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IACFS: Dr. Byron's Hyde booklet on ME

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
We were fortunate enough to get a copy of Dr. Hyde's booklet at the conference.
I'm about to read it and see if I could use it for my Dr.'s appointment tomorrow.
I thought that I could "push" things a little bit and ask my GP to follow the "missed diagnoses" route... at least for a little while.

I would like to lend him my copy. Would you advise against it?
Could it play against me?

P.S. Once I am done with it, I would not mind mailing it to anyone who would like to read it. We could make a list of names and make sure everyone gets a chance to have a look at it. Is this feasible?
 

Dolphin

Senior Member
Messages
17,567
We were fortunate enough to get a copy of Dr. Hyde's booklet at the conference.
I'm about to read it and see if I could use it for my Dr.'s appointment tomorrow.
I thought that I could "push" things a little bit and ask my GP to follow the "missed diagnoses" route... at least for a little while.

I would like to lend him my copy. Would you advise against it?
Could it play against me?

P.S. Once I am done with it, I would not mind mailing it to anyone who would like to read it. We could make a list of names and make sure everyone gets a chance to have a look at it. Is this feasible?
Is it this booklet? http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
I think that it would depend on your doctor. My doctor admits he does not know much about this illness and appreciates any information that I give him. I would think that a physician not open to Dr. Hyde's suggestions would be one to stop seeing.

glen
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
I think that it would depend on your doctor. My doctor admits he does not know much about this illness and appreciates any information that I give him. I would think that a physician not open to Dr. Hyde's suggestions would be one to stop seeing.

glen

I will tell him that I went to the ICFS conference and got some documentation. I will see what he tells me.
I'm not done reading the booklet and my brain fog is too severe to be able to make sense of what i'm reading.
I'm not ready to discuss it with him.
 

Dolphin

Senior Member
Messages
17,567
Once the doctor does all the testing Hyde recommends, what's the treatment?
From my reading of BH, I haven't found him focus too much on treating M.E. He seems in his writing much more focused on treating the condition if it's not M.E. Of course, spotting a misdiagnosed is useful.
 

Enid

Senior Member
Messages
3,309
Location
UK
It would be good to see his latest - at least ruling out "missed diagnoses" (and treating) would be a great guide for Docs whilst research on Retroviruses comes to agreement. Taking parts of his "The Scientific and Clinical etc" to my Consultant Neurologist was what made him agree on the ME diagnosis - he even said "and they think it's viral" whilst their blood tests revealed nothing.

(Patchy high signal changes in MRI brain scan and weak positive anti smooth muscle antibodies found though - the sort of things amongst many (GI/Glands) he might address or advise on for you and your Doc).
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi BDF, i think its a rare doctor who will actually read stuff you give them -if you think your doc falls in this camp then i say go for it.
My (new) GP decided that i hadnt had enough things ruled out and worried i may have been misdiagnosed (im classic CCC and ICC, so i dont think so) to this end i have seen an endocrinologist who is doing CT brian scans, pituitary function etc.
To my mind it would be just as good if we could get our doctors to do tests to rule M.E in such as SPECT scans or some of Klimas's immune markers for example.

Even though im in the U.K i would be very keen to read this booklet and would happily pay postage. Perhaps if wew had a list of people who wanted to read it we could do Canada and the States first before sending it to Europe otherwise its crazy having it criss crossing the Atlantic. Let me know what you think of this idea -but if theres no other takers im keen to read it as soon as possible.
Take care, Justy.x
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
From my reading of BH, I haven't found him focus too much on treating M.E. He seems in his writing much more focused on treating the condition if it's not M.E. Of course, spotting a misdiagnosed is useful.

I'd wish my doc would find something totally different - we could treat it and that would be the end of it. =-)
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
It would be good to see his latest - at least ruling out "missed diagnoses" (and treating) would be a great guide for Docs whilst research on Retroviruses comes to agreement. Taking parts of his "The Scientific and Clinical etc" to my Consultant Neurologist was what made him agree on the ME diagnosis - he even said "and they think it's viral" whilst their blood tests revealed nothing.

(Patchy high signal changes in MRI brain scan and weak positive anti smooth muscle antibodies found though - the sort of things amongst many (GI/Glands) he might address or advise on for you and your Doc).

I'm pretty sure mine is also viral. I was sick from November 2005 until March 2006 and I could not get rid of it. My doctor said: "There is a virus in there, and he is way too comfortable to get out!" Six years later... it's still making my life miserable.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Hi BDF, i think its a rare doctor who will actually read stuff you give them -if you think your doc falls in this camp then i say go for it.
My (new) GP decided that i hadnt had enough things ruled out and worried i may have been misdiagnosed (im classic CCC and ICC, so i dont think so) to this end i have seen an endocrinologist who is doing CT brian scans, pituitary function etc.
To my mind it would be just as good if we could get our doctors to do tests to rule M.E in such as SPECT scans or some of Klimas's immune markers for example.

