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IACFS: Dr. Byron's Hyde booklet on ME

Mij

Messages
2,353
Yes it is very expensive and that is one of the problems with having this illness. We all keep trying different things to try and feel better but end up just wasting our money.

One thing that Nutrichem found that my other docs hadn't was a high level of gluten antibodies. I had the standard blood and urine test done first which showed I had abnormal gut flora. This led to another test for gluten antibodies in the stool in which I scored a high amount. I took this to my GP who ordered a Celiac Panel, something she never wanted to do before. I tested positive for the anti-gluten antibody but not the other Celiac antibody. I then was sent for an upper GI scope and biopsies to see if I actually had Celiac Disease. My biopsies were negative but since I still have antibodies to gluten the gastroenterologist said to avoid wheat but not as strictly as if I had Celiac . The bottom line is that by cutting out wheat I might start to feel better- not cured- after a while. Avoiding anything that stresses the body and leads to inflammation and increased immune response could potentially improve some symptoms.

The other good thing about having the Nutrichem testing done was that it confirmed that I have a lot of abnormal biochemistry. I take the vitamin formula from them and even if I don't feel better at least I can think that perhaps it is correcting some nutrient deficiencies that could be harming or aging my body. I, like many people with ME/CFS have a low level of antioxidants which can really damage a lot of things in the body. Basically I am rusting away. By taking antioxidant supplements perhaps I can fix or stop some of this rusting, even if I don't actually feel better.

Have you followed the Richvank threads about how important the TYPE of Vit. you take is? I haven't got my brain around it all yet since it is very complicated but that could explain why the vitamin supplements many of us take aren't doing anything. My next step, once I have the energy, is to take this information from Richvank to Nutrichem and see what they think.

Yes this was my thinking too; if I have deficiencies at least I can now try to correct them re my test results. It's not a cure and I certainly wasn't expecting one from taking supplements but at least I can continure to work on it without thinking I'm just blowing in the wind.

I went to see a virologist to get my immune panel done and when I mentioned how sick my gut was he tested me for h.pylori and I was positive so he treated me for this and my gut problems went away after so many years of feeling sick. So sometimes we can find things just by mentioning them because we have so many other things going on- it makes their heads spin lol.

My doctor wanted me be tested by Enterolab in the US for gluten sensitivities but I decided to try the gluten free diet instead of paying for the test. The gluten free diet was actually easier than I thought it would be because there are so many alternatives in healthfood stores now. I didn't feel any better after one year but my digestion did improve. I think we have to heal our gut in order to move on so I think you should try this and see.

I am familiar with Rich's protocol and I brought it to my doctor to look it over since he is into this stuff. I take folonic acid and methyl B12 with a few other things but the one thing that helped me in a noticeable way was Magnesium injections 3x/week and fish oils.
 

Dolphin

Senior Member
Messages
17,567
You are certainly NOT wasting your time Boule de Feu - having used sections of his "Scientific & Clinical" to take to my Consultant Neurologist in the early days (and with which he agreed as the symptoms are spelled out), it is very interesting to read all Byron Hyde has to say now - even if no-one is quite there yet. Just wonder what he means by 1984-1989 - novel or untyped enteroviruses.
For anyone who doesn't know, the book ("Scientific & Clinical") is a collection of papers from speakers who presented at the 1990 Cambridge Symposium. It would be like if somebody collected papers from the speakers at the recent IACFS/ME conference.
 

Dolphin

Senior Member
Messages
17,567
Dolphin said:
Another thing that was odd was the way somebody in the office was very annoyed that they had been nominated and were taking part in the Vivint competition. This was a competition offering free money and they didn't want to be in it.
Could it be that they are not a charity?
(it's not a statement, it's a real question)
No, don't think that is it:
The Nightingale Research Foundation is a Canadian registered charitable organization dedicated to the study and treatment of Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS) and related illnesses.

from http://www.nightingale.ca/
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Gamboa - my thinking is the same as yours re antioxidants and supplements for deficiencies. I have a whole host of antioxidant problems and low nutritional status, despite having a good balanced wholefood diet for the past 20 years. I wonder what it is that makes us so prone to poor antioxidant status?
I am also supplementing with vitamin and minerals in the hope that if it doesnt make me feel much better it at least stops further rot from setting in. At the age of 41 im beginning to wonder how much my poor antioxidant status is affecting the ageing process.
The problem is that gut function can be poor so absorption is poor. Im just about to try a transdermal mineral spray formulated by Dr Myhill, she feels its much more easily absorbed if you bypass the gut. Im also going to try an transdermal iron spray as i have had low ferrittin for years and despite supplementing it doesnt budge much.

