My visits with Dr. Byron Hyde

[Sparrow]

It would have been nice for him to test me for viruses through OHIP billing but that's too expensive a route to go when that's about all he's got left to check out. Unfortunately my GP won't order any blood tests for viruses etc. nor does she know anything about ME/CFS. She figures I have POTS and doesn't understand I'd still like to know if its been caused by or related to EBV (coldsores ruled my life from childhood to adulthood).

Have you been referred to the Women's College Hospital Environmental Health Clinic? It's a very long wait since there's high demand, and they can't do much, but EBV was one of the things they would have had tested if I hadn't had it done already. They also might be able to help give an informed opinion to your doctor. That was part of my main purpose in seeing them.

 

[charlie1]

Thanks for the suggestion Sparrow! I am booked for tilt-table testing, amongst other things, at a dysautonomia unit @ University Hospital in London on Jan.16. I can ask the neurologist there if he will refer me to Women's College. If not, maybe my endocrinologist will do it b/c unfortunately, I'm quite sure my GP will find it an 'unnecessary' OHIP expense. She's usually a pretty good doctor, other times... not so much.

 

[Kati]

i am reding all these negative comments about Dr Hyde, which kind of saddens me in some way.

One thing you gotto give the man is that he has an expertise with Spect scans that other radiologists don't have. I would like this expertise put to work and published because there is more research needed in that area to be done.

 

[Dufresne]

Exactly!

He is ONLY ruling out other illnesses. This is a good thing, of course, if you feel you haven't had a good work-up by your own doctors or if you are like me and really want to make absolutely sure nothing was missed. I also happen to live in Ottawa so it was easy and cheaper for me to visit Dr. Hyde. It would have been a different story if I had had to travel and/or if I had had to pay for all the testing done. As I live in Ontario, it was all covered by the Ontario provincial health plan, OHIP. I feel a bit bad for using up tax payers dollars on tests that were most likely unnecessary but at least now I have peace of mind knowing I don't have some rare, undiagnosed illness.Or worse, some common, treatable illness that was missed.

Regarding treatment, Dr. Hyde offers nothing....and I really do mean nothing. He is against medications and doesn't really like that I am now on Klonazapam despite the fact that I think it is helping me. He doesn't know much about nutritional things such as gluten sensitivity and food problems. When I mentioned I had tested positive ( by my GP!) for anti-gliaden antibodies and was now not eating gluten he shrugged it off as nothing and still offered me cake. Regarding Rich Vanks protocols etc. he was also in the dark. I have found that I know more about what is going on with new research into immunology, genetics and biochemical defects than he does (thanks to PR).

I'm sorry to have to report this after being so thrilled at the start of my visits. My next steps will be 23andme and a trip to Miami to see Dr. Klimas.

Gamboa

That's it exactly. His book was written 20 years ago and he doesn't have anything new for a second edition. I too thought I was more abreast with new developments than he. Your next steps sound like good ones. Keep it up.

 

[Wayne]

I am booked for tilt-table testing, amongst other things, at a dysautonomia unit ....... I can ask the neurologist there if he will refer me to Women's College. If not, maybe my endocrinologist will do it b/c unfortunately, I'm quite sure my GP will find it an 'unnecessary' OHIP expense.

Hi Charlie,

I'm not too keen on the tilt-table testing myself. I may be wrong about this, but it seems to essentially let a person know if they have some kind of OI, or POTS, or some kind of syncope. I always assumed a person can figure this out on their own by standing up from a sitting position, and see if you get the sensation of vertigo, or lightheadedness, or a feeling of blood draining out of the brain. Cost of that is zero. A tilt table test costs about a $1,000 or so. Like I say, I may be wrong on my take of this, but I really have my doubts about the value of this test.

 

[Kati]

Hi Wayne, a tilt table test is much more sensitive than the poor man tilt table test. It canget really usefulto prove disability and to diagnose what is happening in a lab setting, especially that in our case there can be a delayed response.

I went through the testing myself and it does not feel good at all, and really amplified my symptoms and proved POTS.

2.5 years ago it cost me around 500$ for that test and in my opinion was worth every penny to confirm diagnosis and guide treatment. every test that comes back abnormal is another proof that something is wrong.

 

[taniaaust1]

Hi Charlie,

I'm not too keen on the tilt-table testing myself. I may be wrong about this, but it seems to essentially let a person know if they have some kind of OI, or POTS, or some kind of syncope. I always assumed a person can figure this out on their own by standing up from a sitting position, and see if you get the sensation of vertigo, or lightheadedness, or a feeling of blood draining out of the brain. Cost of that is zero. A tilt table test costs about a $1,000 or so. Like I say, I may be wrong on my take of this, but I really have my doubts about the value of this test.

