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Virus related to fibromyalgia?
4 Replies
January - April 8

Was just having a look at the Pro-Health site Vavaughn recommended. They are great. This site has good, easily readable, recent information about viruses and their relation to fibro and related diseases - like chronic fatigue and brain fog.

Some interesting information about the HHV1 virus (herpes cold sore virus). Herpes is a dirty word (thanks to the 80's media hysteria) but let's get over it. The virus has been around since at least the time of the ancient Greeks. Most people are infected as children and develop an immunity. The Herpes Virus family includes at least 8 viruses (more may be discovered), linked to things like chicken pox, shingles, Epstein Barr and cytomegalovirus. The most recent "discovery" was Kaposi's sarcoma, or HHV8.

HHV1, 2 and 3 attack the nerves, and cause pain. Once you have the virus in your body, it never leaves, though it goes dormant - and a healthy immune system keeps it in check. It can be reactivated at any time by things like… stress... or Lyme Disease. (sound familiar?) Viral infections tend to "flare" when the virus has quietly replicated inside the cells; suddenly it reaches critical mass and then it all dumps into the body and causes a problem. As long as the immune system is working, it can fight off the virus. What if the immune system is impaired? Or what if the virus is linked with something else like a mycoplasma or bacterial infection?

There is recent research out linking Herpes-1 to cognitive problems and to Alzheimers. (And there may be a genetic susceptibility involved too.) Apparently, when re-activated, HSV-1 travels along the nerve cells and can eventually reach the brain. One article recommends IMMEDIATE treatment with antivirals if you have a cold sore. Most doctors don't bother to do this. (Advocate for yourself.)

So…I wonder if HHV1 (or another type) is connected somehow to brain fog, as well as to the widespread fibro pain now linked to the central nervous system. (HHV attacks the nerves and causes pain.) For example, the herpes virus that causes chicken pox seems to go away, but stays dormant and in later life, it can reactivate and cause shingles (which is different from chicken pox!). Most people only have one attack of shingles, but some people have recurrent shingles and a problem called post-herpetic neuralgia - pain that lingers for months or years at the site of the shingles attack. Perhaps there is some sort of herpes virus that shows up later as fibromyalgia and causes the widespread pain - but looks like a "different" disease than it first was. It could be something like a flu-like illness. Epstein Barr (HHV4) looks like a bad flu - but it can later cause cancers.

Search wikipedia - Herpesviridae to get basic information. Here's a list of diseases linked to Herpes, taken from there:

"Research is currently ongoing into a variety of side-effect or co-conditions related to the herpesviruses. These include:

Alzheimer's disease [[[[
(This database compiles Alzheimer's disease susceptibility genes related to the Herpes simplex life cycle)
atherosclerosis
cholangiocarcinoma
Crohn's disease
chronic fatigue syndrome [[[[
dysautonomia
fibromyalgia [[[[
Irritable bowel syndrome [[[[
multiple sclerosis
labile hypertension
lupus [[[[
pancreatic cancer
pancreatitis
pityriasis rosea
Type II Diabetes

[[[[ (my emphasis)

I'll stop here. It's interesting and I'm sure there's a lot to piece together. But I have long suspected that fibromyalgia might be a viral illness because of it's "flaring" behavior - and also because the pain is severe pain - and that's what most people (including doctors) don't understand. They don't understand how much it hurts!

 

vavaughn - April 8

I'd be interested to know how many of us have shingles? Isn't this also a types of herpes virus?

 

January - April 9

Yes. Shingles occurs if you have been exposed to the Chicken Pox virus (HHV3, Herpes Zoster or Varicella). The Chicken Pox clears up, but then the virus (a typical herpes virus) goes latent and lives in the body forever. It "hides" in the neurons and can escape the immune system. It can reactivate later in life and cause shingles - one or many very painful blisters and lingering neuralgia. (There is a new vaccine out that supposedly helps protect people from shingles.) Shingles is pretty common; the older you get, the more likely you are to have it - IF you had Chicken Pox. I had it in a mild form not once, but several times when I was really run down. Too late for me to get the vaccine. I was, luckily, treated with antivirals, and I felt a LOT better in many ways when I was taking them.

Yesterday I read that they think a herpes virus might be related to measles somehow. Supposedly you only get measles once, but there was one member of my family who got it repeatedly. And there are several types of measles - German measles (rubella) is different. I found several papers investigating a confusion in diagnosis. Apparently HHV6 and HHV7 cause rashes (roseola) that are often misdiagnosed as measles.

At the website immunityageing there is a paper stating your genetic "signature" influences how susceptible you are to infection with various viruses. They are investigating a connection between HHV1 and Alzheimers. There has been a huge increase in Alzheimers - and IF it is an infectious disease, it makes sense, because now we warehouse our old people in institutions where infection spreads rapidly, especially if no one knows what is really happening!

