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» LymeNet Flash » Questions and Discussion » Medical Questions » Stanford CFS Study looks good....

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Author Topic: Stanford CFS Study looks good....
panicbegone
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The information about the first study is here:

http://www.eurekale rt.org/pub_ releases/ 2007-01/sumc- ntf010807. php

And the contact information if you are interested in participating in the
new study is here:

http://www.vicd. info/clinicaltri al.html

It's only for people who have high levels of EBV and HHV antibodies.


New therapy for chronic fatigue syndrome to be tested at Stanford
STANFORD, Calif. -- A preliminary study suggests there may be hope in the offing for some sufferers of chronic fatigue syndrome with a new therapy being tested by researchers at the Stanford University School of Medicine.

Jos Montoya, MD, associate professor of medicine (infectious diseases), and postdoctoral scholar Andreas Kogelnik, MD, PhD, have used the drug valganciclovir - an antiviral often used in treating diseases caused by human herpes viruses - to treat a small number of CFS patients.

The researchers said they treated 25 patients during the last three years, 21 of whom responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months.

The first patient has now been off the drug for almost three years and has had no relapses.

A paper describing the first dozen patients Montoya and Kogelnik treated with the drug was published in the December issue of Journal of Clinical Virology.

"This study is small and preliminary, but potentially very important," said Anthony Komaroff, MD, professor of medicine at Harvard Medical School, who was not involved in the study.

"If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness."

Montoya has received a $1.3 million grant from Roche Pharmaceutical, which manufactures the drug under the brand name Valcyte, to conduct a randomized, placebo-controlled, double-blind study set to begin this quarter at Stanford.

The study will assess the effectiveness of the drug in treating a subset of CFS patients.

Montoya is speaking about his efforts at the biannual meeting of the International Association for Chronic Fatigue Syndrome in Fort Lauderdale on Jan. 11 and 12.

Chronic fatigue syndrome has baffled doctors and researchers for decades, because aside from debilitating fatigue, it lacks consistent symptoms.

Although many genetic, infectious, psychiatric and environmental factors have been proposed as possible causes, none has been nailed down. It was often derided as "yuppie flu," since it seemed to occur frequently in young professionals, though the Centers for Disease Control and Prevention says it's most common in the middle-aged.

But to those suffering from it, CFS is all too real and its effects are devastating, reducing once-vigorous individuals to the ranks of the bedridden, with an all-encompassing, painful and sleep-depriving fatigue.

More than 1 million Americans suffer from the disorder, according to the CDC. The disease often begins with what appears to be routine flulike symptoms, but then fails to subside completely - resulting in chronic, waxing and waning debilitation for years.

Valganciclovir is normally used against diseases caused by viruses in the herpes family, including cytomegalovirus, Epstein-Barr virus and human herpes virus-6.

These diseases usually affect patients whose immune systems are severely weakened, such as transplant and cancer patients.

Montoya, who had used the drug in treating such patients for years, decided to try using it on a CFS patient who came to him in early 2004 with extremely high levels of antibodies for three of the herpes family viruses in her blood.

At the time, she had been suffering from CFS for five years.

When a virus infects someone, the levels of antibodies cranked out by the immune system in response typically increase until the virus is overcome, then slowly diminish over time.

But Montoya's patient had persistently high antibodies for the three viruses.

In addition, the lymph nodes in her neck were significantly enlarged, some up to eight times their normal size, suggesting her immune system was fighting some kind of infection, even though a comprehensive evaluation had failed to point to any infectious cause.

Concerned about the unusual elevations in antibody levels as well as the swelling of her lymph nodes, Montoya decided to prescribe valganciclovir.

"I thought by giving an antiviral that was effective against herpes viruses for a relatively long period of time, perhaps we could impact somehow the inflammation that she had in her lymph nodes," said Montoya.

Within four weeks, the patient's lymph nodes began shrinking. Six weeks later she phoned Montoya from her home in South America, describing how she was now exercising, bicycling and going back to work at the company she ran before her illness.

"We were really shocked by this," recalled Montoya.

Of the two dozen patients Montoya and Kogelnik have since treated, the 20 that responded all had developed CFS after an initial flulike illness, while the non-responders had suffered no initial flu.

