"Incline Village" What is it?

Discussion in 'Fibromyalgia Main Forum' started by nah.stacey, Oct 25, 2009.

  1. nah.stacey

    nah.stacey Member

    I read posts about Incline Village all the time.

    What is it? A town? A hospital?

    I'm just curious. I've never heard it mentioned anywhere but here.

  2. zeowa

    zeowa New Member

    Reading the list of cluster epidemics was incredible. I had only heard of a few prior to going to that site. It's just incredible that it's traveled the world and it seems very plausible that there is some common factor (environmental stress (i.e. toxin) of some sort?) that creates immune dysfunction and a distinct set of neurotoxic symptoms.

    I'm somewhat surprised that more investigation (not by the CDC!) hasn't taken place in terms of what factors coincide in various locations, etc.
  3. karynwolfe

    karynwolfe New Member

    GEOCITIES IS CLOSING today (their free servers, that is) so I'm not sure if this will be available after midnight, but here is a website describing the Incline Village/Lake Tahoe outbreak:


    It has the journal article, "A Chronic Illness Characterized by Fatigue, Neurologic and Immunologic Disorders, and Active Human Herpesvirus Type 6 Infection"

    "Epidemic Outbreak at Lake Tahoe

    The rare disease Myalgic Encephalomyelitis exploded into a worldwide epidemic beginning in the early 1980s. Thousands have died and millions are now disabled.

    Without warning at a small town on Lake Tahoe hundreds of cases appeared in 1984-85. At the same time other communities from New Zealand, North Carolina, New York, Montreal, San Francisco also began to confront the spread of the same disease. These outbreaks were typical of dozens of local ME epidemics documented throughout the 20th century, but this Lake Tahoe outbreak was especially important for igniting medical interest early in the pandemic and heralded the worldwide onslaught of this unrelenting epidemic. Twenty years later more than 20 million have become infected.

    The resolute and insistent calls for investigation and concern by Drs. Cheney and Peterson alerted Professor Komaroff and his team at Harvard Medical School, already evaluating many similar cases in Boston. Scientists from the National Cancer Institute were also enlisted. These efforts and numerous medical science reports that followed provided the foundation for considerable and continuing scientific progress. Much of these investigations also support and extend Dr. Ramsay’s earlier studies of Myalgic Encephalomyelitis, a neurologic disease that specially affects the muscles, the brain and the circulation. "
  4. Slayadragon

    Slayadragon New Member

    >it seems very plausible that there is some common factor (environmental stress (i.e. toxin) of some sort?) that creates immune dysfunction and a distinct set of neurotoxic symptoms.

    I've had CFS since 1996. My case has been wholly classic, in terms of history (starting with Killer Flu), lab tests, reactions to medications and symptoms.

    In late 2007, I realized that my illness had a very strong component related to toxic mold. I moved out of my moldy house, put aside all my contaminated stuff, and began to avoid toxic mold (in the outside air, in buildings and on objects) as best I could.

    In September 2008, I went to visit Erik Johnson, who is one of the 140 prototype patients from the Incline Village epidemic. He has since been practicing what he calls "Extreme Mold Avoidance," and gave me some further tips on doing a better job at avoidance.

    Following that, my health jumped to almost wholly normal. The exception was my cognitive function. But all my CFS symptoms (ALL of them) went away.

    Unfortunately, this only remained the case insofar as I made absurd efforts to stay away from toxic mold. I spent a lot of time in the godforsaken wilderness (largely desert) because cities were too contaminated with outdoor mold toxins for me to tolerate.

    Over time, I pursued aggressive detox of mold toxins and other toxins. I found that my body only let go of toxins when it was really clear.

    More recently, I've been taking herpes antivirals (Famvir and now Valcyte). I've become much more tolerant of toxic mold as a result. My cognitive function has improved. I feel close to the point where I can go back to a normal life and remain healthy, though we'll have to see if it happens.

    I feel sure that the antivirals wouldn't have had an effect on me if it hadn't been for the extreme avoidance and detox though. I wasn't able to tolerate even a small amount of Famvir before pursuing avoidance, and very few other people make much progress on those drugs.

    I bring this up because of my recent experience in visiting Lake Tahoe.

    I spent several nights there, sleeping in a tent and exploring the area. Curiosity killed the cat, unfortunately.

    I encountered there a substance in the outside air that made me sicker than I'd been at any time throughout my illness. It's hard to convey just how horrific it was. I truly wanted to die.

    Erik tells me that this stuff first appeared in Incline Village (and in the Tahoe area as a whole) a few months prior to the epidemic there. He was aware that "regular bad" mold affected him prior to this, but said that this stuff was infinitely worse.....and got even worse than that after he got the "Killer Flu."

