My Experience With Dr. Kaufman at the Open Medicine Institute

[AaroninOregon]

Dr. Kaufman has not only let me record appts, he requested that I do so I can go back and listen to things that I may not remember. I recorded on my iPhone and it is definitely okay.

Excellent. Thank you @Gingergrrl I don't have an iphone, but I have a held held tape recorder.

 

[Billt]

@Billt so Dr. kaufman was ok with you recording the appointment? I called his office and asked Helen about recording the appointment and she said she had never had that request so she didn't have an answer for me.

YES .. Dr K did not mind at all. That way I can go over the info later. Also record our phone appts too.

I think it saves him time from us having to call him back and ask the same questions he has already told us....lol

Be Well

 

[AaroninOregon]

YES .. Dr K did not mind at all. That way I can go over the info later. Also record our phone appts too.

I think it saves him time from us having to call him back and ask the same questions he has already told us....lol

Be Well

haha, so true Thanks @Billt

 

[Gingergrrl]

Also record our phone appts too.

I never recorded a phone appt or even thought to ask... that was smart of you.

 

[Jo86]

Hi everyone. I'm seriously considering trying Dr. Kaufman. Has anyone besides the OP seen him and had as much success ?
Any info would be great.
Thank you.

 

[Billt]

Hi everyone. I'm seriously considering trying Dr. Kaufman. Has anyone besides the OP seen him and had as much success ?
Any info would be great.
Thank you.

Jo86. There are a few of us on here that have seen him. I have seen him for my son and have had a few phone consults. When we first saw him, there was about a 3 week wait for a appointment. From what I understand, it is much longer now, but that seems to be common because there are so few Drs that specialize in this.

Dr. K has given us lot's of things to try, but so far we have not found the right combination and there has been no improvement. So, no success but at least he is trying and wants to help. We are far away from him so very hard to get to see him. But we have NO local drs that want to even try to help !!

There are still other things he is willing to try , but each one is a 3 month trail before we recheck with him, but again that seems to be normal as this is not a quick fix ( at least for us ).
Cost is also a factor as this is not an inexpensive thing to try to fix and our insurance doesn't cover much !

Good luck to you and let us know what you decide to do... Be well Bill

 

[Jo86]

thanks a lot Buillt. What time of condition, your son (if I may) ? Just for the info, it's been 9 years of fast deteriorating exhaustion for me. Started as brainfog, then became body-fatigue too. Thought it was CFS, then Adrenal Fatigue, then this then that...all I know is it's gut-related (gastric symptoms) and my body is in a state of sheer deterioration, everyday's worse, and complete utter imbalance.

I'm tired (pun unintended) of going alternative, I want a real MD but with the right open mind and modern knowledge.

 

[Billt]

thanks a lot Buillt. What time of condition, your son (if I may) ? Just for the info, it's been 9 years of fast deteriorating exhaustion for me. Started as brainfog, then became body-fatigue too. Thought it was CFS, then Adrenal Fatigue, then this then that...all I know is it's gut-related (gastric symptoms) and my body is in a state of sheer deterioration, everyday's worse, and complete utter imbalance.

I'm tired (pun unintended) of going alternative, I want a real MD but with the right open mind and modern knowledge.

He started with Mono, and just never got over it. I guess you could say full blown EBV symptoms Severe brain fog, extreme body fatigue as well. Seems he has a slight immune deficiency that may be keeping him from improving. He did have all the other Mono stuff at the beginning. That lasted a few months and just left him totally wiped out. He can't work or concentrate as it totally drains him.

He does have SIBO that just won't go away. So Dr K is treating him for that as well as anti-virals and some supplements. Also LDN,

You have had this much longer than him and wish you well. Dr K is very through and does lots of bloodwork too. So, he may find some things others have missed. Have you ever done a SIBO test ? Dr K can do that. Never know, that could be some of the gut issues. My son has no GI issues just positive for SIBO. Dr K is open minded as I think the other handful of these Special doctors are.

 

[Jo86]

thanks again Billt. I just managed to get a consultation for November, glad it's that early. Always suspected SIBO, but never too sure about the veracity of it. So many new online diseases, some of which never had any true scientific evidence (leaky gut, or so I think). Anyways. Will see what he tells me.
Good luck to you and your son. He seems in good hands.

