How many docs have you been to in the last 5 years?

[Who Me?]

I'm thinking just list all the docs you've been to in the last five years for diagnosis or treatment for MECFS and anything related such as below. Not for regular stuff. (Do we have regular stuff?)

I've seen:

(2) Immunologists/Allergist
(1) Rheumatologist
(1) Infectious Disease Specialist
(1) Naturopath
(1) Integrative Medicine
(1) Gastroenterologist
(1) Clinical Immunologist
(1) Environmental medicine
(2) Primary Care Provider (PCP)
(1) Ty Vincent


I want to see a dysautonomia doc.

If you haven't seen a doctor please say why.

 

[GracieJ]

Just a couple in five years. I no longer consult with mainstream doctors, just original "alternative" medicine.

In the 1990s, I saw 14 doctors in 8 years trying to figure this out.

 

[San Diego]

Like @GracieJ, I’ve slowed down in the past 5 years. After a while you come to realize how worthless most of them are and limit your time/energy/dollars to treating symptoms. Still, I’ve lost count. Overall, I’ve had the best results with DO’s rather than MD’s.

If it weren’t for proving and reproving disability, my list would be much shorter. I’ve learned there’s a HUGE difference between proving you are ill and trying to get better. They are practically mutually exclusive.

 

[Who Me?]

I no longer consult with mainstream doctors, just original "alternative" medicine.

Yep that's our only hope. Although the Clinical Immunologist I'm seeing next week, who's the Chair in a a big hospital was treating CFS over 20 years ago with interferon injections. He knows Montoya and is big on HHV-6 so I'm cautiously optimistic

 

[Who Me?]

Like @GracieJ, I’ve slowed down in the past 5 years. After a while you come to realize how worthless most of them are and limit your time/energy/dollars to treating symptoms. Still, I’ve lost count. Overall, I’ve had the best results with DO’s rather than MD’s.

If it weren’t for proving and reproving disability, my list would be much shorter. I’ve learned there’s a HUGE difference between proving you are ill and trying to get better. They are practically mutually exclusive.

I do think how long we've been sick and how sick we are makes a big difference in how much we do. Those who are "really" sick, well there really isn't that much unless we get lucky, but if you haven't been sick for decades and you're still functioning, the sooner you get to someone the better off you'll be.

I've never found a doc who would not run labs for me, even if they didn't understand what was going on. I just handed them a list and said run these please.

One thing we know we have to fight for what we want, if we sat around and waited for docs to do something? Lol

 

[GracieJ]

@Who Me? Isn't that the truth! I would love to have lots of tests done to confirm things, know the true profile, have a SPECT scan, a spinal tap, etc. and know for sure what is going on in this body. But then... what to do from there, and hello! I am making it well enough to survive, thank you very much, but expensive tests?! Not likely anytime soon!

26 years this year. I have been as bad as level 2. I am now a precarious but sustainable 7, earning a living in spite of it all, thanks to adaptogenic herbs.

 

[Who Me?]

@Who Me? Isn't that the truth! I would love to have lots of tests done to confirm things, know the true profile, have a SPECT scan, a spinal tap, etc. and know for sure what is going on in this body. But then... what to do from there, and hello! I am making it well enough to survive, thank you very much, but expensive tests?! Not likely anytime soon!

I've always been able to get labs done. My PCP never even heard of mycoplasma pneumonia but I got him to run it. My IgM was through the roof! Validation and the abx helped alot. And I made sure to point it out to him too.

I never asked for more because like you say, who knows what to do with them. But with labs, plenty of smart people can look at them and then we can treat ourselves.

 

[IrisRV]

Are we talking about how many doctors we've seen for ME/CFS issues, or how many altogether? For example, I do see a PCP occasionally, but I never talk to them about ME at all.

I've always been able to get labs done.

Wow, that's nice! My local medical monopoly is highly resistant to doing anything on patient request and running investigative tests in general. They have to be practically certain you have something before they're willing to test for it.

 

[Who Me?]

I was thinking ME and related issues @IrisRV My pcp runs labs for me which is why he's on my list.

He was pretty cool about running most things I asked for. Now that I'm going to the clinical immuno he thinks he'll take over that stuff.

 

[IrisRV]

Okay then, I've seen 4 doctors for ME related issues in the past 5 years. My ME/CFS specialist and 3 local specialists she referred me to for related issues -- an endocrinologist (idiot) for ACTH test, a cardiologist (nice guy) to rule out primary cardiac issues, and a hematologist to get IVIG.

I cannot see a specialist here without a referral, and my PCPs, every one, have refused to refer me to a specialist for anything. It seems they don't want to encourage my supposed attention-seeking behavior arising from my supposed psychological condition, CFS.

Apparently CFS is such a magical diagnosis that nothing at all can be wrong with you, whatever your symptoms. Except, that is, a heart attack, a broken limb, a visible major injury, breast cancer, or colon cancer. Those you can have because either 1) they can clearly see the problem so they don't have to rely on your description of your symptoms, or 2) the clinic tests for them routinely so they might find them without paying any attention to what you say.

Basically, if you have a CFS diagnosis there can be nothing wrong with you, and nothing you say is to be believed. Well, except for anything that can be seen as a psych condition. They will happily prescribe antidepressants and anti-anxiety agents based on pretty much anything a CFS patient says. Yes, I'm bitter. The local medical mega-monopoly is, is... I can't describe it. It's somewhere on the evil spectrum. Greedy? Immoral?

 

[Who Me?]

@IrisRV i switched to original Medicare (which ain't cheap compared to the hmo) so I could see who I want when I want.

It's liberating to just be able to go see someone when i have any kind of problem. Someone I choose.

 

[Laurie P]

Please add Emergency Room to the list.

 

[Who Me?]

I'd rather not as that wasn't my original intention. Just docs we choose to see in the course of trying to get help.

But a poll about ER would be good if you want to start one.

 

[Laurie P]

In the course of trying to get help, I had to go to the ER. Like Ryan Prior in "Forgotten Plague", I had pericarditis and I also couldn't breathe.

 

[Who Me?]

In the course of trying to get help, I had to go to the ER. Like Ryan Prior in "Forgotten Plague", I had pericarditis and I also couldn't breathe.

My poll is for usual scheduled doc visits. If you want to start a poll about ER visits please do. Or just include the ER doc as one you saw.

 

[Cort]

I haven't seen a doctor in about 15 years. One thing is holding me back - money. I would want to see an ME/CFS expert and that would require an out of state visit and I imagine I would have to pay for that. Plus the tests are so darn expensive but then I would have to add a treatment regimen that would probably be pretty costly...

The last doctor I saw was an ME/CFS Expert. I only made it through two appointments I think.

At some point I think I will probably be able to see a doctor. I would probably see someone like Courtney Craig - with alot of nutritional experience.

 

[Seven]

Wait let me think........Wait what, ah yes I remember.............NOT.

 

[EYAKLLE]

Lost count.

Viread and Raltegravir cured me (took me up to 95%) for ME as defined by Melvin Ramsey. Two AntiRetroVirals.

That's for real M.E.

That's Life.

 

[Who Me?]

Cured or remission? Even with cancer a person has to be cancer free for 5 years before they say they are cured.

 

[Cort]

Lost count.

Viread and Raltegravir cured me (took me up to 95%) for ME as defined by Melvin Ramsey. Two AntiRetroVirals.

That's for real M.E.

That's Life.

Congratulations Eyaklle...Yes, that sounds like "real" ME

Are you still on the retrovirals?

I really encourage you to tell your story in the Recovered stories section. I've heard of two other people who were helped by retrovirals by the way.