysfuction illness that they have expoused in there teachings and treatments.
They have closed there minds to the idea of a single pathogen causing cfs in many or most cases and seem to be in a bit of denial and actually out to disprove the idea because it goes against there previously conceived notions and theories.
 

gu3vara

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Obviously, that would kill their businesses if XMRV was the sole cause of CFS, so don't expect them to say anything else. How could they sell their overpriced supplements and treatments otherwise?

A retrovirus can be a cause of immune dysfunction, we know HIV does it, so why not this one...
 
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I'm new to all this so I hope I'm in the right place Cort.. I wanted to tell Dr Kent Holtorf that I had two lyme bands come back positive on Western Blot 4 times..The same bands.. After much research, my Infecious Disease Doctor and my Immunologist believe that having
Epstein Barr virus CAN CAUSE A FALSE POSITIVE FOR LYME. I wish I had the place that I found out this info.. All one has to do is type in Lyme false positive / Epstein Barr.. Makes alot of sense to me.. I diffinently have ME/CFIDS.. Just wanted him to exsplore this for his patients. I hope this helps.. Nila
 

Cort

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that all Dr. Holtorf like Dr. Teitalmaum really wants is it to be that immune dysfunction causes people to collect XMRV.
Why is this there first assumption. Why not assume like HIV that a retrovirus causes the immune dysfunction which then causes the collection or non suppression of other pathogens.
Don't they realize a retrovirus is different then a Herpes virus like EBV that most of us carry in our system all whole life.
I believe Holtorf like Teitalbaum is having a hard time wrapping his head around the concept that maybe CFS isn't the heterogeneous immune dysfuction illness that they have expoused in there teachings and treatments.
They have closed there minds to the idea of a single pathogen causing cfs in many or most cases and seem to be in a bit of denial and actually out to disprove the idea because it goes against there previously conceived notions and theories.
I don't know. Dr. Peterson suggested the same thing could be happening - that an immune dysfunction allows the pathogens in and then they grow. Hopefully we'll find out at some point.
 

*GG*

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My doctor doesn't believe that a Virus is the cause for CFS, he has been on the front line I think for decades now also. I hope to be tested soon, but until then. Who knows.

I tried Valcyte for 2 months and did not notice any difference, but perhaps that was not long enough?! The doctor I was seeing at that time had not even heard of it, and I made most suggestions for my treatments. I believe he was a disciple of Dr. T.
 

Cort

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It could be time and it could be dosing as well. I just talked to someone who was taking Valtrex and then saw Dr. Lerner and over time he raised her dose considerably and she did much better. The medical profession is still learning how to use these drugs in CFS. Dr. Lerner seems to have a good handle on dosing. Dr. Montoya apparently thinks dosing is very important as well - its something he's still learning about.
 
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immune deficiency hypothesis

For me, the immune deficiency hypothesis is a very valid idea for why XMRV is present. Particularly since XMRV is being reported in other illnesses where the immune system is not functioning properly. At this point, we simply dont know. That doesnt mean future evidence wont prove XMRV to be the culprit but just being a retrovirus doesn't really give any more potential than if it were a pathogen from any other family. Just look at the animal world for examples.

I am trying to temper my excitement because researchers have discovered so many new pathogens in CFS patients over the years and they all fizzle out. Not to mention the other 3 possible retroviruses of differing nature that have been "discovered" in CFS patients. (JHK, Holmes, Defriates). Including XMRV, that makes 4 potential retroviruses discovered in CFS.

That being said, I feel hope that treating this virus will give people back there lives and this is the first time I got my check book out for years to contribute to CFS research (WPI).
 

JT1024

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From what I've seen, anti-viral agents for HHV-6, EBV, and CMV have been given to CFS patients (Valcyte, Valtrex, and Acyclovir) for co-infections. I'm aware of one of Dr. Holtorf's patients who is XMRV+ who has been on acyclovir. She's not on anything for the XMRV.

From the CFSCentral website: "At present, only three FDA-approved HIV drugs have been shown to have efficacy against XMRV in vitro (in the test tube): AZT, tenofovir and raltegravir."

