I have Hashimoto’s. The endocrinologist I see tested for past EBV infection as suspected something else contributing to my symptoms. And the test results say I have a past infection. He says there’s not much I can do other than to rest, and believes 8 weeks off work would help. I’m not averse to this if it would help.
I have read a couple of books with suggestions for getting rid of / diminishing the effects of the virus. Isabella Wentz’s Hashimoto’s Protocol recommends Valganciclovir, Lomatium, Cordyceps and Olive Leaf Extract. Aviva Romm’s Adrenal Thyroid Revolution suggests Echinacea, Lemon Balm, Licorice and St. John’s Wort.
Does anyone have any experience of this and any recommendations?
Thanks
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Yppah
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Please be careful and research well before you take anything. St. John's wort and lemon balm are both documented as affecting thyroid hormones in a bad way. The leaflet that comes with St John's wort says not to take if you are on levothyroxine. You could do yourself more harm than good.
Lemon balm is used for an overactive thyroid. This a a veterinary article but is still relevant. Lemon Balm is Melissa Officinalis. It's interesting that the article seem contradictory but there are sources for both effects. See also liebertpub.com/doi/abs/10.1... This talks about its anti-viral properties: ncbi.nlm.nih.gov/pmc/articl...
This is the leaflet that goes with the St Johns Wort capsules sold by Holland and Barret which says that it should not be taken if you are on thyroxine.
How did you find that picture of the PIL for St Johns Wort? Do H&B have all their PILs online? And can they be searched for? I didn't even know that H&B supplied PILs and I've never seen a link that allows me to read them!
This article states that lemon balm affects thyroxine absorption "Lemon balm is an herbal remedy often used as antianxiety, sedative and calming effects. It is used as herbal tea and oil. It has anti TSH effect and also prevents intestinal thyroxine absorption."
I was wary of this one anyway as being tested for adrenal insufficiency, and know there is some licorice interaction here. Think I have read good and bad things, I struggle to remember. Will steer clear for now.
Actually, it increases bioavailable cortisol, so it shouldn't be taken by anyone with high cortisol levels. I agree with humanbean, it should be used very cautiously and is definitely contraindicated for anyone with hypertension.
Interesting to know. My blood pressure has always been on the low side. I think I’ll still avoid it despite being given a combination of all these herbs. Thank you.
Ah I didn’t think antibiotics helped a virus. What were they called out of interest? Mine is a reactivated infection. I was unaware of the infection at the time, but since late teens have had loads of throat infections, so likely one of the many!
Can you find a naturopathic physician? They will get to the cause and not just address the symptoms. They can treat your ebv. There is a more complete lab draw for the ebv. It might possibly be a reactivated infection.
I’m not sure that I’ve ever had EBV but I have treated other viruses with olive leaf extract and goldenseal. I continue to use turmeric with black pepper and Una De Gato. (Cats Claw) to help with short term viral loads. I do have Hashimoto’s and I have seen more and more research out there that says EBV might be one of the causes of Hashimoto’s. Of course we keep looking for the cause and there are many other viruses that could likewise be the trigger.
Again olive leaf extract and goldenseal works for me - I usually don’t take it for more than 10 days. Likewise with the Una De Gato. I take turmeric with black pepper every day.
I have some turmeric with black pepper that is on my list of things to add in to help in general. Never heard of Una De Gato. Will take a look, thank you.
I am not generally brand loyal what I look at is the strength and the price and I buy from reputable people here in the US usually I go online. Having said that, Jarrows is always a good brand name I don’t know that he has an Una De Gato product. NOW is a good brand - I have used their Cats Claw in the past. I shop Swanson as well. I have ordered Isabella Wentz products before but she’s usually way expensive! She does offer a moneyback guarantee if you’re not happy.
Turmeric in golden paste with coconut milk is fab.
Goldenseal is good at fighting Candida.
I think NAC is also useful (a powerful precursor to glutathione) as it cleans the liver and does a lot to prevent secondary infections of the mucous membranes.
