I've posted a few times here, having tested extremely high for thyroid antibodies, which indicated Hashimoto's Thyroiditis. My primary complaint this whole time has been RA-like symptoms, where my metatarsals are in excruciating pain a majority of the time, running on five years now. My fingers have also experienced unexplained and non-symmetrical swelling of the topmost joints, often occurring in a matter of a few days (again, excruciating pain). The same has been happening in my shoulders and knees. I'm 49. Rheumatologist said it didn't present as RA, podiatrist found nothing wrong, endocrinologist told me I did not have hypothyroidism.
My naturopath dXed me with Hashimoto's nearly two years ago. My regimen at first was compounded T3 (5 mcg) then early this year I switched to Nature-Throid, slowly increasing my dosage but still not very high. I thought for sure the joint pain would go away when I reached my optimal dose.
Three weeks ago ago I saw a new MD, who has already moved away. I asked her for an Epstein-Barr test. Lo and behold, I have reactivated Epstein-Barr, and I suspect I've had it for quite some time. For nearly a month I have been on the autoimmune paleo diet, never cheating once. My plan is to stay on this for six months and then get retested for Epstein-Barr. I take the equivalent of a small fortune in immune boosters and natural antivirals (monolaurin and reishi mushroom), essentially the treatment protocol for chronic fatigue syndrome. I've never suffered from debilitating fatigue, fortunately, and don't know why.
Epstein-Barr has been shown to cause other autoimmune disorders such as MS and lupus. About 90%+ of the adult population carries this virus. There may be a genetic predisposition to a reactivation of Epstein-Barr, aka HHV4. One thing it manages to do is escape the gut, which is where it initially resides, and hide in the B cells (immune cells) of organs such as the thyroid. Through a process called molecular mimcry, the proteins created by these infected B cells are so similar in structure to the body's own it causes the body's immune system to attack the body, specifically the affected organ or body part. Hence the unexplained elevated thyroid antibodies (1000+ for me). And on top of that, it is attracted to synovial fluid, so my immune system's natural killer (NK) cells are destroying my joints.
I stopped taking any thyroid meds at all about a week ago, having tested high (5) in free T3. My joints are starting to become pain-free. It looks like I may have found my root cause, finally, so the plan is to maintain at least a paleo diet after I send the Epstein-Barr virus back into remission.
Just wanted to let you all know. You guys are terrific.
-Corey
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Wow! Not only have you explained so eloquently the health problems you have and are experiencing- you've helped me to understand some of mine too! I shall have to have a look again at some of my blood test results and see if there are improvements I can make to my health lifestyle.
If I understand you correctly, the Epstein Barr virus is the root cause and the implication is that we should be trying, primarily, to eliminate it from our bodies. Then when necessary treat the thyroid. I have CFS symptoms as well as thyroid, I hadn't been able to connect them until this morning. Although I have a CFS diagnosis my GP has told me nothing about it. I'm mostly picking up what I know from the web.
You can't eliminate Epstein-Barr. You can make it go dormant. I'm not a doctor, but there seems to be a correlation between HHV4 and other autoimmune disorders. I'll look for the various studies I've found and post them in this thread.
What Linda said, thank you. Is the reactive EB test reliable and privately (I'll check blue horizon in a mo) ? I have read this can be a common a d overlooked cause of thyroid destruction and symptom flares. Good luck..look forward to your update.
Thank you for posting, I too am very interested to hear about where to source this test privately. My joint pain is my most debilitating symptom (mainly shoulders, neck and hips but have had swollen fingers before too) but bloods are clear for RA therefore Rheumy not interested...
Thanks, this is so helpful. I have hashimoto's and tested positive for Epstein-Barr react ovation. My functional nutritionist suggested humeric acid and turmeric and digestive enzymes. I haven't reordered them but will now. I get RSI and sports injuries all the time (so interesting about the synovial fluid). I've just started on 20 micrograms of thyroxine to reduce the inflammatory response - my perixidase antibodies usually 1500-3000. I find it hard to know what to do as gluten free for 2 years hasn't reduced my antibodies alone. Have your antibodies come down at all?
Even through all of the pain I have remained active, continuing running, weight training, and cycling every day. I've found that forcing blood to flow through the affected areas, especially my feet, reduces pain and inflammation.
My thyroid antibodies have come down somewhat but hover around 500-600. I'll be interested in seeing where they are at when I'm done with self-experimentation with diet and supplements. I have been gf for two years, plus eliminated dairy, nightshades, and soy for six months prior to the start of AIP.
The AIP diet is not for the faint of heart. I am determined to effect a positive change and find out once and for all if I can cure myself, which is why I'm sticking to it. It means that I eat only meat, fish, vegetables (no nightshades), and fruit (no more than 2 servings per day). No eggs, dairy, legumes, grains, soy, nightshades, processed sugar (I don't eat honey or maple syrup, either, only what is found in fruits), nuts, or seeds.
The supplements I'm taking upon my naturopath's recommendation in varying dosages at different times are Vit A/beta carotene, B-complex, Thymus, Zinc picolinate, monolaurin. On my own I'm taking ginger/turmeric, reishi mushroom, CoQ10, pregnenolone. I drink kombucha every day and eat fermented foods every day. I am not a doctor, so can't recommend this treatment protocol to anyone else. My own treatment protocol may change as time goes on.