Interesting how Jamie Deckoff-Jones, an ER physician decided not to wait to take retrovirals. Perhaps Dr. Holtorf would like to read her blog? Here is the link: http://treatingxmrv.blogspot.com/

A little about Dr. Deckoff-Jones from her website: "My daughter and I are culture positive for XMRV. We have started specific antiretroviral treatment. My intention is to share our journey with the medicine and science in context as it happens."

In Dr. Deckoff-Jones' last post, her last line spoke volumes: "Sure doesn't seem like we can count on the CDC to help us."

ETA: All the supplements in the world aren't going to get rid of a retrovirus!
 

omerbasket

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I don't know. Dr. Peterson suggested the same thing could be happening - that an immune dysfunction allows the pathogens in and then they grow. Hopefully we'll find out at some point.
There is a difference between "can happen" and "it is the case".
 

SOC

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My doctor doesn't believe that a Virus is the cause for CFS, he has been on the front line I think for decades now also. I hope to be tested soon, but until then. Who knows.

I tried Valcyte for 2 months and did not notice any difference, but perhaps that was not long enough?! The doctor I was seeing at that time had not even heard of it, and I made most suggestions for my treatments. I believe he was a disciple of Dr. T.
We were told we might not see any improvement for the first 6 months. By that logic, 2 months is not nearly enough. It's my impression that you need to try 12-18 months to get real improvement.
 
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Go Easy

I have had no contact with Dr. Holtorf personally, but it was actually his algorithm that was used in the FFC clinics for the first couple years and he was the original medical director who developed the clinical program before Teitelbaum took over the position.

In my opinion both doctors, and a number of others, risked a lot trying to actually help their patients when few docs were willing to give antibiotics, antivirals, hormones, extensive medical testing or even look at CFS or Fibro as a medical condition. Some folks may have no idea how thos early docs risked censure and potential investigation by medical boards, to this day, to treat "outside the box." Those docs, even Dr. T with his incessant SHINE marketing now that he's the face of FFC, have my appreciation. It was treatment at FFC that finally gave me a leg up and diagnosed my Chlamydia pneumoniae infection, even of the or protocol for treating it was insufficient. I'd not even be functional enough to write this post if this had not been so- I'd be dead.

That said, it doesn't surprise me that docs who have painstakingly developed protocols that have helped a portion of sufferers and have built their careers on that are cautious about XMRV. They have a lot invested and they have also seen too many things hold out hope, just like their patients.

That Holtorf is even considering using antiretrovirals with his sickest patients, when the science is still in question (it is even if we wish to believe that this is the one), is laudable and speaks of real commitment to patient welfare rather than medical convention. So I'd support any docs willing to extend themselves by offering whatever info and links to sources we can.
 

bakercape

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In the What about ME US trailer

I don't know. Dr. Peterson suggested the same thing could be happening - that an immune dysfunction allows the pathogens in and then they grow. Hopefully we'll find out at some point.
Dr Peterson is on film comparing XMRV to the HIV situation of the past. He says, "that the lesson should not be forgotten. That your healthy people were coming in and dying and they had no idea why". Then bingo HIV was discovered.
He was being interiewed about the XMRV discovery. So at some point he was thinking otherwise.
 

Daffodil

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i have been on RAL+AZT+TNF for 4 months and have responded partially so far. i feel perhaps a 30% decrease in inflammation but still need all-day rest. i was severely ill with CFS and contracted it almost 18 yrs ago; my brain was affected to an extreme degree. my RNase L activity, measured at 2 months into the ARV regimen, was 125 and was once almost 2000. my elastase normalized and it was also through the roof before. interestingly, the valcyte+valtrex regimen i was on before (under dr. lerner) did not lower my elastase (i think it increased it, in fact) but did lower my overall RNase L activity to almost normal levels. they no longer test LMW RNase L, saying elastase gives you the same info. interestingly, i have so far tested negative for XMRV. a more accurate serology test is pending.
sue
 
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hi..i am a dcotor, sick with chronic fatigue for 17 years, and have had good success with valtrex, and also spironolactone (androgen blocker) .