EPSTEIN-BARR VIRUS in MC and AUTOIMMUNITY!!

[tex]

Hi Zizzle,

I'm sorry to hear of the EBV relapse, and all the satellite issues. Are you taking a significant magnesium supplement? Are you aware that EBV and magnesium deficiency seem to be directly linked?

Magnesium may be the most commonly used supplement in chronic fatigue syndrome and fibromyalgia. Some people think a smoldering Epstein-Barr Virus infection may be common in ME/CFS. In something of a shocker, recent research into EBV and magnesium suggests that low magnesium and EBV infections may sometimes go hand in hand.

The Epstein-Barr Virus, Magnesium and ME/CFS Connection (?)

So many medications and other medically-associated issues deplete magnesium that there is a very good chance that your EBV may have relapsed because of a magnesium deficiency. Magnesium deficiency is associated with a tremendous number of medical problems, and it is almost always totally overlooked by the guys in the white coats.

Did you see my recent post regarding the old research that demonstrated that a magnesium deficiency boosts serum histamine levels?

Magnesium Deficiency Increases Histamine In Circulation

Tex

[Zizzle]

Interesting. Thanks Tex. I usually take one Pure Encapsulations Mag Glycinate cap per day, but I haven't been that good at remembering. I'm probably averaging 4-5 caps per week, plus a little in the multi I also forget. So many pills in my regimen!!

I'm planning to take Tagamet too, which apparently works as an immune booster at the cellular level. Many with CEBV swear by it. Essiac tea too... Don't know what that is yet. I suppose I'll add Epsom salt baths to my routine too.

The big question in my mind is: What happened first? The low WBCs caused by some autoimmune blood attack, after which the EBV reactivated? Or did the EBV lower the WBCs as part of its attack?

[tex]

If Pure Encapsulations considers a serving to be 1 capsule (many brands specify 2 tablets per "serving"), then you are only getting 120 mg of magnesium per serving. Many/most of us are taking 4 or 5 times that amount (or more) daily.

I have no idea what initiated your low white cell count. Magnesium deficiency can cause an increased white cell count, but I'm not sure how strong that effect is, because when I was critically low on magnesium my white cell count was not elevated. My red cell count was low, though.

Tex

[Zizzle]

I'm aggressively tackling my EBV now. I just volunteered for an NIH study on EBV, and I'm scheduling IV vitamin C infusions (with b-12, mag, glutathione, etc) at my doctor's office. I am also starting Tagamet/Cimetidine, which inhibits T-lymphocyte suppressor cell function. Its effects are temporary, so if my autoimmune rash flares, I'll stop. The more I read, the more I know ALL my issues are entirely caused by chronic EBV!! Even my specific autoantibodies. I am 100% convinced there is no true autoimmune disease. It is your immune system attacking virus-infected cells.

Here's a study on high dose IV Vitamin C for treating EBV:

http://www.naturalmedicinejournal.com/j ... infections

Here's info on Tagamet/Cimetidine for stimulating immune system function to treat herpes infections. I know a few people with CEBV who swear by it.

http://www.lifeextensionvitamins.com/tatotrheands.html


I have to decide whether I'll try Olive Leaf extract too. I heard it can cause D...

[tex]

I am 100% convinced there is no true autoimmune disease.

We are in agreement on that — I even postulated that in my book. The difference is that I broaden the definition of immune system targets. For most of us, it's something in our diet. But the point is, the so-called "autoimmune" reactions are always directed at something that should not be in our body. They are never directed at the body itself.

As I pointed out in the book, the tissue transglutaminase enzyme antibodies that the medical community uses as an excuse to label these reactions as "autoimmune" all disappear when the exogenous antigens are removed from the body. If the reactions were truly "autoimmune", removing exogenous antigens would not matter — true autoimmune reactions would continue without the presence of those antigens. The fact that the production of tissue transglutaminase enzyme antibodies ceases as a direct response to the removal of exogenous antigens proves that the reactions do not meet the definition of "autoimmune".

There's a reason for everything, and that reason is never because our immune system is corrupt. Medical "experts" only mistakenly believe it is corrupt because they do not understand what is going on.

Tex

[Zizzle]

Good news! After 4 days of feeling awful on the Valacyclovir, day 5 felt good and I noticed my rash is clearing at a fast pace, no longer itching, especially at the lymph nodes, and all the inflamed nodes have completely shrunk. Amazing. I didn't get this much healing after a month of prednisone during my last flare!! The MC is generally calm too.

