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My Experience With Dr. Kaufman at the Open Medicine Institute

perrier

Senior Member
Messages
1,254
After she hemorrhaged in Canada, I called him and that was the first time he suggested something: immunoglobulin. So my daughter received that, but she got it in the USA.

I am in touch with some of his patients. They get antibiotic IVs.others get other things.

I just do not understand why he didn't propose help. My daughter is a very polite, well spoken person, a likeable pretty person.
 

perrier

Senior Member
Messages
1,254
He did tell us that Klonopin causes suicidal ideation. And he suggested cutting the dose and adding Loramet. So another benzo went into the mix. Look, I met patients particularly Flemish ones who say he saved their lives. I just do not understand with the issues my daughter had why he didn't take a more active interest. Perhaps he saw how delicate she was, and didn't want to risk anything with her. I tried really hard, and do did my daughter. She did what he said, but we found it was lots of tests, and no movement upwards. I do not wish to discourage anyone. This as our sad experience. Sushi has had help from him.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
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.

I'm a little confused... it sounds like you went to Brussels and stayed for a few months, maybe longer, to see KDM and your daughter only received saline IVs as treatment?

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

Who do you mean? Steven Harris, MD in Redwood City, California?

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!

Who did your daughter see? A PA (physician assistant)? There's an Yvonne Lin Sorenson listed as working at Dr. Harris' clinic. The website for the clinic (Pacific Frontier Medical) makes it sound like Ms Sorenson practices independently, a practice which I find very odd as a physician, as PAs have less medical training than nurses.

When (how long ago) did you see KDM? I wonder why he would refer you to a doctor in California (unless it some other Harris) when he treats Lyme himself? You don't say from what part of Canada you come - was Harris the closest LLMD for you?

I don't mean to grill you, I just find this whole thing very odd and disturbing.
 
Messages
15,786
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.
This is a little confusing. Are you saying that he offered saline IV, but you wanted other types? I think he usually wants to see test results before deciding on medical treatments, which is pretty reasonable. It's also possible that it was simply the IV fluid helping your daughter in the past, not the extra vitamins, as it can help a lot with orthostatic intolerance.

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.
He starts with more basic support while waiting for lab results. And injecting high dose hydroxoB12 into the muscle is something which many of us have been helped by. It's superior to a vitamin IV because it has slower and more sustained release from the muscle.

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.
Well, he does have vacations, trips to participate in conferences, and traveling to other clinics. So just dropping by isn't going to work unless a specific appointment has been arranged with the front desk. We had to work around the office summer vacation weeks to start my IV antibiotics, and they made it clear when the office would be closed.

But I wouldn't even consider renting an apartment or hotel, buying airplane tickets, and then telling the clinic when I was going to show up. It needs to be arranged to fit their schedule.
 

Jo86

Senior Member
Messages
197
Location
France
@perrier wow, thanks for that story with your daughter and Merleir...that's AWFUL. I'm so sorry that would happen to anyone. I know because I was planning a trip from France to California myself and I know about all the expenses and the stress of even really considering putting in that much money for one single trip. I'm sooo sorry to read that. I'm glad you seem you've overcome that chapter. That's really insightful information, and although it's just one story and as you've said others have liked him, it's still very definite information about him. He and Dr.Kaufman are the two true doctors I considered visiting, but Merleir's waiting list was ridiculous and I knew about the fees and all that. He seems to be one of these doctors who earned a lot in a very short amount of time and has turned into a businessman more than anything else and people to him are just part of an environment.
B12 for a so-called super endo-specialist, that's farcical. No, it's worse than that. Anyways.
 
Messages
15,786
but Merleir's waiting list was ridiculous and I knew about the fees and all that. He seems to be one of these doctors who earned a lot in a very short amount of time and has turned into a businessman more than anything else and people to him are just part of an environment.
His fees are extremely cheap - 60-80 euros per visit, every 2-3 months. I'm not sure why you think those fees are excessive. I also don't see him earning a lot of money, and he is very much focused on being a doctor.

I'm not sure where you are hearing these things, but they are completely false.

B12 for a so-called super endo-specialist, that's farcical. No, it's worse than that. Anyways.
It's a very high dose of B12, and it's the primary reason I no longer have chronic pain.
 

Vojta

Senior Member
Messages
167
Location
Czech Republic
@perrier I know how you feel about your experience with KDM. But you and your daughter can be glad you lost only money and energy. Over the years when I trusted him I lost tens of thousand of € and now I'm only permanently worse with multiple complications because of useless damage to the gut and immunity. I had zero improvement at any time over 4 years with any of his lyme treatments and he couldn't care less. But it's not personal. At the moment every sick person has lyme according to him no matter what test results and who doesn't fit or react to his lyme treatments is of no other interest to him.

