Fibro caused by cold sore virus??? In Sept prohealth newsletter

Discussion in 'Fibromyalgia Main Forum' started by fibrobutterfly, Sep 11, 2012.

  1. Is Fibromyalgia Caused by ‘Cold Sore’ Virus? Alabama Researchers Bet It Is
    September 7, 2012

    “We may have found a rather big piece of the puzzle that no one has been able to figure out.” – 10-center phase II clinical trial of anti-herpes drug combo hopes to resolve the question

    Fibromyalgia and various gastrointestinal disorders may all be caused by a virus - specifically herpes simplex type 1 - according to University of Alabama virologist Carol Duffy, PhD, and Tuscaloosa-based GI surgeon/chronic pain specialist William Pridgen, MD.

    Assisted by UA’s Office for Technology Transfer, the two are partners in Innovative Medicine Concepts, a startup company that’s well on the way to funding a clinical trial of two ‘repurposed’ but undisclosed drugs with anti-herpes properties, as a novel therapy for fibromyalgia pain.

    GI Patients’ Relapsing Problems Sparked Experiment

    Dr. Pridgen, who has reportedly treated more than 3,000 patients with chronic gastrointestinal issues and, more recently, chronic pain, said his theory about a viral role began developing as he observed the periodic recurrences of problems among many of his patients with gastrointestinal “discomforts.”

    Theorizing that the underlying cause might be a virus, he tried prescribing a drug for these patients that had previously been shown to be effective for treating herpes simplex type 1 (HSV1, the virus that causes 'cold sores'). And in fact he found that patients responded positively.

    Then, because some of them also voiced other complaints, he prescribed a second medicine, which also happened to possess anti-viral properties.

    The result, Dr. Pridgen notes, is that patients began indicating that:

    • Not only were their GI problems much better,

    • But other problems, including chronic fatigue, fibromyalgia, depression and anxiety were improving,

    • And their energy levels were rising.

    Based on his observational study of these patients, he reports, he found the medicine combination had an efficacy rate of almost 90%.

    Drug Combo Hits Herpes Simplex Virus 3 Ways

    Herpes viruses persist in the body by becoming latent and hiding from the immune system in nerve cells. They are able to reactivate and travel along the nerve cell’s axon (the fiber that conducts nerve impulses from cell to cell).

    The two medicines work in different ways to counter viruses, Dr. Duffy explains.

    • “The first drug inhibits the virus from replicating at one stage of the virus life cycle,

    • “While the other drug inhibits it at another stage

    • “And, in addition to that, the second drug also inhibits the virus from reactivating.

    “So, you are basically hitting this virus in three different ways.”

    Encouraged by these results, Dr. Pridgen next filed a provisional patent on the repurposing of both of the drugs for the treatment of fibromyalgia and various gastrointestinal disorders. “Repurposing” because they had not previously been known as treatment options for those conditions.

    The Planned Phase II Fibromyalgia Trial

    The clinical trial Innovative Medicine Concepts has in the works, with FDA approval pending, will test the effectiveness of a combination of the two drugs in treating fibromyalgia. (Though a number of chronic conditions may be made better by this combination therapy, the researchers say they chose fibromyalgia as the first condition to study because it is the most severe.)

    When fully funded, and pending the FDA’s approval, the trial will:

    • Recruit 140 fibromyalgia patients

    • At 10 sites around the country.

    • With a projected launch date by February 2013.

    Dr. Duffy’s part in the study of HSV1’s potential role in fibromyalgia will involve two objectives. The first is to confirm the presence of the HSV1 virus in the affected patients. And if it does appear to play a role, a second objective would be to work on developing a quantitative test to determine whether a person has fibromyalgia.

    Presently, such diagnoses are based on patients’ subjective responses to physicians’ questions about their pain.

    Trial Will Involve Measurement of Signaling Molecules

    In potentially developing such a test, Dr. Duffy says she is focusing on signaling molecules in the body called cytokines. The body produces different levels and types of cytokines based on what it encounters, she explains.

