Which expert do I see? Need opinions, please!

[EMilo]

Hey everyone,

I want/need to see an ME expert (one who is taking new patients). None of my docs have a clue about this disease. I live in Seattle and I'm willing to beg and borrow to get myself to a different city. It'll probably have to involve renting an RV and a wheelchair and finding money somewhere... It'll take a huge toll on me and my family, so I want it to be worth it (I've been housebound for 9 months, not able to have long conversations or do much for myself).

I was thinking Dr. Peterson or Dr. Chia because they're within 4-5 days drive... If you could see any expert in the US, who would you see?

Thank you for advice!

 

[ukxmrv]

Have a think about the waiting lists for each doctor as that may help make up your mind.

 

[SOC]

I agree with ukxmrv. Your best bet is to check all the specialist docs within driving distance for you and see who's even taking new patients. Of those, some have very long waiting lists. Your choice may be more limited by who is available than by anything else.

 

[WillowJ]

in addition to wait lists, everyone has different specialties. Some treat multiple aspects of ME (and some treat ICF as well, though that may not interest you). Some focus on infection, and of these, each has different specialties.

Everyone has a little bit different of a treatment approach. Which doctor is best for you really depends on what you want to focus on and what kind of approach you like.

But as the others said, a lot depends on how long you are able to wait. Your choices are fewer if you need to be seen soon.

 

[taniaaust1]

I agree with what the others said. Many of our specialists are not taking new patients at all, other of them have waiting lists years long (Im in Australia but it took me 3 years to get into a CFS specialist here who I'd wanted to see. Its a case of no matter where you are in the world, too many ME/CFS patients and hardly any specialists.

As Willow said.. your choice also needs to take in account of what treatments you are after and what you would be willing to try or even can afford as even ME specialists all have their own things they are doing or into. Some also do diferent tests then others so also think about what tests you may like to have too.

I dont know how things work in the USA but if some doctors do phone appointments after initial face to face consult, you may want to consider that too as you probably will need follow up too.
Another thing to consider.. some doctors allow their patients to have their emails so they can contact them in emergencies and will give them some advice by email, while others dont.

 

[taniaaust1]

I was thinking Dr. Peterson or Dr. Chia because they're within 4-5 days drive... If you could see any expert in the US, who would you see?

Thank you for advice!

If there was no restrictions and I could see anyone in Amercia.
Dr David Bell would be my first choice due to my severe autonomic issues (but I think he may of stopped consulting, Im not sure).
My second choice would be Dr Peterson or Dr Cheney (for the reason I seem to match Dr Cheney's Lake Tahoe patients for the illness progression, so I feel like they are very familiar with the patient group I match).

As you can see from my choices, there are very specific reasons why I'd choose the ones I chose and not just cause they are well known speciaists.

 

[SanDiego#1]

If there was no restrictions and I could see anyone in Amercia.
Dr David Bell would be my first choice due to my severe autonomic issues (but I think he may of stopped consulting, Im not sure).
My second choice would be Dr Peterson or Dr Cheney (for the reason I seem to match Dr Cheney's Lake Tahoe patients for the illness progression, so I feel like they are very familiar with the patient group I match).

As you can see from my choices, there are very specific reasons why I'd choose the ones I chose and not just cause they are well known speciaists.

taniaaust1-
Hate to even go here but I am a patient of Cheney's . You are wasting your time. He has the same Protacal for everyone.
Only interested in Echo for heart. I am worse since I went to see him and much poorer.. This is all I was tested for for 2 days and diag was wrong.. I would suggest Peterson or Bell. Are you able to fly?

San Diego #1

 

[taniaaust1]

taniaaust1-
Hate to even go here but I am a patient of Cheney's . You are wasting your time. He has the same Protacal for everyone.
Only interested in Echo for heart. I am worse since I went to see him and much poorer.. This is all I was tested for for 2 days and diag was wrong.. I would suggest Peterson or Bell. Are you able to fly?

San Diego #1

The heart stuff is one of the reasons why Cheney interests me, there isnt many other ME specialists which match Cheney's heart ME speciality area. I match all the things he goes on about, so I know he'd understand my issues.

I have 2 different leaking heart valves (which have been picked up even thou my mitral value wasnt closely looked at) which when I researched those leaks, they indicate the heart issue he talks about in us, unfortunately a heart specialist thought I must of always had the issue since birth so didnt pay it any attention at all but this didnt appear on my previous heart tests at other place so I know its from the ME. (I think I must be getting a huge hole in my heart at times which would be picked up with better tests).

No.. my ME is far too severe to be able to fly anywhere, I cant leave my house even alone, really need a wheelchair just to do a basic food shop. I currently have two home support workers just to take me shopping.