Some of the patients take the drug for more than six months, such as Michael Manson, whose battle with CFS has lasted more than 18 years.

The former triathlete was stricken with a viral infection a year after his marriage.

After trying unsuccessfully to overcome what he thought were lingering effects of the flu, he had no choice but to drastically curtail all his activities and eventually stop working.

During his longest period of extreme fatigue, 13 1/2 weeks, Manson said, "My wife literally thought I was passing away.

I could hear the emotion in her voice as she tried to wake me, but I couldn't wake up to console her. That was just maddening."

Now in his seventh month of treatment, Manson is able to go backpacking with his children with no ill after-effects. Prior to starting the treatment, Manson's three children, ages 9 to 14, had never seen him healthy.

Montoya and Kogelnik emphasized that even if their new clinical trial validates the use of valganciclovir in treating some CFS patients, the drug may not be effective in all cases.

In fact, the trial will assess the effectiveness of the medication among a specific subset of CFS patients; namely, those who have viral-induced dysfunction of the central nervous system.

"This could be a solution for a subset of patients, but that subset could be quite large," said Kristin Loomis, executive director of the HHV-6 Foundation, which has helped fund a significant portion of the preparatory work for the clinical trial.

"These viruses have been suspected in CFS for decades, but researchers couldn't prove it because they are so difficult to detect in the blood.
If Montoya's results are confirmed, he will have made a real breakthrough."

"What is desperately needed is the completion of the randomized, double-blind, placebo-controlled clinical trial that we are about to embark on," Montoya said.

###
BROADCAST MEDIA CONTACT: M.A. Malone at (650) 723-6912 ([email protected])

People interested in participating in the clinical trial must live in the San Francisco Bay Area. More information about the clinical trial is available online at http://www.vicd.info/clinicaltrial.html.

Stanford University Medical Center integrates research, medical education and patient care at its three institutions - Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children's Hospital at Stanford. For more information, please visit the Web site of the medical center's Office of Communication & Public Affairs at http://mednews.stanford.edu.

[ 15. January 2007, 07:14 PM: Message edited by: panicbegone ]

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jasonsmith
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That's cool. I have high antibodies to EBV, CMV, and the HHV-6.

I hope that works. Though, when I see Dr. C, maybe I can convince him to give me some of that antiviral medication.

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panicbegone
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that would be great if you could.
If I may ask though....
I have no clue on myhhv6 , but i took the ebv test and doc just said... ive been infected in the past, but do not have an active infection. I got no score from him.
Can I have a PAST infection but still have high titers?

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Valcyte is pretty harsh, it was found to be carcinogenic and mutagenic in animal studies and can cause impairment of fertility, leukopenia, neutropenia, anemia etc., so your blood levels would need to be monitored often.

Panic - One doctor I saw said there is no true reliable test for active HHV-6 infection. Sometimes it is positive in PCR tests though.

However, high titers to past infection can indicate possible active infection. The HHV-6 foundation is working on a reliable test.

One doctor I saw works with another physician who has studied HHV-6 and has had marginal results with Valcyte, nowhere near the success this study shows.

However, for those like me who don't respond to any Lyme/coinfection therapy it may be worth a shot if you can find a physician to Rx it to you AND monitor you closely while on it.

It is also extremely expensive, about $35 a pill.

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panicbegone
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Yikes.
Hm....thanks for all the info.
Im looking for a new miracle i guess.
Seems nothing is easy, all the treatment options, including lyme antibiotics have risks, cause side effects, may or may not make u well...etc.
Its getting tiring.

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Blackstone
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My LLMD decided to give me a similar antiviral, Famcyclovir, after a bit of prodding.. I actually feel more tired since I've been on it, but it has only been a month or so. Would I have seen improvement by now or should I stay longer? Also, I wonder how closely related this is to the drug in the article. Hmm...
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panicbegone
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Great questions. You should ask your doc about the similarities between the drug you are taking and the one in the study.
I read up and believe that people with CFS in the initial study had started feeling a bit worse around week 3 or 4 of their 6 mo treatment.

