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My Experience With Dr. Kaufman at the Open Medicine Institute

Billt

Senior Member
Messages
289
Location
New Orleans
Thanks a lot for that. Really helps a lot to learn and read this kind of info.
So would I be wrong if I said, globally, common bloodwork that could be done anywhere + SIBO breath test + a few more particular infection type tests ?
I am not an expert on this,, but I would think alot of these could be done before you go there. That may cut down on what you would need to do there. I would just make sure you do them and have results right before you go.
I think there are others that have done this.

Dr.Kaufman mentioned to me a while back specifically a Galaxy Labs test (Bartonella, they culture your blood over three weeks, about 1000$

We did the Galaxy test and it was $ 1000.00 and our insurance didn't cover it ! Maybe other ins would. They send you a packet with vials and info. You have to get blood drawn locally 3 times then send it to them.
Results for us were inconclusive and wanted us to do another one which we declined. It also took 6 weeks to get all results back. Hope this helps. It was a shot in the dark for us, just didn't work out.
 

Jo86

Senior Member
Messages
197
Location
France
I am not an expert on this,, but I would think alot of these could be done before you go there. That may cut down on what you would need to do there. I would just make sure you do them and have results right before you go.
I think there are others that have done this.



We did the Galaxy test and it was $ 1000.00 and our insurance didn't cover it ! Maybe other ins would. They send you a packet with vials and info. You have to get blood drawn locally 3 times then send it to them.
Results for us were inconclusive and wanted us to do another one which we declined. It also took 6 weeks to get all results back. Hope this helps. It was a shot in the dark for us, just didn't work out.

As very, very often, if not almost always for us "obscure" diseased people. Thanks a lot everyone for your input. I live in France though, so sending blood by mail for it to reach the US within a couple of days might be tricky... and French insurance doesn't cover anything outside the borders anyway.
 

perrier

Senior Member
Messages
1,254
I'm looking for a doctor after having done the rounds for my adult daughter. Are you folks recommending Kaufman highly?

My daughter saw DeMeieleir and it was lost money, in her case. She also saw Teitelbaum. Always a relapse ensues. But we really need to find someone very serious who doesn't push supplements.
 

SwanRonson

Senior Member
Messages
300
Location
Alabama
But we really need to find someone very serious who doesn't push supplements.

That was my criteria as well. I will say that Kaufman is indeed serious. He's not a naturopathic supplement pusher. I got ripped off many times with those guys.

I mentioned to Dr. Jared Younger in an email that I was going to see Kaufman and his reply was: "Kaufman will without a doubt perform every test that needs to be conducted. If I were needing to be checked out thoroughly, I'd go to him."

That pretty much sealed the deal for me and I decided to spend the money to go see him. If you don't know Younger, he's a top notch ME/CFS researcher here at UAB. Maybe Kaufman will heal me and maybe not. But I don't think you'll find any clinician better suited to the task that is also accessible right now. It's a lot of money, so you have to ultimately weigh it all out.
 

perrier

Senior Member
Messages
1,254
I believe you're in Canada yeah? Have you considered Dr. Hyde at all?
Gracious! When my daughter fell ill we immediately contacted him. Impossible to get an appointment, and his strategy is to send the patient to a raft of specialists. So his heart may be in the right place, but it's good old backward Canada. Don't get me wrong. The land is majestic, the infrastructure super, but the health care in the pits.
 

perrier

Senior Member
Messages
1,254
That was my criteria as well. I will say that Kaufman is indeed serious. He's not a naturopathic supplement pusher. I got ripped off many times with those guys.

I mentioned to Dr. Jared Younger in an email that I was going to see Kaufman and his reply was: "Kaufman will without a doubt perform every test that needs to be conducted. If I were needing to be checked out thoroughly, I'd go to him."

That pretty much sealed the deal for me and I decided to spend the money to go see him. If you don't know Younger, he's a top notch ME/CFS researcher here at UAB. Maybe Kaufman will heal me and maybe not. But I don't think you'll find any clinician better suited to the task that is also accessible right now. It's a lot of money, so you have to ultimately weigh it all out.
Thanks for writing. My daughter is saying she can't hold on longer. Says she hasn't the resources for this horror. I have to find someone who will lift her up somewhat. Because I'm scared if we don't.
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
Dr Kaufman is brilliant and took me from bedridden to somewhat functional. I can cook and/or do light cleaning a lot of times as long as I haven't overdone in the previous day's, I sit up in my chair in the living room playing video games (yay!!) far more than I lie in bed, I can read again for the most part, and can occasionally drive and grocery shop again. That being said, I would caution against unrealistic expectations from any practitioner no matter how brilliant. This disease is extremely complicated and every round of testing shows something new and different so my meds are constantly changing. Some people may get no relief at all, but I guarantee he will keep looking and has run tests that had my GP completely bumfuzzled. (He'd never even heard of them, let alone knew what they were for lol) And the tests showed results.

