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Old 01-12-2008, 09:14 PM   #1
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Diagnosed with CFS - not convinced

I have a good friend who is only 22 years old, and probably one of the most active people I know. She is always on the move, worked out every day etc. She had mono back in may 2007. The doctors diagnosed her with mono because she was positive for the Epstein Barr virus and extremely tired. Since last may, she is still extremely tired, to the point where she cannot hold a job and sleeps most days. There have been several other symptoms that cause us to think maybe this is not CFS.

Even though she's always tired, she doesn't feel like she's in a deep sleep at night, and wakes up often
Weight gain - even though she hardly eats
Dry hoarse throat
Constant thirst
Mitral valve prolapse
Orthostatic hypotension

She has been diagnosed with CFS and tested several times for lymes disease (all tests came back negative). We are thinking there might be something wrong with hormones...She is 22 years old and running low on optimism... if there is anyone with a suggestion or any similar problems please respond...thank you.

 
Old 01-13-2008, 06:22 AM   #2
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Re: Diagnosed with CFS - not convinced

Hi Mooch, sorry to hear about your friend. She is very lucky to have you in her life trying to help her.

EBV can cause many many problems More than what the everyday run of the mill doctor believes. Have you looked up Symptoms of Epstein Barr on the net?

You might also want to read up on Dr. Martin Lerner and Dr. Shoemaker.

I have had HIGH titers for EBV and Ctomeglovirus for eons of years. And was always told by doctors....It is no big deal....ugh! I am here to say it is a BIG deal. the doctor that I am seeing now is helping me to unravel this pandora's box that lives in side me....lol....

He has had me on antivirals now for over a year and oh what a difference it has made.

These virus's are in the Herpe family. Gone untreated they can cause many problems..such as heart problems, brain issues, being fatigued, M.S.....ect ect...

Also she really needs a doctor that is a specialist in Lyme. My test also came back negative. And I had it! This bacteria is in the syphillis family and embeddeds itself in muscle, bone, brain (organs)...it doesn't like oxygen so it is hard to get a positive test from blood. It might be good if you posted on the lyme board and ask for a Lyme Literate Medical Doctor in her area, and get her there. It will save her many years of being ill if you can get her to the "proper" doctors.

Both of the issues I have spoke of normal every day doctors can not help you with these. They will pump her full of unnessary drugs and not the ones to help get her back on her feet. She may have to travel out of state for a good doctor. But will be worth the time and effort.

She is truly lucky to have you in her life!

I wish her lots of luck.....bacteria's, virus's, protozoa's, microbacteriums can be deadly or cause crippling symptoms....

Jodie



 
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Old 01-13-2008, 07:10 AM   #3
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Re: Diagnosed with CFS - not convinced

Has she had the thyroid completely checked, too?

 
Old 01-13-2008, 07:14 AM   #4
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Re: Diagnosed with CFS - not convinced

Hi, thank you so much for replying. Your message was a lot of help. Honestly i think finding the right doctor is the problem here. She has been pumped full of meds that are causing problems in and of themselves... You gave me some ideas to talk to her about, so thank you again!

 
Old 01-13-2008, 07:16 AM   #5
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Re: Diagnosed with CFS - not convinced

I'm not sure if that was checked or not, but I was thinking the same thing. Thanks for the suggestion. Jojo, did the antivirals help you? Thanks again everyone for replying, these suggestions are a huge help

 
Old 01-13-2008, 07:38 AM   #6
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Re: Diagnosed with CFS - not convinced

Your welcome....

The doctor that I see is a scientist/reseacher/doctor.....he follows Dr. Charles Stratton's protocol on bacterias, virus's....

If you read up on Dr. Charles Stratton you will find he has 3 offices in Nashville. You might want to check into the Vanderbilt Clinic in Nashville. This might be an excellent starting point.

