Best Doc to see?

[fla]

Not that I have the money or strength to travel right now but if I did I'd go with Nancy Klimas. I know someone who has improved with her and I like the fact that she tests your anaerobic threshold giving you the number you need to pace safely so at least you won't get worse.

I always keep in mind that if money could fully cure M.E. then the WPI would never have been created by billionaire parents of an M.E. patient. That doesn't mean that the best treatment money can buy can't improve you significantly.

 

[Gamboa]

I too have been debating about seeing a doctor in the States. My reason, however, is not to be cured, since I know that won't happen, but to get more information about exactly what is wrong with me. Then I could at least treat those specific problems and not waste money on things that I don't need.

For instance I would like to know what my anaerobic threshold is so that I can avoid going over it. I would like to know if I really have orthostatic hypotension, immune deficiencies, and other problems that I have been told that I have by my doctor. I have a science background and am really interested in "researching " myself. There isn't much testing that can be done here in Canada, even by the ME/CSF specialist in Toronto that I saw. Our provincial health plan prohibits many lab tests that I would like to get done.

I am thinking of going to see Dr. Klimas. I see on her website for the clinic that the price for each visit is listed but it doesn't say what the price for the lab tests are. Does anyone know?

By the way, I see Dr. Hyde was mentioned. I live in Ottawa, Canada and have tried to contact his office over the years and never get a response. I think he is a bit out of date now and he isn't affiliated with any universities or hospitals and is not doing any current research. Even if you could get in touch with him, I wouldn't recommend seeing him. People like Dr. Klimas are actively researching ME/CFS, write papers that are submitted in respected journals and are affiliated with universities and hospitals.

Gamboa

 

[Ocean]

What do people think of Dr. Enlander? He seems to offer a pretty wide variety of treatments. I know there are people here who see him but are there any members on here that have improved through his treatment?

Gamboa, The exercise test Klimas does, is it similar to what Pacific Labs does? I think it would be useful to know the anaerobic threshold but does that change based on exertion or not? Like if you are active one day, will your AT still be the same the next day? I think the Pacific labs tests two days in a row, does that give more useful info than doing just one test (if in fact one test is all Klimas does) since it takes into account PEM from the first day's test?

 

[Sushi]

Sushi, was it through test results that you knew you'd be a good for for his protocol or something else? I think that type of approach, finding a specialist that may best fit one's particular case, is the ideal way to go about it, but how exactly is that figured out? I've read a ton on here as well as followed many links out and yet still have no idea how that determination would be made. Is it done based on symptoms, lab results, a combination of those, something else? And once you know your own profile, how do you know what type of patient best fits with each doctor's approach? What specific type of research is giving you that info?

Hi Ocean,

We don't need to remind ourselves how confusing and complex this disease is, so it is not like finding your shoe size and the style you want and going to a store that stocks them!

It was test results, symptom sets and talking to patients (and reading here) of different doctors. I think you do have a better chance of success, for instance, if you know you have A, B, C, and D viruses, such and such a doctor has success treating those viruses with means that aren't too risky for you to accept and you or your insurance can pay his fees. Also to find the success rates of different treatments for the symptoms and lab tests that you have.

I had had a lot of testing through a local doctor before I went to a specialist. My local doctor did not know enough to treat but if I asked for a test and brought in articles supporting the benefits of that test, she was willing to order it. I am also in contact with a lot of people here and knew their experiences with different doctors.

I think if you just pick a specialist because they are close to you without knowing how they treat and whether they have success with patients with your symptom set, the odds of doing well with them are less.

Again best wishes on these very hard choices that have so many implications in our lives.

Sushi

 

[SOC]

I too have been debating about seeing a doctor in the States. My reason, however, is not to be cured, since I know that won't happen, but to get more information about exactly what is wrong with me. Then I could at least treat those specific problems and not waste money on things that I don't need.

For instance I would like to know what my anaerobic threshold is so that I can avoid going over it. I would like to know if I really have orthostatic hypotension, immune deficiencies, and other problems that I have been told that I have by my doctor. I have a science background and am really interested in "researching " myself.

That is exactly my position as well. I want data. I want to know what's going on so I can do the best I can with what I've got.

I am thinking of going to see Dr. Klimas. I see on her website for the clinic that the price for each visit is listed but it doesn't say what the price for the lab tests are. Does anyone know?

