Treatment for chronic epstein barr

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with this for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.

Liked by mapchap, pijax, lioness, nacc ... see all

@jbri

Beware of doctors who insist that this is all in your head and prescribe antidepressants. I had a similar situation here when I had a severe recurrence of CAEBV (Chronic Active Epstein Barr Syndrome) a few months ago. Fortunately when I lived back east my doctor who diagnosed me had other patients with CAEBV. He knew better than to say it was all in my head.. He also told me that I'd have to find what worked for me in handling the symptoms. Afte3r 20 years that still seems to be true. I have used acupuncture in the past; it helped. I just found a reputable acupuncturist here in Tucson, AZ. While not as fast as I'd like, it is helping. I also am taking Vit D3, Ubiquinol and Vit C. Today I started Monolaurin, suggested by Jeff's doctor ( jeff49 @jeff49 above). Don't give up on yourself. And don't let anyone tell you that the pain and fatigue and lack of energy you are experiencing is all in your head. It's not.

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@jbri thank you for your kind words. It saddens me that doctors are unwilling to consider EBV as the cause of chronic illness, especially since it appears to have such a debilitating effect on individual lives. Personally, my life has been affected significantly. I can no longer walk my dog without pushing myself, even getting clothed most days I am ashamed to say takes me great time and maximum effort. I too miss out on a great deal of social events @mrmie due to the constant fatigue. I have medical insurance and intend to go private if my GP is not compassionate upon my next consultation.

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@johnbishop

Hi @katlyn57, @smcivor94 and @jeff49 — welcome to Mayo Clinic Connect. Thank you all for posting here on Connect. @katlyn57 and @smcivor94 in case you missed Jeff's encouraging post, here is a link to his earlier post on what helps him for chronic epstein barr:

https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/?pg=20#comment-252745

I'm hoping others will join in and offer suggestions on what helps them also.

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@johnbishop Have you tried fresh air Golden Milk in ice cube form? How was it ?

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@lioness

@johnbishop Have you tried fresh air Golden Milk in ice cube form? How was it ?

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Not yet. Hoping to make time to make some soon.

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@johnbishop let me know how it is I love it but wonder how it does frozen? Thanks

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@lioness

@johnbishop let me know how it is I love it but wonder how it does frozen? Thanks

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@lioness a contact I have in another group is big on turmeric and he gave me the following link on how to make golden paste and told me he freezes it in the mini ice cube trays for longer storage life. I'm guessing it should work for the golden milk too.
https://turmericaustralia.com.au/turmeric-paste/

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@johnbishop

@lioness a contact I have in another group is big on turmeric and he gave me the following link on how to make golden paste and told me he freezes it in the mini ice cube trays for longer storage life. I'm guessing it should work for the golden milk too.
https://turmericaustralia.com.au/turmeric-paste/

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@johnbishop Thanks I have a touchy stomach so Making a paste will be to potant for me I think.

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Just an update @mrmie @jbri my GP has referred me to an ID specialist so fingers crossed I am now on the road to making progress!

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@jbri

Jeff: I'm so glad you're you are having good results from the monolaurin and rei-shi mushrooms. Mine just arrived a couple days ago. And your information here is going to help me get started. I have started acupuncture treatments for fatigue, etc. I did this 10 years ago and it really helped. This time I have had four treatments; the results are slower. But this week I also experienced renewed energy even though the fatigue still prevails. Thanks much for the information in your post. It's much appreciated. JBrian

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Is there a particular brand of monolaurin that is recommended for efficacy and safety?

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Good question. I'm not sure of the answer. I'm using Solaray brand. But I just started it 2 days ago. So I'm a novice.

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@mmckee

Is there a particular brand of monolaurin that is recommended for efficacy and safety?

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Check out lauricidin.com. It comes in pellets so you have better flexibility with dosing and can start at a super low dose if needed. @mmckee @jbri

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I too had mono when I was a freshman in high school. I have never felt really great for any length of time. Now, at 64, I have an old mono case activated as well as an active new case. I've been told these should go away within 6 months but my numbers are dropping very slowly. My gut is a train wreck, having trouble getting my thyroid to stay where is should be and you can imagine how I feel. I'm going the integrative medicine route and have found hope!

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@mrmie

Check out lauricidin.com. It comes in pellets so you have better flexibility with dosing and can start at a super low dose if needed. @mmckee @jbri

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Thanks for the tip! I'll try it.

Liked by Marianne

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Just found this site. This is my first comment, and I haven't had a chance to read all entries. I have tested positive at my family doctor's office for mono for 2 years. (Tested every 3 months) My only symptom is chronic fatigue, and that I profusely sweat (just on head and face) if I attempt any task. I am scheduled to see a doctor of internal medicine this month. I am basically unable to function in anything. Can anyone give me imput if similar to mine, and any words of encouragement? Thank you

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@012064 Hi Back when I was in my late 20,s I had severe mono I had an extremely high coint which broke me out with a rash all over my body The Dr ordered me bedrest for a month and heavy duty vitamins I was still single so my Mom took care of me Im sorry that was so long ago I don't remember the shot or vitamins .In my 40,sI developed fibromyalgia whether this is related to the E.B virus or not ,no Dr has said.

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I am a 17 year old as well, suffering from CAEBV and CFS. I have missed my junior prom, almost half of my senior year, and more because of this illness. it is debilitating. I sleep 20 hours every day. My body aches, I have chronic migraines. Nothing seems to help. My pcp gives me antibiotics and steroids but that only works to get me on my feet for a week or teo. Then its back to being sick again. I have taken many precautions. I wipe down my desk every period, when I'm in school. I take half days, but I am constantly exhausted from even trying to get up. Please if you have any advice- tell me. I could use it. Anything is appreciated. Thank you!

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