Yes - but goldenseal is antiviral as well as anti-fungal. I have actually experienced and others in my family have likewise experienced Goldenseal’s amazing antiviral properties - for instance when it comes to warts (caused by viruses) totally removed planters warts in several people - and I didn’t even take very long like maybe three or four days. But I use it with the common cold and other virus kind of maladies it works wonders! And many times it will come in a proprietary blend mixed with echinacea it’s great stuff!
Yes - online. Many great places. Be sure and shop prices. It is a middle of the road type herbal - not cheap but not super expensive. Recommend buying the liquid form. It has an intense astringent taste - kind of like the hull of a walnut or pecan (the green part) - somehow when you are sick, it almost tastes good!
I had read about it originally in Izabella Wentz’s book and it was in one of the late chapters along the lines of “if nothing else has worked then check out these more random things”, but it sounds like it maybe isn’t all that uncommon but the strong link just not formally made. Interesting! But endo went straight to that. Not sure whether I am lucky or just know something there’s not really much I can do about. 🤔
Hello, I’ve literally only become aware of ebv as of yesterday since listening to medical medium thyroid healing book. I had no idea that there was so much evidence pointing to this for the cause of Hashimoto and other autoimmune disorders. Is it believed you can heal yourself by eliminating the virus out of your system? I’m quite early in the book
Hi Catseyes, I think that it might depend on our philosophy. If we believe that the body being ramped up (for a while) is a healthy response to infection or parasites then it goes hand in hand with belief in our bodies. Otherwise its the doom and gloom Conventional med attitude that our bodies are incapable and need to be overloaded with pharmaceuticals! Or that there's nothing we can do … which is also horribly defeating. So I've opted for working with my body to try to achieve a sweat, other longer-term strategies and to believing I will overcome this.
Not at all sure what you are inferring but this is not some conventional medicine response to alternatives that I am talking about but what I have read many years ago on echinacea info. I don’t know why it may interact negatively with whatever but just saying. Maybe like grapefruit interacts with meds? Maybe check it out?
I was tested 3 years ago. I badgered my specialist into testing the 4 markers.
Mine showed i had it in the past. I am sure I remember when it was as I had an infection for 2 months.
You need to know the levels of your antibodies as this makes all the difference.
Antibodies at say 200 are ok mine were 700. That is not good. EBV can cause cancer, ME and thyroid issues or all of them if the antibodies are so raised. My sister ( a cancer research scientist )told me EBV is the main reason people in Africa get cancer.
Valacyclavir is a good drug for EBV. Sadly it’s been discontinued. I am on it and having to reduce my dose.
Some companies have stopped making aciclovir ( used for shingles which converts into valacyclavir).
I had shingles for two years so another reason to take it.
The gmc dislike the use of it.
Yes EBV can cause ME cancer and Hashimotos to name a few conditions.
It’s worth checking those levels. Yours is now dormant?
That leaves aciclovir or natural remedies. High vit c plus cats claw and elderberry are what I take too.
Echinacea you can only use 3/4 months of the year
The others you can take continually.
If I can help more please do ask.
Oh antibiotics won’t work as it’s a viral infection. If you had a chest infection say then that’s different.
I was always taught look after your gut health. Probiotics, ensure stomach acid is ok( there is a comprehensive stool analysis test) no Candida or paracites etc. Also please be careful not to overdo things at work.( if you had it 5 years ago say then nice as it would be time off now won’t help).
Oh my, it sounds like a massive area for research.
Just fished out the results:
EBNA IgG antibody 457 U/ml (<5 U/ml negative)
VCA IgG 336 U/ml (<5 U/ml negative)
EBV VCA ab. (IgM) 17 U/ml (<20 U/ml negative)
Are these first two high? I didn’t think it mattered...
I actually have no real idea of when I had the infection. I have had loads of throat issues since my late teens, so likely some point then. (I’m 37 now.) More recently I had lingering infections for a couple of years or so - a chest infection that was not far off the lungs, sinusitis, tonsillitis. But have been totally free of all these things since May when I found out about Hashimoto’s and ditched gluten, dairy and soy, and now take lots of vitamins. At the time of the test being done I actually felt the best I have felt in 5 years (not great though!) so would be interested to hear of any knowledge you have re the test result levels.