They noted that may be to the dying of whatever is going on...i guess like a herx. Sounds right.

If the drug is similar you may want to try and stay on a few more months.

Do you know what triggered your md to give you an antiviral in the first place? My docs dont give me $hi#.

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typhoon_sheri
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The doc I am seeing here in MI is at a convention in FL (Fort Lauderdale) this weekend for his findings on Valcyte and CFS, in regards to EBV and other viruses. Dr Monotoya that is mentioned in the article is also presenting there.

Blackstone your med may make you tired for a while.

When I stared Valtrex my doc warned me I may be even more tired for the next few weeks. I am now on Valcyte and Valtrex.

Someone I know has been on Valcyte for CMV and has seen marked improvement in the past 6 weeks.
The first few weeks she didn't feel any better and broke out in several rashes. She (and myself) are also being treated for Lyme.

I will be interested to see if her titres go down, after her 6 weeks of treatment.

I'll keep you informed. I just started the Valcyte this week.

[ 12. January 2007, 08:35 PM: Message edited by: typhoon_sheri ]

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panicbegone
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yes..pls keep us posted on how it is helping you too.
thx

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typhoon_sheri
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Will do !!!!
The doc I see states that this looks very promising !!!!!!!!!!!!

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Sheri,

Do you see Dr. "L" by any chance? Valcyte is approved for HHV5 (CMV) Retinitis in AIDS patients so it makes sense it is helping if you have an active CMV infection.

Is your insurance covering you and/or your friend? I know Roche is good with the PAP program. It used to be based on income, not assets, so if that's still the case and I can convince one of my docs to Rx it I may give it a shot since I have high titers to HHV6 and EBV. Thanks,

Tim

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typhoon_sheri
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Yes I do see Dr. L.,Semiretired

For my friend and myself the ins covers most of the Valcyte. It is very very expensive.

It looks like the Valcyte may help many viruses.
Let's keep good thougts and hope this works !!

My friend has CMV, but he is treating me for EBV and HhV6.......

Good Luck to you !!!

I see you are from CA, are you familiar with Dr. L.????????

[ 14. January 2007, 07:59 AM: Message edited by: typhoon_sheri ]

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wrotek
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I have Borrelia and HHV diagnosis blood high titers, dunno if it is HHV-6 or other subspiecies .
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typhoon_sheri
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bumping this up for semi-retired.....just wanted to know if you went to Dr. L and if he treated you for virals ???????????????????????
would love to hear of your experience.

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bettyg
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panic, i'd love to read the 1st post since it's about active HHV-6; and i was informed i have it with my total body lab testings done 4-20-06.
[group hug] [kiss] [group hug]

MD LABS, NJ did this testing; that's how i found out in my 4-20-06 posting of all labs done and in my newbie links that i had the following:

3 types of epstein barr virus,
active HHV 6;
simplex herpes;

no co-infections and other stuff i can't remember without going to that post to refresh my neuro lyme memory! [dizzy]


panic, if you printed out or filed away my newbie links/files ... look for my 4-20-06 llmd visit to MINN. i typed detailed descriptions of every LAB DONE ON ME.

if there's numbers on the below post you are questioning, go to my post link ok!! [Wink]

[ 25. January 2007, 01:24 AM: Message edited by: bettyg ]

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panicbegone
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I hope the edit helps you Betty...i know what you mean about the paragraph seperations. Hope I didnt screw up the flow of the message though.

Anybody know how i can get my primary kaiser doc to do an hhv6 test on me? I wanna know if mine are high! Also my EBV results are negative BUT have a PAST INFECTION.

Should there be numbers that are available in a EBV test?

Id really love to try this drug but dont wanna stop my lyme treatment and I dont even know if id qualify anyways.

Id be nice if i had a HELPFUL doctor who would just prescribe it for me. Im so dizzy and off balance and exhausted and nauseas etc etc...i dont get how they can say...oh its just CFS...get use to it! I can barely shower sometimes!

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Lymetoo
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Panic....Sorry I don't remember.....but do you have an LLMD? Just wondering since you said your dr doesn't give you $%$#.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Panic,

Kaiser! Yikes! How do you know you have Lyme, e.g. testing? Which lab(s) did they use and did they test for the coinfections? If your doctor is Kaiser he/she will probably underprescribe abx.