With knowing what is causing ones OI.. one then knows more on how to go treating these issues. Otherwise how would a person know if they are treating POTS, orthostatic hypertension or orthostatic hypotension/NMH? or know if they should be on prescription drugs for their symptoms or not?

With some of those things.. a person themselves it may be hard to stand there oneself to test eg NMH may not appear in the first 20 mins (I think some test up to 40-45 mins). And as another said.. tilt table testing is more sensitive.. its best if one dont move at all. Those who are undergoing those tests are constantly observed. to make sure they arent against their own knowledge, doing compensionary things for the condition eg wiggling toes.

Then there is the added thing that some can have MAJOR issues on testing... resusitation equipment is at hand when tilt table testing. There have even been some at this site who's heart has stopped on thier tilt table test eg Alex if Im remembering correctly had that happen. Proper tilt Table testing is safer then doing it at home.. unfortunately many of us cant easily get tilt table testing..so end up using poor mans test which for many of us shows our issues clearly anyway. (I use poor mans test to monitoring how my POTS drugs are going, Ive never found a doctor to do tilt table testing).

I always assumed a person can figure this out on their own by standing up from a sitting position, and see if you get the sensation of vertigo, or lightheadedness, or a feeling of blood draining out of the brain.

I'd like to point out that just having low BP can cause those symptoms too and low BP is VERY COMMON in us.. studies put it at 86% of us.

Having a type of dysautonomina or autonomic issue which conditions such as POTS, NMH and orthostatic hypertension are dysautonomia conditions.. is completely different to just having low BP... that's a completely different kind of conditon but can cause the same symptoms you mentioned above.

I wouldnt be on Florinef if i didnt have POTS and wouldnt be on Clonidine if I didnt have severe orthostatic hypertension, up to 170/138 on standing (also have hyperadrenalic kind of POTS). You need to know what you have so you know what treatments to try, you just cant go by "Im dizzy when I stand up".

I think the doctors would be allowing me to trial daily saline IVs if they did tilt table testing and saw how bad I was on that (I get shocking results at home with just poor mans test.. up to a 67 beat heart increase to standing). Not being able to get a tilt table test.. may be depriving me of being able to get more aggressive treatment for the issues.

 

[Wayne]

Thanks Kati and Tania for your posts.

Otherwise how would a person know if they are treating POTS, orthostatic hypertension or orthostatic hypotension/NMH?

Thanks Kati and Tania for your posts. Tania, I've never really understood the difference between OI, POTS, NMH, Dysautonomia, etc., although your explanation about low blood pressure being different from them makes sense. Do you know if these names are used interchangably? -- Thanks.

 

[Sushi]

Thanks Kati and Tania for your posts.

Thanks Kati and Tania for your posts. Tania, I've never really understood the difference between OI, POTS, NMH, Dysautonomia, etc., although your explanation about low blood pressure being different from them makes sense. Do you know if these names are used interchangably? -- Thanks.

Hi Wayne,

Dysautonomia is the broad category for OI, POTS, & NMH--though there are other types too.

Those 3 subcategories are quite different though, as reflected in symptoms and testing.

Sushi

 

[ahimsa]

I'm not too keen on the tilt-table testing myself. I may be wrong about this, but it seems to essentially let a person know if they have some kind of OI, or POTS, or some kind of syncope. I always assumed a person can figure this out on their own by standing up from a sitting position, and see if you get the sensation of vertigo, or lightheadedness, or a feeling of blood draining out of the brain.

As someone who has a diagnosis of Orthostatic Intolerance (Neurally Mediated Hypotension, aka, Neurocardiogenic Syncope and other names) I can tell you that there is a big difference between simple Orthostatic Hypotension (e.g., standing up quickly and getting lightheaded, seeing "stars") and the symptoms that I have. It's not something that's so obvious.

For example, you said that most patients could figure out that they have OI without any testing. I went for five years without having any idea that I had OI. This was many years ago (1990-1995) so I hope that doctors know more about the tie between ME/CFS and OI by now. The way I found out about it was from the Johns Hopkins research done by doctors Rowe, Calkins and Bou-Holaigah (a friend was in their initial study in 1995). But one patient on this forum posted recently that she had no idea about OI even though she's been having these symptoms for years. So there are still people out there who don't know about OI. Heck, there are still doctors who ask me "What's that?" when I mention either OI or NMH.

