1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
California 2014: IACFS/ME Day Four: Translating Science into Clinical Care: 23 March 2014
It is Day Four and the final conference session from San Francisco. In this review we hear from Searcher about the neurosciences session, and PET and EEG analysis, then a study on cognitive functioning, followed by a debate on the revised 2014 IACFS/ME Primer, and then we wrap-up the...
Discuss the article on the Forums.

XMRV-SF Bay Area Folks

Discussion in 'XMRV Testing, Treatment and Transmission' started by Navid, Dec 4, 2009.

  1. Navid

    Navid Senior Member

    Messages:
    409
    Likes:
    58
    Hi:

    I'm sensing that many who post here live in the SF Bay area. I do.

    Wondering if any XMRV+ folks are thinking of trying to see any of the many HIV/AIDs experts we have here?

    Would these docs be interested in us...once there is more evidence around XMRV being the cause of our symptoms...and the possibility that many HIV drugs may be helpful to us?

    Thanks, Lisa
  2. Navid

    Navid Senior Member

    Messages:
    409
    Likes:
    58
    no cart b/f horse in this town : )

    hi levi:

    of course i would not embark on an anti-retroviral treatment unless i tested + and there were further evidence that xmrv were responsible for my symptoms and that anti-retroviral drugs could improve my situation.

    i am fully aware of testing procedures.

    with all that said, i still think it would be interesting to see what hiv/aids docs have to say about treating xmrv patients.

    they have been treating a "deadly" retro-virus for years.

    they also accept insurance which most cfid's and llmd's do not. after spending $100,000's trying to get well over the past 5 years it would be nice to see my insurance cover a treatment : )

    i have seen many of the top cfid's and llmd's docs both here in the bay area and across the country.....no improvement with ANY of their treatments.


    thanks, lisag
  3. I don't think patients with XMRV have to worry about their disease being deadly at all personally.

    I mean look at all the elderly people with ME CFS who have it since childhood.

    Ohh wait, ......
  4. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    Klimas is an HIV specialist, but I'm not aware of any dual HIV/CFS people - perhaps now other HIV specialists will start to follow her lead and branch out. If it all pans out of course! :)
  5. jewel

    jewel Senior Member

    Messages:
    195
    Likes:
    8
    I would be very interested in getting some names of reputable Bay Area docs have been helpful in at least decent symptom management in these illnesses. I am with Kaiser currently; at least I have insurance, but I'm not hoping for a Kaiser doc... Or, I may try to see if I can get wait listed in Reno. (In about a year, I may be able to switch back to a PPO type insurance, but after spending bad money after good, I finally gave up and went with the least expensive option. If I get something acute and treatable (strep throat), at least for now this works). Cheers, Jule
  6. abstractblue

    abstractblue Guest

    I'm in the bay area too.. I haven't really had much success with doctors in the area. Do you guys ever meet up to discuss CFS stuff?
  7. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Hi everyone from the Bay Area. I'm too bedridden to meet in person but maybe some day. Dr. Montoya at Stanford is an AIDS doctor who started treating patients with Valcyte. :)
  8. jewel

    jewel Senior Member

    Messages:
    195
    Likes:
    8
    I'm new to these forums, but would be very open to meeting, video chat, or what not.

    Teejkay, sorry you are bedridden... I had also thought about Montoya when his first study came out; now the follow up study has not been so promising, but he is still on the "radar".

    take care, J
  9. abstractblue

    abstractblue Guest

    What happened to Montoya's clinical trial with Valcyte?
  10. Dreambirdie

    Dreambirdie work in progress

    Messages:
    4,835
    Likes:
    2,732
    N. California
    Wow--look at all the Bay Area people! I didn't know there were such a bunch of us.

    I'm not inclined to do the allopathic medical thing, too much damage caused in the past. But would love to hear about any absolutely brilliant MD's who are skilled at what they call "functional medicine."
  11. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    http://www.vicd.info/clinicaltrial.html

    "...while the final test results are not yet publically available, the data Dr. Montoya presented at the 2008 International Conference on HHV-6&7 indicated that patients on Valcyte experienced significant cognitive improvement. "
  12. PoetInSF

    PoetInSF Senior Member

    Messages:
    167
    Likes:
    8
    SF
    It's a bust as far as I can see. The first (unblinded) trial claimed 21/25 with improvement, some with complete recovery. The best the 2nd (double blind) could say was "... an improvement rate of greater than 20% and greater than 30% in the self-rated cognitive functioning was found in a significantly higher proportion of patients in the valganciclovir group than in the placebo group (p=0.0235 and p=0.0485, respectively)". I'd be surprised if the 3rd trial materialize. But then, a few $million is nothing to Roche, I'm sure. Especially given the possible pay off.
  13. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    My notes say that the Montoya trial had "what sounds like three primary outcome measures" -- but I dont know where I got that from. Anyone have a good source on it? I'm not going to claim anywhere near 100% confidence that he had three outcome measures, but I will sort of assume for this post that he did, in order to make my point.

