Dr Byron Hyde's video talking about the 1904 epidemic, the compensation paid to LA ME victims etc

[ScottTriGuy]

@ScottTriGuy How did it work, did your doctor send your blood ? Is this the best lab to check for enterovirus type when you're in Canada ?

Yes, the functional medicine doctor I stumbled on sent it to Armin - he works with a nurse in his office who took the sample and sent it off (iirc).

Although (and again iirc) @Hip determined that Armin doesn't specify which coxsackie virus (A, B, etc) is being detected in spite of what the report says.

I'm not sure if Armin is the best enterovirus lab for Canadians, but I don't think there are a lot of options, but Hip may know that as well.

I haven't come across any of Dr Hyde's info that says where he (would) send blood for enteroviral testing but would be good to get his thoughts.

 

[Hip]

Although (and again iirc) @Hip determined that Armin doesn't specify which coxsackie virus (A, B, etc) is being detected in spite of what the report says.

Coincidentally, I wrote to Armin a few weeks ago, asking about his coxsackievirus test, and it turns out that his test only tests for coxsackievirus B1 (and coxsackievirus A7), but no other coxsackieviruses. I just updated the Armin thread with this info: see this post.

 

[Mij]

I'm trying to locate my lab results for (RNA) enterovirus. I think mine were sent to the National Microbiology Laboratory (NML) in Winnipeg.

 

[Dechi]

Yes, the functional medicine doctor I stumbled on sent it to Armin - he works with a nurse in his office who took the sample and sent it off (iirc).

Although (and again iirc) @Hip determined that Armin doesn't specify which coxsackie virus (A, B, etc) is being detected in spite of what the report says.

I'm not sure if Armin is the best enterovirus lab for Canadians, but I don't think there are a lot of options, but Hip may know that as well.

I haven't come across any of Dr Hyde's info that says where he (would) send blood for enteroviral testing but would be good to get his thoughts.

@ScottTriGuy I have asked Dr Hyde about sending my blood to be checked for enterovirus type and as he currently is in Italie right now, he told me he would check with l'Institut Pasteur. He used to send samples to them a while ago.

 

[unto]

Dr. Byron Hyde is in Italy ??
I guess on vacation ... not to do conferences....

 

[unto]

Hi @unto could you explain your experiences that suggest that please

Hi@Knackers,
In 32 years of ME I have seen several people (family, relatives, friends) manifest
The symptoms of the disease; I am convinced he has also sent me two people
That I met 20 years after the beginning of ME on my body;

These experiences made me realize first that ME is contagious (I believe as mononucleosis with saliva and other body fluids) with the latest experiences that the virus remains present and active in our body.

 

[duncan]

If ME involves damage to the limbic area of the brain, what is to say that it cannot be caused by a herpes virus, an enterovirus, a TBD, etc, just species or strains or versions that cannot be detected or monitored by historical or conventional methods?

This is not to discard in anyway the idea that an immune system corruption or autoimmune condition is not the culprit - it's just suggesting that it can be any number of different pathogens still at play, potentially, instead.

In effect, Hyde and Chia and Peterson and KDM and others are all correct - they are not mutually exclusive. They are just different anchor pathogens. The results would be varying manifestations of a condition whose different hues are painted or defined by different pathogens. This would be similar to the growing opinion that MS has one or more infectious causes.

A side benefit of this explanation would be how sometimes ME appears contagious, other times it does not.

 

[Dechi]

Dr. Byron Hyde is in Italy ??
I guess on vacation ... not to do conferences....

He lives there part of the year. His children live in Europe. He's never completely on vacation, he sees patients there also and takes care of what needs to be addressed from there.

 

[knackers323]

what are the treatment options for enteroviral infections?

 

[ScottTriGuy]

what are the treatment options for enteroviral infections?

Check out @Hip's Roadmap.

 

[knackers323]

thanks Scott. at what time in the video is this mentioned? the huge compensation paid to the medical victims of the 1930s epidemic. i cannot find it or im deaf

 

[Allison H M]

what are the treatment options for enteroviral infections?

Dr. Hyde has written that there have recently been drug trials (still ongoing) in Switzerland, for anti-enteroviral drugs, and that they have had some success in animal models. So, nothing for humans yet. I assume that they have to find the exact anti-enteroviral drug that will counteract the exact enterovirus that we have active in our gut or G.I. system, and also the correct dosages, etc..

 

[Allison H M]

Yes, the functional medicine doctor I stumbled on sent it to Armin - he works with a nurse in his office who took the sample and sent it off (iirc).

Although (and again iirc) @Hip determined that Armin doesn't specify which coxsackie virus (A, B, etc) is being detected in spite of what the report says.

I'm not sure if Armin is the best enterovirus lab for Canadians, but I don't think there are a lot of options, but Hip may know that as well.

I haven't come across any of Dr Hyde's info that says where he (would) send blood for enteroviral testing but would be good to get his thoughts.

Dr. Hyde sends his slides of gastric mucosa (stomach lining) biopsy to Dr. John Chia in California. Dr. Chia has a lab there specifically for enteroviruses (EVLabs).

