Avatar universal

Things That Make Me Go "Hmmmm...."

My mother was recently diagnosed with Sjogren's syndrome, which is classified as an autoimmune disease. When I checked out the possible cause and triggers for Sjogrens, I read that scientists think that the trigger for the illness may be a VIRAL or BACTERIAL infection.  Sound familiar ?? And yet some physicians still don't believe CFS and/or chronic EBV is real ! Of course genetics play a role too.. However it makes me wonder whether the virus or bacterial infection altered the patient's genes. Anyway I thought you all would find that interesting.

6 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Does your mom have EBV?Whare are her Sjorgin's symptoms?  

That link is quiet interesting.
Helpful - 0
Avatar universal

I don't think she's had her EBV titers checked. I know she's now on the same protocol that I'm doing and she's having detox symptoms as a result (this means that the protocol is working because it is killing the pathogens that are making her so ill). The treatment I'm doing is treating everything from sarcoidosis, CFS to autoimmune conditions.  
Helpful - 0
Avatar universal
Hi there; i see in a june 18 post you are on a "protocol" that seems to be working. Can  you tell me what that might be? I been throught the rounds, fruitlessly, trying to find any doctor who has an inkling of how to treat EBV.
Thank you!
Helpful - 0
Avatar universal

Hi Tracey,

How long have you had EBV ?  

If you'd like I can send you several different links to different research articles and various research studies, etc. I originally chose a low-dose antibiotic protocol and knew it was working because I was having herxing (detoxing) symptoms. This is normal because the pathogens that are making me so ill and suspected in causing my immune dysfunction are dying... so when you feel a little bit worse, then the medications are doing their job ! It is the same thing that lyme patients go through when they take antibiotics to kill the bacteria that is making them so ill. There are two physicians that I am aware of who successfully treated their own CFS using antibiotics.

There is a treatment out there now that is successfully treating lyme disease patients and chronically ill patients (including CFS, EBV) without the use of antibiotics ! I recently switched over and I was thrilled when I was having the same detox symptoms that I had on the antibiotic protocol.

I've found that there are no magic pills and that healing requires time and in this case... lots of work. The progress that I have made so far on both these treatments is that my tachycardia is pretty much non-existant now.... my adrenals are working again.... my allergies are even better and my intolerance to gluten is gone ! I also have a mole on my left foot that I've had since childhood that is disappearing. I mention this because many people on the original antibiotic protocol that I was on were also have moles disappearing and other skin changes. This tells me that my body is healing and I also believe that I am reducing my risk for cancer. I know that people with these chronic, inflammatory illnesses are at higher risk for cancer.

Let me know if you would like those links. I can give you many testimonial links as well.. including the link to the Roadback Foundation.

Hang in there... there is hope !

Helpful - 0
571361 tn?1221003690
I don't remember seeing this one from Writergirl1962, but then again brain fog.  Great information; I can't wait to start treatment.  Your links are great; you give hope to alot of us in many ways, thanks.  Like Writergirl1962, I was told there is no treatment and I'd just have to eat right, have a positive attitude, and get plenty of rest when it hits; also sometimes you can be down for 2 years (TRY HAVING A POSITIVE ATTITUDE AFTER THAT).


Helpful - 0
Avatar universal

Hi ! I remember having CFS symptoms after a severe case of mono when I was 18. I remember DRAGGING into work and immediately crashing on the couch when I got home. None of the physicians I saw had any answers. One physician in Urgent Care at least realized there was a problem (I was there every month with infections)..  he told me to get an HIV test. I knew HIV wasn't my problem, but I got the test and of course it was negative.

I think it was in the late '90's when I googled all of my symptoms and the CFIDS Association of America website popped up. I knew immediately right then that I had CFS (AKA: CFIDS, ME, post viral syndrome, chronic EBV, etc.) . And then I noticed... they didn't have a test to diagnose it, many physicians didn't believe it was real and there was no treatment ! That was difficult to read. So what I did was started to see these "alternative medicine" practitioners and they actually helped me. I should have continued to see them... but you know.. I was working a lot, etc. And then my health took a turn for the worse. But now I'm finding out that some physicians are having major success treating CFS. These treatments are time consuming and take hard work... but healing is possible. I've made so much progress already !!

Glad the information is helpful. I thank goodness my Endocrinologist put me in the right direction.
Helpful - 0
Have an Answer?

You are reading content posted in the Epstein Barr Virus (EBV) Community

Top Infectious Diseases Answerers
1415174 tn?1453243103
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods