RRMS and Epstein Barr Virus

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lyndacarol
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Re: RRMS and Epstein Barr Virus

Post by lyndacarol »

mpalla – Like mmpetunia, I am concerned about the steroids you have been taking since February. There are many SERIOUS side effects possible with steroids: osteopenia, osteoporosis, even necrosis in the joints such as the hips. Cases of diabetes have developed in people taking steroids long-term or taking high doses of steroids.

I encourage you to discuss these possible problems with your doctor. Further testing, such as DEXA, might be a good idea to check on your bone health.

I hope we have not exchanged a possible short term benefit for a long-term problem. I have used steroids a couple times in the past (they did not improve the symptoms for which they were taken), but do not plan to use them in the future.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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jimmylegs
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Re: RRMS and Epstein Barr Virus

Post by jimmylegs »

good one LC.

on corticosteroid nutrient depletion:

http://www.alive.com/articles/view/1957 ... _nutrients

Corticosteroids
Steroid drugs are used as anti-inflam-niiilorics and for a wide range of diseases, including dermatitis, autoimmune diseases, aslluna and allergic disorders. Drugs include costisonc. hydrocortisone. prednisone. triamci-nolonc. dexamalhasone and azulfidine
•Vitamin C: Steroid overuse can deplete vitamin C stores, leading lo easy bruising, lower immunity, asthma and allergy-like s\mptoms. and poor wound healing.
•B-Complcx Vitamins: Tolic acid depletion can lead to anemia and cardiovascular disease. Steroid use can also raise blood sugar: chromium might he needed as an additional supplement.
•Potassium: Loss leads to edema, irregular heartbeat and muscle weakness. Supplementation amount are determined by blood levels.
•Zinc
•Selenium
•Calcium/Magnesium

you can totally see the osteopenia/porosis dynamic there! the last three (four) are major bone health nutrients and there are some linkages and interconnections in there ie low magnesium affects potassium status and so on.

I can't believe how many of the nutrients in that list are already depleted in ms. scary :S
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mpalla
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Re: RRMS and Epstein Barr Virus

Post by mpalla »

I see your concern with the steroids. I didn't really realize the nutrient depletion aspect till the other day and blood work and articles you have attached. Yes...I have read on the steroids but didn't really think about it. As I said I have felt so lousy and trying to live my life a little and maintain my sanity. I will call pcp and ask on taper. Need more info on a good diet and the vitamins and minerals are a help.
Jimmylegs I see the alive.com you copied. Obviously a good start for reading on nutrition? I was (before diagnosed) a fat girl trapped inside a skinny girls body....so I always ate whatever I wanted and how ever much...no repercussions I knew of. Only have cut out real bad stuff till now and pushed leafy greens and veggies. No sweeteners, dairy, non organic meat and my koegel frankfurters or processed box stuff.
Thanks to all of you for the guidance. I appreciate the help!
Diagnosed 2-13-13. RRMS.
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jimmylegs
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Re: RRMS and Epstein Barr Virus

Post by jimmylegs »

hi m, I see I missed some details you had sent before LC's post. thanks for those.

alive.com is so so. I just used it for the depletion info b/c it was quick and dirty compared to a bunch of research. usually I would not consider that kind of resource in-depth enough.

for excellent nutrition and nutrient density info I use 'world's healthiest foods' http://www.whfoods.com

for inflammation factor info I use http://www.nutritiondata.com (you have to go to the detail sheet for each food, use the search tool top right. this site can be a little overwhelming b/c they break things down into such fine detail. try entering 'beef' it's a nightmare. but once you nail down a choice the data is fantastic)

if you want background info on the inflammation factor concept, read here:
http://inflammationfactor.com/

there's a decent little blurb about it on nutritiondata too
http://nutritiondata.self.com/help/inflammation

can't find a link to it specifically, but when you are healthy you aim for an anti-inflammatory daily score of +50. if you have inflammatory illness you aim for an anti-inflammatory daily score of +200.

sounds like you are getting on the right track diet wise. next steps, record everything you eat and drink for three days (if there's any variation day to day, pick two 'work' days and one 'weekend' day), with as much detail as possible, including serving size info.

if you can cajole someone into getting you some nutrition blood work, please do!

here's the big picture from my angle, if I did not already link you up to it http://www.thisisms.com/forum/regimens- ... c2489.html you will see a little repeat info in there, tons more context though.
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Re: RRMS and Epstein Barr Virus

Post by jimmylegs »

key nutrients that are low in ms patients are also low in cases of bacterial and viral infection.

advance comments.. not sure if the 0.8 umol/L is a valid cutoff for assessing selenium level associations with infection. also not sure 12.8 umol/L is any good whatsoever as a healthy controls mean for zinc. at the end of the day this is not what i'd call a high quality healthy control group. more likely just a negative-for-this-specific-infection group.

the data is still interesting, though :)