I saw Dr Rey at Klimas' private clinic about 3 weeks ago. The costs of the labs varies depending on your symptoms and history, because they'll order different tests depending on what they think you need. I can dig out my bills and tell you what I paid for. I don't yet have the lab costs that were sent directly to the insurance company, but I have the bills for the office visit and the appt with the exercise physiologist (including the AT test). If you PM me, I'll dig out the bills and let you know what I paid. As far as I recall, the Dr Rey appt plus the AT testing was $1500-$1700, but I wouldn't rely entirely on my memory.

If it helps any, for the standard tests that one can get anywhere she gave me a prescription to take to my home lab. Would your health service pay for the labs if you had a prescription from a US doc? Is it that the docs can't order the tests, or that they won't pay for them?

 

[Ocean]

Hi Ocean,

We don't need to remind ourselves how confusing and complex this disease is, so it is not like finding your shoe size and the style you want and going to a store that stocks them!

It was test results, symptom sets and talking to patients (and reading here) of different doctors. I think you do have a better chance of success, for instance, if you know you have A, B, C, and D viruses, such and such a doctor has success treating those viruses with means that aren't too risky for you to accept and you or your insurance can pay his fees. Also to find the success rates of different treatments for the symptoms and lab tests that you have.

I had had a lot of testing through a local doctor before I went to a specialist. My local doctor did not know enough to treat but if I asked for a test and brought in articles supporting the benefits of that test, she was willing to order it. I am also in contact with a lot of people here and knew their experiences with different doctors.

I think if you just pick a specialist because they are close to you without knowing how they treat and whether they have success with patients with your symptom set, the odds of doing well with them are less.

Again best wishes on these very hard choices that have so many implications in our lives.

Sushi

It is a lot of work doing that research. Just figuring out the tests you need, getting them done through a local doctor if possible, finding patients to talk to individually, talking to enough people similar to you to get an idea of success rates, and on and on. I guess it just takes time to get through all that and to the point of making an educated guess on how you may respond to a certain treatment. I guess I can only do the best I can with my limitations in processing medical info and my physical limitations in getting out to see local doctors to try to pursue some of the preliminaries as well as financial limitations that may limit both testing and treatment, and should not stress myself out over not being at a point in my research and such that others are at.

It can be hard for me here because it is very easy to feel like I am not doing near enough or to feel I have so much info to cover, when I hear so many people discussing so many medical things that I have no idea about. Each of our situations is different and sometimes I get caught up in what is written here and neglect to remember that my situation is not like anyone else's, just as all of our situations are unique. Thanks for all the input as always Sushi.

 

[xrunner]

Hi All
So, in short, with all your experience, who do you believe would be the best Dr to go see?

Many thanks in anticipation of the assistance, and I hope you are all as well as can be

Rob x

Hi Rob,
I don't have a name. You need to define some criteria which can help in your decision process, and if I were you, I'd invert the premise in your question.
There are very few good doctors and all have some bias in terms of how they see the illness and treatments they focus on.
Good luck!

 

[Nielk]

In my opinion, even if you know your specific criteria and your specific weaknesses and someone will tell you Dr. X in Bolivia is the best to treat you, it's still a gamble. Each of "the big names" have helped SOME patients and many more are not helped a lot. I think that if you take all the data available from all the ME/CFS community and their mode of treatment, I don't think that the ones who are going to the big experts are fairing better lets say than the one who have chosen alternative medicine or the one's who have followed Rich or Fred's protocol. It's all a matter of percentages and I don't think at this point that anyone can claim positive results of more than 50% of their patients. I don't think that it's close to that. You also have to consider the risks involved. Some patients have had adverse reactions to many of these more aggressive approaches. Sometimes the damage could be permanent. At times, a medicine which worked for a while, turns on you and you become sensitive to it. It puts you in a very vulnerable position because you keep feeling worse and worse yet you can't withdraw from this medicine. You become stuck and the little energy you had before is lost. I don't want to scare you about going for treatment, I just want you to realize that no one has the right answer here. you know the saying "life is like a bowl of cherries, you never know what you're going to get". Even if you take identical patients with all identical symptoms and findings, there is not a treatment out there that will help all of them. It will help less than 50% of them.
It's all a matter of trial and error and imo LUCK.

