Update on Dr Jon Kaiser

Swim15

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Ive been seeing Dr Kaiser for 6-8 months now and wanted to give a little update.

Initially I recommended him but I wouldn’t anymore after more time to evaluate.

He isn’t particularly cheap - less than some and more than others but more than a lot of the docs that Ive seen. Ive got a high expectation for all the physicians I see and even more so the cash pay docs whether or not that’s fair.

Ive had an extensive number of appointments with him and at this point I wish I could get my money back because he never ended up adding much to my care. My experience is that most of our appointment time is spent reviewing symptoms, changes in symptoms, lab work, or other pertinent items and then he throws in his thoughts the last 10min of the call, almost always seeming rushed to get on with the next patient. I ended up coming up with solutions that increased my health the majority of the time on my own.

I, like many people here, have a very complex case and I expect him to synthesize my symptoms and lab work into better thoughts in terms of causes and treatments. A lot of the recommendations he has made (which I can list some of below) are things that are pretty easily found online and things I already had done or heard of. The one good thing he did do was turn me on to the Geneva stool test but otherwise I think he doesn’t utilize lab work to even 1/10 of the amount he should.

Also unlike most docs I see (even my PCP who has a HUGE patient load) he won’t follow up with anything between appointments with you. All the other cash pay docs Ive seen will spend 15min exchanging weekly or biweekly emails regarding changes in symptoms, meds, labs, etc and he won’t do that which is really what got me. I expect a lot from my docs and I expect more from him with how much I’ve paid him. Ive got the cell phone numbers and emails of a number of other physicians I see and not one of them has ever told me I can’t contact them or should contact them less - I do try to be very respectful of their time though.

This tells me that he has taken on way too many patients as is per the norm with docs these days. One or two 15min email follow ups a month between appointments isn’t unreasonable in my opinion, especially for what he is getting paid, and that’s the primary thing that got me with him.


Most of his treatments or recommendations in my experience were
- rest/pacing
- 1 hour lie down pure rest periods per day to balance autonomic function
- meditation
- micronutrient supplementation
- huge focus on sleep which was very good
- use of some pharmaceuticals (although I was seriously surprised at his lack of knowledge with some) - stuff like mirtazapine, trazodone, seroquel, and low dose stimulants for appropriate patients (not me)
- hydrogen peroxide nebulization


Ive found much more benefit from treatments I did on my own like ozone therapy, FMT (understand he can’t recommend), and other things too numerous to list.

He is a very, very conservative doc and won’t push the envelope with hard cases unfortunately.


The other thing I didn’t love is that he pushes his KPAX supplements which are an overall multivitamin, micronutrient, multi mineral. A bottle runs $70 and he will advise a dose that runs you through 1-2 bottles a month when Life Extension has an identical product for $18 a bottle and an even more comprehensive product for $50 a bottle.


Overall I think he means well but I definitely expected a LOT more than what I got based on my experiences with numerous other physicians.
 

Judee

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Ive got a high expectation for all the physicians I see and even more so the cash pay docs whether or not that’s fair.
That's fair. Why shouldn't they be earning their pay too??

I ended up coming up with solutions that increased my health the majority of the time on my own.
Sounds like what happened with the doctor I went to for 11 years only bad part is towards the end he wasn't even coming up with his own but was also shooting down mine.

This tells me that he has taken on way too many patients as is per the norm with docs these days.
I think you're being too kind.

As my chiropractor said, some of these doctors become islands unto themselves...another reason why they aren't up on things.

My doctor of 11 years got very very comfortable with just being an in-office consultant. All he wanted to do is sit in the chair and consult. Even asking him to listen to my Mom's lungs or look down her throat (she had COPD) seemed an inconvenience to him. He had a hard time even finding his stethoscope.

The other thing I didn’t love is that he pushes his KPAX supplements
Some of the supplements my doctor pushed had ingredients he had in his file that I was allergic to. And I, like a dope, just blindly went along, paid, and walked out the door with them. Yikes.

Thanks for the update, @Swim15. You likely saved someone here a lot of headaches.
 

hapl808

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Thanks for the information.

I tried KPAX when I was deciding on whether to see Dr Kaiser. I found no particular benefit, and like you said it seemed rather expensive for nothing particularly unusual.

I had one phone conversation with him when I was still on the fence, but basically felt he was like most of these doctors - they have a very limited number of things to try, and the extensive testing doesn't seem to really inform their treatment protocols or have actionable information. It just validates what they already want to do.

Their time is clearly limited, their knowledge is narrow, and the only thing they have in abundance is confidence that they will help you. All of the doctors I've seen have that absolute confidence despite all evidence to the contrary (most of whom did zero for me or a couple who did significant damage). Eventually when they tire of us not improving, their willingness to see us declines but their confidence is never shaken.