Also which gut health test would you recommend? I take probiotics, pre-biotics, digestive enzymes if I think somewhere has snuck in some gluten / dairy / soy. But can always do more!
I had no idea that valacyclovir had been discontinued! Very bad news. In 2016 I had acyclovir prescribed as an experiment, because my health fell off a cliff after catching chicken pox as a young adult. Good results in the first few months, but I had to reduce the dose too soon - creatinine went too high during hot weather. I never got back to where I was when I resumed the full dose, but the long term plan was to try again with an Elispot test for EBV etc, and take valacyclovir.
Hi Howard39 reading your reply to Yppah very interesting. Where do you suggest you get the comprehensive stool test from out of interest, if you don't mind saying. Thanks
Hi Howard thanks for the info. I’ve just started reading a book called medical medium thyroid healing and it’s the first I’ve heard of Ebv and it preaches that it’s the cause of underactive thyroid along with other things so I’m surprised to see it substantiated here as I’ve had my doubts! Obviously new to info and what are your recommendations? Checked for ebv and then take the natural supplements you’re suggesting or is there much more
The EBV conceals itself in human cells.The main culprit for bad visibility is is the vital protein LMP2A.
The PLOS Pathogens, a scientific journal quoted that this protein helps the infected cells hide from the T cells. This camouflage may play a major role on the causation of cancer by EBV.
As quoted by German scientists including Dr Moosmemam in Munich.
Hi, if you read up you will find it is a massive area for research. I speak as virologist. I am afraid you will not manage to eliminate the virus, you would be wasting your money on supplements if someone is claiming this is possible. It is carried with your DNA. Read up on EBV replication cycle. It is like (and very related to) the cold sore virus. It stays with you forever. There has never been a single reported case of a person reverting fromEBV positive to negative by blood test. When stressed or other things going on it can reactivate (which may be your case), in those cases acyclovir etc can stop what they call the lytic cycle, which is like a cold sore outbreak. 90%of people in the west carry this virus. If you get it early in life (main transmission mother -child from licking spoon) you generally have no issues. When you have it as a teen you get glandular fever. Either way you are now a carrier. Yes it can trigger autoummune issues like hashimotos and in very rare cases cancer but there are epidemeologocal reasons for the high prevalence in Africa. Equally be mindful of cause and effect. If you have a massive hashimotos immune reaction going on with cell death releasing all sorts of chemicals it is likely the virus will reactivate (same as sun exposure "gives" you a cold sore). So testing for EBV can be a way of demonstrating that. Billions have been pumped into EBV research because virologists, cell biologists and cancer scientists have dedicated their lives to understanding EBV and Herpesviriuses as a whole, biologically there are thousands of ways to use them (as gene therapy, to prevent and even stop cancers) if we understood them more. I have hashimotos myself and sadly everyone needs to find their way in this. I find high dose vit C, and lots of other supporting supplements like selenium, adrenal cortex etc help me personally (there is lots on this forum on this). I do not post often but I feel I can give you an honest answer on this topic. Managing the immune response (supplements, rest, stress reduction) is sadly the only way to deal with hashimotos.
"...lots of other supporting supplements like selenium, adrenal cortex etc"
Does a supplement of adrenal cortex mean an actual adrenal gland extract? I am beginning to suspect that some of my apparent Hashi's symptoms maybe adrenal related. I've avoided telling the doctor about them because they (strange kind of hot flushes, not like the normal ones I have, rather a high heart rate, usually in the 80s, and sometimes feel strange when I wake up) might give the impression of being overmedicated with thyroxine (TSH under range but I still "Feel hypo").
Wow. This really is so fascinating. Thanks for all the info. Everything I read seems to point to slowing down and reevaluating life in general. Definitely on the right track with the diet so far, and so many other opportunities to investigate thanks to all on here.
