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Fatigue Doctor Recommendation: Dr. Jon Kaiser (based in CA, does telehealth sessions nationwide)

Messages
63
I've received compassionate, intelligent, and responsible care for my ME/CFS symptoms from Dr. Jon Kaiser.

https://www.jonkaiser.com/

He is an integrative medicine specialist with expertise treating patients with fatigue diseases including ME/CFS, Fibromyalgia, immune system disorders, GI issues, etc. He has a long history of treating AIDS/HIV patients and created some very important supplements under the brand KPAX. I believe he's still affiliated with UC San Francisco, and UCSF is one of the best med schools in the country. Just as importantly, he himself has had ME/CFS and went through his own journey, so he gets what a patient is going through. I value empathy in my doctors immensely, and he has plenty. He's also efficient, so he keeps me on track in sessions.

In the last 5 months or so he's ordered a whole lot of blood work and reviewed it with me, ordered a parasite stool sample test to evaluate gut health, advised on my diet changes, guided me on supplements, and most recently we got a mycotoxin test done, which took some maneuvering since I'm in NY and only one lab--Real Time--is able to do this test for patients based in NY (due to FDA restrictions).

Long story short, we've uncovered the contributing factors to my ME/CFS symptoms and they are #1 mold toxicity (my scores are through the roof, it's a bit scary) and extreme stress from the workplace, which triggered my ME/CFS symptoms. While we're not saying there could be other factors at play--I have a complex bill of health--these are the focal points for me.

Dr. Kaiser comes with a cost and I don't think he accepts insurance but I would recommend him, even if just for a few sessions to get on a path and to check in every now and then. I know most of us are going our own way but I wanted to share my experience.

He's based in CA but treats via video/tele sessions.

(This is coming from me, a patient. I'm not incentivized in any way to post this).

Is there an area of this site to add Dr. Kaiser to the list of fatigue specialists? I'm not sure if he's listed already.
 
Last edited:

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Is there an area of this site to add Dr. Kaiser to the list of fatigue specialists? I'm not sure if he's listed already.

I couldn't find any list of doctors, but if you change the title of this thread to "San Francisco, California: Dr. Jon Kaiser" then I think people will be better able to find your helpful recommendation.

Hope this helps.
 

hapl808

Senior Member
Messages
2,052
I've received compassionate, intelligent, and responsible care for my ME/CFS symptoms from Dr. Jon Kaiser.

Dr. Kaiser comes with a cost and I don't think he accepts insurance but I would recommend him, even if just for a few sessions to get on a path and to check in every now and then. I know most of us are going our own way but I wanted to share my experience.

He's based in CA but treats via video/tele sessions.

(This is coming from me, a patient. I'm not incentivized in any way to post this).

Is there an area of this site to add Dr. Kaiser to the list of fatigue specialists? I'm not sure if he's listed already.

How are you doing at the moment? I've been considering seeing him, but I can't do much blood work as it tends to crash me for months when I get it done (and the pandemic also makes it harder). Are there any particular treatments that he uses that have helped you?
 

Swim15

Senior Member
Messages
369
I'm seeing him as well. Definitely an interesting guy. Several sessions in and don't have enough to really form a full opinion...he has missed the ball on a few fairly important things which is concerning to me but I'm going to give it a little more time.

By the way - that K-Pax supplement is incredibly over priced. You can buy the Life Extension Mix (360 count bottle @ 12 capsules daily) which has everything K-Pax does and a lot more for less money at about $50 a month
 

bensmith

Senior Member
Messages
1,547
Hm handed heard abour blood draws crashing. Today would be my first after coming down with cfs. Giving me second thiughts.
 

hapl808

Senior Member
Messages
2,052
Crashing after blood draws? That’s pretty strange.

Are you anemic? @hapl808

I'm not anemic (or at least haven't been in the past - haven't tested iron levels in a year or two) and I still eat red meat. I don't think it has to do with anemia, because the amount of blood drawn in even a few vials is miniscule.

My rheumatologist thinks my body is just reacting as if it were under attack. It feels very similar to the kind of hypovolemic shock after a car accident or injury. I had the same feeling in the past when I sprained an ankle badly - almost passed out even though it wasn't that painful. I haven't tried taking blood pressure after a blood draw but might try it next time - I would think that might verify hypovolemic shock?

It makes it very difficult because even one vial of blood takes me a few days to recover, and more than that can cause a complete ME crash. And it's just one more symptom that's hard to talk about because medical professionals start to think you're crazy, which most already do.

Last major blood draw I warned them about my condition but they just brushed it off (probably assuming it was normal syncope even though I said it wasn't). After the draw (more vials than usual) I started convulsing and my body temperature started dropping - they were preparing an ER transfer when it finally stabilized. Heat packs and drinking hot water seemed to help but it took about an hour before I could finally stand up.

I don't seem to have major POTS normally, although my current (multi-year) crash makes my legs so week that I can't stand unaided for very long anyways. My blood pressure is usually pretty good but I have constant tachycardia. And as you all know, the list of symptoms goes on.

Thanks.
 

hapl808

Senior Member
Messages
2,052
I'm seeing him as well. Definitely an interesting guy. Several sessions in and don't have enough to really form a full opinion...he has missed the ball on a few fairly important things which is concerning to me but I'm going to give it a little more time.

By the way - that K-Pax supplement is incredibly over priced. You can buy the Life Extension Mix (360 count bottle @ 12 capsules daily) which has everything K-Pax does and a lot more for less money at about $50 a month

Thanks for the info - I coincidentally bought the Life Extension Two Per Day recently. Is the Mix different? I also have the K-Pax Immune product that I tried. Honestly didn't really notice much of a difference with it, but didn't take it for that long (I bought a smaller bottle).
 

hapl808

Senior Member
Messages
2,052
If you have low blood volume and a big draw, that can do it.

It can happen even with a couple vials - that's likely 15ml to 20ml of blood. Seems like that would be too little to affect blood volume? That's not the approx 500ml of blood people give when they donate (I've obviously never done that). Before my most recent crash, blood draws still affected me but not nearly as badly. Seems pretty closely tied to my current ME status.