I'm preparing to travel to see doctor Kaufman this year too. I just wish I had stopped antibiotics 2 years ago and tried to find other specialist for second opinion.
 

perrier

Senior Member
Messages
1,254
I'm a little confused... it sounds like you went to Brussels and stayed for a few months, maybe longer, to see KDM and your daughter only received saline IVs as treatment?

The first time we were there for a few days. The second time we rented an apartment thinking to stay longer. Of course we had appointments. His secretary, the one I had dealings with was a wonderful person. I never had trouble with any staff,they were very kind.

Who do you mean? Steven Harris, MD in Redwood City, California?

Well, at first he gave the ME confirmation. But later he was testing his patients for Lyme and a vast majority had positive from his testing, or low positive. My daughter was now in this category too. The doctor even told us he was learning about Lyme treatment.
Please understand, I never had any friction or antipathy for him. I tried hard to work with him. But my daughter's complex situation didn't seem to interest him



Who did your daughter see? A PA (physician assistant)? There's an Yvonne Lin Sorenson listed as working at Dr. Harris' clinic. The website for the clinic (Pacific Frontier Medical) makes it sound like Ms Sorenson practices independently, a practice which I find very odd as a physician, as PAs have less medical training than nurses.

Yes, I believe it was Yvonne, a very nice lady. But I had made an appointment with Harris. My daughter is very sick, and barely mobile at the best of times. I did not fly across the continent for this. Not serious.

When (how long ago) did you see KDM? I wonder why he would refer you to a doctor in California (unless it some other Harris) when he treats Lyme himself? You don't say from what part of Canada you come - was Harris the closest LLMD for you?

We were there in 2011. We stayed with him for I guess 2 years. The distance didn't help.

What disturbed me was when my daughter was very crashed and on her back day after day, his intervention was not what it should have been. I know he has seen this before, but she needed more help to try and get her a bit better. The lab technician was very kind too. I will never forget him. I have no complaint about the clinic staff, just the October seemed uninterested in the case.

I don't mean to grill you, I just find this whole thing very odd and disturbing.
 

Jo86

Senior Member
Messages
197
Location
France
His fees are extremely cheap - 60-80 euros per visit, every 2-3 months. I'm not sure why you think those fees are excessive. I also don't see him earning a lot of money, and he is very much focused on being a doctor.

I'm not sure where you are hearing these things, but they are completely false.


It's a very high dose of B12, and it's the primary reason I no longer have chronic pain.

I'm glad you've found a solution for your problem.
For Meirleir, I remember I called some time around June that year and they told me they had room for April the next year or sth like that.
60-80€ for a specialist (here in France at least) is about standard but pretty cheap for a world renowned specialist. I remember pretty high fees for the breath test and other tests.
It's very strange, I just researched him and he doesn't look anything like what I remembered... I remember some young guy with longer, brown hair... could it have been I'm confusing him ? I clearly remember the name though. Weird !
 

perrier

Senior Member
Messages
1,254
This is a little confusing. Are you saying that he offered saline IV, but you wanted other types? I think he usually wants to see test results before deciding on medical treatments, which is pretty reasonable. It's also possible that it was simply the IV fluid helping your daughter in the past, not the extra vitamins, as it can help a lot with orthostatic intolerance.

We accepted the saline, believe you me!
But as I said, in previous such experiences, good vitamin IVs have pulled her out of the total collapse.

He starts with more basic support while waiting for lab results. And injecting high dose hydroxoB12 into the muscle is something which many of us have been helped by. It's superior to a vitamin IV because it has slower and more sustained release from the muscle.

Yes, you are correct. Basic support.

Well, he does have vacations, trips to participate in conferences, and traveling to other clinics. So just dropping by isn't going to work unless a specific appointment has been arranged with the front desk. We had to work around the office summer vacation weeks to start my IV antibiotics, and they made it clear when the office would be closed.

With all my respect for you, please accept and try to accept that we are not idiots. An arrangement had been verbally made with him, after asking him which month to come in. So, we didn't just come, we made a phone appointment to reconfirmed this plan.

So my daughter spoke with him for a minute or two. And she said, as planned she would like to come. Which dates should she come on?

His reply was that he wasn't going to be there.

My daughter was very sick at the time she spoke with him.

We did not then buy tickets etc.
------------------------

Perrier did not write the following:

But I wouldn't even consider renting an apartment or hotel, buying airplane tickets, and then telling the clinic when I was going to show up. It needs to be arranged to fit their schedule.
--------------
You are treating me with some condescension, and yourself with some superiority.
We did not do any of this, after what he said on the telephone, that he would not be there.

We saw him twice, on two visits, and we had appointments. This was for a third visit.
I can see you wish to defend the doctor and blame a very sick patient and her mother. I believe he has helped many people. I spoke with them in the waiting room. I speak several languages and was able to communicate. But my daughter is severely ill, and she was perhaps not of interest to him. I do not know. I have nothing but good to say of his staff.
 