You’ve made my day in alleviating the guilt I was feeling around potential of passing it to my 4 yr old.
Heading off to google the lytic cycle.
If you happened to have any suggestions re stuff I could read at all that would be appreciated if it is something you had to hand.
Thank you for the very informative and honest reply. We really do, each one of us, have to find our own way. Is that the reason, perhaps, that Drs (the paint by numbers type) don’t really want to help / treat Hashimotos? Wonderful information on EBV - thanks again.
And btw, yes your antibody titres can go down, but they the numbers vary between individuals. Often antibody titres just say: yes I have an immune reaction to virus x. Here on EBV:
The presence of VCA IgG antibodies indicates that an EBV infection has occurred at some time recently or in the past. The presence of VCA IgM antibodies and the absence of antibodies to EBNA mean that the infection has occurred recently. The presence of antibodies to EBNA means that the infection occurred in the past.
Hi, I'm sorry to hear of your problems. Are you aware that a combination of Hashimotos and chronic EBV are very often also connected with Lyme Disease? Unfortunately there is no test in the UK that is reliable enough to indicate Lyme, and you may have to have tests from Germany and/or the USA to help with such a diagnosis, although finding a Lyme Literate Doctor is the best way to get a diagnosis. There are many people in the UK who have done this and are receiving treatment from doctors abroad. My daughter is one of these following years of chasing down blind alleys including the thyroid/adrenal route and vitamin/mineral regimes.
The best contact for Lyme Disease in the UK is lymediseaseuk.com/ It might be worth you checking them out, as unfortunately the medical profession in the UK is woefully uninformed about it. Good luck. Jane x x
Ah. Just been tested for that and await results. I had a strange patch of what I assumed was dry skin and then saw a BBC article about the ring associated, so asked for test. It’s with The Doctors Laboratory - should I be concerned about the accuracy of results then? Sorry your daughter has this and has had to jump through hoops.
Hi, I'm afraid I'm not familiar with the Doctors Laboratory as my daughter was tested In the USA, and although there is NO completely reliable test for Lyme there are specialists there who can interpret tests and symptoms. Please let me know when you get the test results and perhaps I can make some suggestions for you. Jane x
Interesting Yppah, i had a bulls eye rash aswell 5 years ago and they wouldnt test for Lymes at the time. I got a rash aftetwards and I decided it was Pityriasis Rosacea. The Rheumatolgist laughingly tested me recently and it was negative x
Following your post as interested if anything can help after EBV. Firstly sorry to hear you have this as it can be a particularly nasty virus.
Both myself & my daughter had an unknown virus in 2010. We were both really ill & in bed for several months. Neither of us recovered well & were both diagnosed with ME sometime later. I was already retired with RA but my daughter was still working but was never well enough to return to work. Hers is pretty severe & spends most of her days in bed certainly rarely leaving her room. She is 41 years old.
Not long after my husband was rushed into hospital seriously ill in acute liver failure thought to be bone marrow cancer. However after several weeks in hospital it was all put down to EBV! Luckily he recovered but has only managed work part time since. I was then tested & found to have high levels of antibodies so most likely had been the virus I had previously.
In the past 9 years we have tried several different remedies but not found anything that helps. I have very bad memory issues since so much so that I was tested for early onset altzheimers which luckily it’s not but still leaves me with huge gaps here & there.
Anyway I hope you find something that can help & would be interested to know if you do find something useful x
Hi, I am so sorry to hear your family has suffered so badly from this. Are there any new ideas on this post from others that you might try? It must be so frustrating for you all.
Memory problems can occur if not optimally medicated for thyroid problems. Do you have hypothyroidism? I have M.E and Hashimoto's and the symptoms are very similar.
Yes I do have Hypothyroidism on Thyroxine for past 23 years. Lately been unstable due to a virus in Feb which threw levels out. We have come to the conclusion that memory problems are result of ME but they are very specific with regard to directions to places & events. Quite bizarre tbh. I would love to see an Endocrinologist but don’t have any locally either NHS or private.
