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My Experience With Dr. Kaufman at the Open Medicine Institute

Billt

Senior Member
Messages
289
Location
New Orleans
@Billt you have to request the SIBO test in advance and it will not be automatically done. They would order the kit and email you instructions for your son to follow the week and day before Re: dietary and other directions to ensure the results are valid. You can call to request it for your son and I am sure it would not be too late.
Thanks Ginger, I will call them today and order it. Don't want to go all that way and them not be able to do a test... Will report back on how we do... Bill
 

jeff_w

Senior Member
Messages
558
Brief Update
I've decided to update this thread with my health progress once a month, figuring that the experience of one person who is being helped by Dr. Kaufman is pretty relevant.

I'm continuing to improve and can now go for slow 8 minute walks without any payback! Any walk longer than 8 minutes leaves me very tired for over an hour (yet still doesn't trigger PEM beyond an hour or two). I'm very careful to not raise my heart rate when walking and am happy to report that slow walks have turned out to be nothing like the awful "pushups experiment" of a few months ago! I seem to gain energy and health from this, and I walk about 3 times per week. I probably could do more, but I'm keeping it light on purpose.

Interestingly, during the time that I was bedridden, I gained quite a bit of muscle mass. This was probably due to a surplus of calories from inactivity, and those calories went straight to my muscles (this is the only good ME/CFS side effect I've had!). Anyway, after the first few walks, my leg and back and abdomen muscles were sore for days. So, even though my muscles had gained in size, apparently they had become weaker, as well.

I'm still on the ketogenic diet, and my supplement and medication schedules have stayed the same. Aside from my walks, I remain pretty inactive. I still can get PEM from overdoing it on the computer or from several brief outings in one day, so I remain careful and force myself to do much less than I want to. Still, the overall trend is steady improvement, and I might even be able to go back to grad school half time in September.

That's all for now!
 
Last edited:
Messages
15
Location
Southwest
Brief Update
I've decided to update this thread with my health progress once a month, figuring that the experience of one person who is being helped by Dr. Kaufman is pretty relevant.

I'm continuing to improve and can now go for slow 8 minute walks without any payback! Any walk longer than 8 minutes leaves me very tired for over an hour (yet still doesn't trigger PEM beyond an hour or two). I'm very careful to not raise my heart rate when walking and am happy to report that slow walks have turned out to be nothing like the awful "pushups experiment" of a few months ago! I seem to gain energy and health from this, and I walk about 3 times per week. I probably could do more, but I'm keeping it light on purpose.

Interestingly, during the time that I was bedridden, I gained quite a bit of muscle mass. This was probably due to a surplus of calories from inactivity, and those calories went straight to my muscles (this is the only good ME/CFS side effect I've had!). Anyway, after the first few walks, my leg and back and abdomen muscles were sore for days. So, even though my muscles had gained in size, apparently they had become weaker, as well.

I'm still on the ketogenic diet, and my supplement and medication schedules have stayed the same. Aside from my walks, I remain pretty inactive. I still can get PEM from overdoing it on the computer or from several brief outings in one day, so I remain careful and force myself to do much less than I want to. Still, the overall trend is steady improvement, and I might even be able to go back to grad school half time in September.

That's all for now!


I'm so happy to hear about your progress and hope for your future. I'm in AZ and at the point in my LTD timeline where my employer is requiring a specialist - not the PCP who finally diagnosed me with SEID after viewing all other soecialist records where they found nothing to explain why I still can't function. I'm thinking of going to Dr Kaufman after a very nice and knowledgeable person referred him to me and your posts have been a huge help in giving more info about your experiences w him. Can I ask you if you think he would require a person from out of state to return repeatedly in person or does he do phone followups? And do you know if he is amenable to filling out LTD forms explaining why I'm still unable to work? Provided his tests reveal something he feels would explain that? Thank you again for taking the time to post and I hope you are having another better day today
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Brief Update
I've decided to update this thread with my health progress once a month, figuring that the experience of one person who is being helped by Dr. Kaufman is pretty relevant.

I'm continuing to improve and can now go for slow 8 minute walks without any payback! Any walk longer than 8 minutes leaves me very tired for over an hour (yet still doesn't trigger PEM beyond an hour or two). I'm very careful to not raise my heart rate when walking and am happy to report that slow walks have turned out to be nothing like the awful "pushups experiment" of a few months ago! I seem to gain energy and health from this, and I walk about 3 times per week. I probably could do more, but I'm keeping it light on purpose.