 

[Ocean]

In my opinion, even if you know your specific criteria and your specific weaknesses and someone will tell you Dr. X in Bolivia is the best to treat you, it's still a gamble. Each of "the big names" have helped SOME patients and many more are not helped a lot. I think that if you take all the data available from all the ME/CFS community and their mode of treatment, I don't think that the ones who are going to the big experts are fairing better lets say than the one who have chosen alternative medicine or the one's who have followed Rich or Fred's protocol. It's all a matter of percentages and I don't think at this point that anyone can claim positive results of more than 50% of their patients. I don't think that it's close to that. You also have to consider the risks involved. Some patients have had adverse reactions to many of these more aggressive approaches. Sometimes the damage could be permanent. At times, a medicine which worked for a while, turns on you and you become sensitive to it. It puts you in a very vulnerable position because you keep feeling worse and worse yet you can't withdraw from this medicine. You become stuck and the little energy you had before is lost. I don't want to scare you about going for treatment, I just want you to realize that no one has the right answer here. you know the saying "life is like a bowl of cherries, you never know what you're going to get". Even if you take identical patients with all identical symptoms and findings, there is not a treatment out there that will help all of them. It will help less than 50% of them.
It's all a matter of trial and error and imo LUCK.

Thanks for this Nielk. This is so true and was refreshing to read.

And don't worry what you said doesn't scare me. I'm aware of it already but it felt good to have someone else vocalize it and to be reminded of it. I'm very sensitive to medicines and supplements, and much of what people can tolerate on here I can't, and I realize the same may very well be true for treatments I haven't tried yet as well so if I did pursue any aggressive treatment, I'd go into it knowing that.

I've had enough experience with the medical system due to other long-term problems to know from firsthand experience that many treatments end up not only not helping but also causing long-damage. It's happened to me several times at least. I've also done the whole specialist and travel for specialists and try alternative and mainstream care and basically try it all approach in the past for another illness, much of it without any success so I've seen firsthand that what works for some may not work for me. Often those who improve are vocal and have strong feelings about their care, understandably so I would be too if I found something that helped, and it can be easy to get caught up in that. But so far with other health issues, I haven't found the things that worked for others to work for me, so again I come into this experience with all that in mind.

I think doing the research can help to make a more educated decision on how to proceed, but like you said there are no guarantees. I think just following our inner voice and gut instinct on what path is best for our own unique situation is the only way to proceed. Sometimes it takes a lot of time and some effort to get to that voice and hear what it's saying and really listen to it.

 

[Otis]

Ocean,

It was a risk but I knew the odds were in my favor as about 60% have gotten better on the treatment I wanted to try. But the risk of getting worse with no treatment was worse. Some doctors think that we will usually get about 5% worse each year we are not treated. Of course that isn't true for everyone. Some get better with just aggressive rest. But I felt I wanted to address root causes as even if you get better resting, you are always at risk of relapse till you address the underlying causes.

I have been sick too long not to take some risks, but I research them carefully and knew I matched the sort of patient that did well on this treatment.

Best wishes to everyone struggling with these very real issues.
Sushi

I've never heard that quote before, but it rings true for me. I've been on a 30 year slide with some cliffs along the way and no remissions of any kind. My first goal is to stop getting worse!

At this point I can't really make a trip like that so I think you took an intelligent calculated chance and I'm really glad it's working out for you Sushi!

 

[Gamboa]

By the way, I see Dr. Hyde was mentioned. I live in Ottawa, Canada and have tried to contact his office over the years and never get a response. I think he is a bit out of date now and he isn't affiliated with any universities or hospitals and is not doing any current research. Even if you could get in touch with him, I wouldn't recommend seeing him. People like Dr. Klimas are actively researching ME/CFS, write papers that are submitted in respected journals and are affiliated with universities and hospitals.

Gamboa

The very strangest thing has just happened!! I just got a call from Dr. Hyde's office asking if I would like to be a patient. I have heard nothing from them despite emailing and mailing them for years, as well as actually meeting him and his staff at the IACFS conference in Ottawa last year. What a huge coincidence that they called just hours after I posted my earlier message.

Despite what I said about not recommending him, I think I actually will go and see him. Since I live in Ottawa anyway it isn't too much of a problem getting to his office (about 10 minute car ride).

