posted
I can't seem to find anything under "search" about the recent (on going?) study at Stanford on lyme,cfs, or whatever it was for? Anyone?
Posts: 10 | From n. california | Registered: Jul 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Dr. M, an ID doctor at Stanford, has taken an interest in people who suffer with CFS (Chronic Fatigue Syndrome). He believes that infections may be associated with a subset of patients who have CFS. He has done studies on HHV-6 and EBV before. Now he is undertaking a huge study looking at many pathogens (the list is not yet complete) that may play a role in CFS. He is looking at tick borne disease pathogens, and also other infectious pathogens. He is also looking at the immune system to see what is going on there.
To participate in the study, you have to live in CA and be able to get yourself to Stanford for a blood draw. You will know the results of the testing within one year.
There is not treatment with this study, they are just looking at sick people and healthy people to see if they can identify a difference between the two groups with regard to pathogens or the immune system.
By the way, Dr. M is speaking at the ILADS conference on Saturday morning. "Viral Induced CFS, the Stanford Perspective."
He is one bright, hard working, caring, compassionate ID doctor that is for us.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thank you timica. I had a Dr. M at Stanford 8 years ago, and after 3 visits, he was only interested in "his liability". But perhaps he has been enlightened since that was long ago. Or the Dr. M is someone else entirely.
I was also under the impression that there was a Stanford study under "Behaviorial Science and Psychology" going on at this time. Anyone know about this study?
Posts: 10 | From n. california | Registered: Jul 2006
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posted
I participated in the study. Since I've been ill 15 years, I'm sure I'll still be fighting this in a year. Just wanted to see what else might be going with me and hopefully helps further the cause. I have the phone # i used to make the appt, if you want it send me a pm.
Posts: 857 | From northern california | Registered: Dec 2009
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posted
This is a new study being done at Stanford with Drs. S, P, & G in No. Calif. Dr. K is a psychologist. The only thing that concerns me is that they want access to your medical records that opens up your LLMD to whatever.
Also I don't know how they are testing for lyme. i believe Igenex is a part of this. Dr. K has spoken at ILADS ..
Just don't like the part about getting to my medical records, especially since I pay outright for my treatment. I don't trust any place with my records nowadays..
Info is on Betterhealthguy.com website. Maybe Scott could way in on this one.
Thanks much, I do have the phone number. But I did want to see if anyone here was participating and their thoughts. Good to see Stanford being maybe more lyme friendly.
I do remember a couple of years ago (maybe it was longer than that) that some lyme groups and lawyers were putting pressure on Stanford to get more "with the program" when it came to lyme.
Also I have a friend who is likely to have lyme and she gets her medical care at Stanford. I will pass this info on to her.
Posts: 10 | From n. california | Registered: Jul 2006
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posted
It's really encouraging to know that Stanford is involved with studies that relate to Lyme disease. That's a very highly regarded school. If studies at Stanford come out that support chronic Lyme disease, that will go a long way to changing the attitudes of those mainstream MDs who keep saying that they don't believe in LD.
I actually know of someone who was initially diagnosed w/ALS, then somehow made his way to Stanford and they're the ones that diagnosed him with Lyme disease. It really surprised me, because I was seen at one of the major teaching hospitals in LA, and that's where one of the Drs said that he didn't believe in LD, and another said that we don't have LD around here.
Posts: 975 | From California | Registered: Apr 2007
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posted
My husband got his PhD at Stanford and has connections there. I shall ask him to see what he can learn.
I do know that he was called to participate in a lyme study. They are most anxious to find men who have not been on antibiotics, he was told. But he was too sick to wait on the antibiotic therapy and had to pass.
My LLMD in SF is also setting up a large lyme project at Stanford. Is there a support group in the area that would be able to provide us with info on these studies?
My experiences at Stanford have been horrible. My thyroid was removed there with no tests being done to see why it went haywire. Then I had several sinus surgeries....ditto no answer to why...although the surgeon was kind enough to warn me that my sinuses would probably need more surgery in years to come.
Autoimmune disease was the only explanation I got. And it may have been true that they simply did not know any other reason.
I had a C section there, I had port surgery there and was put through the sleep center. These latter experiences were better than the former.
But Stanford is huge and it's easy to get lost. My husband said that they are only interested in you if you have some wild heart condition or a complex enough history to warrant some research grant money to study your case.
I had much better care at our local hospital, but I do think Stanford does outstanding research work.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
psano2, your mailbox is full.
Posts: 857 | From northern california | Registered: Dec 2009
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I'm technically in it, gave them my 15 vials of blood. Just waiting to see what shows up in the mail.
No contact with doctor, no treatment, etc. I didn't have to give anyone my medical records so it's a different study than the one Sk8ter mentions. no way am I giving them my LLMD records!
Posts: 3528 | From US | Registered: Apr 2007
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posted
I'm participating in both studies mentioned here. The one CD 57 is talking about is Dr. Montoya's study, and he requires no information about the patient. The one Sk8ter is talking about is a psychologist's study that is supported by local LLMDs. They do require information about the patient, including medical records.
The one CD 57 is talking about is testing for multiple infections and the purpose is to link them to chronic fatigue syndrome, hence needing to give 15 vials of blood. The study sk8ter is talking about is only testing for lyme disease and has nothing to do with chronic fatigue syndrome. The purpose is more for trying to link Late Stage Lyme to chronic symptoms.
Posts: 710 | From West Coast | Registered: May 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Do you need to be off antibiotics for both studies?
Posts: 4590 | From Midwest | Registered: Jun 2008
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Ska8ter, I can fully appreciate your concerns. Like you I don't trust anyone with medical records and with good reason.
We did the valcyte protocol per Dr. M/Stanford due to extremely high HHV6 titers. We investing a lot of time, money, energy and HOPE for many months only to end up disappointed with little to no improvement whatsoever.
We found out Lyme was the real culrpit and once treatment was underway HHV6 and EBV titers went down.
I hope xmrv proves to be a major culprit. Thanks to those who have or are currently participating in the Stanford studies.
It would be great if places like Stanford and Columbia stood at the forefront of tick-borne disease. I just don[t see that coming anytime soon. There is still too much political stuff going on. Hope I am wrong.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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