My Experience With Dr. Kaufman at the Open Medicine Institute

[Billt]

Bill please let me know how your trip went and then what you learn during your phone interview.

Jess

I will let you know Jess. Can't wait to get there and find out what is going on with son. !!

 

[jeff_w]

Here are the results of my phone conversation with Dr Kaufman...

Wow, Jess! Seems you are quite sick and did the right thing by seeking expert help. Again, I'm really glad you saw Dr. Kaufman, especially since you caught this before crashing.

Keep us posted on your progress!

 

[charlie1]

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.

This probably sounds ridiculously hopeful, but do you know if Dr. K will do initial consults on the phone (and then order tests) or is it just phone follow-ups that he does?

I remain careful and force myself to do much less than I want to.
Jeff, your willpower is something to be admired! I'm much better at pacing than I once was but not to the degree that you are. Way to go!!

 

[charlie1]

I just had my phone consult with Dr Kaufman and I'm impressed with how thorough he was in both his testing and explanations

yes!!! I just backed up further in the thread and saw this!!!

 

[jeff_w]

I remain careful and force myself to do much less than I want to.
Jeff, your willpower is something to be admired! I'm much better at pacing than I once was but not to the degree that you are. Way to go!!

Thank you, @charlie1 ! It's a daily battle, isn't it. Hopefully we can all learn from each other how to win these small battles everyday. That gives us the best chance of having the best life we can while fighting this damned disease.

 

[charlie1]

Heading to OMI next Thursday with my son

Wishing you and your son the very best tomorrow!

 

[Mary]

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.

Is your doctor in southern California by any remote slim chance?

 

[Misfit Toy]

@Mary - I wish...he is in Pennsylvania..Southeast.

 

[SOC]

This probably sounds ridiculously hopeful, but do you know if Dr. K will do initial consults on the phone (and then order tests) or is it just phone follow-ups that he does?

I believe it is the law in the US that a doctor cannot prescribe for you unless s/he sees you in person at least once a year. To the best of my knowledge, none of the US ME/CFS specialists will order tests or prescribe without first seeing you in person. After that, a number of them will work with you primarily by phone as long as you do the obligatory once a year pilgrimage to their office so they can lay eyes on you.

 

[charlie1]

ugh, I suppose that makes sense @SOC . Thanks for letting me know.

 

[Vasha]

Hi everyone - I hope it’s ok to introduce myself here. I don’t mean to hijack your thread, @jeff_w! I chose this thread because I also a patient of the excellent Dr. Kaufman and seem to have a profile similar to several of his patients, like @Gingergrrl and @jeff_w.

Please just let me know if it would be better to start a new thread, and I’ll do that.

Last week was my one-year anniversary of being diagnosed with ME/CFS. I had a bad bout with mono relatively late in life (mid-thirties-most people are exposed long before this) and never recovered. Over the course of a few years, I developed more and more neurological symptoms (like vertigo, headache, vomiting, dizziness, unsteadiness), fought with what I thought were all these “bugs” and now know is PEM, and could not stop losing weight, down to a BMI of 14. I’m an academic, and really love my work, so somehow I didn’t really realize how wrong things had gone until I was crashing so hard I couldn’t walk, falling in front of colleagues and students, etc. I thought it was all “just” constant migraine, and I think my GP thought it was stress. (<directed at both of us.) My family, friends, and colleagues, meanwhile, were expressing strong concern that something was really wrong.

I feel really lucky to have found OMI and Dr. Kaufman so soon into the diagnosis (if not the actual disease). If it’s useful to others, I would be glad to share any treatments I’m trying, what they are intended to address, and whether they help. I put some of the tests and medicines below, but don’t have the energy for detail right now. Sorry! I realized that I was never going to post if I waited until I was able to fully introduce myself.

Mostly, I wanted to thank you all for these forums. I’ve been lurking for awhile, and found a lot of help here. I’m kind of shy and private, and am often too sick to keep up, so it took me awhile to post. This is such a kind and thoughtful community that even lurking is supportive. And even when I can’t really follow what is being said because of the cognitive exhaustion, I can be impressed and grateful for the intelligence and courage here. Thank you!

