JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
I KNOW THIS HAS BEEN ADDRESSED, BUT WE NEED ALL THE INFO WE CAN GET!!!
Antiviral may ease chronic fatigue symptoms Small study suggests drug might treat difficult-to-diagnose condition
updated 10:38 a.m. ET, Mon., Jan. 15, 2007 BOSTON - Shortly after hiking the Grand Canyon with his wife in 1988, Michael Manson, the co-founder of PetSmart Inc., came down with what felt like the flu. So did business partner Jim Dougherty. The illness changed their lives.
In both men, the flu-like symptoms triggered a more debilitating condition known as chronic fatigue syndrome for which there is no known cure, and no known cause. Its symptoms range from fatigue and vertigo to nausea, pain and cognitive confusion.
Many in the medical community don't believe chronic fatigue syndrome is a real disease. There is no diagnostic test for it. Patients are often referred to psychiatrists on the assumption that their symptoms are psychosomatic.
But for those who suffer its symptoms, including Manson and Dougherty, a former marine who served twice in Vietnam, the condition is all too devastatingly real.
``We've been fighting this for 18 years, and we've tried every possible treatment, from wing of bat to eye of newt,'' said Manson, who has spent months at a time too weak to walk more than a block or even get out of bed.
Nothing worked -- until now.
Last June, Manson went to see Dr. Jose Montoya, associate professor of medicine at Stanford University and a specialist in infectious diseases who believes the disorder may be caused -- at least in some cases, by one or more viruses.
Montoya had presented anecdotal data earlier that year at a conference in Barcelona, Spain, which suggested an antiviral drug called Valcyte, made by Swiss drugmaker Roche Holding AG , could be helpful in treating certain CFS patients.
Montoya now has data on 25 CFS patients, nearly all of whom had high levels in their blood plasma of antibodies to the human herpes virus 6 (HHV-6) and the Epstein-Barr virus.
The data -- presented recently at a conference in Fort Lauderdale, Florida -- were remarkably consistent. Nearly every patient responded to the drug, Montoya said, and most of the responses were dramatic.
``Scientists have suspected viruses for years but have never been able to prove it,'' said Kristin Loomis, executive director of the HHV-6 Foundation, a non-profit group which funds research into HHV-6.
Last year Manson began a six-month course of Valcyte, which is approved to treat transplant patients to prevent viral infection. At first he felt worse. Then, after a few weeks, he began to improve. He started walking, every day a little more.
Now, nearly seven months later, he is walking two or three miles a day and working out with light weights. And he is working on new business ideas.
``Not only is my physical ability returning but my cognitive ability has come back too,'' Manson said.
Even so, Montoya stresses that the study is extremely small and the results may not be replicated in bigger trials, the first of which he hopes to start within the next few months.
``In a field that has been so stigmatized, and so full of false hopes, I think the patients and the field deserve the best kind of trial, keeping an open mind to the possibility that it won't work,'' he said.
Roche has agreed to put up $1.5 million to fund the next, 30-patient study
``Whether we put serious money behind this will all depend on the outcome of this next study,'' said Nigel Pluck, Roche's clinical science leader for Valcyte. ``This is a somewhat contentious area for the medical profession in that CFS is not a disease that you can test for. It's a diagnosis that you come to by excluding everything else.''
Even if results of further studies are positive they will probably apply only to those patients with active HHV-6 and Epstein-Barr viruses, as indirectly measured by the number of antibodies produced to fight them, Montoya said.
But for those who appear to fit the profile, like Manson, the benefits could be enormous.
``We are very excited and holding our breath,'' he said.
Copyright 2007 Reuters.
Let's not forget that Epstein-Barr and other (HHV-6, etc.) viruses can produce symptoms like those we experience with Lyme and other co-infections. We must be open to all possibilities. Lyme CAN re-activate dormant viral infections and possibly cause the immune system to go auto-immune as in MS,Lupus, ALS, etc. EPV has already been implicated as a possible cause of MS symptoms...de-myelinating antibody production (Oligoclonal Antibodies). In the end, THEY will find that everything has a cause, and all of these diseases have some common threads.
GIVE respect...get respect.
Peace, Love, and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks for posting this, JR.
This might be a good thing for me to ask the LLMD about. I believe that they've found ticks to be capable of passing viruses as well as bacteria, protozoa & mycoplasma, if I'm not mistaken.
I don't believe I've been tested for any viruses yet.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lymebytes
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posted
And if anyone else wants more info on viruses pm me, I have dealt with 4 active viruses.
They are known to attach the nervous system, they make herxing impossible as inflammation from herxing also inflames the virus.
Most who have active viruses have had corticosteroids in some form, they are the main "reactivation" of dormant viruses.
Get tested if you think you may have viruses, they are dangerous and create so much more pain -a systemic postherpetic neuralgia in my case.
Antivirals do not kill them but hopefully stop replication, it has in 3 of of mine, but one refuses an keeps replicating. Valtrex is most advised by LLMD's, Valcyte is good also, Famvir, Acyclovir and other's are basically the same, but have different modes of action.
