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Report on Dr. Jose Montoya's talk at Stanford on March 3, 2011

Discussion in 'General ME/CFS News' started by richvank, Mar 7, 2011.

  1. urbantravels

    urbantravels disjecta membra

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    Los Angeles, CA
    I just wish *someone* was doing research in the Los Angeles area. I want to be a guinea pig, and no local opportunities....:(
  2. SOC

    SOC Back to work (easy, part-time work)

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    USA
    You think you got it bad? Try finding ME/CFS researchers in the middle of soybean fields. Try finding anything in the middle of a soybean field ;)
  3. Hope123

    Hope123 Senior Member

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    I suggested you contact Dr. John Chia, who is an ID doc in Torrance. Dr. Chia is generally a "mainstream" doc as I understand although he is open to thinking out of the box as well. His concentration is on enteroviruses and their possible causative role in ME/CFS but I don't think he is so dogmatic with it as he works with other researchers, including Monotya. Dr. Chia's son had ME/CFS but recovered to some extent but I don't think he pushes anything as a "sure cure."

    http://chronicfatigue.stanford.edu/infections/entero-experts.html

    http://cfspatientadvocate.blogspot.com/2010/02/dr-john-chia-researcher.html
  4. serg1942

    serg1942 Senior Member

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    Spain
  5. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    This is a really long video. Has anyone seen a transcript anywhere?

    Thanks for the great report, Rich!

    Best, Lisa
  6. SirArthur

    SirArthur

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    Thanks for going & reporting back Rich. Had I known about this event I would have attempted to go myself as I'm not that far from Stanford.
    The Video is up (thx for the link) much sooner than I expected, time to watch now...
  7. Timaca

    Timaca Senior Member

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    I really enjoyed watching this video. It is apparent that Dr. Montoya understands what we as patients go through. He is truly seeking the correct answers. He is hard working, dedicated, caring, and very, very smart!
  8. ukme

    ukme Senior Member

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    Thanks Rich it was well worth listening to. What a great guy Dr Montoya is, he really really wants to find the answers.
  9. LaurelW

    LaurelW Senior Member

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    Utah
    I think I have another doctor crush. Dr. Montoya is very smart and compassionate.
  10. Navid

    Navid Senior Member

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    a very worthy crush. he's my doc and is just as wonderful in real life. a truly fine man : )
  11. ixchelkali

    ixchelkali Senior Member

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    Long Beach, CA
    Great video, very worthwhile listening to. I wish we had lots more doctors like Dr Montoya.
  12. anne_likes_red

    anne_likes_red Senior Member

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    Too right! :))
  13. richvank

    richvank Senior Member

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    Hi, charityfundraiser.

    Sorry, I don't have a way of estimating that. I spoke to a few of the people afterward, and I would guess that there were some of each, but I can't say what the proportions were. There were clearly at least several patients and some "significant others" of patients there. There were some people representing support groups. There were some people from Dr. Montoya's staff. You might be able to infer into which categories some of the questioners fell from their questions. There was just no "roll call," so I can't say who all the people were. I recognized only one PWC whom I had met at the last IACFS/ME conference, and I know that there was at least one other PWC there who I "know" from the internet, but haven't met personally. I didn't know which person she was, so still haven't met her in person!

    Best regards,

    Rich
  14. Xandoff

    Xandoff Michael

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    Northern Vermont
    This is a fantastic video. At exactly one hour into it Dr. Montoya talks about a patient with a type of post herpectic pain that was helped with aclyvoir(sp?) that relieved her pain after a year and a half. I suffer from chronic back pain and have HHV-2 as well as HHV-6. I wonder if I have both in my spinal fluid and post herpetic neuralgia pain. It would cetainly explain my intractable chronic pain. I am XMRV positive and I also have Empty Sella (syndrome) which I am also guessing could be related. I am going to ask my Doctor if he will add Famvir or something to my Valcyte regiment.
    I would be interested in hearing from anybody with similar issues.
    ---------------------------------------------------------------------------------------------------------------------------------------------------------------
    See link
    http://www.prohealth.com/library/showarticle.cfm?libid=13009 Richard Podell, MD, explains shingles – a herpes virus activation that may affect a significant proportion of Fibromyalgia and Chronic Fatigue Syndrome patients




    PHN starts with inflammation and damage within the shingles-infected nerve. But this is not all. The effects of shingles pain and nerve damage can also “flow” backward through the infected nerve into the spinal cord itself. In this way PHN can disrupt the pain-conducting pathways within the spine, and from the spine, on into the brain. We call this nerve-damage induced pain neuropathic pain. At this late stage of postherpetic neuralgia there is no longer an active viral infection. Anti-viral treatments for PHN usually don’t help. (Although there may be rare exceptions where antivirals might help.)

    n For some postherpetic neuralgia victims the pain is relatively modest – an annoying background ache, irritation, or burning.

    n Others with pain suffer shooting-pain paroxysms down the affected nerve.

    n A third group with PHN has an even more disturbing postherpetic neuralgia pain problem. This is called allodynia – a diffusely increased sensitivity to pain of all kinds and also to other stimuli that normally would not be painful, such as light pressure and even touch.