    He observed that other people with CFS got especially sick when they were directly exposed to this stuff, and surmised that it was in some way (though not wholly) responsible for the epidemic.

    He spent the next 25 years trying to get people to believe him that this stuff was related to CFS. People ignored him throughout.

    Now that more people (including Dr. Cheney) are accepting that toxic mold indeed does have an effect on CFS sufferers, we're at least moving in the right direction.

    Erik says that he's talked to Judy Mikovits about his experiences and that she's expressed interest in pursuing it more. So that's progress too.

    The idea that there is a toxic mold that grows outside and that has horrific effects on us is a little hard to swallow. I admit that.

    But I promise you with every fiber of my being that it's nonetheless true.

    Best, Lisa

  5. denis321

    denis321 New Member

    and has some very wealthy residents who have second homes there. It's beautiful with the trees, clear waters of Tahoe, and the mountains surrounding the lake. Quieter than South Lake Tahoe.

    Unfortunately, some people, yours truly included, got sick after visiting the area.
  6. karynwolfe

    karynwolfe New Member

    You're welcome, glen =)
  7. Slayadragon

    Slayadragon New Member

    Hi Denis,

    Would you give a few more details regarding your experience in Incline Village?

    For instance:

    What year did you go there?

    How was your health before then?

    Where did you visit? Where did you stay?

    Did you feel bad while there?

    What happened after you left?

    Where were you living at the time? Or where have you lived since?

    Do you know anyone else who got sick there?

    Thanks for whatever info you can provide.

    Best, Lisa

  8. nah.stacey

    nah.stacey Member

    I'm with slayadragon, I would love to hear more details about your experience with Incline and your sickness.

    I just recently drove through Incline Village on our way to CA around Sept.5th. We ended up there by taking a wrong turn. I thought it was a beautiful place, but we were only passing through so I didn't get out or really breath the air. Thank Goodness.

    That was the only Incline Village I knew and wondered what it could possibly have to do with CFS. Now I know.

    Wow, could this be contracted by, oh I don't know ......A VIRUS???????????

    I wonder if they did any experimental vaccines at Incline they didn't do elsewhere, as a test run.

    It's great that they are building the WPI right there in Reno. Incline is soooo close, I wonder how many are still in the area that can be helped by the Institute when it's up and running next year. Don't you wonder if the Wittmore's daughter went up to play at Lake Tahoe and went through the incline area when she was 11? maybe she's part of the whole epidemic.

    Thank you for all your replies and links to more info.
  9. Slayadragon

    Slayadragon New Member

  10. denis321

    denis321 New Member

    Suffice it to say that I was a healthy active person before CFS and that my trip there was for business purposes. It was years after the Incline Village epidemic.

    For privacy, I'm not going to say more because of the Internet.

    Given the probs with diagnosis, I bet no one has ever plotted geographically and over time the spread of this illness. If they did, it might show that specific US areas, e.g. the areas around epidemics, are more affected than others. Using date of onset might help with charting time course.

    Stacey: The "P" in WPI is from Dr. Peterson who was one of the first docs to notify CDC of the Incline Village epidemic. His medical practice is in Incline Village.

    [This Message was Edited on 10/28/2009]
  11. Slayadragon

    Slayadragon New Member

    I certainly don't want to intrude upon your privacy, but I'm really interested in Incline Village in general and would really appreciate any information you might supply.

    A couple of general questions:

    How did you feel while you were there?

    How long did it take after you left before you started feeling bad?

    Did you get anything like the "Killer Flu"?

    If you like, please feel free to let me know at y-hool.

    Same name.

  12. cerise

    cerise New Member

    Incline Village is a town located on the northshore of Lake Tahoe. Lake Tahoe is both the states of California & Nevada. Incline Village is in the State of Nevada.

    Incline Village is where the first outbreak of "CFS" (initially thought to be Epstein-Barr virus) & the CDC was brought into investigate by 2 doctors who had a clinic in Incline Village (Drs Cheney & Petersen) who had abnormal number of patients with the same symptoms.

    It was from CDC's "research" at Incline Village that were the basis of their "finding" of a new illness which they chose to name "Chronic Fatigue Syndrome". "CFS" is an American created disease that suddenly appeared out of nowhere in 1984 in Incline Village.

    You can read all about it & the rest of the history, key players etc. in Hillary Johnson's book: "Osler's Web". For those who have problems with Social Security Administration etc, should read this book to understand the root of the problem we are burdened with now.

    Incline Village is a beautiful place & can be found on any map.

    I was dx with Epstein-Barr virus in 1987 & later CFS. I lived in Northern Calif. as well as part-time in Incline Village during the winters in the late 1970s.[This Message was Edited on 10/28/2009]