How to find a doctor

[Springbok1988]

Hello everyone,

I am wondering what kinds of doctors have been working with you. I have seen an immunologist/rheumatologist, endocrinologist, infectious disease, psychiatrists (was referred to them because I was misdiagnosed with depression for four years), and multiple GPs. Not a single one had any clue what to do with me. Nearly every test that I’ve had done has been requested by me. Every medication I’ve been on, I’ve had to request. I don’t think I’d have stood a chance if I hadn’t studied biology as an undergrad and virology while getting a masters. It’s the only reason the doctors listened to me.
Are you all seeing ME specialists? I’ve seen so many people trying various medications and getting tests that I know my doctors either wouldn’t understand or just wouldn’t do.
I have been on the waitlist for Dr. Joseph Brewer for a year now and don’t seem to be any closer to seeing him. Dr. Chia can also get me in in August of 2022, over a year from now.
It just feels hopeless that I will be able to make any progress, try new things, or see if there’s anything more that could help me.
Thank you for spending the time to read this. I appreciate all of you!

 

[Wishful]

It's important to see a doctor and appropriate specialists to rule out other diseases or to treat comorbid conditions. For ME, unless you need an official (doctor's opinion) diagnosis for some reason, or want to try a prescription drug, there doesn't seem to be much point. I'm pretty skeptical about doctor's claims for successfully treating ME, since no one knows what ME actually is, and there's no way to prove that the patients had ME before treatment or don't still have it after.

It just feels hopeless that I will be able to make any progress, try new things, or see if there’s anything more that could help me.

Yes, it can seem hopeless, but the reality is that it is possible to find things that make a big difference. I found four treatments that made a big difference in my quality of life. This winter I developed yet another problem (greater proline sensitivity), and was daunted by the challenge of trying to find something treat that with, yet I managed to find something (ruminant meat ) that works effectively. I'm still trying to figure out what in the meat (or the fat) is responsible, but as far as treatments go, beef steaks or BBQ ribs aren't a terrible prescription.

How do you find something that works? Experiment with lots of things, and pay attention to any changes in your symptoms ... and hope that you get lucky. I've found those five treatments in 20 years, so it can take time, but the fact that I've found five means that it is far from impossible. BTW, keep a food(and drugs)/activity/symptoms journal as detailed as you feel comfortable with, since human memory is too fallible for this task. Being able to look back and find correlations is very useful.

 

[Springbok1988]

But which doctor(s) have run those tests (such as proline sensitivity) and prescribed your medications? I go to the doctor and they barely do anything. They don’t suggest things, they don’t investigate, they don’t want to try things. I read about all these people getting tested for a lot of different things. Did they ask a doctor for those tests or did their doctors suggest it?

 

[Wishful]

But which doctor(s) have run those tests (such as proline sensitivity) and prescribed your medications?

None of them. The ones I went to were unable to help me. Their only real use was to write prescriptions for drugs I asked for to see whether they'd work (mostly not). LDN was the only prescription drug that worked, and I read about that here. All the other things that worked were my own discoveries, mostly accidental noticing that something reduced my symptoms and then figuring out what it was.

I'm unaware of any clinical test for proline sensitivity, or T2 levels, or really anything related to my ME. All the tests the GP (and specialists) did presented me as a healthy individual, with a few very slight but unexplained abnormalities; nothing they could follow up on.

I do my own testing. Does something in a meal make me feel worse? Test the components individually to figure out which is responsible. Figuring out proline was tricky, but once identified, easy to verify. Something in a multivitamin/minral tablet made me feel better? I tested the components individually and found that it was--in that case--iodine. Yes it's a long process, but my score is 5 very good treatments (4 eventually leading to cures for those problems) and a bunch of foods I need to avoid. Professional doctor score after 20 years = 0.

Some people here do prefer the route of exhaustive testing (mostly by private labs) and a lengthy list of drugs and supplements. They claim that it works for them. Of course, some spend tens or hundreds of thousands of dollars on that for slight improvements. I've spent only a few hundred dollars for significant improvements. Of course, some people buy one lottery ticket and win big, but that doesn't mean that it's going to make everyone rich.

My opinion is that at this point, there's not much help to be gotten from professional doctors. It's not a case of finding the right doctor and getting treated/cured. If we want improvements in our ME nightmare, it's probably going to be our own efforts that lead there.