I also live in CA, near LA and can refer you to a couple doctors if you're in the area, or there are more LLMD's up north.

I guess your problem is you'd be paying out of pocket which may be a problem financially. You can send me a private message if you wish.

Dr. Montoya in the article you referenced prefers Focus Labs to test for HHV6. Focus was bought out by Quest so you have to indicate on the form you want the samples to go to Focus.

I don't even know if that's possible cuz maybe Kaiser has their own lab for this. The least you can do is bring the article in for your doctor to review and DEMAND to be tested. If he/she refuses try to find another in network doc or pay for it yourself.

Here is the website for the specific test you want from Focus: http://www.focustechnologies.com/focus/1-reference_laboratory/search_frame.asp?f=8 You would want to order test 40540 which is down the page a bit.

I know it's a new year and insurance is set but do you have other options, like a plan where you can go out of network? Maybe it would help if you listed what meds you're on now.

Sheri - I sent you a PM, hopefully you received it.

Tim

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grace1
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For those getting tested, please read this page about how to get tested.

http://www.vicd.info/clinicaltrial.html

Focus Diagnostics gives the results as a titer value, which is what you want, especially if you are thinking about trying to get into the clinical trial. They are still recruiting study candidates.

Anyone who is trying the valganciclovir, or other antiviral, or knows anyone who is, please keep us posted! It would help so much. Thank you!

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grace1
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quote:
Originally posted by typhoon_sheri:
Will do !!!!
The doc I see states that this looks very promising !!!!!!!!!!!!

Yes, this looks very promising for people who fit the profile with both EBV and HHV-6 high titers. Who knows, maybe some of "chronic Lyme" is actually this...

which would be very interesting if some Lyme patients do go get treated by Dr. Montoya, especially if you also have "proof" of having Lyme disease either by test or rash. If he sees more than one patient with this profile, he might actually think to make the connection with Lyme disease.

More info... here is an abstract of the paper published in the Journal of Clinical Virology in December. It gives an idea of what values they mean by high titers.

http://www.hhv-6foundation.org/pdf/MontoyaAbstract.pdf

Does anybody have access to the full paper and can share it?

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Myco
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This is old news folks!

Didn't help people with CFS long term. Once you get off it you relapse.

They did similar trials back in 1980's with the first CFS patients.

Low dose minocin/doxy or zith work much better.

The viruses are just co-infections and clear once the bacterial pathogens are dealt with and the immune system works properly.

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grace1
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actually it's not old news, it's new news. the research hasn't even been completed yet.... the first patient was only treated 3 years ago, so that's the length of the data. no relapses yet.
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Cate
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yeah, i gotta agree with Grace, this isn't a repeat of earlier treatments.

and besides, even if the viral is a co-infection (which i don't necessarily agree with, but let's just say for sake of argument it is), getting one's viral levels down would relieve a bit of the burden on the immune system, improve symptoms, and perhaps let you go after other underlying causes.

for those of us who test really high in the viral department, this could be very beneficial.

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bettyg
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panic, big favor to ask! in your 1st post, could you edit/PENCIL ICON it, and

block copy the part it's for SAN FRANCISCO FOLKS ONLY! and paste to the very 1st line of the body text ? i couldn't remember reading this, and you got my hopes up high that i wanted to participate in this until SAN FRANCISCO PATIENTS ONLY.

thank you panic!

panic, i edited/added more to my post up further!


MD LABS, NJ did this testing; that's how i found out in my 4-20-06 posting of all labs done and in my newbie links that i had the following:

3 types of epstein barr virus,
active HHV 6;
simplex herpes;

no co-infections and other stuff i can't remember without going to that post to refresh my neuro lyme memory!


panic, if you printed out or filed away my newbie links/files ... look for my 4-20-06 llmd visit to MINN. i typed detailed descriptions of every LAB DONE ON ME.

if there's numbers on the below post you are questioning, go to my post link ok!!