Also, my situation regarding the Lyme testing is exactly the same as your sons @Billt, inconclusive, declined another go around at $1000.00. But now he's really wanting me to do it again with a tissue sample this time. I'll probably do it.

Oh and regarding his prescribing practices, while he relies primarily on prescription meds, he also uses more natural supplements where they may be safer and more effective. In my case it was Iberogast, Neuroprotek, and some other stuff.

@perrier if you can get your daughter down to see him you should, it would at least give her a ray of hope which is in very short supply when you are so sick!
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
@perrier, @SwanRonson -

I saw Dr. Kaufman last September. He ran a raft of tests (many of the same as SwanRonson although no lyme tests) and he wasn't able to do anything for me (FWIW, my SIBO test was negative). Fortunately for me, almost all of the testing was paid for by Medicare. My functioning seems to be at the level of Firefly_'s (I was at this level before I saw Kaufman), and I credit certain supplements for getting me to that level, so I think it's a mistake to automatically discredit someone who "pushes supplements". I'm not sure what that means actually - I'm guessing you mean someone who treats nutritionally instead of with drugs?

I don't think any of us are sick from a lack of prescription drugs but we do seem to have a wide variety of nutritional malfunctioning. Having said that, I know that some drugs have helped some people with certain issues, but from my experience and what I see on this board, most of the improvement people make is due to "supplements", not prescription drugs. Drugs do have their place but I think nutrition and supplements have a bigger place in our health. And I think a lot more harm in general has been caused by prescription drugs (fluoroquinolones, statins, PPIs, to name a few)

e.g., SIBO can be due to low stomach acid. I've been taking betaine HCL, a supplement, with meals for probably 20 years and it's quite possible that this supplement has kept SIBO at bay for me. I took HCL on the recommendation of a doctor who is extremely knowledgeable about nutrition. Low stomach acid is extremely common in people with ME/CFS. So it makes sense that 80% of Kaufman's CFS patients have SIBO - and it's also very possible that betaine HCL might help them a lot.

I'm not trying to discourage anyone from seeing Dr. Kaufman. It was helpful to get the testing done. It showed certain abnormalities (e.g., low NK cell functioning) and few abnormal immune numbers but he wasn't able to do anything about them. But I know he has helped many people.

One thing that was helpful to me was Nutreval testing I had done 6 years ago. Amazingly enough it was covered by Medicare. Two things which showed up which would have gone unnoticed otherwise were very low B6 and also low leucine, one of the branched chain amino acids. Taking BCAAs has reduced my PEM recovery time by half, which was huge for me. Also the B6 (P-5-P form) has helped my energy. But I still crash (PEM), nothing has been able to stop that, yet --
 

SwanRonson

Senior Member
Messages
300
Location
Alabama
and I credit certain supplements for getting me to that level, so I think it's a mistake to automatically discredit someone who "pushes supplements". I'm not sure what that means actually - I'm guessing you mean someone who treats nutritionally instead of with drugs?

I take supplements every day too, although not as much as I used to. My list is really small now.

What I mean by "pushing supplements" is when the physician recommending them also gets a cut of the profit from the sale. I went to two naturopathic MD's who both recommended loads of supplements (which I bought because I was desperate) which they sold to me in their front office on the way out. I spent lots of money with no results. It's like exiting the doctor through the gift shop.

All the good results I've had from supplements have come from reading and studying a lot and trying things a little at a time. The other problem with the supplements those types of docs sell are that they have tons of fillers in them that are counterproductive. For instance, I talked one of them into prescribing me Rifaxamin for SIBO, but she also had me taking one of her re-labeled vitamin concoctions that contained carageenan, which makes SIBO worse.

Just makes you feel used, like you got sucked in with snake oil.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
@SwanRonson - okay, I understand now. I thought you were dismissing all supplements and doctors who recommended them. My CFS nutritional doctor has recommended several supplements for me which were good, but he doesn't sell them. My chiropractor who does muscle testing does sell Standard Process products and a few others, but anything he's given me has generally helped, and his prices are actually better than you can buy the stuff on-line. But I have also seen practitioners who sell pricey supplements in their offices. I think it's a mixed bag - we have to educate ourselves with everything we do, can't rely solely on any doctor.
 

perrier

Senior Member
Messages
1,254
Would you mind elaborating my De Meirleir was a waste of money for your daughter? I am planning to see him in a couple of months and appreciate any input.
My daughter saw him twice. We flew to Brussels from Canada. There were also several telephone consults. We arrived extremely prepared: succinct summaries and results of various testing all typed out, history of treatments and physicians seen, and outline of how my daughter became ill.

