Anyone seeing Dr Joseph Brewer in Kansas City?

[Starsister]

Finally after years of looking for a good GP who acknowledges CFS, i found one, and he knows Dr Brewer who I’ve been trying to get in to see for 20 years. He thinks he can get Brewer to see me. I’m in KC. Anyone have experience with Brewer? Looks like his last interest was on mold, but I don’t think that is my issue or trigger...ive always suspected a mono trigger when I was 18..or combines with other things. I’m concerned I’m not Brewers niche if he’s specifically looking for mold connections. If he is biased toward a specific cause, I can’t afford financially to be sent on a wild goose chase. Thoughts?

 

[Judee]

I’m concerned I’m not Brewers niche if he’s specifically looking for mold connections. If he is biased toward a specific cause, I can’t afford financially to be sent on a wild goose chase.

I'm sorry. I wish I could advise you but I wanted to say that your final comments in this post are my thoughts exactly. It's so difficult to find a good doctor who doesn't already have what I call a "pet" disease or diagnosis they default to. A one-size-fits-all approach really doesn't work with this disease.

Maybe, if no one else can give you input on his protocol, you could try checking his website or look for online reviews. I avoided going to a bad doctor that way after another CFS patient was referred to him and later put a comment online saying he acted like he didn't even know what CFS was and told her to go back to her PCP.

Or maybe call and see if the office can get you some info either through a protocol brochure or speaking to an assistant. ???

 

[Starsister]

@Judee thanks fo your thoughts and validation that drs can have a bias toward their pet project. I used to work in psychology research so know the drive to generate data that is line with what you are wanting to publish on., so I’m just always a bit skeptical. I did look him up online,..mostly great reviews, only bad ones were folks frustrated that he wasn’t taking new patients or the gal answering calls seemed cold and not helpful with referrals.. Only one YouTube of him and it was a not so great interview of him about mold.

 

[Judee]

You may have already seen these reviews for him. Although some of them do reference mold, there are a lot of them, especially on the 2nd page I think, that seem to say he takes the time to find out what is wrong with you. Plus, some of them referenced the long wait times to see him. That seems to indicate that he is very sought after for being a good doctor. ???

Hopefully, someone else here has seen him and can give you more insight.

 

[Dakota15]

When I tried calling Dr. Brewer's office about a month ago, they shared with me that he was not accepting new patients.

Maybe that's changed though.

 

[junkcrap50]

Yes, I'm a patient of Joe Brewer. I can answer any questions you have. I'm seeing him next week actually. He does not "just do mold," but he does look for it and treat it. I would not say it's his only niche. He's very thoughtful and takes a long time to listen to everything you have to say. He does ask questions to you. What impresses me most about him is that he's always learning and constantly reading about new research and new things. Not many doctors dedicate time to do that or are that curious. So he's definitely intellectually curious and open to new things.

The reason he's into the mold is that nearly all of his patients test positive for mycotoxins. And he's seen many patients, about 60%, improve on mold treatment. He's had several (I'd guess 10%) have complete cures and reversal of CFS with mold treatment. And he would argue that it was true CFS, because some of those patients were seeing him for CFS before he even got into mold and they pass CFS criteria.

He discovered the mold connection in 2012-13 and has been treating it for several years now. So I don't think he's as "zero'ed" in on it as he was before, since it was new to him and a new path to follow.

But he takes into account your history and your story. He really listens so if you tell him your concerns about it not being mold, he'll understand your point of view. He however is not an integrative medicine doctor or alternative doctor. He does not really order the "kit tests" and does not really manage other symptoms/side effects of CFS like hormones, methylation, etc. At least that's my experience, but he knows I have a very good integrative/primary car doctor so perhaps he just leaves it to them.

When I tried calling Dr. Brewer's office about a month ago, they shared with me that he was not accepting new patients.

Maybe that's changed though.

No. He doesn't take new patients. I think he's overworked as it is. His front office staff is pretty strict about that. However, I think a person may have a chance to see him if his/her doctor writes a letter and referral to Brewer. I'm sorry that you got that response from the office. I understand how depressing and hopeless it is to hear from these doctors that they won't see new patients or the wait time is 3 years. The only way I was able to see Brewer several years ago is because my parent was a professional colleague and friend of Brewer's. I was very lucky.

 

[Dakota15]

@junkcrap50 - thanks so much for sharing this, it's much appreciated!

Assuming you've already visited Dr. Brewer then, can I ask what kind of protocol / treatment plan you are following or that he has you on? I've always been curious for any patient who has seen Dr. Brewer.

If you prefer to DM I can use that channel as well.

 

[Starsister]

@junkcrap50 and @Dakota15 ...Are you guys in KC?! I’d love to talk with you more about local resources. Do you attend the local support groups? I did for years but the one near me closed..the “ getting well”groups through the Fibromyalgia Coalition that is. It would be nice to get a network going again.