Yes the antivirals have helped me termendously. I was having alot of problems on the right side of my head, pressure, and my thinking was waayyyy off for a few years...And I felt like someone had their hand on my head squeezing...my right eye was hurting real bad and reading up on virus's they love the temporal artery and the eyes...(herpes virus's)....I have been on high doses of valtrex and valcyte...and doing so much better!

And you are correct about the med's that are we are slammed with such as antidepressants, pain pills, uppers downers are NO cure for these things. And can cause soooo many other problems.

I don't "think" there is a real cure for virus's. But I do know you can get them back into dormancy....

If I remember correctly reading up on Dr. Lerner he puts his patients on High doses of antivirals through IV and claims the virus's can be eradicated....

Let us know how she does!

Jodie

 
Old 01-13-2008, 12:28 PM   #7
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Re: Diagnosed with CFS - not convinced

Quote:
Originally Posted by mooch9374 View Post
I have a good friend who is only 22 years old, and probably one of the most active people I know. She is always on the move, worked out every day etc. She had mono back in may 2007. The doctors diagnosed her with mono because she was positive for the Epstein Barr virus and extremely tired. Since last may, she is still extremely tired, to the point where she cannot hold a job and sleeps most days. There have been several other symptoms that cause us to think maybe this is not CFS.

Even though she's always tired, she doesn't feel like she's in a deep sleep at night, and wakes up often
Weight gain - even though she hardly eats
Dry hoarse throat
Constant thirst
Mitral valve prolapse
Orthostatic hypotension

She has been diagnosed with CFS and tested several times for lymes disease (all tests came back negative). We are thinking there might be something wrong with hormones...She is 22 years old and running low on optimism... if there is anyone with a suggestion or any similar problems please respond...thank you.

I am Epstein Barr Positive. When I went to have my blood tested, my antibodies were found to be very high. The doctor told me that my exposure to Mono was very recent. I recently found out that my supervisor at work came to work with mono sometime during the summer. The doctor I went to had no way of knowing this and still does not know it. I all of the symptoms you have listed above. I am a very light sleeper. I have gained a lot of weight in the past year. I can drink as many as four bottles of water during work and drink more at night if I don't control it. I have mitral valve prolapse. My blood pressure ranges from normal to low. These are all symptoms of Epstein Barr/Chronic Fatigue. Epstein Barr and thyroid problems can and are interrelated. Thyroid problems can cause Epstein Barr and Epstein Barr can cause thryoid problems.

 
Old 01-15-2008, 12:28 AM   #8
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Re: Diagnosed with CFS - not convinced

Quote:
Originally Posted by mooch9374 View Post
There have been several other symptoms that cause us to think maybe this is not CFS.

Even though she's always tired, she doesn't feel like she's in a deep sleep at night, and wakes up often
Weight gain - even though she hardly eats
Dry hoarse throat
Constant thirst
Mitral valve prolapse
Orthostatic hypotension
i just thought i'd mention that these actually are all extremely common symptoms of cfs - except for mitral valve prolapse, which may not be a direct symptom, but it is listed on a "ultra-comprehensive symptom list" as a "co-morbid entity" meaning that people with cfs have an increased tendency for mitral valve prolapse.

i wish you and your friend luck in finding answers and getting the help she needs, and i'm glad she has a friend like you

 
Old 01-15-2008, 12:18 PM   #9
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Re: Diagnosed with CFS - not convinced

Weight gain and constant thirst--diabetes?

Just throwing out ideas, here.

 
Old 01-15-2008, 01:09 PM   #10
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Re: Diagnosed with CFS - not convinced

has a sleep disorder been ruled out?

 
Old 01-17-2008, 03:01 PM   #11
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Re: Diagnosed with CFS - not convinced

Re Diabetes: unlikely, thirst is a symptom of type 1 but it is accompanied by weight loss and cravings for sugary foods, all the result of ketoacidosis. I'm not trying to nitpick, just noting that it's not likely on the books here.

(Regardless, a quick glucose sugar test would solve that question if there is concern.)

 
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