This is an important subject - thanks for bringing it up.
timaca
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Member # 6911
posted
Yes, do consider viruses as a possible cause of your problems. As I've written here before you CANNOT tell the difference between a bacterial infection (lyme) and a viral infection (hhv-6 or EBV) by symptoms alone. The symptoms are the same.
So, get tested for both (lyme and viruses).
Apparently, I had both. Did lots of antibiotics for lyme. Now I'm on valcyte, and seeing significant improvements. I have a follow-up appt at Stanford next week.
I've posted here in the medical section on how to test for viruses. Someone can do a search for me and post the link (or I'll do it later...gotta run now )
Timaca ps...I'm Timaca on the hhv-6 forum too. Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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timaca
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Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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kelmo
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posted
HOW neat! I KNOW Michael Manson. He went to my church. At the time, he had just stepped down as the CEO of Petsmart. It was a smaller business then, only a few stores in AZ.
My husband and I had just pulled through a three year stint with EBV, and we talked a lot with him about what he was going through.
At the time, there was nothing anyone could do for EBV, you just had to wait it out. We did get better without medical intervention.
Perhaps with him being around animals, he was bitten by something that flooded his body with all kinds of bacteria/viruses. The article doesn't say that he had bartonella, borrelia, so maybe they didn't test him for it.
I don't know where he is now, but it was cool to see the article.
timaca
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posted
Mr. Manson, although diagnosed with borrelia due to having 4 positive Igenex bands, was determined to have only viral infections. He had no other tick borne diseases. His illness was viral only.
Kelmo, if you and your family have been diagnosed with EBV in the past, you should recheck those titers as explained in the post above. It can become elevated again. (and it appears it can lead to false positive lyme tests).
It seems that the doctors at Stanford are putting people back on Valtrex (this treats EBV) after a treatment course of Valcyte.
For some people it is because they have either relapsed, or their EBV antibody titers have become elevated again (but symptoms have not yet reappeared). And it seems in some cases that the doctors are putting people on valtrex to prevent relapse altogether....whether or not antibody titers to EBV are elevated or not.
It will be interesting to see what the doctor at Stanford tells me when I see him on Friday with regard to all this.
It's neat that you know Mr. Manson. I've met him too. He was my miracle that I spoke of in my link on testing.
I had read about he and Dr. Montoya probably a year ago in a lyme update that came to my e-mail in box.
That article stood out in my mind because he was being treated by an ID doctor that used antivirals for a long time (as compared to the ID doctors that treat lyme for a short time). And he was well enough to backpack with his kids. I used to backpack with my kids, and I wanted to do that again. So, I remembered this article.
A couple of months later, I met him, as he was buying some property from us. We were both amazed at similar illness in our lives, so he encouraged viral testing, and when my titers came back high, I ended up at Stanford. The doctor there couldn't believe how Mr. Manson and I had met. The property that we owned, was jointly owned by another couple, the wife of which was also very ill. She also ended up at Stanford, which was amazing. She is getting well on valcyte too. Mr. Manson, the doctor and I feel our meeting was quite miraculous!
God works in AMAZING ways!
Timaca
[ 06. January 2008, 01:34 PM: Message edited by: timaca ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Geneal
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posted
How about Lyme and viral co-infections?
I've been on valcyte for almost 6 months now.
I am curious to see if my CMV titers have come down as well as EBV and HHV6.
However, I feel I make more progress on doxy.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
funny this was mentioned.
its in my current lyme notes and questions.
"The third issue mentioned was reactivated viruses -- HHV6, Herpes #8, Epstein Barr and Mono all mentioned. Valcyte better choice than Valtrex. Need to treat for 4 months minimum. 4 -6 months suggested."
the above statement is just something i copied and posted into my notes, i do not have the supporting evidence for it nor do i nececarily believe it.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Peace, Love and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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kelmo
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posted
My daughter is getting a full blood workup done on her next visit. I'll make sure we include the virus panel.
If you see Mike again (I remember when his wife had their twins), tell him hello from Open Door Fellowship!
I know he has been dealing with this a long time. Good to know he's coming out of it and can enjoy life.
I tried Valtrex in the past for herpes outbreaks on my face. But, it stopped working. I've been taking Lysine for that, and haven't had a breakout in over a year. I think that's been hitting the virus, too.
Again, we'll have a virus titer panel done just to see where everything stands after two years of treatment.
Posts: 2903 | From AZ | Registered: Feb 2006
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timaca
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Member # 6911
posted
Kelmo~ I will forward greetings on to Mr. Manson from you.
As far as viral testing...get it done at Focus Diagnostics in CA. That way you can compare your results to what Dr. Montoya considers elevated.
I had some blood sent there last Wednesday in preparation for my upcoming trip to Stanford. I had the local lab draw and process the blood, and I sent it myself overnight via FedEx. That way, I know the lab got it. I've had a couple of instances when the lab kept the blood, they processed it or sent it to some other lab than Focus. So, to avoid that problem, I shipped the blood myself (it's a hassle).
I posted lots of info on the HHV-6 website as to how to go about getting tested at Focus labs.
Best wishes, keep us posted. Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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