My CFS Bug

[Richard]

I'm a PWC of many years with a fairly typical presentation. The one really unique symptom I have is an old scar on my penis that becomes inflamed when I'm exposed to anything I'm intolerant to.
Normally there's a baseline of inflammation, but when I eat something I'm intolerant to, or am exposed to VOC's and such, the swelling quadruples. On top of this I get a couple of hardly noticeable pale specks on my glans. And perhaps most interesting is that while in remission awhile back I had absolutely no inflammation whatsoever.

So what do I do with this? I've never had any outward signs of STD's. I'm quite sure I have a pathogen that's responding to the immune reactions of my disease. Could this suggest the same bug is responsible for warping my immune system to begin with? Could this be THE bug?

HGRV's offered an explanation, as my situation resembles what they found in the XMRV macaque study:

-concentrations of the virus in the genitals
-virus is activated by immunological activity

Does anyone think it would be possible to interest one of our virologists in this? Being superficial the location lends itself easily enough to a tissue sample. From this point how hard would it be to find a virus? Perhaps I'm being ignorant, but I would think a researcher would jump at such an opportunity. I sent a message to what I thought was Dr Mikovit's email address but received no reply. Is there somebody I should contact, or should I just take my chances with a perhaps less sympathetic infectious disease specialist?

 

[maryb]

Well here's a strange thing Richard, nothing to do with virologists, but I was just looking at Klinghardt's protocol for mercury chelation and came across his neural therapy treatment, he views old scars as blocking the meridians, this reduces the ability of the body to get rid of toxins and thus heal, he injects old scars directly, interesting theory and one which I would accept having had very painful Japanese acupuncture on my back and neck( unlike the chinese) this one draws blood to open the pathways, very successful a few years ago for me.

 

[Sushi]

Does anyone think it would be possible to interest one of our virologists in this? Being superficial the location lends itself easily enough to a tissue sample. From this point how hard would it be to find a virus? Perhaps I'm being ignorant, but I would think a researcher would jump at such an opportunity. I sent a message to what I thought was Dr Mikovit's email address but received no reply. Is there somebody I should contact, or should I just take my chances with a perhaps less sympathetic infectious disease specialist?

Hi Richard,

Welcome to the forum!

I can only comment on one aspect of this: just going to an infectious disease specialist could be a bad experience. I would try to interest a researcher. Perhaps someone here can put you in touch with one who might be interested.

Best wishes,
Sushi

 

[Enid]

Interesting one Richard - I've had pale underskin small patches (well size of a droplet) appearing off and on in female parts - my Docs ruled out all the usual suspected diseases so really never solved. HGRV's could be the answer then. Can you pursue investigations to identify when they appear ?

 

[Richard]

Well here's a strange thing Richard, nothing to do with virologists, but I was just looking at Klinghardt's protocol for mercury chelation and came across his neural therapy treatment, he views old scars as blocking the meridians, this reduces the ability of the body to get rid of toxins and thus heal, he injects old scars directly, interesting theory and one which I would accept having had very painful Japanese acupuncture on my back and neck( unlike the chinese) this one draws blood to open the pathways, very successful a few years ago for me.

Hi Maryb,

Yes I'm familiar with Dr Klinghardt's work and the thinking on scars. I think they're energetically compromised and more susceptible to infection. I've a friend who had rhinoplasty and is now suffering with almost constant sinus infections. I think it's pretty much a fluke that I've such an obvious manifestation of infection with this. If it weren't for the scar I'd just have the white spots which are, as I said, barely noticeable.

 

[Richard]

Interesting one Richard - I've had pale underskin small patches (well size of a droplet) appearing off and on in female parts - my Docs ruled out all the usual suspected diseases so really never solved. HGRV's could be the answer then. Can you pursue investigations to identify when they appear ?

Hi Enid,

These spots are the size of a droplet and only appear when I sensitize to something and have a reaction. It only takes a couple hours for my inflammation and spots to appear. If you have a food or something you are intolerant to, test it out.

 

[Richard]

Hi Richard,

Welcome to the forum!

I can only comment on one aspect of this: just going to an infectious disease specialist could be a bad experience. I would try to interest a researcher. Perhaps someone here can put you in touch with one who might be interested.

Best wishes,
Sushi

Thank you Sushi, but I should admit I'm not such a stranger to these parts. I was thinking anonymity was the way to go in case I end up posting pictures somewhere. This might be the only way to interest a good researcher. If anybody knows a capable ME/CFS researcher like Dr. Klimas, Dr. Singh, etc., and has an email address I could send before and after pictures.