[ 25. January 2007, 01:24 AM: Message edited by: bettyg ]


MYCO, since you're new here, when you make comments like you posted, please bring medical evidence LINKS here so we can read them; thanks! [Big Grin]

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burnbitter
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quote:
Originally posted by typhoon_sheri:



Someone I know has been on Valcyte for CMV and has seen marked improvement in the past 6 weeks.
The first few weeks she didn't feel any better and broke out in several rashes. She (and myself) are also being treated for Lyme.

Interesting... what kind of rashes?
I've been on valcyte for 6 weeks and suddenly saw improvement about four days ago. About a week and a half ago I had a round rash that at first I thought was ringworm but the dermatologist says it isn't. Since last week I've had an increasing number of small rashes. Judging by pictures on the internet it looks like it might be a viral related rash, with the "herald" rash followed by other rashes on the trunk. But I think that's odd since I feel better not worse.

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Cate
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hi burnbitter,

did you see improvement at 6 weeks after a decline earlier? or have you felt the same the whole six weeks? any herxing and if so what symptoms?

thanks for sharing. many of us are very interested in valcyte.

best,
cate

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grace1
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up for updates. pardon the semi-duplicate with the other HHV-6 thread.
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grace1
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hi burnbitter,

has your improvement been sustained or got even better?

updates from others??

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grace1
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apparently the clinical trial only started a few weeks ago, i heard.

darn, i thought it had started in january, in which case, the results would pretty much be known by now. have to wait another half year.

http://clinicaltrials.gov/ct/show/NCT00478465;jsessionid=E2B4EBA62BF789DF719AFE312A59CC23?order=3


once again, asking for people who were trying valcyte/valganciclovir to share their results. thanks.

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CD57
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I was accepted into this study and decided to decline to pursue Lyme treatment. They would not allow any other meds while on the trial.

For what it's worth, Dr M at Stanford said "there's no way you have Lyme" even though I had all my Igenex records (they are HIGHLY SKEPTICAL of Igenex at Stanford). I DID have very high levels of EBV and HHV6, and have been on Valtrex for 4 months. I noticed immediate improvement on this drug, although it doesn't technically hit HHV6. My LLMD said that she was actually taught this little trick by Montoya himself 25 years ago......so we're retesting my titers in a couple of weeks to see where they are.

I think that these viruses are re-activated by Lyme, just my .02.

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timaca
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My understanding is that the Stanford study which was published in the December 2006 supplement Journal of Clinical Virology was a recently completed study that was not double blind, placebo controlled.

See www.hhv-6foundation.org for information on that study, and info on HHV-6 infection in general.

Dr. Montoya at Stanford has recently started a double blind placebo controlled study to see if he can demonstrate that antiviral drugs do indeed help people with high levels of HHV-6 and EBV.

After learning about the Stanford research, I was tested for the viruses at Focus lab in CA. My HHV-6 IgG is 1:320, which is considered high. I will get it retested to make sure this wasn't a fluke. While my EBV is also above normal, it is not enough to think there might be active infection of that going on.

If my HHV-6 is high again, I will consider starting Valcyte.

I think I do have lyme. I think the lyme may have activated HHV-6 in me.

I honestly think that the viruses can be one of the problems in us lymies.....as much as a problem as babesia, bartonella, etc.

The viruses definitely need to be screened for. I did send Columbia an e-mail to that effect....also Dr. Wormser. My LLMD is aware of this too.

This is important stuff and should not be overlooked.

Timaca

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grace1
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^^ if those were his words, that's too bad. there's no way to say that there's no way about anything. even if the chances were 1 in a billion, that is still not no way.

i wonder what his response would be if you had lab results from a reputable lab. or documentation of a rash or tick bite. or at least a recollection.

i'm not surprised that they're skeptical about igenex.

by the way, dr. m is not that old. [Smile] 25 yrs ago he was just starting college.