    Heres the deal: when you measure more than one thing, you are more likely to observe by chance something that seems significant.

    Flip a coin ten times and theres a certain probability that you will get 8 heads just by chance. You might say "wow, thats so different from the expected five out of ten heads -- something bizarre must have happened!" You'd be wrong about that of course, but if you instead got 8,000 / 10,000 heads, you would be justified in thinking that something was wrong with the coin.

    In science we attempt to deal with this using p values. If 3 / 10 treated with drug XYZ were cured but 1 / 10 treated with placebo were also cured, thats not interesting; it could easily have happened by random chance. p values represent the chance that certain results differing from placebo could have differed in that way just by random chance like in coin flips.

    In biomed we set the p value threshold for something that can be published at 0.05, or 1/20. This is probably much too generous.

    When you measure more than one outcome in a trial, you have a problem if those outcomes are at least somewhat independent (meaning one is probably able and indeed fairly likely to occur, to the best of our knowledge, even if the others dont). The problem is that you are testing multiple hypotheses. If even one of the hypotheses is supported, you can then claim that the trial worked. But if you test two hypotheses that are fully independent, and only one is true at p < 0.05, then the p value for *at least one* of those hypotheses appearing true by chance is not 0.05. It is, approximately (not exactly) 0.10. So now there is a 1 in 10 chance that your trial would appear successful even if it isnt.

    This gets worse. Many negative results are not published -- an unknown amount of them. That means hypotheses are regularly tested but are not reported. If half of all experiments fail to show anything interesting and are not published, then the true p values for what is published are (exactly, I believe) double what they appear. So for a trial with two fully-independent outcome measures, we are now up to a 1 in 5 chance of getting random results that falsely appear meaningful.

    You can see then, why probably a large fraction of what is published in medicine is false.

    Now, what Montoya did, if he really had three primary outcome measures, is not at all wrong to do. You dont really know might happen in the trial, so you might designate some single primary outcome measure, say fatigue, and then what happens is a very interesting reduction in brain fog that is very unlikely to be random. But you cant start crowing about that now, if you didnt designate that in advance as a primary outcome measure. Because if you dont say what you are looking for, then there are probably 10 or 50 different measures you could apply to CFS. Wow, a reduction in heart palpitations! Or a reduction in petichiae or shortness of breath. If you leave yourself free to notice all these potential "outcomes", then you are going to test many different hypotheses, and the odds of observing something "interesting" that is really due to random chance get close to 1, that is 100%. So, it is "fair" to designate two or three primary outcome measures. You can also designate any number of "secondary outcome measures", but they dont really "count" formally, objectively -- if they turn up something very unexpected, with a very low apparent, "official" p value, it could be of subjective interest for further study, but the trial hasnt proved that what happened with that was actually caused by the drug (or other experimental intervention) rather than by randomness.

    So, that's why the Montoya trial is fairly likely never to be published, *if*, as I'm speculating, the one outcome measure that was significant was significant only with p near 0.05 rather than far less than 0.05. Everyone knows Montoya had a fair and square reason to set multiple primary outcome measures (at least thats what it sounded like from what I read). But everyone also knows that if one of three outcome measures wasnt far below 0.05, then the finding is rather likely to be an illusion caused by randomness, even though it is "technically" publishable and would in some cases be published. If someone didnt have much to show for their work over the years, they might publish anything and everything that was technically publishable (in a relatively weak journal). But since Montoya is already a more elite type at a fine University, he probably wont publish it *if* the numbers are something most people would know are not really satisfying.

    To repeat, though, I dont know for sure what his numbers were and what the number of outcome measures was. I just wanted to explain what is often, maybe usually, going on in the sort of situation that this sort of sounds like.
  14. Navid

    Navid Senior Member

    Messages:
    409
    Likes:
    58
    Docs in Bay Area: Jewel

    jewel:

    according to levi and many other cfs patients i know this practice is good:

    However, there are M.D.s in the area that already treat CFS and have an interest in XMRV. Gordon Medical associates in Santa Rosa, for one.

    I saw Christine Greene in SF. She dx'd lyme and i did 2 yrs of iv abx with her and Dr. Stricker....just got sicker : (

    In terms of functional med. docs... Dr. Gary Ross in SF is good...but $$$$$

    Louisa Wiliams in San Rafael is very alternative, but has helped some folks.

    Good luck.

    Lisa
  15. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    41
    Santa Rosa, CA
    valcyte experience

    Thanks Eric Johnson. I could almost follow that.