Trace element alterations in infectious diseases
http://informahealthcare.com/doi/abs/10 ... alCode=clb
Trace elements like copper, zinc, iron and selenium have a significant influence on the function of the immune system. We studied plasma levels of trace elements in 53 patients with acute bacterial and viral infections. In bacterial infections (septicaemia, pneumonia, erysipelas and meningitis) the plasma concentrations of selenium, iron and zinc were decreased. Plasma copper was unchanged in patients with erysipelas, but increased in other types of bacterial infections. Although the patients with viral infections showed similar shifts of the trace elements as were observed in patients with bacterial infections, the changes were not as pronounced. A plasma selenium value below 0.8 μmol/l was found in only 6% of the patients with viral infections in contrast to 63% of the patients with septicaemia or 57% of the patients with pneumonia. Furthermore, in viral infections 60% of the zinc values were below the mean level of 12.8 μmol/l observed in healthy controls as compared with 90% of the values in patients with sepsis or 92% of the values in patients with pneumonia. The onset of change in trace elements occurred within a few days and persisted for several weeks. These changes seem to be non-specific and are independent of the agent causing infection. The different types of infections were followed by changes in most of the plasma proteins which are known to be associated with an inflammatory reaction. The changes in plasma proteins were most pronounced in patients with sepsis and pneumonia. Patients with sepsis having a high degree of inflammation did not show a positive correlation between the severity of the disease—as judged by plasma proteins—and the alterations of trace elements.
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jimmylegs
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Re: RRMS and Epstein Barr Virus

Post by jimmylegs »

i'm just digressing for a sec to wonder about the relative sizes of viruses and bacteria.. it's been a while since that came up but bacteria are huge compared to viruses. wonder if that as anything to do with anything :S hehe
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mpalla
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Re: RRMS and Epstein Barr Virus

Post by mpalla »

Awesome jimmy legs! Thanks. Tonight's research! :)
Diagnosed 2-13-13. RRMS.
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jimmylegs
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Re: RRMS and Epstein Barr Virus

Post by jimmylegs »

no probs, enjoy the learning curve :)
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CureOrBust
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Re: RRMS and Epstein Barr Virus

Post by CureOrBust »

jimmylegs wrote:i'm just digressing for a sec to wonder about the relative sizes of viruses and bacteria.. it's been a while since that came up but bacteria are huge compared to viruses. wonder if that as anything to do with anything :S hehe
Have you seen the video by the Charcot Foundation? If I have understood it correctly, they appear to not be attacking the virus organism, but the actual DNA that it has inserted into our own DNA. The surprising statistic they presented was that of our huge DNA sequence, some scientists believe that only 5% is used for "being" human and reproducing etc, while 8% of our own DNA has been inserted by Viruses!
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jimmylegs
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Re: RRMS and Epstein Barr Virus

Post by jimmylegs »

heya, can you clarify who does not appear to be attacking the virus organism? the DNA research sounds interesting.
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CureOrBust
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Re: RRMS and Epstein Barr Virus

Post by CureOrBust »

You need to get out more, and by out more I mean in other forums on this web site. :razz:

Can Anti-HIV Drugs Stop MS?

which if you follow all the links takes you to:
The Charcot Project is an initiative to promote research and the dissemination of information around the hypothesis that multiple sclerosis is caused by a virus. It is being generously funded by anonymous donors and AIMS2CURE.

Both the above links have the same video.
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jimmylegs
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Re: RRMS and Epstein Barr Virus

Post by jimmylegs »

ah, that's not a track i'm pursuing. i should think any virus would be secondary opportunistic, not causal.
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mmpetunia
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Re: RRMS and Epstein Barr Virus

Post by mmpetunia »

also, in regards to the dietary stuff there are so many different theories about how or why one type works. i was really inspired by terry wahls recovery from being wheelchair bound to walking following a strict diet and physical therapy routine. however there are multiple other diets and theories, each with their variations. in general what i found was that almost all of them excluded dairy and gluten. so instead of worrying about following one strictly, i figured i would start with those two eliminations and consider it a work in progress. like you, i was very overwhelmed after diagnosis and i just didn't have the time or energy to sort it all out at first. i definitely feel like i made a good choice with my diet changes and a year later, MS aside i know i am healthier for it. my advice to you is to find a piece that makes sense to you or that feels attainable and start there. you can always adjust further down the line and you don't have to be perfect. make changes gradually and if you cheat or inadvertently eat something you shouldn't don't beat yourself up--you're learning! its a process that takes time so be patient and add in pieces when you feel ready. sounds like you have already been making some steps in the right direction so thats good, just keep at it. :smile:
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
http://mylaceybrain.wordpress.com
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mpalla
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Re: RRMS and Epstein Barr Virus

Post by mpalla »

Thanks for the good feeling mmpetunia! Needed that today!
Thanks to all the others for the info and posting. I appreciate all of you. :)
Diagnosed 2-13-13. RRMS.
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mpalla
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Re: RRMS and Epstein Barr Virus

Post by mpalla »

Thank you all. Yes...have my list of things to research. I appreciate every one of you!
Diagnosed 2-13-13. RRMS.
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