RRMS and Epstein Barr Virus

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Copaxone bad effects?!?

Postby mpalla » Tue Jun 04, 2013 5:29 pm

I went to dr today. Been on Copaxone since March. Today I was told my white cells were climbing and my thyroid is messed up and I am getting an appt to see a endocrinologist. Woke up today with blood blisters in my throat and inner mouth. I was told ihad EBV a month ago and my immune system was getting worse since I started taking Copaxone. I am going in a week to a well known teaching hospitals ms clinic for help. I sure believe it's the drug. Anyone else have or know of this? I called shared solutions and reported it.
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby jimmylegs » Tue Jun 04, 2013 5:41 pm

sorry to hear you're having a rough time mp :S have you had a chance to get any nutritional bloodwork done?
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Wed Jun 05, 2013 2:26 am

Yes I have JL! I just finished with zinc and magnesium test yesterday. I am picking up copies today when I get my thyroid ultra sound. I feel best today...no medication..since I got sick. Last shot was day before yesterday. I am scared not to be on anything but feel good when I awoke....found myself again! I am scared as I said to relapse...eeeeeeeeeek.
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby jimmylegs » Wed Jun 05, 2013 3:58 am

hey great!! yay for info :) glad you are feeling better :D
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Thu Jun 06, 2013 5:40 pm

Felt not well today. My arms felt as tho they weren't attached?! Can't say I'd felt that before. My knees and ankles hurt horribly. Popped Tylenol, aspirin and a few neuron tins they (legs) felt better. Is that arm thing ms I assume? Is that a relapse anyone know? I got nervous and popped some steroids...
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Thu Jun 06, 2013 5:56 pm

Also JL...this is my blood test numbers
Mg normal range 2.3. (1.5 to 2.5) parentheses normal range on sheet
Wh blood cells 12.9 (3.8-10.8) Copaxone result we think
Red blood count 5.09(3.80-5.10)
Hemoglobin 15.8 (11.7-15.5) thanking Copaxone again...
Hematocrit 47.5 (35.0-45.0)
Platelets 328 (140-400)
Says absolute neutrophils 11146 (1500-7800) Copaxone again....I am going to google that phrase because the others I know. Never heard of this....there is a whole bunch of other cytes and phils but the rest are in range.
Hemoglobin a1c (something to do w diabetes) 5.3 where decreased risk is >5.7
b12 985 (200-1100)
Tsp w reflex to ft4 .32L this is out of range. Thyroid stuff I was told.
See what you all think. I have baskets of supplements.I take the following
2 centrum
4k iu vita d3
2 calcium 300 mg
Mg 150 mg
Once a week b12 shots
What does anyone else suggest? I am open to suggestions.
I just thought to I made eggplant Parmesan last nite...first time I cooked a meal that was more than 10 min total in a long time. It has cheese....I have steered clear of dairy. Could that be why I feel bad today? 12 hrs ago.....and believe it or not breakfast....cheese on both. Suggestions, ideas or anything would be appreciated. I have a hard time understanding what the deal is yet or recognizing what ms is. I never listened to the body before....
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Fri Jun 07, 2013 9:29 am

Way better today than yesterday! My arms are back....really scared me. Everything still aches...maybe the new normal I think. Relieved the arm thing isn't a relapse...I read symptoms over 24 hrs can be one?!
Wonder if the steroids helped or the gabapentins did? Or just a good ms day.....soo much to figure out.
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Re: RRMS and Epstein Barr Virus

Postby jimmylegs » Fri Jun 07, 2013 9:55 am

hey good info mpalla!

re the mag, not long ago I would have said aim for at least 2.3 - since then I have seen healthy controls as high as 2.7, so you can keep going on that one.

keep up the daily magnesium and if you choose, add one more. can't hurt to balance the cal mag ratio.

hemoglobin is good, you want it at least 13 according to klenner protocol.

b12 level looks really great. the weekly shots are clearly working!

I didn't see a vit d3 level, do you have an older test result, and if so, what was it? and, remind me if you've had a serum zinc test at all?

just picked a semi random centrum product and noted 8mg zinc content in one pill - might have trouble absorbing that zinc, given the calcium supplement in the picture. do you take the centrum(zinc) and the calcium at the same time?

