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Respected Contributor
Posts: 4,427
Registered: ‎03-09-2010

Epstein Barr Virus....Chronic Fatigue...Hashimoto's

I had mono (bad case when I was about 15yrs old) and have had issues all my life with fatigue.  When I was 40 was dx with hashimoto's thyroditis....very high antibodies in the thousands....crushing fatigue and pain all over my body....heavy brain fog to say the least.  Got started on Armour and have gotten the pain somewhat under control unless my labs come back low. 

 

Fatigue is such a issue for me....told my Doc 10days ago at my annual and he ordered the testing for EBV  they came back positive elevated high.  It's considered reactivated.  This is the first time I have ever had it checked since I was 15yrs old and I suspect strongly that I have been battling this in my body for the last 38yrs.  

 

He re-checked my ANA testing which is negative for lupus.  I have had many other tests over the past 10yrs (except the EBV ones) and all have come back negative.  So I have assumed it was ALL due to my hashimoto's disease.  Which my labs came back low on this also....raising meds and am going to try a different brand entirely.

 

I have done a little reading online trying to see what I can do for the EBV....supplements like lysine came up.  Also lot's of articles say there is a connection with people who chronically have this elevated develop CFS.  

 

My doctor didn't recommend anything to me but rest....said there is no medication to help or treat EBV reactivated.  

 

Awhile back (Novemeber 2016) I posted here (I think I did LOL) about this painful AWFUL throat pain...felt like I had a pinecone stuck in my throat!  I couldn't speak it was so painful for days and days....my husband thought I was exaggerating.  I would look at him and text him in response for conversation.  Maybe this was a kick off of the return of this virus flaring up but I can tell you lack of strength, fatigue, brain fog issues and pain (like flu aches and pains) have been something I have been struggling with for yrs and yrs.

 

What kind of a physician would I go see if I want to find out if I have something like CFS??  Or are there natural path doc's that help with this EBV???

 

If anyone can relate to what I have posted and can offer some direction to pursue....I would greatly appreciate it.  

Honored Contributor
Posts: 18,222
Registered: ‎11-08-2014

Re: Epstein Barr Virus....Chronic Fatigue...Hashimoto's

So sorry you have been battling this.  How brave you are, and you have explained your complicated history very articulately. 

 

There are so many knowledgeable posters on here, I am hoping you will get some productive leads and answers.  All the best!

Valued Contributor
Posts: 974
Registered: ‎09-05-2014

Re: Epstein Barr Virus....Chronic Fatigue...Hashimoto's

I had Epstein Barr when I was younger and have battled chronic fatigue, joint/muscle pain my whole life. Chronic fatigue is difficult to diagnose, I'm not sure there is an actual test for it. I always thought it was more of a catch all when the doctors don't know what else to call it.

I've never tried a Naturopathic doc, as there aren't any near me, but what has made the biggest differences to me are lifestyle changes and some supplements. Most of these syndromes feed off of stress and sugar and cause systemic and chronic inflammation in the body. Cortisol gets released and makes the situation worse.Stress can be anything from what you typically think of (job, kids, etc) or things like you're too hot, too cold, workout was too intense...

I systematically learned to tune into my body's reactions to pretty much everything. I used to work several jobs, school, etc...burned the candle at both ends, the middle...the whole candle was in flames. I was also a sugar junkie, vascilating from sugar to salt.

I had to learn to balance my life drastically, most by trial and error. I cut down on sugar and eventually have gotten to the point where I don't eat much of it (that includes very starchy vegetables and limited nightshades like peppers and tomatoes) I learned to say no, and when I'm tired, I stop and rest. I stopped beating the tar out of my body in the gym and exchanged my routine to more walking (also relaxes), lighter weights, pilates..instead of running, stairmaster, heavy weights.

I have to sleep at the same time and for a certain number of hours. Lysine, Coq10, Magnesium and B vitamins have helped. 

Mainly, for me, I discovered it was the sugar. I realize now that it's cause and effect: when I eat sugar my joints and muscles WILL hurt and I will feel fatigued. 

A Naturopath may help, if you are fortunate enough to have one near you. Mainstream docs want to medicate you mainly. 

Learning to tune into your body helps. If you can, get a small book that you can carry with you and write down what you eat, what you do, how you feel, the weather and how your body reacts to xyz. It may seem daunting but worth it. You may have a pattern that you never knew about until you see it in writing.

 

Respected Contributor
Posts: 4,157
Registered: ‎03-04-2015

Re: Epstein Barr Virus....Chronic Fatigue...Hashimoto's

I am sorry to hear of your ailments,I suffer from Hashimotos ,Lupus and fibromyalgia..I have been to numerous Doctors, my endocrinologist helped me the most. I do best with holistic treatment. I got off all pharmaceuticals ( I was taking ten different ones) they made me feel worse. I now take none.