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bettyg
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i have hhv 6, ebv, and not sure about rest; up to remind me to look for test results and then read this ENTIRE thread...

thanks timaca for info.. [kiss] [group hug]

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Vanilla
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I think Kaiser in Novato CA has one doctor that is pretty well informed and into alternative medicine or at least he was before he joined Kaiser. He might be a homeopathest I can not remember or his name but perhaps one of their receptionists would know.
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CD57
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Just another note here: Dr Montoya and the docs that are running the program are very nice, but firmly discount Lyme and the co-infections as a possible issue. To their credit, they DID take both sets of my Igenex test results into a room to discuss amongst themselves for about 45 minutes; when they came back they said "we just don't believe you have Lyme". When I said would you if my results came from another lab, they wouldn't answer this question.

Another thing: they believe that they have stumbled onto a subset of "chronic fatigue" patients who actually have an immune deficiency caused by the viruses themselves. This would/could certainly complicate the picture for us Lymies. They were very clear, though, that not all "CFS" patients fit this bill.

I have had very good results with 3000 mg/day for 4 months of Valtrex; my last day is today! We're retesting my titers for EBV/HHV6 (both of which were 10x normal) in 2 weeks. My LLMD said she may prescribe a "quick pulse of Valcyte" if she's not pleased with what she sees. I am trying to stay away from Valcyte because it's incredibly expensive....$4000/bottle according to my pharmacist....he looked SHOCKED when he brought out my bottle.

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timaca
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CD 57~ I, too, have heard that Dr. Montoya is very kind and compassionate. At least he took into account your Igenex tests....and your symptoms. I would love to have the opportunity to sit down with him and discuss my case. I think he'd have a hard time dismissing my clinical lyme symptoms. Sadly, he's not taking appts.

Valtrex does not treat HHV-6. Valcyte is needed for that. So, if your titres for HHV-6 haven't dimished, or if you aren't well, you might need some Valcyte.

Yes, it is expensive, but a friend of mine is starting her Valcyte today, and her insurance company is covering most of the cost. It is costing her just $46 per month!

My HHV-6 titre is high (1:320) at Focus labs. My EBV is somewhat high, but not excessively. I will be retested shortly, to make sure the HHV-6 is still high, for I don't want to take Valcyte if it isn't warrented.

My theory is that in my case a steroid shot to my knee activated lyme in my body. The lyme subsequently depressed the immune system in me allowing the HHV-6 to grow.

My friend does have lyme too. She is high for HHV-6 and EBV. So it looks like viruses are part of her problem too. That is why she is starting the Valcyte.

I honestly think viruses may be a trouble spot for us lymies, and should be evaluated in everyone. Trouble is, not that many doctors are familiar with chronic viral infections.

I was at Cleveland Clinic last week, seeing an ID doctor with my husband (for him, not for me). She became aware of my story. I asked her if there was someone at CC that could evaluate me for chronic viral infections and the answer was "no." My local PCP is learning as we go. I don't know if she will go so far as to prescribe the Valcyte though.

Timaca

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grace1
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CD57, that's very interesting other info from your appointment. The thing is, we can't expect them to make such a huge jump from their previous/current beliefs about Lyme disease, to suddenly accepting everything (IGenex, etc.) Have to take baby steps. Like teaching a baby to read. You can't just throw an entire encyclopedia at them one day. You start with the alphabet, and when they get that, you teach them to read 2-letter words, then 3-letter words, etc.

So, if the CFS subset researchers are to consider Lyme disease, we first have to show them patients who test positive by standard labs and have documented tick bite and photographs of rash, and detailed medical history along the way (no symptoms before tick bite, and symptoms start immediately after tick bite, etc). If these without a doubt Lyme patients also test positive for the elevated herpes virus titers and show CFS symptoms, then maybe it would tickle something in their minds. Which could lead them to consider a tiny step in that direction.

If there are Lyme patients in the study, the possibilities are... they get better just like the CFS people, or they don't get better but the CFS people do. In the first case, yay, Lyme patients find another perhaps more effective way to treat their illness. In the second case, the researchers have to think about why the CFS people got better but the people who say they have Lyme disease don't.

In any case, I hope the clinical trial shows results. If so, it will help Lyme patients eventually, since it will show that chronic microbial infections can cause these symptoms, and that testing by IgM doesn't work.

Oh yeah, and although he doesn't think you have Lyme disease, at least he believes people with CFS symptoms have a real illness, as most other doctors will think it's psychological. He just thinks the microbe is a different one.

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