He said very little. Just wanted lots of blood. She gave these 12 vials. Then she crashed. She reacts very badly to blood draws. She gave 6 on one day and 6 on another.

Here was the first problem: all he offered was saline. Said she could have as much as she liked. Even every day. Now when this has happened before, a doctor in New York and another in LA pumped my daughter with vitamin IVs, really good ones, and she would recover within a day or two.

But he had no IVs, he could offer. He was not interested when I explained what other physicians did.

He gave us a very short list of what she was to take. B12, that kind of thing. By the time we saw him we had done the circuit. So b12 was amusing. We took the plane home.

But we did not give up. A few months later. Rented an apartment and we were going to be serious about the treatment. It was a repeat though prolonged for a couple of months. We may have been there longer. She did not get immunoglobulin, nothing really. Just the saline IVs. She was so crashed from more blood work.

Then we were told she had Lyme. He said he would organize a hospital stay in Canada with some contacts, because my daughter was so weak. And he said she needed to be in hospital for the antibiotic IV. He never did what he promised.

Then we said we would return to Brussels for his treatment of the Lyme.

He said fine. And we indicated a month we would return.

My daughter called him and said we were coming, as planned.

His answer: you can't come I won't be here. And he never said when he would be Nd when she should come.

Eventually, a mailing arrived stating she had Lyme and that she should go see Harris.

So we just found that he wasn't reliable, in our case. Others adore him. So, what can I say.

And we lost so much serious money, flights, apartment, car rental. We did our best thinking here was a top doctor and we were going to park right beside him.

When we went to Harris it was equally bad. We flew from east to west, and the chap never came out to see my daughter. A lady assistant, not a doctor, met us and again the B12 and dome supplements were proposed. When I asked why my daughter couldn't see the doctor, though we had an appointment we thought, we were to,d he doesn't see the patient on the first visit.

So we flew home, and well desperate people are credulous, and we continued with their supplements, and there were calls to the lady, and then we woke up and realized he was not available. He knew nothing of my daughter, and never saw her!

I can write a book. This is just the briefest summary.
 

perrier

Senior Member
Messages
1,254
Dr Kaufman is brilliant and took me from bedridden to somewhat functional. I can cook and/or do light cleaning a lot of times as long as I haven't overdone in the previous day's, I sit up in my chair in the living room playing video games (yay!!) far more than I lie in bed, I can read again for the most part, and can occasionally drive and grocery shop again. That being said, I would caution against unrealistic expectations from any practitioner no matter how brilliant. This disease is extremely complicated and every round of testing shows something new and different so my meds are constantly changing. Some people may get no relief at all, but I guarantee he will keep looking and has run tests that had my GP completely bumfuzzled. (He'd never even heard of them, let alone knew what they were for lol) And the tests showed results.

Also, my situation regarding the Lyme testing is exactly the same as your sons @Billt, inconclusive, declined another go around at $1000.00. But now he's really wanting me to do it again with a tissue sample this time. I'll probably do it.

Oh and regarding his prescribing practices, while he relies primarily on prescription meds, he also uses more natural supplements where they may be safer and more effective. In my case it was Iberogast, Neuroprotek, and some other stuff.

@perrier if you can get your daughter down to see him you should, it would at least give her a ray of hope which is in very short supply when you are so sick!
Thanks ever so much for thinking of us. I need to show her a ray of hope, and fast.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
But he had no IVs, he could offer. He was not interested when I explained what other physicians did.
I wonder why? He often gives "recovery' IVs to patients.
It was a repeat though prolonged for a couple of months. We may have been there longer. She did not get immunoglobulin, nothing really. Just the saline IVs. She was so crashed from more blood work.
Again, a mystery. He offers comprehensive treatment to most patients I am in contact with--and he certainly has for me.
 

perrier

Senior Member
Messages
1,254
I wonder why? He often gives "recovery' IVs to patients.
Again, a mystery. He offers comprehensive treatment to most patients I am in contact with--and he certainly has for me.
Well there was mutaflor and a couple of things. But when we were there he did not offer to do anything, and I cannot understand why.
 

perrier

Senior Member
Messages
1,254
Well there was mutaflor and a couple of things. But when we were there he did not offer to do anything, and I cannot understand why.
I never heard of recovery IVs. I begged for something, because she was flat on her back. He said saline was best. And to come in and do it every day, if she wanted.