    Accordingly, Dr. Duffy will obtain blood samples from the clinical trial participants and measure cytokine levels. Participants will periodically rate their pain levels during the course of the trial, and Dr. Duffy will study whether there is a correlation between the patients’ reported pain levels and the cytokine levels.

    If a correlation is shown, Duffy would then check cytokine levels in healthy people to gauge the typical difference in cytokine levels between pain-free people and people experiencing pain.

    This could lead to potentially pinpointing a cytokine level where fibromyalgia treatment would be warranted.

    And the lab work that Dr. Duffy does to document the trial findings could also lead to a potential diagnostic tool for physicians treating patients who exhibit fibromyalgia symptoms, the partners suggest.

    Pharma Co. Would Be Needed to Produce & Market the Therapy

    If the clinical trial and tissue study prove Dr. Pridgen’s theory correct, Innovative Med Concepts would then potentially approach pharmaceutical companies to gauge their interest in buying the patent and in making the drugs available for fibromyalgia and a number of other conditions.

    So, speaking of their potential ability to supply a big piece of the fibromyalgia puzzle, “It’s an exciting time for me, Carol and The University of Alabama,” Dr. Pridgen says.


    Dr. Carol Duffy, 205/348-0310,

    Dr. William Pridgen,

  2. I just posted the above and wondered how many got cold sores , I have for years, since I was a child, I always had them. I found this interesting.
  3. Nanie46

    Nanie46 Moderator

    I've never had any cold sores.
  4. Mikie

    Mikie Moderator

    What "causes" our illnesses. Infections, including those in the Herpes Family, may be a factor in triggering our illnesses or causing our illnesses to become chronic. Most likely, there is a genetic predisposition which causes our immune systems to overreact to pathogens, often causing high levels of inflammation.

    PWC often have chronic Herpes-Family Viral infections, Lyme and mycoplasma infections with rates many times those in the population at large. This may mean that there is a relationship between our illnesses and these infections but it does not prove causation. I can't count the number of times that researchers claim to have found the "cause" of our illnesses only to discount the theories later on.

    Researchers have found relationships between viruses and other conditions. For instance, there appears to be a relationship between the EBV, a Herpes-Family Virus, and one form of breast cancer. This is a concern because most of the population tests pos. for EBV due to infection or exposure. Still, not everyone gets breast cancer so there has to be another factor, likey a genetic one.

    There are two "C Words" I never use: Cause and Cure. We simply do not know enough yet and every time we think we know something, it causes even more questions to emerge.

    Thanks for posting this. ProHealth does provide the latest in research papers and abstracts. It's good for us to know what is being researched. I'm just skeptical, having seen these claims so many times over the years.

    Love, Mikie
  5. Just printed what prohealth study investigated.
  6. Mikie

    Mikie Moderator

    We always appreciate someone's sharing info. We also appreciate the opportunity to comment on the articles. If we don't agree with the article, it doesn't mean we don't appreciate your sharing it with us. In fact, it is an opportunity for us to share our own experiences. Thank you.

    Love, Mikie
    [This Message was Edited on 09/14/2012]
  7. klutzo

    klutzo New Member

    I have had a "classic textbook case of severe FMS", according to my doctor, for 26 1/2 years now and have never had a cold sore in my life.

    I would rather be skeptical, and end up pleasantly surprised, than get my hopes up yet again and be crushed yet again when it fails to pan out.

    It is always gratifying to see that some research is being done, however!

  8. Mikie

    Mikie Moderator

    Never go away. It is possible to have the one which can cause cold sores without actually getting the sores. We can test pos. for EBV even if we never got sick with Mono. It's possible to test pos. even if we were ever exposed. Researchers are looking for relationships between viruses and other illnesses. A classic example is Chicken Pox and Shingles. Recent research has shown a relationship between EBV and certain types of breast cancer. Still, research can't prove that these viruses "cause" other illnesses. In the case of Shingles, though, it is the Chicken Pox Herpes Virus which reactivates as Shingles.

