all Chronic Fatigue/M.E. Fibromyalgia

Is One Of The Many Herpes Viruses Responsible For Your Fibromyalgia and CFS?

March 2

Does the term ‘Herpes Virus’ strike fear and loathing in your heart?

So, is one of the many Herpes viruses responsible for your Fibromyalgia and CFS? First, let’s dispel some of the myths & prejudices against that dreaded term: ‘Herpes Virus’...

  • There are 8 Herpe Viruses known, not just genital herpes~

  • Not all Herpes are sexually transmitted~

  • Most people (90%) have a form of Herpes virus living in their bodies, so it is NOT some form of deviant condition belonging to a degenerate minority~

Basically, don’t freak out if you or someone you know is diagnosed with Herpes. In fact, did you know that the Epstein Barr Virus (most noted to be a common cause of Chronic Fatigue Syndrome), is really one of the Herpe Virus strains?

Known as Human herpes virus 4 (HHV4), it is one of the most common viruses found in the general population. Epstein Barr (aka HHV4) is also known as mononucleosis. And again, while not necessarily the sole reason for CFS, many of those who test positive for EBV, will develop CFS/ME.
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This ‘Ted Talks’, is worth the watch. This young woman, who has manifested severe symptoms of the disease, gives an excellent, informative presentation:

 

 

 

 

It’s funny how doctor’s have no problem believing in EBV. Why? Well, because HHV4 has definite ‘biomarkers’. These are measurable substances in an organism whose presence is indicative of a disease or infection.

At this time, CFS and FMS have no known biomarkers. This could possibly be due to the fact that CFS and FMS are often a ‘dumping ground’ diagnosis.

In other words, the diagnosis is often given when a series of symptoms are present, but no definite lab test shows positive for certain diseases. This is why diseases such as Lyme are often misdiagnosed as Fibromyalgia.

ChronicFatigueSyndrome and Fibromyalgia are often a 'dumping ground' diagnosis. Click To Tweet

 

Is One Of The Many Herpes Viruses Responsible For Your Fibromyalgia and CFS?

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Is One Of The Many Herpes Viruses Responsible For Your Fibromyalgia and CFS?

  • Make sure if given a FMS/CFS diagnosis, that your doctor tests for the presence of HHV4. The problems could be arising from EBV latent activation (like mine).

  • If you do have HHV4, make sure to take extra pre-cautions during a flare to not pass it along. It seems to be controversal whether or not the virus is contagious in its latent re-activation stages. I’ve read ‘yes’, but my doctor has told me it is not…better safe than sorry. This means: no kissing, no sharing utensils, no sharing drinks/food, ect. Nothing where saliva can be exchanged.

  • Keep spreading ‘awareness’. Be pro-active with your diagnosis and condition. Become the premiere ‘expert’ in your own healthcare with information, resources, and the pursuit of a physician that is the right one for ‘you’~

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22 Comments

  • Reply federica March 3 at 6:23 am

    hi Kristine, i’m Federica from Genova, Italia.
    sorry for my English!
    I have a diagnosis of fibromyalgia since 2005, and it all started with a great regret and with mononucleosis.
    the video is really touching.
    thank you for your commitment!
    Federica

    • Reply kristine March 3 at 9:11 am

      Hello Ferderica! Thank you so much for your comment! I am sorry that you are suffering with FMS. Like you, I know that EBV contributed to my own development of FMS & CFS. Hope all is well in Genova 😉

  • Reply Valerie March 3 at 8:28 am

    Thank You so much for posting this. It has given me hope and comfort that I am not alone in this. I have never heard that connection to suicide, but deeply understand it. I am grateful to not have the severe extent of so many of the symptoms like sensitivities to light and sound and touch like those in this video, but they do greatly affect my everyday life. It is difficult for those family/friends to understand what living with these diseases is like. On good days, out for groceries, on a bad day, bed. Sunshine and warm weather are not the joy they used to be. Now summers are spent indoors (allergies also) many days with the curtains closed as light hurts. I appreciate all of the people who actively search and share. Thank You Kristine.

    • Reply kristine March 3 at 9:10 am

      You are so very welcome Valerie. I am glad this brought a measure of comfort to you. I connected with the young woman in the video as well. Have a blessed day Valerie, and thank you ♥♥♥

  • Reply Sharon Hutchinson March 3 at 9:53 am

    I have found that a lot of doctors are simply ignorant of the latest research and our new understanding of many diseases. It is often not his/her fault since they are extremely busy people. This causes them to inadvertently lag behind and still stick to older theories.
    Epstein-Barr has been one of the viruses that many years ago had been proposed as the cause of CFS. The theory had been quickly rejected way too soon (remember “The Yuppie Disease” tag?). But Herpes viruses should be given another look. Something has to cause Fibro/CFS. Now there is a commercial about Hep C and how it can lie dormant for decades and that “boomers” should be tested for it. Perhaps HHV4 might be given the same attention. We can hope.

    I went through 13 doctors and many long journeys only to have one doctor say it was all in my head and kept insisting I must have suffered abuse as a young girl, thus the conversion theory talked about in the video. Just as a laugh (ha, ha), the expert on fibro and the head of the department in the teaching hospital told me that it was just a “trash basket diagnosis”. And that was said by the doctor who was supposed to be THE expert. Finally, a proper diagnosis was given by a doctor who was kind, understanding and open to the fact that medical science still does not know everything.