I wish you luck and better health.

Respected Contributor
Posts: 4,427
Registered: ‎03-09-2010

Re: Epstein Barr Virus....Chronic Fatigue...Hashimoto's

Thanks for the replies.....I was thinking of looking into the Lysine and a few other supplements to address the EBV specifically.  From what I have found online natural path doc's do recommend this and it is safe enough to try and see if it helps.

 

Fortunately I don't take much by way of prescription meds.....my thyroid meds are really it....and antihistamine once daily for allergies.  My doc gave me a script for blood testing called ImmunoCap....seems like a good idea.  This can help me with food allergies too.

 

 

Honored Contributor
Posts: 8,955
Registered: ‎03-10-2010

Re: Epstein Barr Virus....Chronic Fatigue...Hashimoto's

I absolutely agree that sugar, and really ALL REFINED CARBS, can be the enemy.

 

I feel MUCH better when I'm eating as low carb as I possible can. I get plenty of carbs from veggies, low carb fruit, and nuts.

Valued Contributor
Posts: 974
Registered: ‎09-05-2014

Re: Epstein Barr Virus....Chronic Fatigue...Hashimoto's


@violann wrote:

I absolutely agree that sugar, and really ALL REFINED CARBS, can be the enemy.

 

I feel MUCH better when I'm eating as low carb as I possible can. I get plenty of carbs from veggies, low carb fruit, and nuts.


@violann I totally agree! And for anyone reading this, thinking, "there's no way I could do that. i love pasta, bread, pastries (whatever) too much", don't think you have to go cold turkey and don't tell yourself that you can never eat ________. Just cut down, see how you feel.

I was the biggest carb/sugar junkie and I thought there would be no way I would EVER cut them out. I still eat bread, pasta, candy, even chips, but I learned what I feel like when I do eat them...and have to be prepared to decide whether it's worth it or not. Once you start feeling better physically, it gets harder and harder for the refined carbs to be "worth it"

Valued Contributor
Posts: 974
Registered: ‎09-05-2014

Re: Epstein Barr Virus....Chronic Fatigue...Hashimoto's


@tsavorite wrote:

Thanks for the replies.....I was thinking of looking into the Lysine and a few other supplements to address the EBV specifically.  From what I have found online natural path doc's do recommend this and it is safe enough to try and see if it helps.

 

Fortunately I don't take much by way of prescription meds.....my thyroid meds are really it....and antihistamine once daily for allergies.  My doc gave me a script for blood testing called ImmunoCap....seems like a good idea.  This can help me with food allergies too.

 

 


@tsavorite Lysine has helped me. It's pretty benign as a supplement goes, not like some vitamins that can be dangerous if you take too much. When I get run down, I up my intake of it until I feel better. I feel  better faster when I take it than when I don't.

Honored Contributor
Posts: 12,889
Registered: ‎03-09-2010

Re: Epstein Barr Virus....Chronic Fatigue...Hashimoto's

@tsavorite- I've had Chronic, active Epstein Barr Virus since late 1993. Probably, but not definitely, associated with Hashimotos.  

I initially saw an infectious disease doctor for it. 

 

I take an antiviral to help suppress the Epstein Barr as my immune system has chosen not to suppress it on its own. I take the generic of Famvir (Famcyclovir) and have for years. It's worked very well for me and has allowed me to live a pretty normal, but more sedate than I'd like, life. Famvir has been a god send to me. 


Why is it, when I have a 50/50 guess at something, I'm always 100% wrong?
Trusted Contributor
Posts: 1,939
Registered: ‎03-13-2010

Re: Epstein Barr Virus....Chronic Fatigue...Hashimoto's

[ Edited ]

@QuseFor real. I had a chronic, toxic level dose of Vitamin A last year as part of a protocol for an EBV reactivation. I have Hashimoto's and my doctor thought it might be a root cause. One of the components was an immune supplement that included had a large amount of Vit. A retinol. The dosage my doctor had me on amounted to 100,000 iu a day for over a month! (That is equivalent to 30mg of Accutane.) My skin and eyes started immediately drying out and I had MANY other symptoms of toxic level. I was so sick. I should have listened to my gut and stopped after the first week. I had trusted my doctor and therefore stuck it out for the full 5 weeks... Yes, the virus tests negative now, but at what price. I now have much drier skin, severe dry eyes, and my Vitamin A blood level still tests high after 6 months. I would take the Chronic Fatigue in a heartbeat instead.

Originally joined board 12-14-2004