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Chronic Fatigue Message Board


Chronic Fatigue Board Index


:wave: Hi L.B and Serenity.....Welcome to the board! :)

I "USE" to have high SED Rate....many, many years of it. These are the things that I had....

Lyme Disease bacteria (s) , Chylamedia pnumoniae bacteria, Babesia (malaria), Bartonella (bacteria), Epstein Barr Virus, Cytomeglovirus, and shingles...And who knows what else I had along the way....

I was told I had Fibro, CFS, arthitis, osteoporis, gullian;s disease, hypothyroidism, degenetative disease, OH MY GOSH AND SO MANY ,MANY MORE CONDITIONS THAT IT WOULD TAKE ME ALL MORNING TO SIT AND TRY AND REMEMBER...They one I really liked was my neck and back always hurt...They told me I needed to have my NECK FUSED! :rolleyes: And needed surgery on my wrist for tendenitis...ahhhh...

Well it has taken many years to unravel all of this..And alot of the problems I ran into was finding out especially since I have been on these boards...That TEST FOR ANYTHING THERE IS NO GUARENTEE ON ACCUARACY...:eek: So if you have a negative then they leave it as you don't have this disease or condition...My Daddy had cancer and NEVER showed a positive for it up till the day he went to Heaven....

The other test you are referring too. I just don't remember this test. But I am sure I had it. Since I went around 20 years of being passed around to doctor to doctor.

But what both of these test mean is you have inflammation or infections going on. Whey you research them on the net...they tend to give the examples of Lupus ...This DOES NOT mean you have Lupus..it is just an example. You can have ANY type of bacteria (s) going on. I;m not sure if it also means virus's . That is something to look into.

I am sad that you both are going through all of this. But I feel you are one step ahead of the game beings you both are on this board. There is alot of knowledge here. Like all of us you truly need to whittle away at your conditions. In my heart from what I have read "WHEN" you find the problem or problems then you'll beable to treat them and get better.

In my case looking back at test and doctor's notes and letters...I started getting tested for Lyme and syphillis around late 80's. One test showed positive then I went back got re-tested it showed negative and they went on that..

IN 1992 I had 3 ticks on me and was extermely ill by the next day. But did I have Lyme before that? And beings NONE of my test showed positive but only a few bands here and there...NO ONE WOULD TREAT ME! And I just got the "it;s all in your head and you have fibro and CFS...well you both, I am sure know this routine...8 years AFTER I had been bitten I finally found a doctor that went on my symptoms. And for 7 years I was treated with antibiotics...

Okay so now I am done with that...but still picking away ...Now it is getting the EBV and CMV under control ...

Might I suggest IF you have HIGH levels of one or both of these virus's then find a doctor that will treat you with high dosages of Valtrex. It is expensive and hope you both have insurance.

My thoughts...don't rule out anything. Go on your symptoms and read up on Lyme Disease it is the number ONE fastest growing disease. Doctor's do not like to treat you. There's alot of political stuff behind the scenes. Don't let ANY DOCTOR tell you it is not in your area. And DON'T let ANY doctor tell you that EBV and CMV don't cause your problems either...

You just have to find that ONE doctor that is gonig to help you and not down you for anything you believe. I have found TWO in 20 years....yikes not saying much for those docs out there...

These are my suggestions on learning and researching...Read up on Dr. Charles Stratton and his protocol for Fibromyalgia. His stufies show that we ALL HAVE Chlymedia pnuemoniae and it is like the Lyme bacteria where it gets into your muscles, organs, bone ect. The doctor that I am seeing now treats this bacteria for Fibro patients.

Also I learned form thsi board read up on Dr. LERNER and EBV Find a doctor to go on his protocol ...

I would also try to get to a Lyme Literate Medical Doctor. They are expensive but they are specalist in dealing with Lyme. IF this is what you have then you don't have to keep bouncing around. Check out the lyme board.

I have read that there is a HUGE percentage of people that are being mis-diagnoised and are in mental hospitals, kids with ADD, people with Alshimers, Dementia, FIBRO, CFS, ect ect that actually have Lyme. And from my experience what I have been through...I don't doubt this a minute...

Well sorry this is long. Having my morning coffee. haha...Know that your not alone. But I wouldn't mess around anymore with your G.P's they know nothing. You both sound like it is time to find the best SPECAILIST there are.

Good Luck to you both I hope you find answers soon!

:D





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