    Thought I'd jump in here with my personal experience. I was on Valcyte, due to very high CMV levels, for seven months. I couldn't continue on the full dose as my labs got a little scary.

    Valcyte helped a little with cognition. It didn't help at all with fatigue. (Too bad, because if I'm too tired to think, what good is being able to think? :)) It did help with the elevated temperatures I would get in the late afternoon / early evenings, although nine months later, my fevers seem to be coming back.

    I'm in the area. I'm not up for face to face meetings. Cyberspace works best for me.
  16. jam338

    jam338

    Messages:
    17
    Likes:
    1
    ~~Waving Hello to SF Bay Area "Neighbors"~~

    Nice to see neighbors on this board. It makes me feel slightly less isolated in some odd illogical way.

    I am also bedridden and disabled ...5 yrs now. Sick for much longer. It has taken years of evaluating milestone pattens of my disability/illness to realize I have been sick most of my life (59 yrs). There have been milestone events where I worsened and have periodically misinterpretted those events as when it stated. I think my brain is no longer functional enough to distinguish it.

    I agree with Lisa that it would be great if we could find knowledgable docs who take insuance. This illness is financially ruining many of us.

    I have heard for years that UCSF is supposed to one of the best hospitals in the world for treating AIDS......a retrovirus. I wonder if Joe DeRisi's lab has any interest at all in working with XMRV? Does anyone have contacts there to find out?

    It would be great to know more fellow patients from our area. After 5 bedridden years I have become entirely socially isolated. The ever increasing secondary depression and cognitive problems make it harder and harder to reach out to family/friends who were part of my healthy years. That all seems like an old movie now in black and white.

    Someone earlier on this thread asked about if patients from our area ever get together. If I recall correctly I think there is or was a SF bay area support group that meets. The info on it was posted on ProHealth. I have never been well enough to attend though. Since having 2 infected root canals extracted about a month or so ago, I sometimes have brief windows where I have been able to attend other support group meetings. I relapse afterwards so now re-evaluating the benefit vs cost of it, but would be interested in being advised if any of y'all plan to form a support group.

    It is so difficult to provide or receive support with this illness. Depending on what stage of disability you are at with this illness. There are so many different levels of functional capability. For the most part I am too sick to attend meetings, talk on the phone, and can barely manage message board or email participation. Yet the more isolated I become the worse my depression becomes. Surely there must be a workable support process.

    I am fairly computer illiterate, but does anyone know if SKYPE is a viable option? I see it used on Oprah but don't know a thing about it. Presumably a software download...is it free? How does it work? Meaning can the severely cognitively challenged manage the download, installation, and operational features? Does it have conference call capability? Maybe something like that might be an option for those who can do it?

    I am surprised that CFS message boards haven't developed a feature for video conferencing ....kinda like chat room discussion....to help lessen the isolation factor. Maybe someone has and I am too isolated to even know about it.

    I am in Fairfield and wondering if anyone is near my vicinity? It is about half way between SF and Sacramento along I-80.
  17. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    41
    Santa Rosa, CA
    Skype

    Waving back at you, jam388.
    Maybe someone (not me, I'm not volunteering myself), would like to start a Skype thread. Skype and the ME/CFS community. Or something like that. Just a thought.
  18. jam338

    jam338

    Messages:
    17
    Likes:
    1
    For Those in SF Bay Area

    Hi Gracenote, thanks for saying hello and asking others about Skype.

    I wonder if any of us are dealing with the environmental issues from this SF Bay area industrial accident along with all the other things ???? Note the bolded part below.

    http://www.sacbee.com/livinghere/story/1602532.html
    smcmanis@sacbee.com
    Published Sunday, Feb. 08, 2009

    When your nose is your worst enemy: Kathy Rosskopf's ordeal eases – as experts debate what it is


    If you find yourself at a fine-dining establishment around the Calaveras County town of Wilseyville and happen to see a grown woman bent over, sniffing the seats, do not be alarmed.

    That is just Kathy Rosskopf, back in the world again after a 14-year ordeal with an affliction some have called multiple chemical sensitivity, in which fragrances ranging from perfumes to carpeting to fumes from plastics can send her reeling.

    Once cloistered at home to escape offending odors, Rosskopf has finally improved enough to do the "normal" things in life: fill the gas tank, go grocery shopping, attend a friend's wedding or, yes, dine out at a restaurant.

    "We stand right outside the (restaurant) door and breathe it in," Rosskopf says of her tentative forays out with her husband, Roland Pesch. "If it's too stinky, we won't go inside. And I sniff the seats because people use detergents to wash their clothes, and I can pick that up. Same with the linen napkins."

    Rosskopf, a 60-year-old with a quick wit and self-deprecating humor, knows what people might be thinking.

    But ...

