Dr. Joseph Brewer

[Springbok1988]

After over a year of waiting, I finally have an appointment with Dr. Brewer. I haven’t come across any posts about how appointments have gone with him.
I know he focuses heavily on mycotoxins. Does he show any interest in investigating viral aspects of the disease?
Is he willing to experiment with medications?
Does he try treat all aspects of the disease like pain, brainfog, etc.? Or does he mainly just use antifungals?
Any thoughts and input about him would be much appreciated! Thank you.

 

[Hip]

Dr Brewer is an infectious disease specialist who treats ME/CFS and Lyme, and I think would probably look at these diseases from an infection perspective. I am not sure though if he treats viral infections with antivirals, or whether he has other tricks up his sleeve to treat other aspects of ME/CFS.

Be interesting to hear about how he treats your ME/CFS.

 

[seamyb]

I'd love if you could ask him a question. Understand if you can't.

There is advice out there for people who can't get prescribed Brewer's protocol - sniffing the vapour of lugol's iodine.

I'd love to know what he thinks about this.

 

[aquariusgirl]

yes, he will treat viral, bacterial infections...
he's very chatty!

 

[Springbok1988]

I saw Dr. Brewer today. It was such a relief to talk to a doctor who understands what his patients are going through. There was no convincing or long explanations needed, no wondering if he believed me, no talking down to me, and no shame for “not exercising.”
It went really well. It started by discussing my history and symptoms. Then he talked about possible avenues of treatment. He’s starting me on valacyclovir because of blood test results I had done previously. He’s having me go in for an SIBO breath test where I will breathe into a machine for 20 min a few times over the course of two hours. He also did a quick test for MCAS by scratching me with a pen to see how my skin reacted. He said he wants to treat me for that in the future; he doesn’t like to start multiple treatments at the same time (which I appreciate).
He keeps up with the latest research which made me happy.
At the very least, he gave me hope. He also talked a bit about how funding is increasing because of long covid research. He also told me about some of his success stories which was quick to caution that not everybody shows those kinds of improvements. But I feel confident that he will be able to help alleviate some of my symptoms, at the very least.
As someone else above said, he is chatty. But he’s chatty in a good way. At no point did I feel like he wasn’t listening to me. He’s very approachable.
If you’re looking for an ME specialist in the Kansas City area, your only bet is a good one.

 

[seamyb]

yes, he will treat viral, bacterial infections...
he's very chatty!

So I take it you tried the EDTA and antifungal treatment? How did you fare? I also take it by your presence here it was not a complete cure?

 

[Springbok1988]

I can’t speak for Aquariusgirl but he didn’t mention fungal issues at all during our first meeting. He started out by prescribing Valacyclovir, and discussing SIBO and MCAS.
However, based on what I’ve read, Dr. Brewer doesn’t believe that fungal infections are the cause of ME but can help relieve some symptoms.

 

[jamie13]

I saw Dr. Brewer today. It was such a relief to talk to a doctor who understands what his patients are going through. There was no convincing or long explanations needed, no wondering if he believed me, no talking down to me, and no shame for “not exercising.”
It went really well. It started by discussing my history and symptoms. Then he talked about possible avenues of treatment. He’s starting me on valacyclovir because of blood test results I had done previously. He’s having me go in for an SIBO breath test where I will breathe into a machine for 20 min a few times over the course of two hours. He also did a quick test for MCAS by scratching me with a pen to see how my skin reacted. He said he wants to treat me for that in the future; he doesn’t like to start multiple treatments at the same time (which I appreciate).
He keeps up with the latest research which made me happy.
At the very least, he gave me hope. He also talked a bit about how funding is increasing because of long covid research. He also told me about some of his success stories which was quick to caution that not everybody shows those kinds of improvements. But I feel confident that he will be able to help alleviate some of my symptoms, at the very least.
As someone else above said, he is chatty. But he’s chatty in a good way. At no point did I feel like he wasn’t listening to me. He’s very approachable.
If you’re looking for an ME specialist in the Kansas City area, your only bet is a good one.

Hi, how are you doing now? Are you still on valacyclovir? Hope you're improving. Have you seen the doctor again?

I'm in Illinois and there are no doctors here - Kansas City isn't terribly far compared to some other options.

 

[Springbok1988]

I’m still taking valacyclovir but have only seen some improvement in my level of pain. I’m half way through the 6 months of treatment so I’m thinking I probably won’t see any other improvements but who knows.
I just did the SIBO hydrogen breath test last week and am waiting for the results.
Dr. Brewer only wants to see me every 6 months but changes in meds or other issues can be handled over the phone at any time. I’ll see him again in January.
He’s a good doctor and I plan to continue seeing him. He is also a researcher who studies EBV and HHV-6 in relation to ME so he does have a bias towards those viruses. I showed him my Coxsackievirus B ARUP titers and he seemed a little disinterested but I’ll bring it up with him again on my next visit.
I’d say it would be worth the trip for you, if you can manage it. Seeing a doctor who knows the most promising treatments and understands our situation is quite a valuable thing.

