Hi there,
I went to see a functional nutritionist on Harley Street with my Hashimoto's. He found I was positive for active Epstein Barr and as well as staying gluten free and taking his range of supplements he prescribed humeric acid (from Californian soil). Has anyone heard of this way of suppressing the Epstein Barr activity to protect the thyroid from the antibodies involved in Hashimoto's? Thanks in advance as nothing has reduced my antibodies so far.
No idea about Epstein Barr but my antibodies have dropped from over 600 to 43 ,still above the 34 limit for the lab. The only difference in my diet was to virtually eliminate all cakes, biscuits and similar( as I had been diagnosed with Type 2 diabetes) . To have porridge every morning with a teaspoon of Black Gold cumin oil.Within 3 months my blood test showed I was back to when I was told I was not diabetic 12 months before I was.
Cumin oil is alleged to be good for the immune system . I cannot say whether it has brought the anti bodies down or less cake etc or whether they would have gone down in any case but I will keep to this regimen.
Treepie,
Great news.
I have tried black seed oil in the past. Perhaps I will give cumin oil a shot.
The box claims it is mentioned in the Book of Isaiah and quotes from the Koran to the effect that it cures everything but death ! Shame about its limitation.
Brilliant fact!
Great news...my antibodies are over 3000 which seems way higher than other people but I'm pretty asymptomatic?
I read that the fact someone has higher antibodies does not make them sicker than someone with a lower figure but that the illness is less likely to go away.
Good to know thanks...maybe I shouldn't both with the gluten free diet in that case if there's little chance or reversing the disease...
Well its probably worth trying .I am not gluten free but must have cut out alot by virtue of not eating cake ,biscuits etc.
I read that in Thyroid for Dummies , its a bit out of date but very comprehensive .
I've been gluten free for over a year now and will probably keep it up as my daughter is a coeliac so I do it partly for solidarity with her. I should probably try giving up dairy as a trial too as the combination works for some people. I'll check out the book thanks.
Rebecca,
It is thought that much Hashimotos is triggered by a viral//bacterial infections (molecular mimicry) and as long as the underlying infection is active, the immune system will continue to attack - hence high antibodies.
I was tested last year and do not have EBV but am skeptical as read possibly over 95% of the population have it - just in varying degrees and it can lay dormant. I had the common swollen lymph nodes as child but guess these could be attributed to other causes.
We have compromised immune systems due to auto immune disease but I read that many Hashi sufferers can have a genetic mutation that impairs the part of our immune system that should control EBV.
Humic Acid (& fulvic acid) works for many in a number of viruses and has even been trialled for controlling AIDS as have extra strong anti-viral actions. Humic Acid stops the virus from attaching//penetrating new cells and halts further reproduction but it will not penetrate cells already infected, so needs to be part of a whole protocol. I don't know which additional supplements would be needed but Dr Richard Laub lead the research into these acids and explains his findings in link below.
Healthy adrenals are huge and optimal nutrients and iron. Additional selenium is mentioned in a lot of autoimmunity healing programmes & controlling EBV. It also aids thyroid hormone conversion, protects against oxidative damage caused by the hydrogen peroxide (required to make hormones) & reduces TPOAb.
My TPOAb remain in the 300's irrespective of my focussed regime to reduce. I have found supplementing resveratrol and curcumin, both known for their antioxidant qualities helpful in reducing inflammation and feel well.
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Dr Richard Laub
nutraceuticalsworld.com/con...
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Selenium & EBV
ncbi.nlm.nih.gov/pubmed/125...
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This link is actually for Fulvic Acid but shows how immensely powerful these acids are.
radd You rock missus ! xx
LOL... Thank you Rapunel,
I had a friend with HIV and it helped (to an extent).
I have a sticky glue-like saliva problem and nobody knows why ! ! ! ......Last year I had over 50 immunity (& other) tests at Guys Hospital ...I was negative for all except Hashi which I knew about anyway but something is driving my thyroid antibodies which remain elevated.