High dietary calcium intakes reduce zinc absorption and balance in humans.
http://ajcn.nutrition.org/content/65/6/1803.short
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Sun Jun 09, 2013 6:33 pm

Thanks JL! Interesting article. I have zinc and will mix it up. Got magnesium today. I know last test was low. They told me 2k a day..I mix up between that and 4k. I have to look for my papers later. I am organizing for my hospital trip. Got so many lists, documents and I feel yucky off and on too. I will get that info tomorro. Thanks for your expertise.
Diagnosed 2-13-13. RRMS.
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Tue Aug 27, 2013 8:33 pm

I am still fighting. I have some days prevalent EBV. I know it's not ms. At my last appt w pcp I asked for acyclovir...the meds I took 2 years ago when I for a second time had shingles. I felt that antiviral and supplements will help. I have mostly more so than regular ave had good days...even did an hour of work every day when I had been fatigued and whatever. I've googled studies and read stuff...just want to know if anyone else tried this? I think it's helping......
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Re: RRMS and Epstein Barr Virus

Postby grandsons4 » Tue Aug 27, 2013 8:49 pm

mpalla: Read Scott1's posts on the Resveratrol combats ebv (study)...rituximab alternative thread.
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Thu Aug 29, 2013 8:16 am

Well my thyroid...Hashimotos disease....beginning stages. Endocrin guy suggested supplement Biotin and next month we will dicuss pills...after additional blood work...being off all MS drugs to see if that broke, depleted or just skewed the test. Sheesh...one more thing and pill.....yippie. :(
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Re: RRMS and Epstein Barr Virus

Postby Annesse » Thu Aug 29, 2013 8:58 am

Hi mpalla~Sorry you are going through this.

I just wanted to mention though that hypothyroidism is associated with MS.

In the following study published in Neurology researchers found that thyroid disorders, which were accounted for mainly by the prevalence of hypothyroidism, were at least “three times” more common in women with MS.

Neurology. 1999 Sep 11;53(4):883-5.
Association of MS with thyroid disorders.
Karni A, Abramsky O.

“…We found that thyroid disorders were at least three times more common in women with MS than in female controls. This was accounted for mainly by the prevalence of hypothyroidism among the female MS patients.”


There is an explanation for this.
MS patients lack the essential amino acid (phenylalanine) that the thyroid hormones-thyroxine and triiodothyronine-are derived from. [phenylalanine>tyrosine>thyroxine and triiodothyronine


In the following study the researchers found that patients with MS lacked phenylalanine and tyrosine.

J Neurol Neurosurg Psychiatry. 1979 July; 42(7): 640–641.
Plasma and cerebrospinal fluid tryptophan in multiple sclerosis and degenerative diseases.
F Monaco, S Fumero, A Mondino, and R Mutani
“…Tryptophan and competing neutral amino acid levels were found to be diminished in the plasma of patients with multiple sclerosis and degenerative diseases…Tryptophan, leucine, isoleucine, valine, tyrosine, and phenylalanine were all diminished in the plasma of patients with multiple sclerosis…”


Just as we would expect, researchers in the following study found low levels of tyrosine in patients with hypothyroidism.

The serum tyrosine level as an index of thyroid function.
Malamos, B., C.J. Miras, J.N. Karli-Samouilidou, D.A. Koutras. 1966. J Endocrinol. July 1, 35 223-228 doi: 10.1677/joe.0.0350223.

“Serum tyrosine was measured in 22 normal subjects…10 patients with hypothyroidism… Low values were obtained in hypothyroidism…”


Essential amino acids, such as phenylalanine are derived from foods that contain proteins. I believe there is a great deal of evidence that shows patients with MS are unable to properly digest proteins, due to a lack of the enzymes DNase 1 and protease. I am making some posts on this under the thread "Some Interesting Connections."
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Re: RRMS and Epstein Barr Virus

Postby Scott1 » Thu Aug 29, 2013 9:11 pm

Hi Mpalla,

Following on from Grandson's post about what I do, I would suggest that if you can handle Valacyclovir and it made you feel better in the past then definitely ask for it. Shingles and some other herpes are treated with a short high dose. Try 500mg twice daily (maybe for many years - I did over 10years) and see how you feel in week. If it works for you then my experience is it won't do any harm. Some people can't handle it but I think they have other issues.

In addition I would suggest you ask the chemist for the best probiotic they have behind the counter even if it costs a bit as I think long term Valacyclovir use requires you take it.
Certainly, there are other good suggestions out there but the condition of your mouth sounds like you are a prime candidate for an antiviral. What's your tongue look like? Is it coated, particularly near the back.

Regards
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Re: RRMS and Epstein Barr Virus

Postby mpalla » Fri Aug 30, 2013 2:42 am

Scott1 tongue is now fine that I am off ALL MS drugs. I am to go in Sept to start avonex.
I have read about probiotics...do you mean pills or that yogurt? I have also heard of prebiotics....I am unsure. Why do you suggest? Killing good bacteria too or something...anti viral thought only kills virus'. What kind of stuff for probiotics am I looking for? I am new at all this nutrition stuff...was always a fat girl stuck in a skinny girls body. Ex..big bag of chili cheese fritos for breakfast. Not now since February. I am reformed...mostly. Lol. Please help with follow up. :)
Diagnosed 2-13-13. RRMS.
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