Only started thyroxine a few months ago so suspect not at correct dose yet, 75mcg. Results not optimal, this would have been on 50mcg.
TSH 1.4 (0.27- 4.2)
FT4 15.8 (12.0 - 22.0)
FT3 4.4 (3.1 - 6.8)
D3 106 (50 - 200) was below range before, still working on it
Active B12 172 (25 - 162) was low in range before
Felt a bit better with dose increase at start, now feel worse again, which is what happened when I started on the 50mcg. Assuming an increase needed...
Thanks for your comment. I looked at Amazon reviews on the book and there are loads of endorsements. But I can’t get over the whole medium thing. Do I need to get over myself?! I don’t care how I get well, I just want to get well. It’s interesting.
Can I suggest that if you want to go a herbal route you find a really good Western Medical Herbalist to prescribe and dispense for you. I had more help from one of those than from anyone else! But it must be the sort who is fully qualified and who dispenses from their own pharmacy and tailors the herbs and their proportions to your exact needs, not the sort who suggests what you can go out and buy.
I had EBV very badly in my early 20s, but recovered and went on to have a very active career, but then got chicken pox in my late 30s and gradually after that my energy disappeared and I began feeling awful. I was finally diagnosed with a thyroid problem 14 years later - it took that long because my blood tests were 'normal'. NDT helped but I still had little energy and felt awful. Somewhat clutching at straws I went to see a herbalist after reading an article in a newspaper and he was convinced the EBV was to blame for how I was feeing.
A virus can't be eliminated but its effects can definitely be lessened with herbal treatment. I regained my energy and started feeling almost ok after about 6 months of treatment, and it also helped my adrenals which had suffered over the years. But it isn't a quick fix. I continued with it for about 4 years but so far, 7 years later, I haven't gone to back to where I was at that time. I have lists of the herbs dispensed at each appointment but many are the sort only a practitioner can acquire. Good luck if you go this route
I contacted the herbalist in the article which I'd read and asked if she could recommend someone in my area, which she did. I'll link below. As with any medical practitioner you need to find a good one, there are lots of indifferent ones and probably plenty who are dreadful
The herbalist I saw went through how I was at each appointment, worked out what I needed and the proportions and made the mixtures up from three shelves full of bottles of tinctures and extracts. Those I took included Goldenseal, Ginseng, Angelica, Dandelion root, Cayenne, Lobelia, Alpine Lousewort, Cohosh, Peach Leaves, Coleus, Horseradish, Guaiacom, White Willow, Crampbark, Bacopa, Hops, Water Hyssop, Gotu Kola among others... I've got this list from the notebook I kept at the time and the sheer variety of them is why I think it's best to see someone who knows what they're doing. Also some herbs, in the wrong concentration, are poisonous.
And here's that herbalist's website and contact details: willowherbalcentre.co.uk/ho... I didn't ever meet her because she lived too far away, but just wanted a recommendation, because there are several different associations which list different herbalists and I found it too confusing to decide by myself.
Thanks very much! If I go down this route I will also ask her for a recommendation. Would definitely want some specialist help I think. Glad it has given you some relief.
I would echo amaba's comment above - he puts almost all thyroid disease down to EBV.
I have had ME and FM for 18 years, although a lot of the reading I have been doing lately causes me to question what precisely is ME??? I am sure a lot of others would also share that thought. Regarding EBV, a holistic health professional I saw recommended a product to me which I have ordered but still haven't started to take for EBV [as EBV is implicated in ME]. He had bought this for someone else with ME and their response to it was remarkable. It is called 2LEBV and is made by a Belgian company called Labolife. I bought it online from a dutch online pharmacy called Viata. It is 30 capsules which you break open and place under the tongue on an empty stomach, one capsule per day. It was quite pricey but based on his recommendation I decided to order it, but just haven't taken it yet because there has been one reason or another for not wanting to risk compromising blood tests etc. I will start it in November and will give feedback to anyone who is interested. The same company also sells a similar product for Cytomegalovirus. I'm not expecting miracles, but any improvement in functioning would be better than I currently have at the moment.