All gut issues are resolved and my diet is super strict but wholesome and varied. I have completed an array of tests including: Gluten Associated Cross Reactive Foods, many genetic tests showing variations and comprehensive sex hormones. Everything appears good (at last).
I am supplemented up to the hilt as have theraputic monthly phlebotomy for Haemochromotosis. I have worked with a nutritionist (who has Hashi herself) for over a year and feel well, leading a normal life now and will return to work in october but my CRP remains elevated as do thyroid antibodies so I just switched to NDT after a year on synthetics to improve health issues.
I have looked into Humic Acid myself.
Wow - weird I get viscous saliva too but I think it gets worse when I drink milk but I may be grasping at straws...
I am interested in seeing a nutrionalist - can you pm me her details
Ditto!
Rad / tha is amazing info thanks...my antibody levels are over 3000 so seem WAY higher...I got glandular fever I think at university but the test I had looked for activity rather than simply having had the disease in the past. I'll look at everything you've sent through. Can't tell you how grateful I am for your help, thanks.
Rebecca,
Sorry to hear your antibodies are so high.
I had all symptoms of glandular fever as a kid but never had a positive diagnosis.... they grasped at straws suggesting Brucellosis and various other viruses.
After many trips to Guys Hospital (who houses the largest Department Of Oral Medicine) I have had so many tests including all salivary glands scanned and saliva measured.
Because the saliva amount produced is normal and there are no tumours they said I was fine.
When I persisted in having the saliva consistency tested to establish saliva components ( enzymes, acidity, etc) they said there was no such test, offered me anti depressants and gave me an appointment for cognitive therapy ! ! ! //. ...... both of which I declined.
Now I keep quiet and hope as my health continues to improve, the saliva problem may just go away....... ( in my dreams ! ) ....
I feel I have rather shot myself in the foot, because as I have supposedly seen "the best", all other doctors say there is no more to be done.
I have found other sufferers on the net but no remedy. Perhaps it is such a deep biochemical change that it has to resolve itself.
I think one of the huge problems with auto-immune problems is that their are so many odd symptoms and there are so few specialists who don't go beyond bloods to diagnose and drugs to treat. I would just love to see a real specialist in auto-immunity with a real deep research interest in what is going on with the immune system. The only time auto-immune diseases seem to come up is on episodes of House because they are often the most tricky conditions to diagnose and treat. I hope you do manage to find a treatment to help manage your symptoms radd.
I also find all the alternative options mindboggling. I wish both groups could work together and look at some of the non-pharmaceutical treatments but assess them properly to give patients real information about what works, dosage etc.
I LOVE House ... if I were a medical student I would love to do my training under him ! ! ! ..... ;o)))) ....
Ha ha me too! I used to work as a BBC documentary researcher so would have loved to research the medical cases for the storylines. Though half the time they'd shout 'sarcoidosis'and that would be the right diagnosis 😂 Yes dream job!
I came back as testing positive for farmer's lung and Q fever (a notifiable disease) at one point. I think Hashi's makes a nonsense of blood tests. The 'farmer's lung' went away when I stopped eating gluten - so clearly wasn't farmer's lung. The Q fever antibodies disappeared.
That's so interesting - was it after you were treated for these diseases that your antibodies disappeared and your 'Hashi's' disappeared louldhen? Which antibodies did you test positive for and did you ever have any symptoms of thyroid probs? I need to keep taking my anti-Epstein Barr stuff I think (I'm hopeless at taking supplements).
Had levo treatment for about 7 years because a routine health check showed i had raised TSH and who isn't tired etc? - it never really did anything to improve my health I just presumed I had to take it (my mother did - she died at 56 because of levo I now realise). Gradual decline - I was ready to die at 56 - GP sent me to Kings for lumbar puncture, mri etc - nothing. General blood tests came back as positive for farmers lung and Q fever (not impossible as I am a farmer) on retesting these antibodies disappeared - I had never had farmers lung or Q fever (which is used as a biological weapon but you can acquire it from sheep so rather relieved).