    "It is a strange sight, sniffing seats," she says, "but with this problem, you get used to looking weird in public."

    She says vigilance is required to keep her olfactory sense from triggering symptoms – from dizziness and nausea to confusion and exhaustion – with a mere whiff. Rosskopf says her physically debilitating, emotionally wrenching and socially ostracizing condition feels very real to her.

    But most major medical organizations – the American College of Physicians; the American Academy of Allergy, Asthma and Immunology; and the Centers for Disease Control and Prevention – doubt multiple chemical sensitivity even exists. The U.S. Environmental Protection Agency has ruled that, "at present (there is) no medical consensus concerning the definition or nature of this disorder." Many researchers have called the physical symptoms "psychosomatic."

    Dr. Mark Grijnsztein, an allergist with the Sutter Medical Group in Sacramento, said he believes patients can, indeed, have reactions to perfume, paint and other irritants.

    "They have a baseline condition, such as asthma or bronchial problems," Grijnsztein says. "But people with multiple chemical sensitivity have symptoms that are difficult to define and difficult to prove with tests. It's not that they don't suffer. But I don't know if you can correlate (those symptoms) to a medical exposure."

    According to a 2008 article in the Journal of Environmental Health, "No accepted diagnostic physiologic test has been developed, such as complete blood count or antibody levels, which correlates with symptoms. Diagnosis is primarily based on a patient's subjective reports."

    All Rosskopf knows is what she feels. She said several doctors failed to help, and it wasn't until she connected with integrative medicine specialist Dr. Beth McDougall of Mill Valley that she received a treatment plan. Rosskopf says it involves a mix of dietary supplements and prescription drugs to deal with the high levels of mercury and lead in her system, among other problems.

    Rosskopf and her husband believe her sensitivity can be traced to 1994, when the couple lived in the East Bay community of Crockett.

    That summer, an accident at the Unocal oil refinery in nearby Rodeo spewed an estimated 100 tons of the hazardous compound catacarb – a metallic solution used to purify hydrogen – into the air for 16 straight days. It sickened hundreds. (Unocal paid $4.5 million in a settlement to the towns of Rodeo and Crockett.)

    "Roland and I both started developing what seemed like colds frequently – runny nose, malaise – and it was continuous," Rosskopf says. "I got an eye infection. My nasal passages felt seared. I had more problems breathing, more huffing and puffing.

    "Then the symptoms started increasing. It was confusing. You know your body very well. All of a sudden, these things are happening that you can't explain. I'd feel disoriented, dizzy. I'd get a particular kind of headache that happened after I could smell stuff in the air. Overwhelming fatigue. I'd have to drop in my tracks and go lie down."

    Pesch says his more minor symptoms went away in time. Rosskopf, apparently, wasn't so lucky.

    In the late 1990s, the couple moved from Crockett to rural Wilseyville. But Rosskopf's symptoms only worsened. Pesch says he knew Rosskopf's sensitivity was physical in nature when – two rooms removed – she was sickened by the smell of plastic woodgrain on a new set of stereo speakers.

    "It became impossible for Kathy to be in the house with anything like that," Pesch says, meaning household cleaners, lotions, scented detergents.

    Walking down the street became a trial. Anyone wearing cologne or scented antiperspirant made her ill. "It wouldn't take long until I was incapacitated," she says. "I didn't react the same way every time. Sometimes, slurred speech. Sometimes, short-term memory loss. Sometimes, headaches." (Interestingly, she says she has no allergies to animals or flowers and pollen.)

    After several years on a strict supplement regimen – and having a dentist remove all her mercury amalgam fillings – Rosskopf reached a point this summer where she could attend a wedding near her home and make an appearance at a friend's memorial service in Palo Alto.

    "There were lots of hugs from people with perfume on," she says. "I was able to last five hours."

    Upon leaving the service, Rosskopf did a little self-detoxing. "I wiped down with handiwipes," she says. "Fragrance-free ones."
  19. jewel

    jewel Senior Member

    Messages:
    195
    Likes:
    8
    Hi again neighbors,

    Sorry for the delay in responding, but thanks to all for the tips on docs. I think it funny that I was so enthusiastic about a meet up when I've been dragging myself around and barely functional the last month or so. (I am lucky that I can drag myself around, so I am not complaining). I have a long way to go in terms of figuring out realistic parameters for my activity, but I am optimistic that if Skype were available (if I could figure out how to use it), I might just be up to that! Ok, take care, jule
  20. abstractblue

    abstractblue Guest

    If anyone wants to meet up for coffee, tea, etc, I'm down. I'm a 29 year old male living in San Francisco. Have had CFS for several years now, but still able to work full time. I've never really known anyone else with this problem and it would be nice to..

See more popular forum discussions.

Share This Page