I’ll look in to the book, thanks. I replied on the other post - I have such apprehension about reading that book due to the lack of science, but then if it works, it works...
Also the Belgian company products. Sorry you are suffering from it. Thanks
Good point - I was just trying to be realistic and not get my hopes up too much - but maybe it should be the other way around and the positive mind might make the body work at dealing with the EBV [along with the capsule contents LOL!].
Great attitude! When will you be starting the capsules? Have you already tried L.Lysine?
I look forward to hearing more about your progress especially now in view of your questioning! What's in a name.... !! Quite. Just a label for the convenience (and benefit) of others!! So now you've got that realisation behind you (can be disappointing) you'll be exploring all of the great strategies out there. Eg Getting away from grains, increasing vits and minerals in a targeted approach. Got to find out your own personal, and unique deficiencies, and your way forward xxxxxxxxxxxxx
Have you looked into LDN? I have EBV and had glandular fever in my early twenties which I believe was one of the triggers for my hashimotos. I decided against it as I found what worked for me but it could be an option for you.
Thank you, had never heard of LDN. I am seeing an endocrinologist about all of this, and feel well cared for, so will see first what they say, but also have a list of all the other things to suggest trying. So tricky. Sorry you are suffering from it / Hasmimoto’s / whatever the heck it all is!!!
Tbh I was unwell for a long time with fatigue before I got hit big time with hashimotos. But 4 years on I’m doing well. Your never 100% I don’t think but it doesn’t get a lot better. Especially when your immune system stops attacking your thyroid. Took me 2 1/2 years but once it stopped I was able to manage my systems a lot better. It’s just the damage it does to your body until then.
It’s such a shame it goes unrecognised as such a serious disease with limited options on the NHS for treatment. Use this forum they will help you so much. You take care and ask away if you need any help x
Thanks, JaneyJaney , I hadn’t really thought of it like that, so useful to consider. It’s a really good point as routine is something I am trying really hard to work on - doesn’t come naturally to me.
Free trial being run by a company in Switzerland. It has a herbal mixture that they wish to trial on people with EBV. We did a trial with them on genital herpes. This treatment is free in exchange for reporting back once week (on an app, I think). They seek people who are badly affected as their experience with the herbal mix is that it stops recurrences. Check out vimuneco.com/?lang=en and contact them if it is of relevance to you.
Do not take any turmeric or curcumin during active EBV infection (IgM blood test positive), as it affects liver. EBV is attacking liver, so it may lead to worsen your condition. Some people recommend that here, so please don't take that! It is dangerous!
Clean your liver with Silybum marianum tea several times a day.
Do not expose your body to any kind of UV light (for example anti-covid disinfection UV devices) and sun (not even seconds!).
Take vitamin D, C, B, Selenium and Zinc. Find Cordyceps capsules, they are reported to help.
Try the 2LEBV. Italian doctors use it against EBV successfully.
Most EBV cases last days are caused by Covid-19. Covid 19 reactivates EBV to high activity. If you feel neck pain in the weeks next to covid infection, it is most likely EBV reactivation.
Thanks PaolaT . I’ve actually been OK for a while now. No sore throat in the mornings, no aches and pains, no dull headache. This all went away after I got my first Moderna Covid vaccination. Since had a mild case of Covid and no issues from that either. Not tested EBV levels, but none of the usual symptoms from it anymore. Touch wood.
Turmeric is interesting, read a few things recently about people overdoing it.
Indeed. Turmeric stops inflammation (this is not exact, it stops immunity system!) and stops pain like Paracetamol (Acetaminofen) does, but without stomach side effects. It acts in a similar manner as corticosteroids do. This is not wanted in most cases except on situations, when immunity reduction is needed (i.e. when imuunity system goes crazy or needs to be slowed down).
It has also some very bad side effects when overdosed - it may cause liver overload and/or even shutdown. (the same way as with Paracetamol - eight doses eaten within few hours and you are dead).
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