Even though im in the U.K i would be very keen to read this booklet and would happily pay postage. Perhaps if wew had a list of people who wanted to read it we could do Canada and the States first before sending it to Europe otherwise its crazy having it criss crossing the Atlantic. Let me know what you think of this idea -but if theres no other takers im keen to read it as soon as possible.
Take care, Justy.x

Since Enid and you are interested, we could start with both of you.
I will send it to either one of you and then you could make sure both of you read it.
We will go from there.

As for postage, don't worry - I will pay to send it. It's not big enough to worry about that (it can fit in a small brown envelope).
Maybe everyone could pay postage for the next in line?
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
From my reading of BH, I haven't found him focus too much on treating M.E. He seems in his writing much more focused on treating the condition if it's not M.E. Of course, spotting a misdiagnosed is useful.
Does anyone have an idea in what percentage of cases he finds such a missed diagnosis? And in what percentage of the missed diagnoses people can then be treated successfully? Thanks.
 

Enid

Senior Member
Messages
3,309
Location
UK
Sorry to hear Boule de feu - same for me. Could you find any guidance at the marvellous Ottowa Conference to aid persisting problems. I'm pretty certain after many years K de M, Mikovits (et al) are well on the way at least (HGRVs). Have/can you try treatments much spoken of here on PR there seems to be newer and newer ones out. An old friend of many years has been under KdeM (MLV positive) and finding his treatment (GMaf, Antibiotics etc) working - it is tailored to his particular tests/findings though so very individual. It's been about 6 months so far. In the meantime I hope your Doc is doing all the tests recommended (with specialists as necessary).

At your post No. 12
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Does anyone have an idea in what percentage of cases he finds such a missed diagnosis? And in what percentage of the missed diagnoses people can then be treated successfully? Thanks.

You would probably find this info in his new book : Missed diagnosis.
I think it is available on lulu.com

http://www.lulu.com/product/paperba...onic-fatigue-syndrome-second-edition/10255089

I think he said 60% but it could be 40%...
I can't recall what he said and did not write it down.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Sorry to hear Boule de feu - same for me. Could you find any guidance at the marvellous Ottowa Conference to aid persisting problems. I'm pretty certain after many years K de M, Mikovits (et al) are well on the way at least (HGRVs). Have/can you try treatments much spoken of here on PR there seems to be newer and newer ones out. An old friend of many years has been under KdeM (MLV positive) and finding his treatment (GMaf, Antibiotics etc) working - it is tailored to his particular tests/findings though so very individual. It's been about 6 months so far. In the meantime I hope your Doc is doing all the tests recommended (with specialists as necessary).

At your post No. 12

Well, I had a very "special" private conversation with Robert Miller who told me that Ampligen saved his life... I would not mind trying that. A lady sitting besides me said that her daughter was taking a mitochondrial cocktail and gave me the name of a CFS doctor. I could ask for an appointment with Dr. Bested of Dr. Hyde.
Another specialist mention that vassopressin could help for chronic earaches...
Besides that, I don't know where to go or what to do.

All my tests are dated, i.e. 5 years. Maybe we should run them again.
 

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
Dr. Hyde gave us a second booklet

I forgot to mention that we also received a copy of "The Cambridge Symposium on M.E."
However, it is dated (1990) but the info is helpful - considering all of the references being made.
 

Dolphin

Senior Member
Messages
17,567
Dolphin said:
From my reading of BH, I haven't found him focus too much on treating M.E. He seems in his writing much more focused on treating the condition if it's not M.E. Of course, spotting a misdiagnosed is useful.
I'd wish my doc would find something totally different - we could treat it and that would be the end of it. =-)
Yes, I think that's what most people would be inclined to think after reading BH stuff. I find it a bit odd that for an M.E. expert, these days he seems to generally not talk about treating M.E.
 

Dolphin

Senior Member
Messages
17,567
Well, I had a very "special" private conversation with Robert Miller who told me that Ampligen saved his life... I would not mind trying that. A lady sitting besides me said that her daughter was taking a mitochondrial cocktail and gave me the name of a CFS doctor. I could ask for an appointment with Dr. Bested of Dr. Hyde.
From what I hear BH is quite pricey - high 4-figure/that sort of range. That was for somebody outside Canada so don't know whether different for those in Canada. Also, doesn't seem particularly focused on treating M.E. Those are impressions I've got but perhaps others will say otherwise.