And I really hope @Billt had a useful appointment with Dr. Kaufman—they are wonderful people at OMI.

- - - - - - -
I’m taking famvir, mast cell medicines (cromolyn, zyrtec, singulair), florinef, thyroid replacement, a calcium-channel blocker (for migraines), and some supplements.

I’ve been thinking of trying a ketogenic diet for some time and appreciate jeff_w’s posts about this. (After about a year of much effort and with the help from the mast cell medicines, I managed to gain enough to have an ok BMI, so this a possibility now.)

I’m basically housebound, and in bed a lot of the time. Haven’t figured out the pacing thing yet—wow is that hard—but I’m trying!

 

[jeff_w]

Thanks for stopping by and sharing, @Vasha. As far as keto and pacing, those two treatments combined have helped me immensely. Good luck with everything, and please chime in any time.

I'm also very curious about how @Billt and his son are doing now.

 

[Vasha]

Thanks for stopping by and sharing, @Vasha. As far as keto and pacing, those two treatments combined have helped me immensely. Good luck with everything, and please chime in any time.

Thanks so much @jeff_w (and @Sushi for her nice note when she moderated my message) and everyone for the likes. It sure helps you not feel alone! I pretty much emptied my battery with that post, but I'll be back. I'm going to try to at least "like" things when i can't post.

I'm also very curious about how @Billt and his son are doing now.

Yes, I hope his son did ok with the journey. Thinking of you, @Billt!

Thanks everyone!

 

[Vasha]

Umm. I messed that up - my reply to jeff_w is in the multiquote. Sorry! I'll figure it out....

 

[MeSci]

Welcome, @Vasha. I hope there are many people who, like you, have been gaining benefits from lurking, and that they also take the plunge and join in!

 

[Billt]

Hi guys !! made it back to New Orleans after the trip last week. As all who have seen Dr Kaufman, I was impressed with all he did. My mind is slow too , so I am trying to go over all notes and we did use the recorder so that should help. Dr Kaufman was super nice and didn't offer false hope but thought since son was young and only had this for apx a year that he stood a good chance of being able to help. I can't thank evryone on here enough for helping and sharing. Without your input we may have never found OMI. Vasha, your systoms sound so close to his, got EBV at 23 and can't get over it. It was an exhausting trip for us but we made it. Lots and lots of bloodwork. SIBO positve, so maybe meds will start helping that right away. He did take Famvir before for 8 months and didn't help. He has tried Valtrex but not for long ( didn't agree with him ) so Dr is doubling the Famvir for now and go from there. Also going to start LDN. Dr spoke about what he was looking for in the blood test but I need to go to the recorder for that. Nk cells I believe is one, also recheck the EBV ( thinks it is still active ). All I can remember at the moment but will follow up as I find more. We do phone follow up for now in a few weeks, so we should know more then. Dr Kaufman really took his time with us and was extremely knowledgeable and super nice. Really seems to care. So we at least have a direction to start in, which no Dr here would do !! Praying this is the start of him getting better... Jeff, Ginger , Jess , SOC , Charlie1 , and others.....
I can't thank you guys enough for sharing all your journeys ,, as I will do. Be Well... Bill

PS I am sure I missed alot. I will fill in as I can, and if any has any questions,, just ask ..

 

[Billt]

Hi everyone - I hope it’s ok to introduce myself here. I don’t mean to hijack your thread, @jeff_w! I chose this thread because I also a patient of the excellent Dr. Kaufman and seem to have a profile similar to several of his patients, like @Gingergrrl and @jeff_w.

Please just let me know if it would be better to start a new thread, and I’ll do that.