    The clueless doctor mentioned above caused me to cry all the way home during a train ride that took two hours . One time my husband had to grab me as I opened the car door and wanted to jump out into the heavy highway traffic because yet again, a doctor told me it was all in my head. Suicidal thoughts also rear their ugly heads–what kind of life can one have when it feels like the life force itself is draining out of our bodies?

    Thank you Kristine for putting up this very, very informative video. I could cry for that poor woman. She has been hit hard and also has had to suffer diagnosis that were also not only wrong, but insulting. Someday this disease can be caught in its early stages and a treatment given that will make sure others do not have to suffer as we do.

    • Reply Valerie March 3 at 1:51 pm

      It feels like the life force itself is draining out of our bodies. I have never heard it put like that before but it is perfectly said. That and pain. It does look like there is attention being paid to this now. Thank you for sharing. There are others unfortunately who share this. It is good to know there are people who really understand what our lives are like. My friends and family try their best. Once when my sister had a bad flu and described her symptoms and said if this is what you live with every day……..I cannot imagine. That was only a part of it. My friends understand if I have to back out of plans last minute or that I rarely make plans at all. I am lucky to have these people in my life. Mostly I cope by having 2 lists, one for bad days and one for good days. I do what makes me calm. I wish you well, and join with you in finding help. Valerie

      • Reply kristine March 4 at 10:05 am

        Thank you Valerie. We all know exactly what you mean. Like our blood is replaced with cement sometimes, right? Keep on keepin’ on girl! 😉

        • Reply Valerie March 5 at 1:48 pm

          Right! Thank You and thanks for sharing with this outlet for comments. In Toronto, Environmental Studies at Women’s College Hospital is taking in information from patients for Fibromyalgia and Chronic Fatigue, Environmental chemicals etc. so there is research and information being done that way. Things are beginning to be addressed for us. I had an appointment there and learned a lot and hopefully my information will be of use to someone someday.
          Be Well
          Valerie

          • kristine March 6 at 9:59 am

            Definitely Valerie! Keep us informed, and good luck!! 😉

    • Reply kristine March 4 at 10:06 am

      Glad this helped Sharon, and thank you very much! So thankful for people like this who choose to share their experience with the rest of us. It is so helpful…♥♥♥

  • Reply Kathy March 3 at 9:57 pm

    Wow, that was extremely moving. She expressed our autoammunine diseases issues to the tee. At least I don’t feel so alone anymore with communities such as this one . By sharing and gathering information we become stronger and as a result better in many ways. Thanks so much for sharing. I also wanted to share that I have been on the LDN for a week now . I am not seeing or feeling much different. I started on 3 mg and will move up to 5 mg after this first month. Will keep you posted. Actually there is one thing that is better since starting LDN, my sleeping is better. I still take Ambien at night for sleep but am thinking I will start lowering the dose . Once again , thank you for having this blog and for sharing your gift with us.

    • Reply kristine March 4 at 10:03 am

      Hi Kathy! Glad the LDN is helping with sleep, but remember that it can take a fairly good amount of time to accumulate in body and begin to work with immune system. Also, trying to get the right dosage is a key component. Good Luck! 😉

  • Reply Elizabeth March 7 at 9:39 am

    Thank you so much for participating in our chronic pain & chronic illness link up party at The Unbroken Smile. I’m sure our community will love your article, I’m sharing it now! Please join us again next week. ((Gentle Hugs))
    Elizabeth recently posted…Chronic Pain and Chronic Illness Link Up Party 4 | Week Of March 5My Profile

  • Reply Sheryl March 7 at 10:22 am

    Interesting to know, definitely going to check them out thanks!
    Sheryl recently posted…Not a Big Deal, Until You Experience it for RealMy Profile

  • Reply Brittany W March 8 at 5:22 pm

    I would have never suspected that the herpes viruses could cause chronic fatigue syndrome. This is a really great thing for people to look into if they’ve been diagnosed with CFS.
    Brittany W recently posted…Three Reasons to Celebrate Right NowMy Profile

    • Reply kristine March 9 at 11:59 pm

      Hi Brittany! Yes, it makes since considering the way the body responds to viruses and how CFS manifests itself physically. Interesting stuff!

  • Reply Ruth March 12 at 9:46 pm

    The herpes virus seems to be the culprit of my ME/CFS. Just found out recently, after four years of being mostly housebound. It took me seeing an integrative GP who specialises in these immune-related conditions. The levels of HP4 in my blood indicate it’s an active virus in my system. Go figure! He’s going to try me on antivirals next month. Have you tried antivarals??

    • Reply kristine March 13 at 7:03 am

      I have not Ruth, but I hope it goes well for you. Keep me informed, and good luck! 😉

  • Reply Marilynne April 24 at 7:31 am

    Ruth and Kristine,
    I have been on 2 anti-virals for Herpes 6 since Jan. 2014. My original doctor, the late A Martin Lerner, was the first to do complete labs to find my F/CFS/ME. You can still find his website and research. I was close to bed-ridden when we began my treatment. We traveled to Detroit from KY (& hours driving one way) every 2 weeks/9 times and then once a month until he passed. After Dr. Lerner passed Sept. 2015, I was fortunate to find a local doctor who studied Dr. Lerner’s research and my records and continued my treatment. Every few months, we see an increase in my energy stores as well as less pain. I do Chinese acupuncture every week as well as an Atlas Orthogonal Chiropractor, which is NOT what I call crack and pop! Today, I am able to help care for my granddaughter and 89 year old father. I do not know if I will ever be a consistent 100%, but I will take where I am today.

    • Reply kristine April 25 at 4:19 pm

      Thank you for this Marilynne! I will definitely check Dr. Lerner’s work out! 🙂

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