Disappointing, though, that someone so heralded in a difficult field wasn't more helpful. You'd think if these people just listened to their patients they'd have more helpful treatments anecdotally. But we know they don't listen anyways.
 

Judee

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All of the doctors I've seen have that absolute confidence despite all evidence to the contrary (most of whom did zero for me or a couple who did significant damage). Eventually when they tire of us not improving, their willingness to see us declines but their confidence is never shaken.

Disappointing, though, that someone so heralded in a difficult field wasn't more helpful. You'd think if these people just listened to their patients they'd have more helpful treatments anecdotally. But we know they don't listen anyways.
Wow, do you absolutely have them pegged. This is exactly it.

Maybe a good litmus test for any of us when looking for these doctors and/or interviewing them is that over confidence.

If they have that, run the other way!!!! (Er...have your caregiver roll you out the door fast.)

It would be so much better to find a doctor who says he just doesn't know but is willing to try.
 

Swim15

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Swim didn’t you get a new diagnosis of Wilson’s disease? How is everything going?
That I did and it’s been an interesting ride.

Still have a lot of other fucked up things in tandem (hormonal, adrenal, and some TBD). I know it’s all related but I’m actually functional now for basic life stuff. Supposed to start medical school this summer and that’s a little iffy but I think I’ll be alright if things continue progressing the way they have.

Not to push religion or anything but really believe it was a God thing with how everything has worked out.

Otherwise right now Ive got high cortisol, low progesterone, low 17OH progesterone, lower DHEA, little high prolactin, and 100% zero tolerance to any HRT so I’ve got no test/estrogen other than what’s converting from the steroid pathway.

Otherwise fell good 😂
 

Swim15

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Oh and copper toxic obviously lol but on chelation for a couple months now.

If I make it through med school I’ll come back and treat some of you guys for free or ultra low cost and put up any/all info I use for free on the forum
 

Wishful

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Swim15

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if I’m reading right then all that study says is that supplements didn’t seem to highly impact quality of life for ME/CFS patients…considering that those with true ME/CFS seem to get little relief from anything, that’s not surprising.

Im not bashing either way but I do think specific micronutrient supplementation can make enormous, sometimes life changing, differences for some people. given that ME/CFS is very broad, really comes down to the person and situation though
 

Wishful

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Im not bashing either way but I do think specific micronutrient supplementation can make enormous, sometimes life changing, differences for some people. given that ME/CFS is very broad, really comes down to the person and situation though
Yes, we're all different in what our ME responds to, so one particular micronutrient could make a big difference for someone. What I get from that paper is that in general, we shouldn't expect that taking nutrient supplements--especially expensive ones--for an indefinite length of time is going to help simply because 'supplemental nutrients are good for us'.

I tried a multivitamin/mineral supplement. Something in it helped me. By experimentation I found that it was iodine, and that only worked well the first few times I tried it (later experimentation found a longer-term benefit). I also found that B2 and B3 made my symptoms worse, so I didn't bother taking multivitamins anymore. I didn't notice any benefits from supplementing the other vitamins and minerals.
 

Swim15

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I’ll also add that he prescribed me mirtazapine and I had some very strong/strange reactions to it. He told me on follow up that he uses it often and has never had anyone respond like that. I talked to my psychiatrist and she said what I described was incredibly common.

Even worse, on further discussion with him, he didn’t know the full MOA of mirtazapine which scared me seeing as I had only been seeing him a month or so. Should have been my clue. I’m not a doc and I knew the mechanism forwards and backwards.

I was also surprised of his complete aversion to ozone and HBOT when I had amazing results from ozone - probably the 2nd best of anything I had done at the time. Lot of people here have great results as well.

Anyways, hopefully this review was helpful and if anyone has any further specific questions I’ll answer as best I can.
 

Swim15

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What are Dr. Kaiser's views on antivirals?
He isn’t a fan. Not to say that I don’t think he wouldn’t use them if warranted but there would have to be strong evidence they are warranted.

That said, he wasn’t familiar with oxymatrine and protocols for Coxsackie and other non cytolytic infections which I found interesting. That said, I think it probably is a minority of cases in general
 