Last week was my one-year anniversary of being diagnosed with ME/CFS. I had a bad bout with mono relatively late in life (mid-thirties-most people are exposed long before this) and never recovered. Over the course of a few years, I developed more and more neurological symptoms (like vertigo, headache, vomiting, dizziness, unsteadiness), fought with what I thought were all these “bugs” and now know is PEM, and could not stop losing weight, down to a BMI of 14. I’m an academic, and really love my work, so somehow I didn’t really realize how wrong things had gone until I was crashing so hard I couldn’t walk, falling in front of colleagues and students, etc. I thought it was all “just” constant migraine, and I think my GP thought it was stress. (<directed at both of us.) My family, friends, and colleagues, meanwhile, were expressing strong concern that something was really wrong.

I feel really lucky to have found OMI and Dr. Kaufman so soon into the diagnosis (if not the actual disease). If it’s useful to others, I would be glad to share any treatments I’m trying, what they are intended to address, and whether they help. I put some of the tests and medicines below, but don’t have the energy for detail right now. Sorry! I realized that I was never going to post if I waited until I was able to fully introduce myself.

Mostly, I wanted to thank you all for these forums. I’ve been lurking for awhile, and found a lot of help here. I’m kind of shy and private, and am often too sick to keep up, so it took me awhile to post. This is such a kind and thoughtful community that even lurking is supportive. And even when I can’t really follow what is being said because of the cognitive exhaustion, I can be impressed and grateful for the intelligence and courage here. Thank you!

And I really hope @Billt had a useful appointment with Dr. Kaufman—they are wonderful people at OMI.

- - - - - - -
I’m taking famvir, mast cell medicines (cromolyn, zyrtec, singulair), florinef, thyroid replacement, a calcium-channel blocker (for migraines), and some supplements.

I’ve been thinking of trying a ketogenic diet for some time and appreciate jeff_w’s posts about this. (After about a year of much effort and with the help from the mast cell medicines, I managed to gain enough to have an ok BMI, so this a possibility now.)

I’m basically housebound, and in bed a lot of the time. Haven’t figured out the pacing thing yet—wow is that hard—but I’m trying!

Vasha, Lot's of info ,, thanks .. I should know more about my son after the phone follow up..

 

[Vasha]

Hi guys !! made it back to New Orleans after the trip last week. As all who have seen Dr Kaufman, I was impressed with all he did. .... Vasha, your systoms sound so close to his, got EBV at 23 and can't get over it. It was an exhausting trip for us but we made it. Lots and lots of bloodwork. SIBO positve, so maybe meds will start helping that right away. He did take Famvir before for 8 months and didn't help. He has tried Valtrex but not for long ( didn't agree with him ) so Dr is doubling the Famvir for now and go from there. . . .

PS I am sure I missed alot. I will fill in as I can, and if any has any questions,, just ask ..

Thanks for the update @Billt! I'm so glad that your trip was useful, and hope you all can recover well.
Dr. Kaufman told me that they are trying quite high doses of Famvir in appropriate cases - fingers crossed it will help your son. Treating SIBO can really help some people feel better, and I believe Dr. Kaufman thinks that it can help a great deal with malabsorption and intestinal permeability issues.

They do take a lot of blood, don't they? I can definitely say that it has been useful in understanding what is going on; hope it's the same for you!

 

[Vasha]

Welcome, @Vasha. I hope there are many people who, like you, have been gaining benefits from lurking, and that they also take the plunge and join in!

Thanks @MeSci!

 

[Billt]

Thanks for the update @Billt! I'm so glad that your trip was useful, and hope you all can recover well.
Dr. Kaufman told me that they are trying quite high doses of Famvir in appropriate cases - fingers crossed it will help your son. Treating SIBO can really help some people feel better, and I believe Dr. Kaufman thinks that it can help a great deal with malabsorption and intestinal permeability issues.

They do take a lot of blood, don't they? I can definitely say that it has been useful in understanding what is going on; hope it's the same for you!

Trying to understand, but alot of big words for me..lol working on learning about the SIBO this is all so new to me. But if we can get him on the right meds, then maybe other things will start to improve... Bill