 

[jamie13]

I’m still taking valacyclovir but have only seen some improvement in my level of pain. I’m half way through the 6 months of treatment so I’m thinking I probably won’t see any other improvements but who knows.
I just did the SIBO hydrogen breath test last week and am waiting for the results.
Dr. Brewer only wants to see me every 6 months but changes in meds or other issues can be handled over the phone at any time. I’ll see him again in January.
He’s a good doctor and I plan to continue seeing him. He is also a researcher who studies EBV and HHV-6 in relation to ME so he does have a bias towards those viruses. I showed him my Coxsackievirus B ARUP titers and he seemed a little disinterested but I’ll bring it up with him again on my next visit.
I’d say it would be worth the trip for you, if you can manage it. Seeing a doctor who knows the most promising treatments and understands our situation is quite a valuable thing.

Thanks for the update.
I am also taking valacyclovir now (43 days now, no improvements), so it would be interesting for me to follow-up with Dr. Brewer after I've been on valacyclovir for a few months to see what other ideas he had. I have not been tested for other viruses other than EBV and I'm not even sure if my PCP can properly test for any others, I will have to ask her. She's at a complete loss for me though, she just puts up with me and treats me if I come up with an idea that doesn't sound harmful to her, lol... It sucks, I definitely need a doctor that knows what they're doing, but they're so expensive and far, I have to choose the right one. You said you waited a whole year to see Dr. Brewer though, right? I need to call and get on someone's schedule ASAP....
Thanks again for sharing your experience.

 

[Springbok1988]

I’ve found that PCPs generally don’t know how to test for active infections. They tend to only test if you’ve had an infection in the past. I know how you’re feeling. It’s quite frustrating dealing with doctors who aren’t up to date on the research of this disease.
It did take me a whole year to get in to see him but they said it was because of the pandemic. Because he’s an infectious disease doctor, he had been seeing a lot of Covid patients. Now that the height of the pandemic seems to have passed, they said wait times are shorter.

 

[Boba]

I’ve found that PCPs generally don’t know how to test for active infections. They tend to only test if you’ve had an infection in the past. I know how you’re feeling. It’s quite frustrating dealing with doctors who aren’t up to date on the research of this disease.
It did take me a whole year to get in to see him but they said it was because of the pandemic. Because he’s an infectious disease doctor, he had been seeing a lot of Covid patients. Now that the height of the pandemic seems to have passed, they said wait times are shorter.

Very cool that he’s helping. It feels good to talk to somebody aware of the disease. You mentioned that he scratched your skin with a pen to see how your skin reacts? Was he checking for dermatographic urticaria?

 

[jamie13]

I’ve found that PCPs generally don’t know how to test for active infections. They tend to only test if you’ve had an infection in the past. I know how you’re feeling. It’s quite frustrating dealing with doctors who aren’t up to date on the research of this disease.
It did take me a whole year to get in to see him but they said it was because of the pandemic. Because he’s an infectious disease doctor, he had been seeing a lot of Covid patients. Now that the height of the pandemic seems to have passed, they said wait times are shorter.

correct, my PCP doctor tested for EBV but it came back as a really high past infection and no current infection and then she was done.
I feel like there must be a better test? If I knew myself what that was, maybe I could ask her if she can order the test?

Anyway I am going to call Dr Brewer and some others from this forum as soon as I can and see who can take me and who doesn’t cost an insane amount.

I also made an appt with a local Infectious Disease doctor but I don’t have much faith in that at all.

 

[Springbok1988]

You mentioned that he scratched your skin with a pen to see how your skin reacts? Was he checking for dermatographic urticaria?

Yes, he said it was a symptom of MCAS and that over 90% of ME patients will have lingering red lines while under 10% of healthy patients will.

 

[Springbok1988]

I feel like there must be a better test? If I knew myself what that was, maybe I could ask her if she can order the test?

I also made an appt with a local Infectious Disease doctor but I don’t have much faith in that at all.

For information about testing, the website below is very helpful.
https://mecfsroadmap.altervista.org/

I didn’t have much luck with my general infectious disease doctor. I brought in research papers about ME, about latent EBV and persistent Coxsackievirus, and he just stared at me like I was an idiot (I was studying virology for my masters degree when I got sick and had to drop out). He ran a couple of blood tests that I requested but, other than that, wouldn’t do anything to even try to help. I hope your experience is better.

 

[Boba]

Yes, he said it was a symptom of MCAS and that over 90% of ME patients will have lingering red lines while under 10% of healthy patients will.

Thanks. I‘ve had that all my life.