What specifically made you choose Cheney over other ME/CFS doctors? I think its very important to pick your ME/CFS specialists very carefully.

 

[WillowJ]

Lerner investigates the heart and now I think Kogelnik has added this as well

 

[SanDiego#1]

The heart stuff is one of the reasons why Cheney interests me, there isnt many other ME specialists which match Cheney's heart ME speciality area. I match all the things he goes on about, so I know he'd understand my issues.

I have 2 different leaking heart valves (which have been picked up even thou my mitral value wasnt closely looked at) which when I researched those leaks, they indicate the heart issue he talks about in us, unfortunately a heart specialist thought I must of always had the issue since birth so didnt pay it any attention at all but this didnt appear on my previous heart tests at other place so I know its from the ME. (I think I must be getting a huge hole in my heart at times which would be picked up with better tests).

No.. my ME is far too severe to be able to fly anywhere, I cant leave my house even alone, really need a wheelchair just to do a basic food shop. I currently have two home support workers just to take me shopping.

What specifically made you choose Cheney over other ME/CFS doctors? I think its very important to pick your ME/CFS specialists very carefully.

 

[SanDiego#1]

Cheney is not a Cardiologist. I had used him years ago. Did not need to go back. All of his tests with
OLD Echo machine were bazaar. I was having Palpitations. Shortness of breath. He did not solve them-just made me worse and as I said poorer. Please don't wast your time or money with him. No one that I know with Heart issues that is seeing him is better. I am off all the meds and Neutraceutical he put me on and feeling better. Have had 2 Echoes
since with 2 different Cardio Dr.Cheney said I was almost dying. I am not. !!!! Tying to get back to walking.
ALL of his diag were wrong and he overkills with the meds.Just finishing up with a 30 day Holter Monitor on Tues..
Will post the results.

San Diego

 

[Tristen]

Hey Liz, Your asking an excellent question. I have to agree that the handful of me/cfs specialists in the US all have their own primary focus, and it may serve you well to gather some idea of which best fits your needs. Of course you may have no idea how to answer that with such a complex disease, especially if you have not yet done much testing.

Dr Peterson is closest to you, and in my opinion the best anyhow. Yes, his focus has primarily been viral infections, but I will say this.....the guy is a test-aholic. He is extremely thorough with ruling out all other diseases and diagnosing me/cfs. My first visit with him involved 3 days of testing. Things may have changed a bit due to his now being more involved in research, but I can say that he is by far the most astute doctor I've ever met (and I've met a lot). He's also a wonderful person.

I chose to pursue Dr Peterson after reading Oslers Web back before we had any of these internet forums. Fortunate for me is that I'm only 8 hours from him.....regardless, knowing what I know today, he would still be my first choice, even if I didn't have an infectious onset (Tahoe cohort). It took me 2 years to get in with him and that was several years ago, so I have no idea what kind of wait you would have now....that is even if he is accepting new patients. If interested, you can get their number at "Sierra Internal Medicine", Incline Village, Nv. Ask if they are accepting new patients and if so, how long the wait, and to get a new patient packet sent to you.

Just as close is Dr Kogelnik in Mountain View Ca. He's only got a few years experience with me/cfs, but he's quite up to speed on the disease. He works closely with Dr Peterson, and is well connected with research at Stanford Uni. You wouldn't have to fight the winter storms seeing him in the Bay Area, as opposed to Tahoe in the Sierra Nevada's. But I wouldn't worry about that getting started. http://openmedicinefoundation.org/

Another 8 hours south is Dr Chia in Torrence Ca. As you know, his focus is GI infections.

All the best with whatever you choose to do.

 

[rebar]

Hi Elizabeth, have you had any of the extensive blood work needed to narrow down your illness. I would suggest
that may help with your decision.
best of luck

 

[Sushi]

...
I have 2 different leaking heart valves (which have been picked up even thou my mitral value wasnt closely looked at) which when I researched those leaks, they indicate the heart issue he talks about in us, unfortunately a heart specialist thought I must of always had the issue since birth so didnt pay it any attention at all but this didnt appear on my previous heart tests at other place so I know its from the ME. (I think I must be getting a huge hole in my heart at times which would be picked up with better tests)...

Hi Tania,

I have 2 mildly prolapsed valves and have had many echoes (just had one the other day). The prolapses don't always show up--all the cardiologists I've seen have told me that. It depends on your hydration and other factors but it is possible you have had them since birth (pretty sure I have) and that they just weren't showing up.

