RRMS and Epstein Barr Virus

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RRMS and Epstein Barr Virus

Postby mpalla » Wed May 08, 2013 7:01 pm

I was diagnosed in February and this week tested positive for ebv. I have been on steroids since diagnosed in February...now low doses 20 mg 2xs a day. Any ideas on how long this virus will run? My glands are swollen and hurt. I think the steroids aren't helping me get rid of this....any ideas?
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby jimmylegs » Wed May 08, 2013 7:54 pm

if you have the nutrient problems common to the average ms patient, the poor nutritional status can make you susceptible to various kinds of infection.

I helped a family member without ms kick her chronic EBV infection via nutrition testing, diet changes, and a therapeutic nutrient regimen. any chance of some nutrient tests in your case?

if so, serum zinc and serum selenium would be useful given the viral issues. for ms in general, serum vit b12, serum 25(OH)vitd3, and serum magnesium tests would also provide helpful info.
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Re: RRMS and Epstein Barr Virus

Postby milesap » Thu May 09, 2013 6:03 am

EBV has to run its course steroids are used to make you feel better but they do not treat the disease. EBV can last 2 - 6 weeks. In my case there was no steroids 30 years ago that treated disease so I was in the hospital for five weeks with swollen organs. That usually does not occur these days taking steroids will reduce complications. EBV will go dormant and stay in your system forever. Virtually 100% of the population has had EBV.
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Re: RRMS and Epstein Barr Virus

Postby jimmylegs » Thu May 09, 2013 7:34 am

my poor relative was so messed up, was dealing with the chronic infection for years :( a far cry from the norm.
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Fri May 10, 2013 3:16 am

Was told at appt...chronic fatigue syndrome. High number on blood test is 110. Mine...almost 500. Anyone else similar?
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby mmpetunia » Fri May 10, 2013 2:17 pm

hi,

is there a particular reason why you are still on steroids? i understand that they should be tapered off but nearly 3 months is a very long time even for tapering a megadose. while steroids are great anti-inflammatories, they have another serious side effect--they suppress your immune system. given that you have an active EBV infection, it concerns me that you are still on steroids. i was on 2 short low dose tapers in two weeks time at one point and even that was enough to give me a skin infection. in general, i NEVER get infections of any kind. it is rare, but that small amount of steroids was enough. if its possible, i would recommend being removed from the steroids as quickly as is safe. at 20 mgs that should not take long and could dramatically alter the course of your EBV once your immune system is no longer suppressed. in the mean time, the zinc and selenium as jimmylegs suggested could give your system a boost until you can do away with the steroids.
Dx: 9/8/11 RRMS
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Fri May 10, 2013 3:19 pm

My neurologist told me to quit steroids cold turkey. I went off and had the worst 3 days of my Ms life. Went to my pcp and they said if I need them to move, and live at that small dose..take them or half a pill. My body feels best on the steroids. My neurologist is way conservative...flipped her a few supplements and she didn't say yes or no just nothing proven. I am awaiting to get into a teaching hospitals ms clinic. At 41 years old too many lesions and questions to not be taken care of. Maybe I will try a taper on my own again and see if I end up in bed again. It scared me last time real bad. Thanks guys for the listening and suggestions. Zinc and selenium at what dose?
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby jimmylegs » Fri May 10, 2013 5:08 pm

hi :)
zinc citrate at 50mg per day balanced with 2mg copper, taken in the morning.
selenium (as selenomethionine) 200mcg per day.

you might want to consider boosting zinc and selenium-rich foods (in descending order).
zinc - veal liver, roast beef, and lamb
selenium - halibut, tuna, cod, shrimp (excellent..44-53mg per serving); sardines, salmon, turkey, barley, lamb, chicken, scallops, beef (all very good, 23-47mg per serving depending which food you choose.

to increase zinc absorption you can also cut back for a while on foods that tie up zinc resources - such as gluten, dairy, sugar, alcohol, etc.
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Fri May 10, 2013 5:48 pm

Thank you. To the vitamin store I go tomorrow. Do you do gluten and dairy free also? I have bought several diet books off Amazon...not knowing what to try. What book do you (others) base your diet on? I just feel alone trying to make important choices with all this.
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Re: RRMS and Epstein Barr Virus

Postby jimmylegs » Fri May 10, 2013 6:09 pm

no worries :) if you can't find 50mg zinc with the copper blended in, just pick up a separate bottle of copper citrate 2mg. or 3mg will do.

as for diet, i do gluten and dairy light, not free. I eat bread on occasion, I order pizza once a month if that. I take dairy in my tea and coffee, and nibble a little bit of cheese. I don't do milk by the glass. and I seldom eat sugary junk food. i'm not even much of a fruit eater.

I base my diet on nutrient-dense whole foods, aimed at correcting typical ms nutrient depletion issues. limited consumption of anti-nutrients. I also have spent a certain amount of time calculating out pro and anti inflammatory ratings on my typical diet, aiming for a healthy anti-inflammatory balance over all. it takes some time. I can link you up to examples of what I'm talking about, plus a couple useful resources, if you are interested.
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Fri May 10, 2013 8:31 pm

That would be great to have a bit of help. Do you need my email address? Or thru this forum? Thank you for the help. It's all overwhelming at times. Plus...being sick. Ugh.
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby mmpetunia » Fri May 10, 2013 11:09 pm

mpalia,

i would contact your doctor and explain that you wish to taper off the steroids very slowly. ask them for advice as to how to most effectively do this without causing excessive side effects. after 3 months i imagine that there will be some unpleasant repercussions to a taper, but with the docs help you should be able to minimize this. i would not attempt this without medical guidance. steroids are very tricky and it can be extremely unpleasant to quit cold turkey, especially after being on them so long. best of luck and i hope the supplements and dietary changes are helpful. EBV is NO FUN :(
Dx: 9/8/11 RRMS
Gluten and dairy free diet
copaxone x3: let's hope the third time is the charm!
http://mylaceybrain.wordpress.com
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Re: RRMS and Epstein Barr Virus

Postby jimmylegs » Sat May 11, 2013 4:48 am

hi m, I missed that bit about CFS and the high test. what were they testing exactly? and what were the units for those numbers you mentioned (ie, 110 and almost 500?)

i'll send you some links with more info. if you can get a doctor on board to order you some bloodwork, that's part of the best case scenario.
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Sat May 11, 2013 6:31 am

The copy he gave me says...Epstein Barr virus vca ab igg index 0 to .9 negative .91 to 1.09 equivocal 1.10-1.5 positive. Shows out of range then my number is 4.65 h.
He was testing that vitamin d2 and d. Vitamin d 25-oh shows 40. Vitamin d 25-h d2 shows 33. Shows normal is 30 to 100. I am on 2000iu a day of d3 now.
Doctor was testing because my fatigue is still horrible after my original attack where i lost my left side of my body. I am on Copaxone which I don't believe is doing me favors but awaiting to get into the ms center after being unhappy with neurologist.
My second MRI feb and now April showed a new lesion also and noted atrophy. Grrrrrrrrrrrrrrrrrrrrrrr.

Just trying to get well....all the conventional medical intervention first then figure out what's next.

Thanks again....you all are wonderful to find! I'm blessed. :) tkx.
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Sat May 11, 2013 6:36 am

Missed one...d3 level shows a 7. Normal level is the 30 to 100 ng/ml.
Diagnosed 2-13-13. RRMS.
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