    To understand allodynia’s increased sensitivity to pain, think of your nervous system’s pain transmission pathways as a series of radios broadcasting sound signals - from the peripheral nerve up through station stops within the spine, and finally up into the brain. Imagine that most or all these radio relays have their volume knobs turned up to “very loud.” That’s what allodynia means to our pain broadcasting system.

    Increased postherpetic neuralgia pain sensitivity can be fairly local, just around the originally damaged nerve. In contrast, for others postherpetic neuralgia increased pain sensitivity can spread both up and down the spine, causing increased sensitivity to pain throughout the entire body. Fibromyalgia with diffusely sore, sensitive muscles can be one result of post herpetic neuralgia pain-causing allodynia.

    Treatments for Acute Shingles and Early Postherpetic Neuralgia

    If started within 72 hours, antiviral antibiotics such as FamvirR (famciclovir), ValtrexR (valcyclovir) and ZoviraxR (acyclovir) markedly shorten the duration of the initial shingles infection. Antivirals also reduce the later risk of developing post herpetic neuralgia (or PHN). However, after 72 hours the success rate drops off very rapidly. Therefore, if you suspect shingles, you should see your doctor promptly.

    Suspect shingles if you develop an itching or painful rash. A Herpes rash typically has small blebs or vesicles, like tiny balloons out-pouching from the skin. Most often the shingles rash tends to form a straight line over the path of the infected nerve.

    Strong pain medicine taken early, for example codeine or morphine, also reduces post herpetic neuralgia complications. Nerve stabilizing medicines such as the tricyclic antidepressants (such as ElavilR, PamelorR) also reduce the risk of developing PHN.

    Neither pain medicines nor the tricyclics have anti-viral effects. That they help prevent postherpetic neuralgia suggests that severe pain causes damage to the nerve, which then feeds back into the spinal cord, causing changes there that create increased pain sensitivity. This mechanism may be similar to the neural sensitization process that is believed to cause Fibromyalgia.

    High doses of cortisone-type medicines, and also electrical stimulation along the involved nerve might also reduce the risk of chronic shingles complications. However, the evidence for these treatments isn’t conclusive.

    Chronic Stage Treatments for Postherpetic Neuralgia (PHN)

    The pain of PHN probably reflects damage at multiple points along the damaged nerve and in the spinal cord and perhaps also the brain. Therefore, the best treatment needs to address multiple points of vulnerability.

    Optimal care also requires holistic attention to the body’s natural healing systems, creating a metabolic environment that minimizes further damage and encourages repair.

    Our goal is to both relieve current symptoms while also taking steps to heal the increased sensitivity to pain that typically occurs with this illness. (No, it’s not psychological or “all in your head”.) See our discussion of this holistic approach: “Reversing Eight Vicious Cycles That Block Fibromyalgia and Chronic Fatigue Syndrome Healing”.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Good video of montoya, they dont seem biased towards one thing like just xmrv but a variety of infections. One thing he didnt mention was CMV infections which seems strange to me as valcyte was originally made to use in cmv eye infections in organ transplant patients and patients with HIV/CMV.

    Are there others here who have tested positive to cmv??
  16. CBS

    CBS Senior Member

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    Western US
    I do know that Dr. Montoya tests at least some of his patients for CMV. Not sure what percentage come back positive.
  17. Rrrr

    Rrrr Senior Member

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    great to read this thread. thanks for reporting, rich! -- rrrr
  18. SaveMe

    SaveMe *****

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    the city
    A message to everyone:

    not many CFS videos have alot of view counts. In order to raise view count, and thus promote awareness, action needs to be taken. You see, a search on youtube for any subject will display only vids with the "highest view count" or "most discussed." In order to get this vid up there, please post more comments on here, give more thumbs up, and share it on forums, blogs, or where ever!

    Lets let 10,000 people see this video!

    http://www.youtube.com/watch?v=Riybtt6SChU
  19. Jacque

    Jacque Senior Member

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    USA - California
    I too Z have horrendous neuropathic pain which seems to have intensified with the use of the Rituxan... grumble grumble..not exactly what I was hoping for. We are now going to add Valcyte to my protocol and see what happens... I cannot sleep or do much of anything bc of the intractable spine pain mainly neck and low back and then it shoots and burns all down my legs and feet and keeps me up all night. I will watch the video..thank YOU.... I have tried Methylcobalamin injections every 3 days...you name it... I too have most of the viruses mentioned along with Lyme and Protomyxoia. If the Valcyte does not help with this pain that is literally stealing my soul I am gonna go and see that doc up in the Bay area works mainly with the brain. His theory is that the brain's limbic system has been damaged by a hit and run infection and is not sending out all the wrong messages...like a record player stuck on a scratched record justtplayin the same old thing over and over... God I have got find a a way out of this...we all do...what if anything do you take that helps with your nerve pain? I have had to bump up my Norco intake since Rituxan...I just took two so I can try sleep tonite. I hate being in this abyss of shit!!!