Interestingly, during the time that I was bedridden, I gained quite a bit of muscle mass. This was probably due to a surplus of calories from inactivity, and those calories went straight to my muscles (this is the only good ME/CFS side effect I've had!). Anyway, after the first few walks, my leg and back and abdomen muscles were sore for days. So, even though my muscles had gained in size, apparently they had become weaker, as well.

I'm still on the ketogenic diet, and my supplement and medication schedules have stayed the same. Aside from my walks, I remain pretty inactive. I still can get PEM from overdoing it on the computer or from several brief outings in one day, so I remain careful and force myself to do much less than I want to. Still, the overall trend is steady improvement, and I might even be able to go back to grad school half time in September.

That's all for now!

I'm very pleased to hear that you are doing well thanks to help from a good doctor, but just wondered whether you could clarify what you mean by "still doesn't trigger PEM beyond an hour or two." It sounds as though you are talking about fatigue or malaise that starts immediately after exertion rather than the PEM that is delayed by hours at least and usually a day or more.

Have I misunderstood?

Sorry if it's explained elsewhere in the thread - I haven't read it all yet.

EDIT - have just found in another of your posts here that you say "I also had NO PEM the next day." I NEVER get PEM the next day - I usually feel particularly well the day after exertion. It's about 2-3 days later that my PEM hits.
 
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jeff_w

Senior Member
Messages
558
I'm so happy to hear about your progress and hope for your future. I'm thinking of going to Dr Kaufman after a very nice and knowledgeable person referred him to me and your posts have been a huge help in giving more info about your experiences w him. Can I ask you if you think he would require a person from out of state to return repeatedly in person or does he do phone followups? And do you know if he is amenable to filling out LTD forms explaining why I'm still unable to work? Thank you again for taking the time to post and I hope you are having another better day today

Hi @nenej2015 -

Thanks for your kind words!

Dr. Kaufman is excellent, and he will follow up by phone with people who need it (due to distance, extreme illness, etc.). Last I checked, his phone rates are $100 less than his in-person rates. He was also very amenable to filling out disability forms for me and others, so he will very likely help you with that.

Good luck!
 

jeff_w

Senior Member
Messages
558
I'm very pleased to hear that you are doing well thanks to help from a good doctor, but just wondered whether you could clarify what you mean by "still doesn't trigger PEM beyond an hour or two." It sounds as though you are talking about fatigue or malaise that starts immediately after exertion rather than the PEM that is delayed by hours at least and usually a day or more.

Have I misunderstood?

Sorry if it's explained elsewhere in the thread - I haven't read it all yet.

Hi @MeSci -

My PEM usually hits me in two forms: Immediate and delayed. "Delayed," for me, is generally the next day. If the PEM is particularly bad, however, it will last 48 hours or more. I haven't had bad PEM in a long time, thanks to pacing.

It's very interesting to me how PEM hits people differently, in terms of timing. For some, it hits the next day or two. For others, it can be delayed by 10 days (from what I've read on here). Fascinating.
 
Messages
15
Location
Southwest
Hi @nenej2015 -

Thanks for your kind words!

Dr. Kaufman is excellent, and he will follow up by phone with people who need it (due to distance, extreme illness, etc.). Last I checked, his phone rates are $100 less than his in-person rates. He was also very amenable to filling out disability forms for me and others, so he will very likely help you with that.

Good luck!


Thanks tons for that info;) I called and made appointment with kaufman today for July 20 and now will sleep easier with info you just gave. I've
Been told not to come right out and ask drs first thing if they are willing to take over ltd forms from prior docs who tried all in their fields on me but incapacitation remains so I never know how to approach that issue when I really do need to know if they are ok with that. Hearing about your progress has brightened my days this week and given me hope thanks again and have a good night -
 
Messages
15
Location
Southwest
Thanks tons for that info;) I called and made appointment with kaufman today for July 20 and now will sleep easier with info you just gave. I've
Been told not to come right out and ask drs first thing if they are willing to take over ltd forms from prior docs who tried all in their fields on me but incapacitation remains so I never know how to approach that issue when I really do need to know if they are ok with that. Hearing about your progress has brightened my days this week and given me hope thanks again and have a good night -
I've apparently lost my ability to punctuate lol. Sorry for the massive run-on sentence
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Hi @MeSci -

My PEM usually hits me in two forms: Immediate and delayed. "Delayed," for me, is generally the next day. If the PEM is particularly bad, however, it will last 48 hours or more. I haven't had bad PEM in a long time, thanks to pacing.

