I read in a book by Antony William, who is a self proclaimed "medical medium", that platelet disorders are caused by a virus. He has a very unusual approach and he seems to think that a lot of common disorders are caused by various stages of Ebstein Barr virus. I will not dismiss him outright, but rather try and get my head round to understand why he would make these claims. In any case, he believes that lot of the common foods we eat are not good for us, like eggs for example. There is no harm in trying what he suggests because it is all healthy even if very restrictive and now that my summer holidays are over and done with, I could give his suggestions a trial.
I am ET JAK2+ aged 63. on 10x500g HU weekly. Just had an appointment at Guys and my platelets have gone up to 700+. The haemo was not too concerned because everything else is withing normal range. She just told me to keep an eye out for the usual symptoms, breathlessness, headaches etc. I am not so convinced that high platelet count is too bad but I can always top up my HU to 2x500g daily if I think that something is not quite right.
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Searcher56
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I would be wary of anyone who is a self proclaimed "medical medium". The motives are likely to be:
1) To exploit people with MPNs, who live with difficult symptoms of their incurable conditions. Making a profit out of selling us books with false hope is nothing but fraud.
2) A self serving desire to insert themselves into a situation where they claim expertise but have no qualification. They are just looking for personal glory.
The best advice is to check that anything you read is peer reviewed ie: read and approved by other doctors of equal qualification. The peer review system is there to protect patients from people like this!
P.S. Don't forget - any kind of restrictive diet is not a balanced diet.
Yes I am wary. Anthony Williams is American and the Americans have a very good marketing strategy but that does not invalidate him. The way he writes makes me take notice of him. He does not try to sell any expensive supplements, all his advice is affordable to anyone. In any case following his recommendations are not unhealthy, just restrictive. I have already been on a diet of no gluten, dairy and sugar but I have slipped up, especially during holidays. Now I am going to give up eggs as well, as an experiment.
I am also wary of the advice that comes from the medical profession. There are fashions that are later proven not to be so true, like saturated fats are now good as previously they were not. Each person has to experiment for themselves, not to take anyone's word for anything.
It looks like I may have offended you in my reply to one of your postings. If so I would like to apologise deeply and reassure you that it was unintended. I am just concerned about unqualified people who claim to have all the answers especially when they exploit people for money.
I can see from what you write that you do plenty of research, analysis, and are prepared to experiment. I am sorry if what I wrote did not put this across clearly. We have a small space to write here, and really such topics require lengthy conversations to do them justice.
I think you should enjoy your scones with jam and clotted cream guilt-free as holidays are for relaxing and doing things differently. I hope you had a very enjoyable time.
Hi Searcher, I cannot tell you how much malaise EBV is supposedly causing in the world. In the US and Europe apparently 80%+ of the population have it. Once you’re tired or have something else, it acts up, just like Lyme. I do believe it must be a cofactor of our disease. I cleaned up my diet and banned all detergents, non-organic cosmetics and perfumes from my home. I’m now getting rid of amalgams. 5 teeth done, 6 to go. Will be done in January.Also, I’m removing root canals that have cavitation (3 out of 5). My mouth is still a mine field. After all this is done, I go after parasites first, then viruses! This summer I am trying to do meditation and trauma healing. That should be in about a year. I do believe that there is a way to get our bodies to fight for themselves and lead to healing. Please send more info regarding EBV! Thank you. Anag
I am trying to figure out this EBV. Anthony William "Medical Medium" suggests quite a restrictive diet in his latest book "Liver Rescue" which I am going to try out. No eggs, for example. Also I am reading about alkaline diet. I am currently on holiday and unfortunately I do not have enough will power to overcome all the psychologies that go with holidays. I have had ice cream on the beach and scones with clotted cream and strawberry jab and Cornish pasties but once I am at home I will go back to my healthy eating plans!! Trauma counceliing I am interested in, all sorts of old hangups only deplete our energies
I just heard a specialist talking about shame (usually caused in childhood) and it’s connection to Hashimoto (which I have), cancer and other Autoimmune illnesses. Wow! His name is Mario Martinez, PsyD. biocognitive.com/index.php
I will definitely be looking into this.
Your diet on holiday is scrumptious!! Especially the scones with clotted cream. I haven’t eaten wheat or drunk any milk in 20 months. I am much healthier, but I must say, “ Those were the days!” Cheers. Anag
Yes without reading your link, I was thinking that shame could be the cause of a kind of inflammation undetectable by blood tests that would cause the body to produce lots of platelets to protect itself. I am working on my shame/guilt issues and I do believe that I will overcome them and then hopefully my body can rebalance itself. There is a curious relationship between mind and body and how they interact with each other.
I've heard about this medical medium guy before and I've heard people say that he is quite the quack but i can't say for sure because I've never read his book. But after working in the veterinary field I have seen how tick borne diseases have affected platelets and it can lead you to think there may be a virus out there that could lead to the opposite effect which is too many platelets. Why not? But I don't think eating a special diet is going to fix it. It may be a disease that is recognized in 10 or 20 years. We are learning new things every day.
Hello Searcher56. EBV has been proved to cause lymfoproliferative diseases, so it is plausible that it may have a role in MPN too, at least in some individuals. I had a bad EBV infection in my teens, and I am now thinking whether EBV contributed to my ET starting 20 years later. Some people may be genetically more prone to having adverse effects.
I have been reading books by the self proclaimed "Medical Medium" Anthony William. In one of his books he claims that platelet disorders are caused by a virus. I am interested in his approach and I am trying to get my head round his thinking. I don't recall ever having "Mono" or EBV any time during my life but according to Anthony William, viruses thrive of certain foods like eggs or dairy. Cutting eggs out of my life has proved difficult. I am still racking my brains for answers.
Hello Searcher56. Interesting. First time I hear that food could affect viruses. It does have effect on bacteria of the gut so why not viruses too. Interferon being used to evict chronic virus infections and as an MPN treatment is something that my brains have been working on. Could a body develop some type of fatigue of the immune system where extra interferon could trigger a more favourable outcome? Immune systen would then be able to attack Jak2+ stem cells better. So, taking care of our immune system and anti-inflammatory diet may very well be a path to better prognosis.
I admire your attitude of just getting along. I used to be a worrier, and have worked a lot on my health anxieties. Growing older, I have realised that everyone's days are numbered, and what counts is what you make out the time you've got left. Let's make the best out of that while we still can.
Hello! I was looking for information on folic acid and came across your question. It just so happens that I NEED my platelets raised so I am going to TRY folic acid in the hopes that MINE will raise. Ya never know and I seriously doubt that taking the folic acid will hurt.
Having LOW PLATELETS caused me to not be able to get a scheduled surgery because they said they might not be able to stop me from bleeding afterwards. My Hematologist ordered several tests and even tried some sort of infusions but nothing worked. They think my spleen sees them as bad and is collecting them in an autoimmune fashion. (Can't find better words right now.)
I've saved this chat so I can come back to give you feedback. Please update it if you have new information for us, okay? 😊 Thanks!
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