I think the most valuable change is the AIP diet. Anything to starve Epstein-Barr into remission.
I've read a bit about starving viruses from any l arginine and killing them with lysine. ...which are both amino acids. Funnily enough I feel better when I stick mainly with fruits and no meat lol. Against all the modern fructose is evil / no sugar protocols! But then I haven't had ebv confirmation at this stage.
The paid is obviously working for you 😀😀😀 you have been so unwell for a long time that you will have plenty bucket loads. .in fact an overspill of determination to follow this through for 6 months at least! ! Take care
One further thing, (as Iv had my dna processed and found I'm ++ for C667T amongst others) I'm now querying whether you think the virus can alter ...
(Chromosomes > snp's > allelles)
.... The expression of the alleles ?
Alleles come in either A,C,G,T .
Bit far fetched I know, but my methylation pathway is damaged so wondered whether part of what the virus does is to alter the alleles to suit themselves To stop me clearing them out?
You are making my brain work on a very odd wavelength this morning!! Iv been puzzling this since 7 am and my brain doesn't normally get into gear till after my 11oclock slug of coffee. (Good quality coffee is good for CFS-occasionally!)
So - I spoke to the Dr, told him about the findings, told him about my thyroid scan and the mention of autoimmune thyroiditis. He said but my TSH levels have been level since 2000, averaging about 2, at the lowest 1.9. So I asked him what could be causing my symptoms, and could I be not converting it? and he asked who did the scan and looked up the results. Then he said they do mention autoimmune thyroiditis, I'll do a T3/T4 blood test. Hooray! (Hope this is enough).
While I don't think we necessarily have the same thing, I thought I would throw this out there as a possible thought about pain. I had terrible, worsening foot pain. I was hyper (now slowing turning hypo). The only antibodies I have that are out of line are TPO. Anyway, I was reading about supplements for hyper, and found that copper helps, so I started taking it. It was a small supplement, no more than you need in a day. Within three days, I suddenly realized I had no more foot pain! The reason I say this, is that taking zinc can cause a copper shortage in some people. The other problem I had was when I switched to a stronger bugleweed supplement and felt terrible pain in my arms and shoulders that never went away. In researching the supplement, I found that it moved excess estrogen out of the body. I stopped the bugleweed, rubbed a little over the counter estrogen on me and the pain vanished. Everyone speaks of estrogen dominance these days, but some of us just don't have enough!
i can relate to all of that and thanks for posting.....i take zinc for my hair and i have terrible foot pain in one foot, and i am also low in estrogen...but not antibodies but hypo on ndt
I had Reactive Arthritic Virus about twenty years ago. I had pneumonia afterwards and am pleased to say that after being very ill, I am quite fit now, but have an underactive thyroid and am on 125 mcg thyroxine one day and 100 mcg thyroxine on the next day (NHS). could anybody please tell me if Reactive Arthritic Virus the same as the Epstein Barr virus because I keep getting lots of pain in my left leg and sometimes lower back and GP takes no notice.
Also get numbness in my feet of a night. I would let you know that I am not diabetic.
I also do a lot of exercise like dancing, swimming and even a bit of tap dancing, so I do keep fit but I am just fighting the pain and trying not to let it get me down.
Would be so pleased to hear any of your comments. I have posted on here before and it was you dear friends that told me I was lacking in iron and I am trying to remedy that by taking Solgar Gentle Iron 25 mg. I know this is low, but the doctor gave me an iron prescription and I was extremely allergic to it and for one day became terrible unsteady and very ill, so hence the low dose in iron. Also my friends you told me by my blood report that i was lacking in vit D3 and now he has supplemented me with Vit D3, but as yet have not had a blood test to see how all is working. We will see.
Thankyou all in advance because i know you are all so kind and willing to help if needed.
I followed Dr. Walt Stoll for many years. He was a medical doctor and began turning to natural treatments when he saw what the pharmaceutical profession was doing. This is what he had to say about Epstein. It cost him his MD license after 34 years of practice.
"Remember, EBV is a VERY weak virus. It only attacks susceptible people (people with stressed immune systems)
--that is why it is sometimes called the kissing disease. It takes very close contact AND a susceptible person to get it.
The length of the symptoms also depends on the individual's immunity. It varies from 6 weeks to YEARS
Fifty grams of intravenous vitamin C, daily, for3-4 days routinely stops this condition in its tracks. From the usual 6 weeks of disability, it routinely is gone within a week.
This has been known for at least 20 years. Why is it not the standard of therapy?"
EBV is considered a potential cause of a variety of autoimmune disorders, including CFIDS, ME/CFS, RA, SLE, MS, Hashimoto's. Here's an article on "CFS/ME and Parallels with Autoimmune Disorders". What I like about this article is how it describes the cellular processes and reduced functionality of immune cells such as Natural Killer (NK) cells and neutrophils.
Epstein-Barr virus infection in peripheral blood mononuclear cells, synovial fluid cells, and synovial membranes of patients with rheumatoid arthritis.
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