    Appreciate you all!




    te="Xandoff, post: 169117, member: 1569"]This is a fantastic video. At exactly one hour into it Dr. Montoya talks about a patient with a type of post herpectic pain that was helped with aclyvoir(sp?) that relieved her pain after a year and a half. I suffer from chronic back pain and have HHV-2 as well as HHV-6. I wonder if I have both in my spinal fluid and post herpetic neuralgia pain. It would cetainly explain my intractable chronic pain. I am XMRV positive and I also have Empty Sella (syndrome) which I am also guessing could be related. I am going to ask my Doctor if he will add Famvir or something to my Valcyte regiment.
    I would be interested in hearing from anybody with similar issues.
    ---------------------------------------------------------------------------------------------------------------------------------------------------------------
    See link
    http://www.prohealth.com/library/showarticle.cfm?libid=13009 Richard Podell, MD, explains shingles – a herpes virus activation that may affect a significant proportion of Fibromyalgia and Chronic Fatigue Syndrome patients




    PHN starts with inflammation and damage within the shingles-infected nerve. But this is not all. The effects of shingles pain and nerve damage can also “flow” backward through the infected nerve into the spinal cord itself. In this way PHN can disrupt the pain-conducting pathways within the spine, and from the spine, on into the brain. We call this nerve-damage induced pain neuropathic pain. At this late stage of postherpetic neuralgia there is no longer an active viral infection. Anti-viral treatments for PHN usually don’t help. (Although there may be rare exceptions where antivirals might help.)

    n For some postherpetic neuralgia victims the pain is relatively modest – an annoying background ache, irritation, or burning.

    n Others with pain suffer shooting-pain paroxysms down the affected nerve.

    n A third group with PHN has an even more disturbing postherpetic neuralgia pain problem. This is called allodynia – a diffusely increased sensitivity to pain of all kinds and also to other stimuli that normally would not be painful, such as light pressure and even touch.

    To understand allodynia’s increased sensitivity to pain, think of your nervous system’s pain transmission pathways as a series of radios broadcasting sound signals - from the peripheral nerve up through station stops within the spine, and finally up into the brain. Imagine that most or all these radio relays have their volume knobs turned up to “very loud.” That’s what allodynia means to our pain broadcasting system.

    Increased postherpetic neuralgia pain sensitivity can be fairly local, just around the originally damaged nerve. In contrast, for others postherpetic neuralgia increased pain sensitivity can spread both up and down the spine, causing increased sensitivity to pain throughout the entire body. Fibromyalgia with diffusely sore, sensitive muscles can be one result of post herpetic neuralgia pain-causing allodynia.

    Treatments for Acute Shingles and Early Postherpetic Neuralgia

    If started within 72 hours, antiviral antibiotics such as FamvirR (famciclovir), ValtrexR (valcyclovir) and ZoviraxR (acyclovir) markedly shorten the duration of the initial shingles infection. Antivirals also reduce the later risk of developing post herpetic neuralgia (or PHN). However, after 72 hours the success rate drops off very rapidly. Therefore, if you suspect shingles, you should see your doctor promptly.

    Suspect shingles if you develop an itching or painful rash. A Herpes rash typically has small blebs or vesicles, like tiny balloons out-pouching from the skin. Most often the shingles rash tends to form a straight line over the path of the infected nerve.

    Strong pain medicine taken early, for example codeine or morphine, also reduces post herpetic neuralgia complications. Nerve stabilizing medicines such as the tricyclic antidepressants (such as ElavilR, PamelorR) also reduce the risk of developing PHN.

    Neither pain medicines nor the tricyclics have anti-viral effects. That they help prevent postherpetic neuralgia suggests that severe pain causes damage to the nerve, which then feeds back into the spinal cord, causing changes there that create increased pain sensitivity. This mechanism may be similar to the neural sensitization process that is believed to cause Fibromyalgia.

    High doses of cortisone-type medicines, and also electrical stimulation along the involved nerve might also reduce the risk of chronic shingles complications. However, the evidence for these treatments isn’t conclusive.

    Chronic Stage Treatments for Postherpetic Neuralgia (PHN)

    The pain of PHN probably reflects damage at multiple points along the damaged nerve and in the spinal cord and perhaps also the brain. Therefore, the best treatment needs to address multiple points of vulnerability.

    Optimal care also requires holistic attention to the body’s natural healing systems, creating a metabolic environment that minimizes further damage and encourages repair.

    Our goal is to both relieve current symptoms while also taking steps to heal the increased sensitivity to pain that typically occurs with this illness. (No, it’s not psychological or “all in your head”.) See our discussion of this holistic approach: “Reversing Eight Vicious Cycles That Block Fibromyalgia and Chronic Fatigue Syndrome Healing”.[/quote]
  20. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    Has anyone talked to Dr. Montoya about the disaterous ;) length of his pathegeon study that he started about 3 years ago. I know someone said he increased the number of participants from 450 to 600! His study seemed to be closely in parallel with the pathogeon study being done by Lipkin and Horning. Are they going to compile into one study?
    heapsreal likes this.

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