They also note in this same paper that HHV secretes an enzyme (DNAase) that attacks mitochondrial DNA!! Isn't that one of the theories about what causes exhaustion in Fibromyalgia?? That the mitochondrial DNA is not working - or that there is something wrong with the mitochondrial energy production?

Another thing they are investigating is co-infection with several viruses and what that might lead to. That is really interesting. Since most of the population is already infected with HHV of some kind, but it's latent - when you get another viral infection on top of it, that might lead to a new type of disease expression. Makes me think of what I was reading about weaponized mycoplasma - that these very simple bacteria forms had been spliced with the DNA from different viruses (including HHV) to make them more virulent.

If all this is true, then the best thing to do is support your immune system. And if this is a viral disease, we are going NOWHERE by treating it with antidepressants and anticonvulsants! We are simply selling expensive drugs and downing people out so they don't care any more. I'm amazed at how many of us take antidepressants and are really depressed! Antiviral drugs to treat HHV exist! Maybe someone should be doing a big research study on this! Maybe we shouldn't be going primarily to rheumatologists, but rather to infectious disease specialists, virologists, and neurologists. But FIRST, they'd have to know about this new research.

 

Cher0208 - April 11

January,

YOU ARE BEST!!!YOU ARE A WEALTH OF INFORMATION!

I LEARN SO MUCH FROM YOU AND REALLY APPRECIATE YOUR POSTS.

I TOO BELIEVE THAT WE ALL NEED TO BE DOING EVERYTHING IN OUR POWER AND KNOWLEDGE TO SUPPORT OUR IMMUNE SYSTEM. IT REALLY DOESN'T MATTER WHAT DIS-EASE WE HAVE. STRENGTHEN YOUR IMMUNE SYSTEM UNTIL THE DOCTORS OR JANUARY FIGURES THIS OUT. LOL.

I HAVE EPSTEIN BARR AND THE CANCER THING SCARES THE HECK OUT OF ME, BUT I'M NOT GOING TO FOCUS ON IT. GOING TO KEEP TAKING CARE OF MYSELF AND STAY POSITIVE.

XOXOXO
CHER

 

January - April 11

Hi Cher -- just read your beautiful post under "philosophical question." Really uplifting and nicely written! I think it's important to laugh too! It helps your immune system! I started to answer kvc's thoughtful post earlier today, and wasn't able to finish. But the karma thing you mentioned helps me get through too. I have learned so much about compassion by going through suffering myself, I think it has changed my soul, as have many amazing people who taught me a lot as they went through their own suffering (often worse than mine).

I'm so glad you found this information on viruses helpful. I have Epstein Barr too - I swear I got it from the pool at the "health" club! What the heck, something is gonna get you eventually. I don't worry about it - instead I learn about medicine and possible treatments to cure this mess. There ARE a number of new medications that work against viruses - they just aren't used very often! I think the body is a perfect machine that can heal itself if it is supported properly. For that reason, it seems you should listen to your body, and if it is rebelling against a drug, you should not take that drug. On the other hand, if a drug makes you feel better, maybe you should be listening to that. When I have taken antivirals, I felt a lot better! There may be a subset of fibromyalgia people who have EBV and might be cured with the right dosage and type of antiviral drugs - or at least helped. Can you imagine? Getting your life back? And certainly, they are nowhere near as rough on you as antidepressants.

And thank you for the kind words - and the laugh! (Someday, somebody WILL find the answer to this!) While googling, I happened to run across the name of a doctor who tests and treats FMS/CFS using a food allergy and viral approach. He has good ratings in several different places. Google Dr. Daniel Dantini. He looks very interesting, will order tests, and work with you and your dr. over the phone.

Something else I found out! I googled "porphyria awareness" and found the American Porphyria Foundation. I put some info about it in another post - hoping you would see it - did you? I called these people, and they were so helpful! Through this website you can get to a site that lists a LOT of drugs that can induce symptoms of porphyria!! Or google: "porphyrogenic drugs." WOW, that list was a revelation for me, as I have had major problems with many drugs on that list - doctors just said "oh well, you're sensitive to that" but nobody ever thought to check me for porphyria! People should know about this, so if they have a bad drug reaction, they can ask for PBG urinalysis right then and there. And, April 17-24 is Porphyria Awareness Week. Maybe the disease is not so "rare" - just "unknown." The website has ideas for educating people about this disease. I thank YOU again for educating ME about it!

And now, I have to force myself to take care and get some sleep. Hope you are doing well! AND, I really hope you soon feel well enough to go to college and follow your dreams. I think you would be excellent. : )

 

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