Gamboa

 

[Nielk]

The very strangest thing has just happened!! I just got a call from Dr. Hyde's office asking if I would like to be a patient. I have heard nothing from them despite emailing and mailing them for years, as well as actually meeting him and his staff at the IACFS conference in Ottawa last year. What a huge coincidence that they called just hours after I posted my earlier message.

Despite what I said about not recommending him, I think I actually will go and see him. Since I live in Ottawa anyway it isn't too much of a problem getting to his office (about 10 minute car ride).

Gamboa

They must have read your post.

 

[Daffodil]

dr. hyde? wow! thats wild! please tell us how it goes.

wouldnt it be exciting if he wants to do gcmaf?

 

[Sparrow]

Great news about the Dr. Hyde appt. You've inspired me to start the process of contacting him as well.

I'm thinking I should probably get myself on some waiting lists in general, but am not sure when the right time to do it would be. I'm not yet actually ready to travel, but don't want to hold off and then discover that the wait is several years long.

For those of you who've gotten in to see any of the well-known doctors, how long was the wait between first contacting them and getting in to see them?

Thanks!

 

[SOC]

Great news about the Dr. Hyde appt. You've inspired me to start the process of contacting him as well.

I'm thinking I should probably get myself on some waiting lists in general, but am not sure when the right time to do it would be. I'm not yet actually ready to travel, but don't want to hold off and then discover that the wait is several years long.

For those of you who've gotten in to see any of the well-known doctors, how long was the wait between first contacting them and getting in to see them?

Thanks!

I could have had an appt with Dr Rey at Dr Klimas' private clinic within a month of when I called. Dr Lerner had a relatively short wait time (less than 2 months) when I made my first appt a couple of years ago.

 

[Sparrow]

I could have had an appt with Dr Rey at Dr Klimas' private clinic within a month of when I called. Dr Lerner had a relatively short wait time (less than 2 months) when I made my first appt a couple of years ago.

That's really helpful. Thanks SOC.

 

[Daffodil]

dr. enlander was a couple of months wait

 

[Gamboa]

Well I have already had my first visit with Dr. Hyde ( 4 hours on Monday) and it was great. I'm starting a new thread so you can all see what happens.

 

[Buster]

Hi, i have often fantasised about which specialist i would see if i won the lottery and could travel. My thinking goes a bit like this - Dr Byhron Hyde in Canada - he ruthlessly roots out misdiagnosis and in a very high percentage of his patients he finds and alternative diagnosis - that may be treatable. The downsides is the expense of all that testing - MRI's the works, also not sure if he actually has a good treatment for those he does find to have M.E.

Hi Justy, you mentioned that in a very high percentage he finds an alternative diagnosis - do you have a citation on this, or can you tell me how you know this. I am just in the process of trying to see him, so that is why I ask.

Does anyone know if he 'treats' any person he finds to have ME? Does he have any strategies to ameliorate ME?

Thank you kindly.

 

[CindyWillis]

I am close to cured with Dr. Enlander. I have been seeing him since February. I asked him what percentage chance I would be 100% well and not have to take any more medicine and he said 100%. So far, he has done miracles with me on the protcol has has given me. I asked him of the people who were well and no longer had to take medicine, what was the longest amount of time in having the illness and he said 14 years. I am at 2.5 years and my husband is at 2.75 years. His protocol for me is to increase my GCMAF to very high levels along with the heppapressen and the GCMAF yogurt he created among other things. I don't take the yogurt regularly since it is hard to work once I have taken it on the weekends and one or two days a week. Before Enlander I was on GCMAF at 25 ng for a year and two months already which helped a lot but was still struggling pretty hard. With the higher levels (I am at 80 ng now) I am feeling 90% well.

He is also treating my husband but he was a month behind me in seeing him. My husband is improved as well. He just saw him a month ago.

I am averaging a 75 hour week for the past two weeks and have had no relapse but will get the hours down in June. Not by choice but have too much work at work right now. I am looking forward to being 100% well as he said soon.

What do people think of Dr. Enlander? He seems to offer a pretty wide variety of treatments. I know there are people here who see him but are there any members on here that have improved through his treatment?

Gamboa, The exercise test Klimas does, is it similar to what Pacific Labs does? I think it would be useful to know the anaerobic threshold but does that change based on exertion or not? Like if you are active one day, will your AT still be the same the next day? I think the Pacific labs tests two days in a row, does that give more useful info than doing just one test (if in fact one test is all Klimas does) since it takes into account PEM from the first day's test?