It's very interesting to me how PEM hits people differently, in terms of timing. For some, it hits the next day or two. For others, it can be delayed by 10 days (from what I've read on here). Fascinating.

I only get some muscle pain, sometimes shortness of breath and/or brain fog immediately after exertion, which is short-lived, but my delayed PEM features symptoms like those of flu and hangovers, and I suspect is caused by the same things - dehydration and mineral deficiency.

I only think of the delayed symptoms as PEM. There are some interesting threads on PEM and how it varies between people, and how it varies in individual patients according to varying severity. I find that mine is more delayed when I am relatively well, and the PEM is milder too, but some people report the reverse association - PEM coming sooner when they are more well. As you say, fascinating, and I hope someone is researching the biochemistry thoroughly as it might reveal important details.

Here is one of the threads on PEM.
 

jess100

Senior Member
Messages
149
Brief Update
I've decided to update this thread with my health progress once a month, figuring that the experience of one person who is being helped by Dr. Kaufman is pretty relevant.

I'm continuing to improve and can now go for slow 8 minute walks without any payback! Any walk longer than 8 minutes leaves me very tired for over an hour (yet still doesn't trigger PEM beyond an hour or two). I'm very careful to not raise my heart rate when walking and am happy to report that slow walks have turned out to be nothing like the awful "pushups experiment" of a few months ago! I seem to gain energy and health from this, and I walk about 3 times per week. I probably could do more, but I'm keeping it light on purpose.

Interestingly, during the time that I was bedridden, I gained quite a bit of muscle mass. This was probably due to a surplus of calories from inactivity, and those calories went straight to my muscles (this is the only good ME/CFS side effect I've had!). Anyway, after the first few walks, my leg and back and abdomen muscles were sore for days. So, even though my muscles had gained in size, apparently they had become weaker, as well.

I'm still on the ketogenic diet, and my supplement and medication schedules have stayed the same. Aside from my walks, I remain pretty inactive. I still can get PEM from overdoing it on the computer or from several brief outings in one day, so I remain careful and force myself to do much less than I want to. Still, the overall trend is steady improvement, and I might even be able to go back to grad school half time in September.

That's all for now!
Jeff I'm so happy to hear you are progressing steadily toward health even if it feels slow to you. I can't thank you enough for recommending OMI here on the forum. I just had my phone consult with Dr Kaufman and I'm impressed with how thorough he was in both his testing and explanations
Jess
 

jeff_w

Senior Member
Messages
558
Jeff I'm so happy to hear you are progressing steadily toward health even if it feels slow to you. I can't thank you enough for recommending OMI here on the forum. I just had my phone consult with Dr Kaufman and I'm impressed with how thorough he was in both his testing and explanations
Jess

Hello @jess100

I'm very glad to hear that you're in great hands! I remember our first conversation months ago, which made me hope that you'd go to the OMI as soon as you could. It's great that this happened

If you're comfortable sharing, what were your diagnoses and test results?
 

SOC

Senior Member
Messages
7,849
I only get some muscle pain, sometimes shortness of breath and/or brain fog immediately after exertion, which is short-lived, but my delayed PEM features symptoms like those of flu and hangovers, and I suspect is caused by the same things - dehydration and mineral deficiency.

I only think of the delayed symptoms as PEM.

I agree with you on that.

Since many of us have OI (and the associated exercise intolerance) along with ME, I suspect that some of us are confusing exercise intolerance with PEM. It's probably somewhat moot which is which when you have both immediate difficulties as a result of exercise intolerance and delayed difficulties from PEM. OTOH, if we want the rest of the world to understand that PEM is not just exercise intolerance, maybe we should be more cautious in making the distinction ourselves.

PEM (as far as we know so far) is unique to ME/CFS. Exercise intolerance is a symptom of a number of different conditions (including some cases of ME/CFS). Exercise intolerance can be improved in many cases with certain exercises and/or medications. PEM not so much. When we conflate the PEM and exercise intolerance, we lead people to think that therapies for exercise intolerance will work for ME/CFS PEM, which they don't.
 