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Jo86

Senior Member
Messages
197
Location
France
@perrier I know how you feel about your experience with KDM. But you and your daughter can be glad you lost only money and energy. Over the years when I trusted him I lost tens of thousand of € and now I'm only permanently worse with multiple complications because of useless damage to the gut and immunity. I had zero improvement at any time over 4 years with any of his lyme treatments and he couldn't care less. But it's not personal. At the moment every sick person has lyme according to him no matter what test results and who doesn't fit or react to his lyme treatments is of no other interest to him.

I'm preparing to travel to see doctor Kaufman this year too. I just wish I had stopped antibiotics 2 years ago and tried to find other specialist for second opinion.

Wow.... VERY sorry to read that too. Those are the kinds of risks we do have to take though in our situations, so don't despair or think you've "wasted" time or money or anything else. Trial and error these days is the only way to go. At least you had the courage to go and get all that done.

You even got damage, ay ? What a dark age we live in medically speaking. Internet, HD TV, video-games and stuff the human species is doing fantastic, terabytes of computer data constantly stored in smaller and smaller chips by the day; but medicine wise, we're bad. A top, top world renowned specialist is only capable of far-fetched experimentation at best and likely will do nothing for you or even damge you, that's just BAD. Clueless individuals with sick people. I hope I live long enough (or at all !! :p ) to see the day ppl understand the fundamental importance of gut issues and the absolute physical reality the whole CFS spectrum is. We're as sick as the next seriously disease-hindered person.
 

perrier

Senior Member
Messages
1,254
@perrier I know how you feel about your experience with KDM. But you and your daughter can be glad you lost only money and energy. Over the years when I trusted him I lost tens of thousand of € and now I'm only permanently worse with multiple complications because of useless damage to the gut and immunity. I had zero improvement at any time over 4 years with any of his lyme treatments and he couldn't care less. But it's not personal. At the moment every sick person has lyme according to him no matter what test results and who doesn't fit or react to his lyme treatments is of no other interest to him.

I'm preparing to travel to see doctor Kaufman this year too. I just wish I had stopped antibiotics 2 years ago and tried to find other specialist for second opinion.
Yes, this is what many people say. Every sick person has Lyme, yes. I am hearing this also.

I know he helped his daughter tremendously. This encouraged me. I said he has a father's instinct to help.he will understand us, I thought. But in our case, nothing much worked. My daughter couldn't take antibiotics in pill form due to bleeding. And she needs to be overseen by the doctor. So this is why we were ready to stay there.
We all have to live with ourselves, this is my philosophy in life. As I matured, I tried to keep this in mind in my own profession.
 
Messages
15,786
It's very strange, I just researched him and he doesn't look anything like what I remembered... I remember some young guy with longer, brown hair... could it have been I'm confusing him ?
That doesn't sound at all like KDM. He's older with short hair. You probably have him confused with someone else.
 

dadouv47

Senior Member
Messages
745
Location
Belgium
I'm very sorry to read about your daughter and your bad experience with KDM.
I'm a new KDM patient so I can't judge him on the results of the treatment. What I know is that he's the only Doctor that took my case seriously and got finally a diagnostic after 7 years of illness ( Lyme). I was also really impressed by everything he said. Of course he's really a ''cold'' person and things works in a bureaucratic way so it's sounds like he doesn't care, but I think ( and hope) that it's not true.
No one will claim here that KDM is god and can treat successfully every patient. We hear about really bad stories, and some wonderful stories. I understand your anger and I felt the same with many doctors ( hope I will never feel the same about KDM).
The only thing you said that I thought was pretty unfair was ''But we really need to find someone very serious who doesn't push supplements''. From what I read and talked with other Doctors, KDM's approach for Lyme is far from crazy and is close to what most Lyme specialists uses. Yes he also likes to add a lot of supplements and is very interested in all the gut problematics, but I don't think he's treating Lyme like it was nothing and only by pushing supplements.
I really hope you will find the right Doctor and treatment for your daughter.
Regards
David
 