As another example, I have never fainted except during the tilt table test. Doctors never even considered OI as a possibility. They thought (at least my own doctors, maybe not all doctors) that all patients with some type of OI would faint. But that's not true. Many ME/CFS patients who also have some form of OI may get pre-syncope symptoms but they never faint.

Here's one site that mentions that most patients with OI (they use the term Chronic Orthostatic Intolerance) do not faint except during testing:

Chronic Orthostatic Intolerance
In chronic orthostatic intolerance, patients are ill on a day-to-day basis. Chronic orthostatic intolerance may be confused with syncope because chronic illness is sometimes punctuated by acute syncopal episodes. However, this is unusual during real life (albeit common during artificial testing environments), and the author's work suggests no increase in the incidence of syncope above that in the general population. The physician should rely on the patient's history to determine whether chronic illness is present. Thus, chronic orthostatic intolerance is defined by a history of symptoms of orthostatic intolerance present on a day-to-day basis

And here's their list of symptoms:

Defining symptoms of chronic orthostatic intolerance include dizziness in all patients, with high incidence of the following conditions:

• Altered vision (blurred, "white outs", "black outs")
• Fatigue
• Exercise intolerance (frequently post-exercise malaise)
• Nausea
• Neurocognitive deficits
• Sleep problems
• Heat
• Palpitations

A large proportion of patients also experience the following symptoms:

• Headache
• Tremulousness
• Difficulty breathing or swallowing
• Sweating
• Pallor
• Other vasomotor symptoms

These symptoms are divisible into symptoms of sympathetic activation and symptoms of reduced cerebral blood flow.

A tilt table test costs about a $1,000 or so. Like I say, I may be wrong on my take of this, but I really have my doubts about the value of this test.

I agree that there is a cost/benefit analysis to be done. I would not recommend that every patient take a tilt table test! It depends on the patient. But there is at least one situation where it is important -- getting evidence for a disability insurance claim.

Also, if a patient does decide to get a tilt table test then it's important to do the right protocol and get a doctor who knows how to interpret the results. If you have a form of OI like NMH, where the abnormal response does not happen immediately but is a delayed reaction, and they only test you for 10 or 15 minutes, you may not get any useful results.

The recommendation is for the first phase of testing to last 40 or 45 minutes long. It took 20 minutes on my first tilt table test, and 30 minutes on my second one, before the severe plummet in blood pressure happened.

Note: I really did not want to take a second test at all, especially since I knew how bad I would feel after the test! But it was required for my ERISA disability claim.

I hope this helps! It's quite a complicated situation.

 

[ahimsa]

I responded to Wayne without reading further responses. Tania posted some very good info including:

I'd like to point out that just having low BP can cause those symptoms too and low BP is VERY COMMON in us.. studies put it at 86% of us.

Having a type of dysautonomia or autonomic issue which conditions such as POTS, NMH and orthostatic hypertension are dysautonomia conditions.. is completely different to just having low BP... that's a completely different kind of condition but can cause the same symptoms you mentioned above.

Yes, the issues of regulating blood pressure and heart rate can get very complicated. To give just one example, a patient may have a high resting blood pressure (the BP measured while sitting down in a doctor's office) and still have NMH (the problem with the blood pressure dropping suddenly). Those patients have to use different treatments, for example, than patients who have low resting blood pressure and NMH.

Here's a chart (see http://emedicine.medscape.com/article/902155-overview#aw2aab6b6
) showing three different examples of abnormal tilt table test (top row is blood pressure, second row is heart rate):

FYI, the second one, labelled Vasovagal, is the one that looks like my results.

As Tania said, data like this is what's used to decide what type of treatment is best for the patient.

 

[ahimsa]

... I've never really understood the difference between OI, POTS, NMH, Dysautonomia, etc., although your explanation about low blood pressure being different from them makes sense. Do you know if these names are used interchangably? -- Thanks.

It seems that even the experts do not always agree on the terms to be used. Here's an extract from an article at research1st.com :

There are many types of OI. When you round up experts who study the autonomic nervous system (as we did at one of our research symposia in the year 2000), they have trouble agreeing on the names and definitions for the various types of OI. (Does that sound familiar?) OI and other forms of dysautonomia are common in other conditions like MS and Parkinson’s; it also occurs in less well-studied conditions like Ehler’s Danlos Syndrome, Marfan syndrome and Shy-Drager Syndrome. So, it’s not unique to or diagnostic of CFS.