6 months later at the 'end of the road' I had the ingenious idea of stopping taking my levo. I improved within a couple of days. 6 months later I treated myself to a hashis antibody test for my birthday which showed positive. Now on T3.
Wow - so glad you are feeling better on T3. I see an NHS endocrinologist in September for the first time so have lots of questions for her...
..... I hope she has some answers for you 
Don't get your hopes up! I presented them with a fait accompli - my evidence was irrefutable - but I am treated as 'one of those weird folk who won't tolerate T4'. They offer no analysis of why or what might help further.
I have pretty low expectations but my neighbour sees this woman and says she's open minded and listens (unlike the last endo I saw). It's all very frustrating 😬
Hi radd
My fyunctional medicine doc has also prescribed my turmero and reservo by apex energetics, which sounds like what you are taking. Liquid taken via a syringe? How long did you take it before you started feeling better? Havent tried mine yet
Jefner,
I take KappArest by Biotics Research Corporation.
It is a capsule mix of resveratrol and curcumin with other plants extracts known for their anti- inflammatory effects. I have supplemented this for over a year and every time I try to stop, my symptoms come straight back.
It helps balance me, stops all aches & pains, calms the redness of my facial flushing when I wake in the morning, makes my skin so much more supple and good, and even makes my eyes bright. People say I look so well.
Every time I stop supplementing, my skin goes really dry, my face goes blotchy and I get stiff and achey and feel so old.
This combination is advocated by Datis Kharrazian. I hope it helps you as much as it has helped me. There are a mind boggling number of supplements on the market and it can be expensive finding which are most beneficial to our individual selves.
Apart from NDT (or T3 obviously), I would say this is my HERO product. I noticed a difference virtually straight away.
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Resveratrol and curcumin suppress immune response ncbi.nlm.nih.gov/pmc/articl...
yeah the ones I am on originated from Datis Kharrazian
Apex Energetics are a very good brand. I have used their RepairVite for gut issues. I am sure you will feel some benefits.
yup, that's the one I have to take as well as the Reservo and Reveratol. Did you get any reaction with the RepairVite?
I'm away from home but will look up his name as soon as I can.
Thanks for the tip on numeric acid. Ironically I am reading a book on health and author just mentioned Epstein bar causing all sorts of diseases. He believes its root cause for many autoimmune diseases. It can lay dormant in body years. Very informative. I hope your treaty works. Stay well
Ha ha don't worry I'm a PhD not a medical doctor and I also get very frustrated by lots of unquestioning doctors. If you are that I'll the doctor is wrong and most of what he/she said is just NHS speak rather than universal best practice for a complex condition. I'm sure you will find talking to Anthony helpful.
Humic acid is the only one I've hear of. I've been told not to mention treatments by brand 😳
Rebecca,
Site guidelines state you may mention brand name (either positively or negatively) but not give out Doctors details. These must be given by private message.
Ah right thanks
Anonymous,
I don't have known EBV so have never been treated for it but here are some links for your further research.
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Hashi & EBV
hashimotoshealing.com/the-h...
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More Hashi & EBV
stopthethyroidmadness.com/2...
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Natural Treatments for EBV
restormedicine.com/controll...
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A private sector Dr I see recently tested me for EBV. Had the test proved positive, she would have started me on Valacyclovir for several months. As it is, I am going on Acyclovir instead, in an effort to eradicate remaining chicken pox/shingles virus from infection many years ago. My immune system still seems to be reacting to it.
Thanks Hillwoman - have your antibodies come down? Are their any side effects to taking an antiviral?
I'm just about to start the acyclovir course, so I'll keep you posted. I've been told I will have to avoid alcohol while I'm on it and have regular kidney function tests, so it's not a completely benign option.
Have you considered Low Dose Naltrexone to modulate the immune response? I haven't re-tested my Hashi's antibodies since I started LDN a year ago (I have many health-related costs), but it did knock early rheumatoid arthritis on the head. I'm sticking with it!
I've never heard of that treatment so will certainly look into it. Thanks so much.look forward to hearing how you get on 😊
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