Junkcrap... Thanks so much for responding! And you said just what I’d hoped to hear about Dr Brewer. This dr I just got in with wasn’t taking new patients either,but I lucked out with a gal I hadn’t even met referring me, and was talking to the receptionist that I’d felt a kinship with him when I saw he was on a county health board that I also was on. Plus his wife is the same healthcare profession as me. And HE is friends with Brewer and said he felt confident he could get a Brewer to see me. I’m so glad to hear he is a good listener. To diagnose, one has to have an open, curious mind which requires listening and wanting to continue to learn and grow. Most docs I’ve run into don’t.

 

[Dakota15]

@Starsister - I'm not in KC, I live in Minneapolis so in the Midwest still.

I wanted to see Dr. Brewer for 2 reasons:

1) proximity to my location (majority of the prominent CFS/ME physicians are located on the coasts at this time)
2) his experience / ideology with CFS/ME/CIRS in relation to sinuses. My CFS/ME didn't start with a flu/fever sensation but a burning in my sinuses that has never left.

I was really bummed when I tried calling Dr. Brewer's office and they informed me that he hasn't accepted new patients in over 3 years....so I had to move on to who I could get into see, which led me to heading to California.

 

[Starsister]

@Dakota15 I have been hoping to see him for many years but thought he only did research..and I didn’t want to be a a guinea pig. But I tried anyway and you had to have a referral from a certain kind of dr. Years later they just kept saying he wasn’t taking new patients. I think with the right referral though, you could still see him, as my new dr apparently has an “ in” with him. Since I am not as severe as so many I know online, I sort of feel like a shouldn’t take up a spot if someone needs it more. It’s so wrong that people have to move across the country just to get medical care. I hope you are doing OK.

 

[Dakota15]

@Starsister - thanks for the information, it's much appreciated.

While it's certainly not optimal to get up and travel to CA just for adequate medical care for this particular condition, I'm willing to do whatever it takes to get my quality of life back. As rough and tough as it sounds, this world doesn't owe me anything and it's the hand dealt at the card table so to speak. Just have to learn how to swerve on this bumpy journey of a path.

I would say though that the Midwest in particular seems to be, by far, the furthest behind in CFS/ME knowledge, research, and education. Dr. Brewer in KC and Dr. Sarah Zielsdorf in Illinois are in my opinion really the only ones off the top of my head that have high-level understanding in the greater Midwest area (if anyone on here has other thoughts please feel free to challenge). I've been wearing my activist hat reaching out to the Mayo Clinic and the University of Minnesota Medical Center in the last couple weeks with my thoughts about the Midwest and specifically Minnesota needing to get involved. Collectively these two facilities obtained $500 million from the NIH in FY 2017 for research and obviously $0 went into CFS/ME research (from what I gathered).

The Mayo Clinic reached out to me recently (I shared the Solve ME/CFS site and MEAction site amongst other information) saying they are actually looking into further information to possibly get involved in the near future - I volunteered that I would love to meet with the research team for Infectious Diseases and provide as much information as I can. Whether this is just lip service or not remains to be seen - but I've been challenging that the Midwest or Mayo/U of MN cannot be considered to be "innovative" or on the "cutting edge of healthcare" if we have to travel over 700+ miles just to talk to a physician that knows what CFS/ME is.

 

[Starsister]

@Dakota15 ... That’s great that you have expressed the need for more specialized medical care in the Midwest. I can understand why they tend to cluster on the coasts...It’s not good as a medical system, but I realize the population is denser, and the more prestigious schools are on the coasts to support the research, or have faculty who are applying for the grants. I used to work for NIMH in research, the mental,health counterpart to NIH...and also see some of the politics of it. It’s a miracle that someone like Dr Brewer is even here in the Midwest. He could get a lot more prestige and funding associating himself with the other institutions. Hopefully he sees it he good for his medical practice to be so much in demand here. He sounds like one of those rare gems if an MD.

 

[MrMagoo]

@Starsister - thanks for the information, it's much appreciated.


I would say though that the Midwest in particular seems to be, by far, the furthest behind in CFS/ME knowledge, research, and education. Dr. Brewer in KC and Dr. Sarah Zielsdorf in Illinois are in my opinion really the only ones off the top of my head that have high-level understanding in the greater Midwest area (if anyone on here has other thoughts please feel free to challenge). .

Have you seen Dr. Z? This stuff is too complicated for me to figure out and it all may be a fool's errand since I have a mild traumatic brain injury(MRI fine but tons of symptoms).

 

[Dakota15]

No I haven't personally. An ME/CFS researcher spoke highly of Dr. Z, so that's all I know of her at this time.

 

[Starsister]

Have you seen Dr. Z? This stuff is too complicated for me to figure out and it all may be a fool's errand since I have a mild traumatic brain injury(MRI fine but tons of symptoms).

Who is Dr Z?

 

[Dakota15]

Dr. Sarah Zielsdorf in Illinois