    All these pathogens are so much smarter than we ever knew. They will manipulate the body in order to thrive and, often, under the immune system's radar. I do not think we can heal until we address our chronic infections.

    Love, Mikie
  9. nah.stacey

    nah.stacey Member

    I have had cold sores all my life and it is surely viral. However, I have always thought that Fibro/CF was a viral thing. It feels viral, it acts viral, it cycles like a virus. Could it be???????
    I am most interested in their findings and even went as far as to email Dr. P. to suggest my home state as one of their test sites. Heaven knows we have enough people here with this DD.
    We do have Dr. Lucinda Bateman here but her waiting list is sssooooo astronomically long, its years out.
    Will keep you posted for those interested.

  10. I just hope they keep doing research, but I am doubt they will figure it out in my lifetime.
  11. Mikie

    Mikie Moderator

    People were absolutely convinced that they had found the "cause." Every few years, this happens. As Jam pointed out, a one-virus theory does not explain all the people whose CFIDS/ME and/or FMS were triggered full blown by a bacterial infection, trauma, stress or some other assault to the body.

    Every time this happens, I just figure that researchers may find something useful which will help us, even if it's just to eliminate the virus du jour as the cause of our illnesses.

    Seems that research into our illnesses just opens up more questions rather than answering them. Most of us are glad that someone is doing research but I'm not holding my breath that the Herpes Virus will be identified as the cause of our illnesses.

    Love, Mikie
  12. Charmar

    Charmar New Member

    Thanks for your post with good information regarding on-going research on fibromyalgia. I have had fibro for close to 30 years. I went through the primary stages of "IT is all in your head" years, NSAIDS, and finally, resorting to relaxation techniques, physical therapy and other non-drug therapies to get relief.
    I believe my mental attitudes about this syndrome is and has made a significant difference in how I cope from day to day.
    Weather changes are triggers as well as other types of stressors-relationships, other illnesses, etc. My symptoms wax and wane, but over the years, the flares hurt more and fight of the depression that often comes from chronic pain.
    People who don't have this challenging condition are often a bit critical or look at you in disbelief when you were doing well one day and later that day, you are not able to move an arm or leg easily and are really tired.
    I look forward to the day when fibro will become a syndrome of the past and a cure is found.
  13. cinbad252525

    cinbad252525 New Member

    I have had cold sores since I was a child. I have had two episodes with cold sores on the eye in the last six months. I had never heard of such a thing! Besides, being extremely painful; it is annoying. Would love to get in on the clinical trials. How does one?
  14. Mikie

    Mikie Moderator

    I hope you have gotten antivirals for the eye infection. Don't want to scare you but that can cause blindness. Before I had to have my eyelid surgery, I had to take Famvir to prevent a Herpes infection in my eyes. Herpes Viruses never go away; they can become latent in the body only to reactivate when one gets sick, run down or injured.

    When I took the Famvir, I went into a complete, but temporary remission. My doc put me on Acyclovir for 1 1/2 years, pulsing it to see if I could stay off of it without the swollen lymph nodes and sore throats returning. The one I have is not the one which causes cold sores but we don't know which one it is. It's likely EBV, CMV or HHV-6.

    Have you asked your doc about taking an antiviral for a while to drive the virus into latency? Might be worth a try. Good luck.

    Love, Mikie
  15. messed-up

    messed-up Member

    I've been doing online research for several years for health reasons. I tested positive for the ANA test but later found out I had shingles which is a form of herpes. It must be why I tested positive for the ANA test. The rhumy looked at my labs and said I didn't need to see him. I'm researching herpes now and just started taking acyclovir. I'm looking at the lysine/arginine link, too. I had no idea about that. Nobody mentions it. Even when you are desperate for help. All this research is exhausting but it's the only way I got answers. The Dr's were pretty dismissive, which is disturbing. I found a link that said CFS was connected to the herpes virus. Even if you don't have the rash. I'm also battling breast cancer. I had surgery for that yesterday. Just thought I'd add my two cents here in case it helps anyone.