 

[Allison H M]

I see, at first I was afraid his website was no longer active! (Unfornately, That's happened to some many good resources like those on cfids-cab, rescind and Dr Bell's site) Instead, looks like the me-pedia link pointed to an old version.

Here is the new link to the book which worked for me: The Clinical and Scientific Basis of Myalgic Encephalomyelitis

I'm sure you could order it off amazon or from his site directly. A note: for me the site automatically plays the sound of a tiger (or lion ) roaring so that might be startling for some of us.

I found that the link posted above by @johnnydme that is 'the book title' wouldn't work for me because the file is so large. (This is a 724-page book, almost 2 inches thick, textbook-size, but really excellent.) But the word "site" in @johnnydme's post DOES work, and takes you to the "Resources" page of the new updated Nightingale Research Foundation website. The book is pictured on that page and it is supposed to be downloadable. I do not know of anyone downloading it, perhaps because of the size... but if someone can download it and it works, can you please report back here so that we know that the link is working ? Thank-you ! (I have the actual book and am not good with tech things, so I can't try the download myself - sorry !) P.S. The growling sound seems to have been removed from the Homepage.

 

[Dechi]

@Allison H M I did download it and had no problem. It's in my dropbox. I did it from the old website, though.

 

[johnnydme]

Here is a publication Dr Hyde released in May:
http://www.millionsmissingcanada.ca/wp-content/uploads/2014/09/Hyde-What-is-ME.pdf

Thanks!

I think one of the regrettable things about Hyde's work is that he has published so little in the scientific literature. ( Maybe this is due to a lot of the medical journals, at least in the US, following the dubious "lead" of the NIH's Straus and CDC's Reeves and adopting a very hostile posture towards biomedical work in this disease. )

Jodi Bassett, of Hummingbirds' Foundation for ME, considered him the world's foremost expert on this disease, and I think, personally, there is little doubt he is one of the top ones.

When I read his work I can't help but be struck by the question how many researchers and doctors even know of it? Even those who've been researching this many years?

For ourselves it would be a tragic shame if so much insightful stuff was lost,... or had to be rediscovered all over again.

As conferences have been mentioned: Maybe if the Stanford conference becomes an annual thing he can be invited to give a talk on the history of ME and the co-occurrence with polio outbreaks? @Janet Dafoe (Rose49)

Or the Invest in ME conference?

Even having made considerable effort to stay up to date with medical research in Myalgic Encephalomyelitis I don't remember hearing of "vascular cuffing" or having seen SPECT scan of a patient's brain showing such loss in blood perfusion in these specific areas:

• Entire anterior temporal lobe [ memory & administrative]
• posterior frontal lobe (motor cortex) [muscle strength and coordination]
• anterior superior cerebellum [(balance and coordination mechanisms]
• insular cortex [ principal area regulating cardio-vascular homeostasis, function, timing and regularity ]

1. Light blue: 2 standard deviations below normal
2. Dark blue: 3 standard deviations
3. Green: 4 standard deviations
4. Black: 5 standard deviations
5. Gray area represents normal blood perfusion areas.
6. Red and white areas represent increased blood flow.

Note: Image and Legend, Taken from pdf.
______________________<hr />
With such resolution.

It's great to have this... but I feel it is a shame that this material (to my knowledge) hasn't been published as case reports. Maybe this can change?

Since he is very strict on the definition of ME presumably all of his patients are classic cases and case reports on them would be applicable to all who have it.

-jd (edited for formatting & spelling 8/24)

 

[Allison H M]

@Allison H M I did download it and had no problem. It's in my dropbox. I did it from the old website, though.

Thank-you ! I hope that the same thing will happen with the updated site. I started to try that route on the new site, and it said the file was too big for my dropbox... I never use the dropbox so I stopped at that point. Like I said, I'm really bad at tech, so I don't take any chances. So... again, if anyone is successful at downloading the "big book" from the updated site, I would appreciate knowing about it so I can relay that info to Dr. Hyde's web-person. Thanks !

 

[Allison H M]

And the treatment is.... we dont currently have one for enterovirus do we? Or do they think the virus is gone and the damage is left behind?

The treatment would be an anti-enteroviral drug. These drugs are currently in trials in Switzerland, so we may be able to hope for something in the future if that works out. Dr. Hyde has shown that the enterovirus is not gone but continues to be active, and therefore the hypoperfusion (insufficient blood circulation in parts of the brain that correspond to our symptoms) continues, and so do all our symptoms. I had this EV test done in 2016 and it showed I still had an active enteroviral infection in my gastric mucosa, and I have been disabled with "classic M.E." since 1989.

 

[knackers323]

@Allison H M what treatments have you tried to treat the virus?

 

[Allison H M]

@Allison H M what treatments have you tried to treat the virus?

I have not tried any treatments because I just found out I had this enterovirus last year, and there is no treatment for it yet. As I said in a previous post here, the logical treatment would be anti-enteroviral drugs, but these are still at the experimental stage (as far as I know, only on animals so far, but with some success). These trials are happening in Switzerland. I believe it's Roche Pharmaceuticals. I have heard no update on their progress since Dr. H mentioned them in his 2016 M.E. Definition booklet.