 

[SwanRonson]

I just scheduled an appointment with Dr. K for late April of next year. That was first available. I do have a question for anyone that has seen him. Is he naturopathic? I've had a pretty bad experience with naturopath's (both were also M.D.'s) so far. They've taken thousands of dollars from me with nothing to show for it. They talk a good game but really it's just lip service to get your money. I just want to make sure that Dr. K is not in that similar boat.

One red flag for me is if they sell supplements in the office. It's very fishy.

Thanks in advance for the input. I just don't want to get scammed again. This would be a very long trip for me from Alabama to California.

 

[Gingergrrl]

@SwanRonson Dr. K is not a naturopath and OMI does not sell supplements.

 

[drob31]

@SwanRonson Dr. K is not a naturopath and OMI does not sell supplements.

The fact they don't sell supplements is a big clue that they aren't in to for the money. Nearly every ND or integrative doctor I've worked with, no actually, every single one trys to sell supplements.

 

[Little Bluestem]

My Integrative doctor does not sell supplements. Sometimes I wish that she did. It would be easier than searching around for what she recommends.

 

[Firefly_]

My experience is that Dr Kaufman is primarily a western medicine dr that will prescribe natural remedies and supplements where they are more effective and least destructive but still relies mostly on prescription meds to try and fix us. I think he tries to start with meds that have the lower chances of adverse reactions and moves on from there if necessary.

 

[SwanRonson]

My experience is that Dr Kaufman is primarily a western medicine dr that will prescribe natural remedies and supplements where they are more effective and least destructive but still relies mostly on prescription meds to try and fix us. I think he tries to start with meds that have the lower chances of adverse reactions and moves on from there if necessary.

Thanks guys. That's good to know. What's crazy is that I live in Birmingham, AL - literally right down the street from Dr. Jared Younger's new world class fatigue/neuro research lab, but it's all research. No clinical. So I'm relegated to traveling 2000 miles to SF to see a decent CFS informed doctor. What a crazy world.

 

[drob31]

Thanks guys. That's good to know. What's crazy is that I live in Birmingham, AL - literally right down the street from Dr. Jared Younger's new world class fatigue/neuro research lab, but it's all research. No clinical. So I'm relegated to traveling 2000 miles to SF to see a decent CFS informed doctor. What a crazy world.

Are you having more adrenal fatigue like CFS?

 

[Sushi]

What's crazy is that I live in Birmingham, AL - literally right down the street from Dr. Jared Younger's new world class fatigue/neuro research lab, but it's all research. No clinical.

He will be setting up clinical soon--or hopes to. But since he has money behind him it could actually happen. I'll quote from the UAB Magazine:

At UAB, Jarred Younger, Ph.D., hopes to establish Alabama’s first research and clinical care center specializing in fibromyalgia and related conditions, including chronic fatigue syndrome and Gulf War Illness.

 

[Gingergrrl]

Thanks guys. That's good to know. What's crazy is that I live in Birmingham, AL

How ironic b/c I am getting a special medication from a pharmacy in your city (and I live in CA) and b/c of CA regulations (that the other 49 states do not have) it takes three weeks for me to get the med and I was wishing today that I lived in Birmingham, AL to just pick it up in person LOL!

 

[SwanRonson]

Are you having more adrenal fatigue like CFS?

Not really. My illness started with gastrointestinal problems. The severe brain fog, upside-down circadian rhythm and muscle achiness/fatigue developed after that. My best guess is that I got a gut infection that screwed up my immune system in some way and things never went back to normal. It hit me all of the sudden. I went from the best health of my life to researching disability options within 30 days.

My hope for Dr. Kaufman is just to have someone to listen and take me seriously and test based on that. Sounds like he will do that. I still look relatively healthy, even though I feel terrible. Because of that it's been hard to get a doctor to care.

 

[SwanRonson]

He will be setting up clinical soon--or hopes to. But since he has money behind him it could actually happen.

He mentioned that at the outreach day I attended a few months ago. Hope it happens. I haven't heard anything firm yet. One of the state senators here is pushing this as well, since he has personal experience with CFS.