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

[Rachel Riggs]

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.

@San Diego Assuming you're in San Diego -- Are there any docs in SD you really love? Despite going to Mayo + Stanford, my (female) Scripps PCP has smirked about CFS and apparently doesn't "believe" in it. I do have a great Integrative doc at Scripps. But that's about it at this point. Any you recommend? Thank you!

 

[Who Me?]

@Rachel Riggs She's not in San Diego. (long story how she got that name). I'm in the OC and I'm not aware of any decent docs in SD.

I've had pretty good luck with an NP who gets the viral and immune component, MTHFR and how miserable I feel. She even brought up Helminth's with me, or maybe it was antihelminth? But medicare doesn't recognized NP's so she's out of pocket and can't run labs and have medicare pay. They do pay for RX's but probably only because they haven't caught on yet.

She's the only doc I have that I feel comfortable telling her all the crazy crap I tried.

 

[Rachel Riggs]

@Who Me? Thanks for the info!! WTH is Helminth (I will Google!). Sounds like I better just stick with my integrative doc

 

[Barbara Tourgee]

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) Clinical Immunologist
(1) Environmental medicine
(2) Primary Care Provider (PCP)
(1) Ty Vincent
(1) Environmental Medicine

I want to see a dysautonomia doc.

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

The doctors I have seen either did nothing helpful or made things worse so I haven't bothered lately. Plus I have been housebound for the last 3 years.

 

[Who Me?]

google helminth cuz with 4 hours sleep I can't think straight. She heard of something new for autism, where you ingest some larva that you get in France. I don't remember.

When I was fed up with no care I googled naturopaths and my city. When her website said MTHFR I knew she wasn't a complete idiot. She gives me my antiviral which is huge so that's enough for me.

I do know there is a doc in La Jolla who is recommended for Pots if you have that.

 

[Rachel Riggs]

@Who Me? I'm about to start on an antiviral - hope it helps!!

 

[Who Me?]

@Rachel Riggs I saw you are starting valtrex. I could not take that. Within a week I was in such a rage it was horrible. I am now on Famvir which, although isn't making me feel better, is preventing reactivation.

I had good luck with Acyclovir too.

 

[Rachel Riggs]

@Who Me? Maybe you were Herxing? Hmm wonder why you had that reaction. My doc says I will not feel better from it for 3-4 months...

 

[IrisRV]

@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.

I'm not in an HMO and my insurance is very good. That's one reason I can get insurance to pay for my out-of-state specialist. I can choose my doctors. The problem is access to local specialists. Virtually all the doctors in the area work for the same medical mega-monopoly. It deliberately forced other clinics and private doctors out of business. No NPs anywhere close. No independent specialists.

So, whatever rules the monopoly makes for its hospital and clinics go. Their specialists do not see a patient without a referral. Period. The only way I get a referral to a local specialist is when my ME specialist writes me one. They don't like it, but they accept it.

For a while they tried to tell me my ME specialist wasn't real doctor because they couldn't find her on the registry. Evidently they're incompetent at reading the registry. Or they were trying to intimidate me into using one of their doctors -- as if they have an ME specialist or immunologist. Boy, did my specialist give them an earful! She even got them to call me and apologize.

 

[Who Me?]

Oh I see. That sucks!

I wanted to test my hmo asshat: ) one time so I had my pcp ask them to refer me to someone for my MECFS. They referred me to a physiatrist who specialized in orthopedic issues. Lol.

I called them and told them they were idiots and that's like sending me to a dermatologist for a broken arm.

 

[Mandy]

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

I'm a little jealous you're getting in to see someone - who theoretically - knows what they're dealing with. Please update us after your appt. I'd love to hear that you have found a bit of success

 

[Who Me?]

I will @Mandy. I tried to get my hmo to refer me to him for 2 plus years. He's out of Network so they wouldn't.


I have no idea what he's been doing recently. He is known among other doctors as "radical" because he has no problem prescribing immunoglobulin.

Since I'm doing LDI I may be restricted with what I can do.

@Rachel Riggs. You don't herx from Antivirals. Herxing is from bacteria. Mood changes are a side effect of valtrex. It absolutely was the valtrex.

I did feel a difference with acyclovir bet I never felt better on Famvir. I know it had stopped viral reactivation.

 

[Jeshyr]

Just *right now* I have - these are the ones I see regularly:
- Primary care doc
- Allergy/immunology doc (he does my Xolair shots which help a lot with mast cell problems)
- Neurologist (I'm being checked out to see if I have a primary mitochondrial disease)
- Endocrinologist (for secondary Addison's)
- Cardiologist (POTS and NMH and other dysautonomia stuff)
- Myotherapist (massage-type stuff for pain control)
and I'm waiting for a gastroenterology appointment so that'll probably be added to the roster.

Within the last 5 years you can add another primary care doc (he retired), two more endocrinologists (one diagnosed Addisons but couldn't see me for insurance-type reasons, one referred me on to the correct subspecialty), another neurologist (she was an asshole and made me cry so I'm not going back), another allergy doc (said he couldn't help me), a hematologist (who I saw regularly for years but eventually ran out of things to try), another cardiologist (couldn't help, referred me back to original one), and a clinical pharmacologist (super useful until he started blaming me for not exercising enough). That's 15. Probably more I am forgetting...

It's probably worth noting that I keep seeing these guys because the medications/treatments together have very much improved my situation. I'm still bedridden but I'm a lot less sick than I was at my worst. The medications for POTS/NMH and the allergy-type meds together make a very big difference.

 

[San Diego]

@San Diego Assuming you're in San Diego -- Are there any docs in SD you really love? Despite going to Mayo + Stanford, my (female) Scripps PCP has smirked about CFS and apparently doesn't "believe" in it. I do have a great Integrative doc at Scripps. But that's about it at this point. Any you recommend? Thank you!

Long story, but I’m not actually in San Diego. Nor have I ever been. Sorry for the confusion, but I sure hope you find some good docs.

 

[IrisRV]

They referred me to a physiatrist who specialized in orthopedic issues. Lol.

Lol, indeed! A psychiatrist who specializes in orthopedic issues? Do they also have an optometrist who specializes in cardiac issues? A pediatrician who specializes in geriatric medicine?

 

[Strike me lucky]

Dr google has probably been the best if only it printed out prescriptions?

 

[PamJ]

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.

I don't see CFS doctors anymore either. It's a waste of my limited time & money. However I just made an appointment with Dr Blair Grubb at U of Toledo, an autonomic specialist. Florinef is doing nothing for me now, and I'm looking for alternatives.

 

[Who Me?]

@IrisRV. Not psychiatrist. Physiatrist.

 

[IrisRV]

@IrisRV. Not psychiatrist. Physiatrist.

Oh. Apparently I can't read.

What else is new. Sigh...

 

[Who Me?]

Oh. Apparently I can't read.

What else is new. Sigh...

Easy mistake. I thought by adding ortho stuff that would help clarify. I'm sure if I was reading if someone else typed it I'd be confused. But equally stupid as a psychiatrist.