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sureimsore

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I see there had been a previous thread about this clinical trial. So supposedly there were positive results (although no results have been posted on the NIH database) and it has been granted fast-track status by the FDA, and phase III is scheduled for 2017.

I don't know how all the pieces fit together, but it makes sense that if you have any form of herpes virus that it could travel anywhere in the body, and if there is a problem with your nerves the outbreaks could be frequent. *sigh* I wish occasionally a doctor would check in with these posts, just to give us the science of at least the possibilities.

There is an interesting article, if you do an online search "the devil is in the details herpes fibromyalgia" you will find it. I think everyone should read it...nothing very complicated, and the writer uses good analogies/similes to explain. For those that know they have a HSV infection or suspect that they do this might be enlightening, as according to the Dr. of the study, it could effect the gut (maybe the reason for some abdominal issues?).

Well, just something to think about. I know it's an issue for me since I had a recent EBV infection a couple of months ago.
 

sureimsore

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Actually, and I hope this is OK to post, but here is an article, an interview with the doctor that has come up with this experimental drug. He discusses how he treats patients with fibromyalgia. I still don't want to do any drugs (at least for a while, or until/if I get worse), but, I would probably consider his regimen down the road, if I could find a doctor to prescribe it.
 
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DK_engineer

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I've been very interested in this approach to treating fibromyalgia. Dr. Pridgin's Phase 2 test results were surprisingly good with very few side effects. Maybe in a few years fibromyalgia will have a disease modifying treatment instead of just treatment for the symptoms
 

sureimsore

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I agree with you DK, but it sounds like this treatment will only work(?) if some type of the herpes virus is involved. But since it's so prevalent, I think it would help many. In the meantime, I just started adding Lysine to my diet yesterday; I woke up pain-free this morning, but developed some (not as bad as its been) as the morning goes on. However, since mine may be metabolic, Lysine may just be one of the amino acids I'm low on.
 

DK_engineer

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Yes, I think we are on the verge of being able to distinguish different types of fibromyalgia. Kind of like 150 years ago arthritis was arthritis, but now there are over 100 kinds of arthritis.

Glad the lysine is working for you!
 

Trellum

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As far as I know I don't have any kind of herpes ;) I do know what causes my gut issues though, it's my IBS and IBD :( They actually suspect there is a link between fibro and IBS, because most fibro sufferers display IBS symptoms too. I've been reading a book on the subject and makes sense, they have a theory about IBS and how our body might be over sensitive, and how our brain could be messing things up with its neuro transmitters and such.
 

lisasian86

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I'm currently off work with horrible lower back pain and when I called the out of hours docs about it they said it was probably because I'd recently had a Herpes outbreak. I wasn't aware of it until now but it makes sense, the herpes virus can get into the nervous system and do all sorts of things so causing back pain could easily be one of them.
 

sureimsore

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Hey lisasian, if you notice that you get increased pain with your OBs, maybe it's worth it to talk to your doctor about antiviral therapy for when it happens. Or do you use any supplements (lysine, zinc, echinachea)? Because yes, I think postherpetic neuralgia would account for a good amount of pain.
 

sureimsore

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Trellum, if you've ever had the chickenpox, you have a strain of the virus, it stays dormant but can manifest itself again as shingles. There are actually 8 types of the herpes virus that can manifest itself as disease in humans (wikipedia outlines them well). So if you ever suffer from chronic fatigue but haven't been tested specifically, it is possible that you could have EBV or CMV. But if you never had exposure to any of the strains, you are very lucky.
 

oportosanto

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That is true, some virus might become dormant and after some years are active again and we don't know what's happening...
 

lisasian86

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I actually had chickenpox and shingles before I was 2 years old. I was admitted to hospital and apparently a lot of doctors came to see me because they had never seen shingles in someone so young. I've often wondered if these virus's have had any effect on my health in older years, I suffered with frequent migraines as a child and various hearing problems when I was young. Now at 29 I keep having problems with labrynthitis which is effecting my balance and my doctor says the cause is viral.
 

TeeKae

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I read this book about a month ago. The New Fibromyalgia Remedy by Daniel C. Dantini M.D. He prescribes antivirals and getting tested for food allergies. I have had fibromyalgia for almost 20 years and have tried many things. Nothing has ever worked before. I eliminated milk, coffee and cheese from my diet and I take 500 mg of Valacyclovir at night before bed. I saw a fibromyalgia specialist in NYC who prescribed the antivirals for me. I FEEL LIKE I'M GETTING MY LIFE BACK. I have energy again. It took about 3 weeks for the antivirals to start working. I can actually go grocery shopping and biking in the same day. I don't have that never ending fatigue. I have never posted on a forum before but I wanted to get this information out there. I believe fibromyalgia is virus related. I am feeling better. Not 100% but over 60 %. I have been taking antivirals for almost 5 weeks.
 

Eyesup

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Hey Trellum, I know this is off subject, but recently my muscles in my stomach were ripping inside. I used reflexology on my feet (yes feet) and my stomach calmed down. I don't know much about how reflexology works, but this technique eased me enough to fineally fall asleep.
 
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