BDF- please do keep posting its interesting stuff and seems to have sparked a good discussion!

All the best, Justy.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
For anyone who doesn't know, the book is a collection of papers from speakers who presented at the 1990 Cambridge Symposium. It would be like if somebody collected papers from the speakers at the recent IACFS/ME conference.

BTW, the quotes are from "The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.)" booklet which was made specifically for the IACFS conference in Ottawa, 2011

not from the Cambridge booklet - 1990
 

Dolphin

Senior Member
Messages
17,567
BTW, the quotes are from "The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.)" booklet which was made specifically for the IACFS conference in Ottawa, 2011

not from the Cambridge booklet - 1990
My post http://forums.phoenixrising.me/show...-booklet-on-ME&p=208343&viewfull=1#post208343 was in reply to Enid's post - she was referring to the book on the Cambridge conference. I have now edited the post to try to clarify this.

That book tends to get a lot of praise but I think some people may think Byron Hyde wrote most or all of it.
 

Gamboa

Senior Member
Messages
261
Location
Canada
I went to see a virologist to get my immune panel done and when I mentioned how sick my gut was he tested me for h.pylori and I was positive so he treated me for this and my gut problems went away after so many years of feeling sick.

Was this in Ottawa?
 

Mij

Messages
2,353
The virology lab is at CHEO but the tests have be ordered through the virologist I saw.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
From the booklet mentioned in the link above

"It is my belief that the technological medical community should be funded to do a
complete cardiovascular, neurovascular, thyroid and endocrine, and neurophysiological
assessment of say:
250 of these children patients and
250 adults with acute onset M.E and
250 gradual onset CFS type patients.
The neurophysiological examination side should include (a) brain SPECT scans, (b)
Xenon brain SPECT scans, (c) PET scans, (d) QEEG neuropsychological scans as well
as (e) MRI scans since some of these children will be missed cases of multiple
sclerosis or other space occupying processes or CNS injuries. This might seem
excessive to some, but only if such an organized and structural approach is taken will
we ever be able to come to grips with these disease processes and separate them out,
one from another.
I have heard so many physicians say that this is too expensive. Yet the cost to examine
all 750 patients would definitely be a fraction of the cost of building one atomic bomb,
and less than the cost of building one jet war plane. Where are our priorities?"
Dr Byron Hyde 2006.


I wonder why this hasnt been done so far by his foundation or why he hasnt sought the funds to do this.
It seems that he believes that M.E can only ever be caused by neurological damage and that this damage always shows up if you do the right brain scans.
This makes sense as M.E is classified as a neurological disease by The World Health Organisation and has been since 1969. I was wondering what this meant for other M.E doctors theories such as Dr Myhills mitochondrial dysfunction theory and Dr Cheneys heart dysfunction theories. But i imagine that what Dr Hyde is saying is that those are all possible changes that take place in the body due to lesions or damage in the brain which precedes the I would be interested to know what the other major M.E docs make of his work. A big part of me thinks that it is good that he is such a purist -M.E is supposed to be a neurological disease, but on the other hand would i than be excluding myself -and why arent all the researchers looking at this.
I think the reason they are not all looking a t this is because either:
1. They are not researching M.E but CFS (in which case why Is the ICC trying to appropriate the name)
2. They do not believe M.E is a purely neurological illness and that Dr Hyde's theories are not correct -he focuses too much on the brain and not enough on the other known dysfunctions.

All the best, Justy.
 

Dolphin

Senior Member
Messages
17,567
From the booklet mentioned in the link above

"It is my belief that the technological medical community should be funded to do a
complete cardiovascular, neurovascular, thyroid and endocrine, and neurophysiological
assessment of say:
250 of these children patients and
250 adults with acute onset M.E and
250 gradual onset CFS type patients.
The neurophysiological examination side should include (a) brain SPECT scans, (b)
Xenon brain SPECT scans, (c) PET scans, (d) QEEG neuropsychological scans as well
as (e) MRI scans since some of these children will be missed cases of multiple
sclerosis or other space occupying processes or CNS injuries. This might seem
excessive to some, but only if such an organized and structural approach is taken will
we ever be able to come to grips with these disease processes and separate them out,
one from another.
I have heard so many physicians say that this is too expensive. Yet the cost to examine
all 750 patients would definitely be a fraction of the cost of building one atomic bomb,
and less than the cost of building one jet war plane. Where are our priorities?"
Dr Byron Hyde 2006.