Learner1

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All the other cash pay docs Ive seen will spend 15min exchanging weekly or biweekly emails regarding changes in symptoms, meds, labs, etc and he won’t do that which is really what got me. I expect a lot from my docs and I expect more from him with how much I’ve paid him. Ive got the cell phone numbers and emails of a number of other physicians I see and not one of them has ever told me I can’t contact them or should contact them less - I do try to be very respectful of their time though.
One or two 15min email follow ups a month between appointments isn’t unreasonable in my opinion, especially for what he is getting paid, and that’s the primary thing that got me with him.
I think your expectations might be a bit unrealistic. Doctors who have a lot of complex patients are generally challenged trying to help all of us. I know my specialist has hospitalized other patients, referred for surgery and is helping patients get access to expensive treatments. If I have a crisis, I know he'll be there for me, and he has been. But generally, I try not to bother him outside of appointments unless there is something major to share or a critical questions l or need
The other thing I didn’t love is that he pushes his KPAX supplements which are an overall multivitamin, micronutrient, multi mineral. A bottle runs $70 and he will advise a dose that runs you through 1-2 bottles a month when Life Extension has an identical product for $18 a bottle and an even more comprehensive product for $50 a bottle
I looked over the KPAX supplements, which are an arbitrary mix of ingredients. A couple of the ingredients, pyridoxine HCl (instead of P5P which is better) and iron, would cause me harm and some of the ingredients were in such low quantities to be useless. It's always best to test for nutrient needs and supplement accordingly, otherwise, one runs the risk of unintended consequences.
Their time is clearly limited, their knowledge is narrow, and the only thing they have in abundance is confidence that they will help you. All of the doctors I've seen have that absolute confidence despite all evidence to the contrary (most of whom did zero for me or a couple who did significant damage). Eventually when they tire of us not improving, their willingness to see us declines but their confidence is never shaken.
It would be so much better to find a doctor who says he just doesn't know but is willing to try.
Very few doctors I've seen lately have the confidence to know how to help me. With a complex case, it's far more community n for doctors to candidly say they don't know how to help. Anyone who says they know all the answers is sadly mistaken.
This paper might help people decide whether a fancy supplement is worthwhile: https://forums.phoenixrising.me/thr...on-health-related-quality-of-life-2021.84261/

"No consistent trends between nutrition and supplement use with patients’ HRQoL could be identified."
That is not exactly what the conclusion of that paper was. It stated that ME/CFS patients found value in using their supplements.
What I get from that paper is that in general, we shouldn't expect that taking nutrient supplements--especially expensive ones--for an indefinite length of time is going to help simply because 'supplemental nutrients are good for us'.
It's far more useful to do comprehensive nutrient testing to determine what one's nutrient needs are, to ensure one is not overdosing on something that could lead to unfortunate consequences, or not getting enough of certain cofactors to get the most out of the supplements. Prescribing supplements should ideally relate to pathways that need support in order to make the body function better. It's inappropriate to take a nutrient like one does an aspirin...
I was also surprised of his complete aversion to ozone and HBOT when I had amazing results from ozone - probably the 2nd best of anything I had done at the time. Lot of people here have great results as well.
There is some good evidence for hyperbaric oxygen and other oxygen therapies. Perhaps if he wandered down highway 101 a few exits, he could talk to Robert Rowan and learn about oxygen therapies.
He isn’t a fan. Not to say that I don’t think he wouldn’t use them if warranted but there would have to be strong evidence they are warranted.
Like a lab test? Maybe PCR or antibodies? There are many infections that have been linked to ME/CFS. They're not the same in all of us, but individualizing testing and treatment to the patient is entirely appropriate.

Have you thought about going to the Center for Complex Diseases?
 

Mary

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@Swim15 - thanks for your update. I used to have faith that some doctors knew what they were doing, but that's mostly gone out the window. I think some doctors can help for very specific conditions, but I think the patient has to know going in what they're dealing with and educate the doctor about it and know the right questions to ask - in order to get any sort of help.

I was talking to my brother tonight and he was telling me how he'd started going to a gym and using a treadmill for about an hour each morning - and his energy increased a lot! I was stunned. I thought this was a myth. It's been so many years since exercise has been my friend. Anyways, Dr. Kaiser very well might be able to help someone like my brother, who I think any one of us here could help out - he just does need to eat right, exericse, etc., which he's not doing. It's simple.

I think for many of these doctors if they have ordinary people coming to them, then Kpax very well might help them (it never helped me and was overpriced too!) and the docs might be able to help.

But no doctor that i can find knows what to do about ME/CFS. Some doctors are knowledgeable about specific things like POTS, but I think the patient has to know going in that that's their issue, so they know to ask the proper questions and ask for the right testing and medication if applicable. But if one walks in with no knowledge of what's going on, I think chances are they will know very little more walking out.
 
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I was also surprised of his complete aversion to ozone and HBOT when I had amazing results from ozone - probably the 2nd best of anything I had done at the time. Lot of people here have great results as well.
Hi @Swim16. Would you be able to say more about the ozone please? Or maybe you've posted about it elsewhere on PR? Best of luck with your continuing education! 👍🙂
 

Swim15

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Hi @Swim16. Would you be able to say more about the ozone please? Or maybe you've posted about it elsewhere on PR? Best of luck with your continuing education! 👍🙂
Ive got set ups at home for IV ozone but I have ulcerative colitis and have primarily just done rectal insufflation ozone treatments. One of the better things for UC, IME