Now my question is, do I stop at 10 days or ask my doctor for refills to continue the progress? Some people take it long-term.

[tex]

I have a hunch this article is what you're looking for:

Valacyclovir for Herpes Simplex Virus Infection: Long-Term Safety and Sustained Efficacy after 20 Years’ Experience with Acyclovir

Tex

[Zizzle]

Thanks Tex!! You're the best!!! I'll think I'll at least ask for another 10 days, maybe a month, although I hear it's expensive. But so what, I've saved my insurance company a bundle on my care so far.

Interesting tidbit - I heard back from the NIH researcher, and it looks like I won't be volunteering, since they require an expensive PCR test to prove you have EBV DNA circulating in your blood. All the positive antibodies mean nothing to them, as far as proving you have active EBV. Oh well. I guess it's all in my head

I receive many emails from folks who may have Chronic active EBV (CAEBV) and often they have some other disease. Virtually all patients with CAEBV have a markedly elevated level of EBV DNA by PCR in the blood. This test is different from the EBV antibody test. Your doctor should be able to order the EBV DNA PCR test. If yours is markedly elevated, I’d be happy to provide advice to your doctor or potentially invite you to come her for an evaluation. If it is not elevated, then while you clearly have a problem, it’s extremely unlikely to be due to EBV.

(This test was not done when you were here at NIH previously)

No wonder they have so few research subjects. With those types of requirements, they'll never learn anything about about the far-reaching implications of chronic EBV.

[tex]

All the positive antibodies mean nothing to them, as far as proving you have active EBV. Oh well. I guess it's all in my head

Stuff like this just makes me more appreciative that I chose engineering over medicine. That type of behavior would drive me batty if I were a part of that profession and had to deal with that regularly. The mainstream medical community in general has a creepy habit of arbitrarily accepting certain tests as "gold standards" while ignoring more valid evidence from other indicators. They assume all sorts of things in order to establish a "fact" and then they consider that "fact" (which was built on a fragile pedestal made of glass assumptions) to be absolutely valid under all circumstances. Gimme a break.

It's no wonder that medical research never actually proves anything. Virtually every research project writeup concludes with "more research needs to be done". Well my question is, "why do they keep wasting their time and everyone else's money on inconclusive research?". Why not do it right while they're at it? What would be so wrong with doing it right the first time? The answer of course is that it would eventually put them out of a job if they actually proved everything conclusively.

So I'm pretty safe in predicting that this research won't prove anything, anyway, so you're not missing out on anything. If I have the time later, I plan to write a post about mainstream medicine's problem with political motivation and arbitrariness that dictates so many decisions and policies that they adopt and promote.

If those guys want to do the research (and boost their careers with another publication), why aren't they paying for any special tests required? If they were using guinea pigs as subjects would they require the guinea pigs to pay for their own tests? I'm guessing not, because the guinea pig union would never allow it.

You're very welcome, and good luck with the rest of your treatment program.

Tex

[Zizzle]

Well, so much for the safety profile of Valtrex. I took 1 gram twice/day for 10 days, and developed progressive muscle pain and weakness throughout my body (not just proximal muscles typical of myositis). I thought I was herxing badly and hoping this meant progress. My lymph nodes all shrank and my rash had stopped itching. I thought I had found my miracle cure. But at day 9 the muscles were so bad I had a hard time walking, every muscle hurt, even in my toes, and I was afraid I set off my first true myositis muscle flare since diagnosis. I couldn't go to work yesterday, couldn't drive, could barely climb stairs, and could not lay down and lift my legs up. It was scary.

My doctor finally called at the end of the day and said maybe I'm just sensitive. In all her years of prescribing (she takes it too), she had never seen a muscular reaction like mine. Ugh. Makes me think the EBV is hiding deep inside my muscles!!

I'm 48 hours from my last Valtrex dose and starting to feel better, maybe 30%. I limped into work and had my boss (in a staff meeting) accuse me of being like our old boss, always complaining about her carpal tunnel syndrome. I wanted to PUNCH HER OUT!!

So I'm continuing lysine, monolaurin and C, and getting a Vit C and nutrient IV next week. Will try to remember CoQ10, carnitine and l glutamine for my muscles. Took an hour-long epsom salt bath last night and didn't notice much, just a little more relaxed.