 

[charlie1]

A tilt table test costs about a $1,000 or so.

The price of the testing will be paid by Ontario health plan. The reason having it done is the same as those mentioned above. I'd like to know what I have so proper treatment can be given.

Lately my POTS symptoms are intensifying (particularly cognitive impairment, body weakness and light & sound sensitivity) within a shorter time frame of standing or walking in the house (mostly couch bound). I've noticed that .5 mg of ativan (taken for sleeping disorder) lessens symptom severity fairly quickly giving me more energy & I can think straight. I am not stressed or anxious so I'm not sure why this would be working. I don't want to become accustomed to the day time ativan but if that's what it will take to function better, then I will continue this course.

Has anyone else experienced this as well? I am doing all the regular suggested protocol for POTS so not sure what else I could do other than take meds that might be prescribed after tilt table results.

 

[Kati]

Charlie, here are a few pointed about TTT being done outside of our ME experts. I have had both done, one at Dr Klimas and one dones by a supposedly dysautonomia expert, and I can tell you that his testing was definitely sub par and not adapted to the needs of our illness.

Notably, he didn't have a real tilt table, it was meant for patients with paraplegia. I went from laying to sitting, then I had to stand. This would skew the results greatly, and for that matter I did not meet the pots criteria. You should be on a table that places you in position without having you to move a hair.

The non-ME expert did not keep me in tilt long enough. Patients with ME can have delayed response, so 30 minutes in tilt is a minimum.

"Beat to beat" equipment is also essential.

 

[charlie1]

Hi Kati, I don't know if he'll be an ME expert but he is a neurologist specializing in dysautonomia who leads the clinic within a teaching hospital. It is a proper tilt table where I will be secured so that no movements can take place. I think I was told it could be up to 45 min. on the table.I will be having valsava and sweat testing as well. I'm not looking forward to the procedure but am looking forward to a diagnosis.

 

[Kati]

Good luck Charlie, let us know how it goes.

 

[Sushi]

Hi Kati, I don't know if he'll be an ME expert but he is a neurologist specializing in dysautonomia who leads the clinic within a teaching hospital. It is a proper tilt table where I will be secured so that no movements can take place. I think I was told it could be up to 45 min. on the table.I will be having valsava and sweat testing as well. I'm not looking forward to the procedure but am looking forward to a diagnosis.

Take a recovery pack with you! You will be dehydrated, you should be asked to fast--so food drink, any supps or meds that help you. You probably should have someone lined up to drive you home.

Sushi

 

[charlie1]

Thanks Sushi. I will have my husband drive me as I've not driven the car in 7 months. I'll be in the 'recline' position for the hour drive to the hospital. And I'll be bringing a Recovery pack for sure - something tells me I'm going to feel ill

 

[Sushi]

Thanks Sushi. I will have my husband drive me as I've not driven the car in 7 months. I'll be in the 'recline' position for the hour drive to the hospital. And I'll be bringing a Recovery pack for sure - something tells me I'm going to feel ill

They had juice ready for me and I couldn't grab it fast enough. Feeling ill is a euphemism for what I felt. Oh, and my doc told me to end the test any time I felt really bad--and I did end it. He didn't want me to faint--said he could get plenty of data from pre-syncope. You might want to clarify whether you can end the test yourself.

Take care,
Sushi

 

[Gamboa]

Have you been referred to the Women's College Hospital Environmental Health Clinic? It's a very long wait since there's high demand, and they can't do much, but EBV was one of the things they would have had tested if I hadn't had it done already. They also might be able to help give an informed opinion to your doctor. That was part of my main purpose in seeing them.

I actually went there two years ago and saw Dr. Bested. She was the one who diagnosed me with ME/CFS and filled in all my forms for LTD etc. She did not do very much testing however since she was only allowed to do what OHIP ( Ontario Health Plan) allows. She did very little testing for infectious diseases: just HIV, Hep A, B and Lyme. Her main focus in treatment is pacing and filling in charts to find out how much ( or little) you can do to avoid having a crash. She sent me for a sleep study ( a 2nd one) and to an allergist but that was about it. In her defense, her hands were really tied by the Ontario government rules and by the hospital as to how much she could order. Somehow Dr. Hyde gets around all that, although I know he is constantly in trouble with OHIP and the Medical License Board. I'm expecting any day now for his license to be suspended. He openly talks about this by the way.
Gamboa