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Carson41
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/6/2013 5:59 PM (GMT -7)   
Hey everyone I'm new here. I think I have chronic EBV? Well I know I got EBV in November but now it is back. I feel terrible. As I know most others do on here. It hits me really bad neurologically. Is there a special doctor that I can see for this? Are there any treatments for it? I can't seem to find many answers on the internet. Thanks

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 5/7/2013 5:35 PM (GMT -7)   
Welcome to our corner of the Forum. Yes, the EBV can be verified with a blood test that you can have your PCP/Family Dr. run for you. Unfortunately there are no treatments and no specialists for EBV and your regular Dr. may not know anything about it. Most effective treatments we get from each other and/or holistic doctors/practitioners. I should say the treatments for the symptoms we get because that's all that can be done is to treat/manage the symptoms. Don't get discouraged, it takes some time and effort but its doable and if you keep in touch with us, you will find the going not as hard when shared with people who know how and what you feel and are eager to share whatever kernel of knowledge they have with you to make your suffering a little less. Oh and definitely go to as many specialists as necessary for the myriad of symptoms you/we have. If you are having neurological symptoms see a neurologist, this disease is like a Medusa, so get as many champions as you can. And keep coming back smilewinkgrin
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 5/7/2013 7:48 PM (GMT -7)   
Carson41, I don't have EBV but I still wanted to welcome you to the forum. I can relate because I know how hard it can be to deal with a chronic illness. Like CFS, EBV is an illness that you have to look at each of the symptoms & find some relief from it. Finding a Dr who believes in your illness can be hard, so when you find one, hang on to them, lol. My PCP does not have much knowledge about CFS but does treat my Fibromyalgia, I have to find what help I can from others on the forums who know about CFS. Take care of yourself & come back to let us know how you are doing. We love to share what we find to help. Gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

visioncut
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/8/2013 6:57 PM (GMT -7)   
Carson

When I have reactivation of EBV, what works for me is the following:

A) Inmunoferon http://www.nature.com/ki/journal/v61/n5/full/4492952a.html
B) 2LEBV (Labolife Homeopatic antiviral) http://www.farmaline.fr/sante/commander/labo-life-ref-2lebv/ more info: http://www.labolife.info
C) Reishi Hdt

The three of them boost the immune system, atack the EBV and increase the NK cells so that you fight better the infection.

It would be important to do a serology of your blood to see wether you still show a positive IgM, or if on the other hand only a hight IgG to see if you are still fighting the past infection from November, or it is a reactivation.

Regards

C.

Kimmy1
New Member


Date Joined May 2013
Total Posts : 2
   Posted 5/13/2013 9:46 PM (GMT -7)   
Hi Carson
I think I have EBV also. In Aug. 2012 I was affected horribly by a virus. My digestive system shut down and I could barely walk due to the neurological symptoms. My MD thought it was from West Nile which I tested positive for. It could have been or it could be EBV which a naturopathic Dr. found to be positive (IGg) on a blood test. I was sick for 5 months straight and then started to improve. Over the first 4 months I found a naturopathic Dr. who did IVs of vit C. I also have internal tremors and every time I did the IV my tremors would go down and I would feel better. The IV also had magnesium and B vitamins. A Meyer's Cocktail is the same thing with less Vit. C but I was doing 50 g of C. When I felt well enough (fatigue was not so bad and the tremors were less and I could walk normal again) then I stopped the IV. I improved a ton but then got the flu 4 weeks ago and was down and out again. That is when I did the blood test for EBV. Now my Naturopathic Dr. said that I need continue to support my immune system. He gave me 3 different supplements (herbal) that will help my nervous system and I also take Calm magnesium which has helped my tremors and muscle twitching I started getting and I take 5000 mg of vit C (ascorbic acid) daily. This is the shortened version of what I have been through and tried because there were many herbs for my nervous system along the way but it seems that boosting the immune system is the best thing to do. I also quit eating gluten and too much sugar. I don't drink caffeine or alcohol either. Good luck.

Kimmy1
New Member


Date Joined May 2013
Total Posts : 2
   Posted 5/13/2013 9:48 PM (GMT -7)   
sorry - my naturopath gave me 3 different herbal supplements that will support my immune system, and that will in turn help my nervous system.

Angc
New Member


Date Joined May 2016
Total Posts : 1
   Posted 5/17/2016 8:19 PM (GMT -7)   
[Hello did you find o ut if it was ebv xausing tremors? Have your trenors improved?

quote="Kimmy1"]Hi Carson
I think I have EBV also. In Aug. 2012 I was affected horribly by a virus. My digestive system shut down and I could barely walk due to the neurological symptoms. My MD thought it was from West Nile which I tested positive for. It could have been or it could be EBV which a naturopathic Dr. found to be positive (IGg) on a blood test. I was sick for 5 months straight and then started to improve. Over the first 4 months I found a naturopathic Dr. who did IVs of vit C. I also have internal tremors and every time I did the IV my tremors would go down and I would feel better. The IV also had magnesium and B vitamins. A Meyer's Cocktail is the same thing with less Vit. C but I was doing 50 g of C. When I felt well enough (fatigue was not so bad and the tremors were less and I could walk normal again) then I stopped the IV. I improved a ton but then got the flu 4 weeks ago and was down and out again. That is when I did the blood test for EBV. Now my Naturopathic Dr. said that I need continue to support my immune system. He gave me 3 different supplements (herbal) that will help my nervous system and I also take Calm magnesium which has helped my tremors and muscle twitching I started getting and I take 5000 mg of vit C (ascorbic acid) daily. This is the shortened version of what I have been through and tried because there were many herbs for my nervous system along the way but it seems that boosting the immune system is the best thing to do. I also quit eating gluten and too much sugar. I don't drink caffeine or alcohol either. Good luck.
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