On the bright side, I'm having near normans on the MC front. Go figure...

[tex]

Well that was a heck of an experience. I hope your muscles all recover properly.

Tex

[Zizzle]

I'm happy to report the muscles are slowly recovering. The all over muscle pain ended pretty quickly, leaving me with weak and painful hip/upper thigh muscles, shoulders and wrists. I was terrified I was developing my first true myositis flare. After dragging my right leg around a couple of days, even that is improving now, so I'm hoping to make a full recovery, muscle wise. I still have very little use of my hands in the mornings from snow shoveling-induced carpal tunnel, which I am finally also starting to see some improvement in. I bought a thick, padded wrist splint for sleeping and had my first uninterrupted night's sleep in a month! Waking up to searing pain and numbness multiple times a night with no relief was horrible! I will never take the health of my hands for granted again!!!

So I'm getting a Vitamin C, magnesium, B-complex, and glutathione IV on Monday morning, then getting acupuncture (and probably reishi mushroom extract) in the afternoon. If they can fit me in, I'll try my first far infrared sauna on Saturday. I better start feeling real good next week!! Anything to avoid a trip back to my rheumatologist!

[Zizzle]

An update...I went to see my rheumatologist last week. He thinks I'm having a myositis flare PLUS synovitis...he thinks I have RA now, and based on what I'm reading, I'm sad to admit I think I agree. I have all the textbook symptoms - morning swelling, pain and stiffness in my hands, wrists, knees and feet that lasts much of the day. I've been rheumatoid factor positive since 2004, but he's running some additional antibody tests.

He wanted me to start CellCept, Plaquenil, and maybe even Rituxan infusions, which we are learning are very effective for myositis. Interestingly, Rituxan goes after B cells, which are precisely the cells infected by EBV!! In fact, transplant patients with active EBV are given Rituxan to fight it.
http://www.bloodjournal.org/content/114 ... ecked=true

When I reminded him to look at my EBV blood results, he exclaimed, "I can't put you on any of these meds while you have an active infection!" So he referred me to an infectious disease doc, since, you know, understanding EBV, a common contributor to autoimmune disease, is beyond the scope of what rheumatologists can handle. Sigh.

He offered a max of 15 mgs prednisone, planning to taper 5 mgs/week to get off in one month. I felt amazing after the first dose! No more muscle pain or weakness, I could use my hands again, even exercise seemed possible. Lots of energy and only mild insomnia. Amazing that I could improve so much on such a low dose! Yesterday I took 10 mg instead of 15, and boy am I paying a price. I woke up with incredibly swollen and inflamed hands, knees and bottoms of my feet. I can't fully extend or close my hands.

So if I do have RA, I wonder how this might change my treatment? I need my hands back!! Ugh! Not another dx!

[brandy]

Hi Zizzle,

The spray magnesium oil on the hands and fingers might give some relief. I use it extensively when I can't extend or close my fingers from too much typing.

Zizzle said

No wonder they have so few research subjects. With those types of requirements, they'll never learn anything about about the far-reaching implications of chronic EBV.

I'm in two medical research studies right now...fitness related. Typically in this town they get 3000 applicants per study and end up using 300 people.
I did not qualify for the gluten study.....over 50 was not accepted and I did not qualify for the alcohol study.....I did not drink enough on a monthly basis.

[Zizzle]

Well, well, it might not be the EBV fueling my current flare after all...it might be my UTI!!
This new research may explain why pulsed antibiotic protocols (Dr.Brown's) have been successful in treating autoimmune conditions, especially RA. Could it be as simple as keeping e.coli numbers in check?? I have long suspected my LC is an unrelenting battle between my immune system and my resident e.coli (some of which I picked up as GI diseases in Latin America). It would explain why I never go through periods of remission unless I'm on antibiotics.

I'm waiting for my rheumy to call back and bring me in to have my UTI reconfirmed. I had it last week but was asymptomatic, so I tried d-mannose and cranberry pills, but symptoms are getting more obvious now.

Bacterial Biofilms May Trigger Lupus

Bacterial communities known as biofilms may play a role in the development of systemic lupus erythematosus (SLE), according to a study conducted in mice and funded in part by the NIH’s National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The findings shed light on the role of microorganisms in lupus, and suggest that treating underlying infections may benefit people with the disease. The study appeared in the journal Immunity.

http://www.niams.nih.gov/News_and_Event ... _lupus.asp