perrier

Senior Member
Messages
1,254
I'm very sorry to read about your daughter and your bad experience with KDM.
I'm a new KDM patient so I can't judge him on the results of the treatment. What I know is that he's the only Doctor that took my case seriously and got finally a diagnostic after 7 years of illness ( Lyme). I was also really impressed by everything he said. Of course he's really a ''cold'' person and things works in a bureaucratic way so it's sounds like he doesn't care, but I think ( and hope) that it's not true.
No one will claim here that KDM is god and can treat successfully every patient. We hear about really bad stories, and some wonderful stories. I understand your anger and I felt the same with many doctors ( hope I will never feel the same about KDM).
The only thing you said that I thought was pretty unfair was ''But we really need to find someone very serious who doesn't push supplements''. From what I read and talked with other Doctors, KDM's approach for Lyme is far from crazy and is close to what most Lyme specialists uses. Yes he also likes to add a lot of supplements and is very interested in all the gut problematics, but I don't think he's treating Lyme like it was nothing and only by pushing supplements.
I really hope you will find the right Doctor and treatment for your daughter.
Regards
David
Dear David,
I am delighted you are pleased,taken seriously, and getting help. How I wish this was our case! I am actually not angry. I'm disappointed, despondent, and feeling unable to know where to turn. Now he may be giving lots of supplements. At the time we saw him he was making a transition to treating Lyme. And he did not give lots of supplements at all. We went because of the gut. That was the reason. And the supplements were not new to us,had been used before. You know, I never disliked him, though he is cold as ice. He just wasn't interested in my daughter's case. Said very little to me, even though I went in alone once or twice and asked direct questions. The supplements I was referring to was other doctors. They shove supplements from their office like it was candy. No he takes Lyme seriously. I never said this, by the way. He was very serious, just nothing got done.
I will stop on this subject because it's buyer beware, and some people relate well with certain doctors. Perhaps he didn't like us. Who knows? Let me leave it that way for everyone's sake.
 

dadouv47

Senior Member
Messages
745
Location
Belgium
Dear David,
I am delighted you are pleased,taken seriously, and getting help. How I wish this was our case! I am actually not angry. I'm disappointed, despondent, and feeling unable to know where to turn. Now he may be giving lots of supplements. At the time we saw him he was making a transition to treating Lyme. And he did not give lots of supplements at all. We went because of the gut. That was the reason. And the supplements were not new to us,had been used before. You know, I never disliked him, though he is cold as ice. He just wasn't interested in my daughter's case. Said very little to me, even though I went in alone once or twice and asked direct questions. The supplements I was referring to was other doctors. They shove supplements from their office like it was candy. No he takes Lyme seriously. I never said this, by the way. He was very serious, just nothing got done.
I will stop on this subject because it's buyer beware, and some people relate well with certain doctors. Perhaps he didn't like us. Who knows? Let me leave it that way for everyone's sake.

Sorry if I misunderstood your point about the supplements!

I understand why u feel this way. I just went to my second consultation with him 2 weeks ago, and he spoke 3 sentences at best. My mother almost starts laughing because that looked surreal.

In my humble opinion, if he didn't treat well your daughter it wasn't because of not liking you or not being interested by her case. Maybe he didn't chose the appropriate treatment, made mistakes, or has his own limitations. I don't know.
Maybe my treatment will be a total disaster ( I'm optimistic but I have no clue). But he doesn't look to me like the kind of person that doesn't care about each individual health and he's treating CFS very seriously ( and that's probably why everything about him is so controversial, because he wants to go deeper than most doctors).

Anyway, I understand your anger. I had the same feeling about so many doctors. Hope I will get more luck with my treatment with him, and that your daughter will find the right Doctor for her. I'm sure there will be other opportunities, and she's blessed to have a mother so engaged to help her.
Keep fighting and good luck!
Regards,
David
 
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valentinelynx

Senior Member
Messages
1,310
Location
Tucson
I just went to my second consultation with him 2 weeks ago, and he spoke 3 sentences at best. My mother almost starts laughing because that looked surreal.

I got the impression watching interviews with KDM on "ME/CFS Alert" with Llewellyn King and Deborah Waroff that KDM is a very quiet, introverted guy. He struggled to answer interview questions with more than a few words. As an introvert myself, I know that this is often interpreted by others as being "aloof" or distant or even as if you are looking down on others, when that is rarely the case. I believe he is an intelligent, thoughtful man who struggles to express himself with others. As long as his diagnosis and treatment is intelligent and effective, I would prefer this to a showman personality who "sells" you on his treatments.

For example, check out this "video" by J Schaller, with the following caption: "Are you looking for a deeper and more personal relationship with your physician? Do you want a friendly, and highly aggressive academic leader with a passion for many areas of medicine, who personally invents and publishes new solutions internationally? Or do you want someone "trained" by drug reps or merely pharmaceutical company "education?"

Bleah! Maybe Schaller is great doctor - but his approach turns me off big time. No I don't want a "deeper and more personal relationship with my doctor!" Eww! :vomit:
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
check out this "video" by J Schaller
He even used one of those images for the "Chronic Fatigue patient."
images

Yes, KDM is probably an introvert and not one to initiate much conversation. But I have always found him very willing to answer all my questions and, once he gets to know you, he can be quite sociable. He has also gone way out of his way to help me with something on several occasions--way beyond what you would normally expect from your physician.