Also the characteristic "click" can sometimes be heard and sometimes not. My impression for myself is that I have always had slightly prolapsed valves. ME doesn't seem to have changed them or led to any progression. So I don't think we need to assume that ME will make them worse. Yet, we all know that cardiac damage can happen so it is good to keep an eye on it.

Sushi

 

[taniaaust1]

Hi Tania,

I have 2 mildly prolapsed valves and have had many echoes (just had one the other day). The prolapses don't always show up--all the cardiologists I've seen have told me that. It depends on your hydration and other factors but it is possible you have had them since birth (pretty sure I have) and that they just weren't showing up.

Also the characteristic "click" can sometimes be heard and sometimes not. My impression for myself is that I have always had slightly prolapsed valves. ME doesn't seem to have changed them or led to any progression. So I don't think we need to assume that ME will make them worse. Yet, we all know that cardiac damage can happen so it is good to keep an eye on it.

Sushi

I'd never got that clicking at all before I got ME... but you are right.. maybe they had been missed on the other tests I had done (Id had that test done twice before over a 5 year period) and a click just hadnt been heard before either. Dr Cheney thou finds that most of his patients thou have this issue (so that isnt in line with the percent of normal people who get the issue, so ME must be doing something or the issue must help make us susceptable to it).

I had an incident which really worried me several years ago.. where my neck artery started like sucking in.. (as if my bodies blood flow actually started to go backwards for a few beats of my heart).

 

[taniaaust1]

Cheney is not a Cardiologist. I had used him years ago. Did not need to go back. All of his tests with
OLD Echo machine were bazaar. I was having Palpitations. Shortness of breath. He did not solve them-just made me worse and as I said poorer. Please don't wast your time or money with him. No one that I know with Heart issues that is seeing him is better. I am off all the meds and Neutraceutical he put me on and feeling better. Have had 2 Echoes
since with 2 different Cardio Dr.Cheney said I was almost dying. I am not. !!!! Tying to get back to walking.
ALL of his diag were wrong and he overkills with the meds.Just finishing up with a 30 day Holter Monitor on Tues..
Will post the results.

San Diego

Yeah I know he's not a cardiologist.... what I was getting at is he takes heart stuff seriously which I was needing someone to do.

wow.. you've found far better doctors then I have, In the 17 years since I got this illness, Ive only had 24hr holter testing done twice.. both times were cause I'd joined a ME/CFS study. I dont even have a doctor which is monitoring my severe orthostatic hypertension at all (BP increases 170/138, my BP can be up to 170 within one minute of standing) with tests (thou Im now on clonidine to try to balance my BP, I get low BP when I lay). Orthostatic hypertension is a risk factor for heart attacks and stroke.

 

[Sabrina]

Dr Laurie Marti MD is in Kirkland. I highly recommend her.

http://www.lauriemartimd.com/

You can schedule your appt via her online system.

 

[Sabrina]

I haven't seem him but heard great things about Naturopath Dr Jake Felice in Seattle:

http://www.drjakefelice.com/

 

[EMilo]

Thank you so much for all your advice. Yes, yet again I have been too optimistic and naive in thinking that I could simply make an appointment be seen by an ME expert. I don't mind a waiting list. I thought I would die waiting 8 months to see the chronic fatigue expert last January. But the months came and went and, when I finally got to see him, it was useless anyway. I just don't want to have let 15 years pass and have regrets.

WillowJ, I don't think I care what they focus on, honestly, I just desperately need to see a doctor that knows this disease.

taniaaust1- phone consultations and emails~ very good points, thank you!

Tristen, thank you so much for the insights. Dr. Peterson was one of my first choices mainly because we could probably make the drive in 4 days and also because I feel I need tests... I have had a million tests, but they are normal tests. I wonder, where are the doctors that test for NK cells and coxackie virus and a hundred other ME-specific things? I've never heard of Dr. Kogelnik, so I will add him to my list, thank you. I love that he is closer than Dr. Chia!

 

[EMilo]

Hi Elizabeth, have you had any of the extensive blood work needed to narrow down your illness. I would suggest
that may help with your decision.
best of luck

Rebar (love that name), I have no idea whether I have had the best tests done. I have had all conventional specialist tests done (for a list, see my blog: http://elizabethmilo.com/tests-ive-had-done-since-122011-updated-on-112012/), but I have not had many of the tests I read about done. For example: NK cells, Interleukin-8, RNase L, VO2 max, 24-hr EKG or BP, Mycoplasma tests, ACTH, FSH, LH, testosterone, Immunoglobulin, Heavy metals, and other pathogens besides the normal few they look for... I could go on and on. I don't know what to ask for, what is the most important... I'm overwhelmed by all the online info and the doctors' LACK of info... Any help would be appreciated!