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jeff_w

Senior Member
Messages
558
Heading to OMI next Thursday with my son. Getting close.. So hopeful and nervous. Have most questions written down but hope I don't forget any ... Will let ya'll know how we do. Thanks for all the support... Bill
Best of luck! Your son will be in great hands. Please keep us posted on how the appointment goes.
 

jess100

Senior Member
Messages
149
Hi everyone,

Here are the results of my phone conversation with Dr Kaufman. I'm working from my notes so I hope it's clear
VCA and
Nuclear EBNA =both above 5.5 (test stops at 5.5 so not sure how much higher it would have gone)
Early antigen 2.77 (he said "quite high-evidence of mono")
Natural Killer cells 7
Vitamin D is "terrible" at 20 (normal is 30 to 125)
Babesia-low positive -sending blood to another lab for re-test
Bartonella -negative sending to another lab for re-test
(although I've had cat scratch fever in past-so one of these should be positive)
Lyme -negative
CMV 3.49 (normal positive is 1.10)
HHV6 -not high
Herpes 1-positive
Mtfr mutation-blocks folate and B12

Thyroid readings "not easy to explain" bc TSH is normal but T3 and T4 are low-normal. I don't have autoimmune thyroid problems. HPA is not working correctly but I prob can't explain this in a post.
H1AC- 6.2 (need to lose weight)
SIBO -Very positive-spiked at 100 at 75 mins.

So to recap (if I understood everything)
I have mono, CMV and Herpes 1. Might have some tick borne viruses (bacteria?) when blood is re-tested by Igenex
Very low vitamin D
SIBO
I have some thyroid issues-and Mtfr mutation.

I will be getting some antibiotics (Valtrex or Famcir) and B-12 and folate when back in the US. Already got vitamin D (5000 IU)

Was told I might benefit from thyroid meds but I'd like to try all the other things and if thyroid (or low energy) is still a problem then go for thyroid meds. Seems to me I should clear up the other things first.

Oddly I don't have an ongoing fever like Jeff had-although I have mono.

I hope this is helpful to someone-I can check my lab results if there are questions.

Overall my experience with Dr Kaufman was amazing. I'm now wondering why no other doctors bothered to test me for Lyme, bartonella, babesia, CMV, mono.....I feel like I'm due a refund

Jess
 

jess100

Senior Member
Messages
149
Heading to OMI next Thursday with my son. Getting close.. So hopeful and nervous. Have most questions written down but hope I don't forget any ... Will let ya'll know how we do. Thanks for all the support... Bill
Bill please let me know how your trip went and then what you learn during your phone interview.

Jess
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I am so glad that my physician, who is not one of the experts, but treats CFS tested me for all of the things that were written above that Jess had done. Every single thing. And...he takes medicare! WOO HOO.

The only caveat is that he doesn't have a lot of time with me, but I can get all of those tests and he had CFS so he is most interested in it.
 

Billt

Senior Member
Messages
289
Location
New Orleans
Hi everyone,

Here are the results of my phone conversation with Dr Kaufman. I'm working from my notes so I hope it's clear
VCA and
Nuclear EBNA =both above 5.5 (test stops at 5.5 so not sure how much higher it would have gone)
Early antigen 2.77 (he said "quite high-evidence of mono")
Natural Killer cells 7
Vitamin D is "terrible" at 20 (normal is 30 to 125)
Babesia-low positive -sending blood to another lab for re-test
Bartonella -negative sending to another lab for re-test
(although I've had cat scratch fever in past-so one of these should be positive)
Lyme -negative
CMV 3.49 (normal positive is 1.10)
HHV6 -not high
Herpes 1-positive
Mtfr mutation-blocks folate and B12

Thyroid readings "not easy to explain" bc TSH is normal but T3 and T4 are low-normal. I don't have autoimmune thyroid problems. HPA is not working correctly but I prob can't explain this in a post.
H1AC- 6.2 (need to lose weight)
SIBO -Very positive-spiked at 100 at 75 mins.

So to recap (if I understood everything)
I have mono, CMV and Herpes 1. Might have some tick borne viruses (bacteria?) when blood is re-tested by Igenex
Very low vitamin D
SIBO
I have some thyroid issues-and Mtfr mutation.

I will be getting some antibiotics (Valtrex or Famcir) and B-12 and folate when back in the US. Already got vitamin D (5000 IU)

Was told I might benefit from thyroid meds but I'd like to try all the other things and if thyroid (or low energy) is still a problem then go for thyroid meds. Seems to me I should clear up the other things first.

Oddly I don't have an ongoing fever like Jeff had-although I have mono.

I hope this is helpful to someone-I can check my lab results if there are questions.

Overall my experience with Dr Kaufman was amazing. I'm now wondering why no other doctors bothered to test me for Lyme, bartonella, babesia, CMV, mono.....I feel like I'm due a refund

Jess
Thanks for the update Jess. Hope this starts you on your way to better health. You do need to know what you have before you can treat it, so now you can start on the right meds. Sounds like you have a few things going on there. I will be in touch after our appointment... Bill