Looking for a ME doctor in Southeast Michigan

[Gratefulheart]

Like everyone, I am looking for a doctor who both believes in ME as a diagnosis and is knowledgeable. Dr. Conley in Flint doesn't sound helpful, per previous threads. Any new ones?

 

[Wishful]

What are you hoping for from an ME doctor? Just an official diagnosis for getting benefits? A doctor can't really do anything to help, since there's no known treatment yet.

 

[Gratefulheart]

Yes, that's correct. I need a letter stating I am unable to work for at least 6 months in order to qualify for paid medical leave, a benefit I qualify for through my employer (not the government). I have asked my primary, and the rheumatologist who suggested ME/CFS to me. Both said no. I have a narrow window of time to get this letter in or I will just have to quit my job. That is my main motivation at this point. However, I am also reading that there was a Dr. A. Martin Lerner, who used to be Chief of Infectious Diseases at Wayne State University in Detroit (he died about 5 years ago), who developed a protocol assuming the cause is viral infections; I saw on another thread that Dr. Susan Levine in New York City uses his protocol. I also am reading the blog on PR that suggests a protocol assuming candida as cause. So, I do think there are things to try besides ibuprofen and anti-depressants, which is what my primary suggested. She also said, what's that? when I said myalgic encephalomyelitis. Sigh.

 

[Wishful]

Asking for recommendations for a doctor who is willing to formally diagnose ME will probably get a better response for you than asking for a doctor who can treat ME. That difference might be something @PatJ could include in the standard 'welcome to PR' posting, or in the ME/CFS Doctors subforum.

Those protocols for ME seem to work for a few people, but not the majority, so they're not really the sort of thing that 'everyone with ME should try'. So far there aren't any treatments that reliably work for ME. There might be hundreds of treatments that work for a few individuals each. I think of it as something like a lottery: it is possible to win a prize (an effective treatment for you), but each ticket (treatment) has only a tiny chance of being a winner, and there's no way to tell which one is more likely to be a winner in advance.

To me, NSAIDs and antidepressants are about as likely to help with ME as cabbage or jellybeans. Doctors prescribe them because they don't know what else to do for a patient with ME, and they hate to offer nothing at all. If a doctor prescribes some drug for ME, I recommend doing your own research into the effectiveness for ME (likely none) and the chance of side-effects (likely higher). Many (most?) doctors know less about ME than you do.

 

[Gratefulheart]

Thank you, Wishful. That is a really helpful distinction. I am looking for a diagnosis. I am new to all of this and learning as I go.

 

[nyanko_the_sane]

Perhaps you can get an online diagnosis. I could think of at least one ME/CFS specialist that might help you do this.

We all know how hard it is to get doctors to write letters on our behalf. I spent years trying before I finally started having some success.

Here is a form optimized for Adobe Reader: https://wisdom4.me/cfs-rfc_v1_2_2020.pdf
It can just about entirely be filled out on a computer and then printed and signed.
You can even fill out parts of the form beforehand.

 

[Gratefulheart]

Wow, thanks, @nyanko_the_sane! I would love to hear who that specialist is. I am sorry to hear that you and so many others have had such struggles; I confess it encourages me, though, to know I am not alone in this.

I reached out to Dr. Grubb in Toledo, Ohio (about 90 minutes from me) because I had seen his name on other threads, but he only sees patients with POTS (not one of my symptoms) and he has a year long waiting list. I have the name of an infectious disease doctor I am going to try calling on Monday, and have an appointment with a new neurologist on Tuesday, but have no idea if she knows anything about cfs/me. Ironically, I finally talked to my alternative practitioner who has seen me for the past 3 1/2 years for leaky gut issues and SHE is willing to write the letter, but I don't know if my employer will accept one from someone who is not an MD. I have sent a query and am waiting for a reply.

 

[PatJ]

Asking for recommendations for a doctor who is willing to formally diagnose ME will probably get a better response for you than asking for a doctor who can treat ME. That difference might be something @PatJ could include in the standard 'welcome to PR' posting

Thanks for the suggestion. I've added this to my 'welcome to PR' post:

There are two types of doctors who may be able to help: 1) those who will be willing to provide a diagnosis of ME/CFS but don't have the knowledge to treat it, and 2) the small minority who diagnose and attempt to treat (with mixed results since response is so individual).

If you are still uncertain about your health then a useful approach is to first look for a doctor that can help you rule out conditions that share many symptoms with ME/CFS (see Hip's Roadmap below for more info). If the doctor determines that you meet the criteria for a ME/CFS diagnosis you can then start looking for a ME/CFS specialist. Be aware that specialists often have very long waiting lists.

Suggested additions or changes are welcome.

 

[toyfoof]

I haven’t read the other threads on Dr. Conley, but he’s my doctor, and while he isn’t perfect (perfect would be a cure which we know isnt possible), he is good at doing some deep dives and will prescribe antivirals, thyroid meds, and LDN (probably more, that’s just what he’s done for me). He tested and documented my NK cell dysfunction, my hypothyroidism, my active high EBV titers, etc. He gave me my official CFIDS diagnosis. And he wrote the letters I needed for work, though I’d been seeing him for about a year by then.

 

[Gratefulheart]

Thanks, @toyfoof! It's really helpful to hear that you had a good experience. This is Dr. Conley in Flint, MI, right?

 

[toyfoof]

@Gratefulheart yep!