I wonder why this hasnt been done so far by his foundation or why he hasnt sought the funds to do this.
It seems that he believes that M.E can only ever be caused by neurological damage and that this damage always shows up if you do the right brain scans.
This makes sense as M.E is classified as a neurological disease by The World Health Organisation and has been since 1969. I was wondering what this meant for other M.E doctors theories such as Dr Myhills mitochondrial dysfunction theory and Dr Cheneys heart dysfunction theories. But i imagine that what Dr Hyde is saying is that those are all possible changes that take place in the body due to lesions or damage in the brain which precedes the I would be interested to know what the other major M.E docs make of his work. A big part of me thinks that it is good that he is such a purist -M.E is supposed to be a neurological disease, but on the other hand would i than be excluding myself -and why arent all the researchers looking at this.
I think the reason they are not all looking a t this is because either:
1. They are not researching M.E but CFS (in which case why Is the ICC trying to appropriate the name)
2. They do not believe M.E is a purely neurological illness and that Dr Hyde's theories are not correct -he focuses too much on the brain and not enough on the other known dysfunctions.

All the best, Justy.
It is a pity that his theories haven't been put to the test. It is also a pity some people think they have been proven: one doctor saying or writing something doesn't prove anything - lots of people have theories. I would be concerned he might hype particularly tests to justify getting them done.

You ask why he/his foundation hasn't sought the funds - I'm not sure but as has been pointed out he isn't particularly focused on publishing research papers. And neither does the foundation seem to focused on it (publishing research).
 

Dolphin

Senior Member
Messages
17,567
A Byron Hyde abstract in the IACFS/ME conference handbook (I'm not sure if the abstracts should generally be posted as potentially it might jeopardize publication? But this doesn't involve data:

Canadian Techniques of Investigation of M.E. / CFS & FS Patients and Resulting Anatomical,
Patho-Physiological and Genetic Findings
Byron M. Hyde, M.D.
Allie Chor: Research Assistant

The Canadian health care system, provides free physicians, investigation and non-pharmaceutical treatment to all patients.
Tests include all blood, urine, tissue and technological testing such as cardiovascular, ultrasound, MRI, PET,
SPECT, Nerve Conduction, Radiological or Nuclear Medicine examinations. Any corrective surgery, procedural care or
hospitalization are also provided free of charge. Unlike in the UK, Australia and many other European countries any
physician in Canada can order any test available in Canada. Unlike US physicians, we do not have to ask whether
the patient has insurance coverage since all are covered.

M.E. and CFS Patients: This system allows an understanding of the patho-physiological basis of why a patient is chronically
ill with either a fatigue, cognitive or pain syndrome or a combination of these symptoms. This free assessment has
resulted in a significant difference in the understanding of the cause of M.E. and CFS illness.

Chronic Fibromyalgia & Fibromyalgia Syndromes (FS): Due to long term follow up and the ability to do significant
testing over years at no cost to the patient, we have shown that a majority of chronically ill fibromyalgia patients actually
suffer from developing rheumatoid, arthritic, structural, medication induced or genetic illnesses.

How to examine & test M.E. and CFS patients: This paper will demonstrate the techniques and difficulties of total body
(system and organ) assessment over the past 26 years. The paper will demonstrate the reasons why patients with M.E.
and CFS, irrespective of the initiating cause(s), remain chronically ill with brain and fatigue dysfunctions.

The Multiple Pathologies of M.E., CFS and FS Patients: This paper will also demonstrate the findings which suggest
many patients diagnosed with M.E. or CFS are treatable and many require more specific treatment research.

Access to a free investigational template will be provided to all symposium members

Byron M. Hyde, BA(Chem), MD, Chairman, Nightingale Research Foundation, 121 Iona Street Ottawa, Ontario,
Canada, K1Y 3M1: bhyde@nightingale.ca
I find all the references to "free" a bit odd, especially as attending him is far from free. And the person I know who attended him after he made similar comments in a talk found they had to pay for quite a lot of tests, so it should probably be clarified that this doesn't apply for people outside Canada coming to Canada.
Also, I imagine that the situation regarding testing in Canada isn't as clear cut as is made out.