Too many blood vessels in fibro patients

Discussion in 'FIbromyalgia and Pain Research' started by KATHY WEBER, Apr 26, 2017.

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  1. KATHY WEBER

    KATHY WEBER New Member

  2. Remy

    Remy Administrator

  3. Merida

    Merida Well-Known Member

    I have multiple hemangiomas - in liver and in vertebrae - T8 / T9. I understand that estrogen can influence the occurrence of hemangiomas.
    If many of us have these blood vessel anomalies, it could be an important clue to underlying hormonal/ metabolic issues.
     
  4. WickedDreamer

    WickedDreamer New Member

    I know it's been quite a while since your post, but I wanted to add this and hopefully get the info to Cort too. (https://www.bioopticsworld.com/arti...ng-fibromyalgia-yields-75-pain-reduction.html) Device developed to treat microcirculation supposed to be on market next year. We'll see how this pans out. I would hope for a usable at home, but it'll most likely be treatment we have to pay for in clinics. Who knows if it will even be approved in the US or covered by insurance. Also there's a doc in Europe who has been doing hand surgery to supposedly treat/cure FMS for quite a while. Here's his website (http://fms-bauer.com/en/was-ist-fms/). I don't know any more info regarding his practice. Otherwise I know some people who can afford it are going to Israel for hyperbaric treatment. It's given 3 times a week over 2 months. I'm not sure if it can be done without Drs orders here. Online info is sparse and seems to indicate people getting hyperbaric to treat sports injuries. I wonder if it'll be the next boutique fad treatment. (Like salt caves and O2O therapy) Well if it is, at least we'd have access and wouldn't have to wait years for research it a doctor to agree. Makes me wonder about the highly contoversial peroxide therapy. Anyway, FYI I just finished 5 months of antiviral/celebrex with no results. I tested high in titre for EBV. Have had severe FMS and exhaustion fir 18 years after exposed to my sister just after she had mono. Also had hepB vaccine for job as Home Health Dietician. Now nearly bedridden for last 8 years. But after 5 months antivirals and zero results, just read that the antivirals don't work for EBV because it doesn't use the enzyme that the drug interrupts during reproduction after it comes out of the BCells which is the only time a drug or the immune system can attack it. So I stopped the treatment. And besides each of the docs using antivirals believes a certain virus causes FMS. I believe FMS and ME/CFS and possibly MS are all breakdown of homeostasis caused by several viruses or other extreme stress in genetically susceptible people. My mother also has primary FMS and my great grandmother had Chrohns. Ok, sorry for the novel. Feel free to repost all or part on other threads if appropriate. Good luck. And God bless and have mercy on all of us.
     
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  5. Kristine

    Kristine Member

    Hi Wicked Dreamer, I am new on here too and have had severe both CFS and FM for the past 15 yrs. It was EBV that brought it on, except I was extremely active, just thought I had sinus infection, my numbers were off the charts. And I had had EBV in high school even though Infectious Disease Doc said there was no way I could have EBV twice. That this must have been a cousin of the original " real EBV, I was so mad. She said exercise you 're just in need of exercise. Needless, to say never saw her again. I am mostly housebound, in the bed most days though I try to get up and sit in a chair in living room. I had asked people about progressing, would you say you declined each year, in a chaotic way or something else? Just seeing if I am the only one who every year can do less and less.
    Thanks
    Kristine
     
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  6. Merida

    Merida Well-Known Member

    Thank you for sharing!!
    So sorry I am late to reply. Horrible fatigue, helping with young grandkids. The hyperbaric oxygen therapy makes sense as it may push oxygen into the microcirculation and into the central nervous system - pushing thru a defective durameningeal system. My Mom and my son are both affected - son had definite, lab confirmed EBV at age 5 - followed by multiple neuro symptoms, including severe urinary frequency, irritable bowel, etc etc. My grandmother had rheumatoid arthritis, and possibly this as well. Think the risk factors have to do with Scoliosis and issues in the pelvis. Long story. The hand surgery and peroxide treatments make no sense to me. Thank you for sharing the fact that antiviral therapy did not help!
     
  7. Merida

    Merida Well-Known Member

    I am slow to reply, but want to add that my son developed CFS/ ME in 1986, age 5! After a well documented case of EBV. After about 4 months he started to improve, but any time he caught a cold or other virus he immediately regressed. This went on for years. Now at age 38, he still has symptoms. Got some help from Dr. Junger’s book, Clean Gut. But this is a big project! Shakes and supplements. But in one week he had lots of energy and mood Improvement. May be hard to maintain???

    I have read about EBV being used in biowarfare research and also early research to find a mechanism to carry genetic material into the nucleus of cells. So ????????
     
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