My Experience With Dr. Kaufman at the Open Medicine Institute

[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 ..

Hi all, just wanted to update a little more with what meds we are going to start with. Still have a few weeks before phone follow up and bloodwork results but Dr Kaufman is starting him off with 1000 mg Famvir 2x a day , LDN starting at 1.5 and working up and Xifaxan 3 x a day for the SIBO. Hope he can tolerate all this. Will let ya'll know how he does ... !!!! Be Well.... Bill

 

[SOC]

Hi all, just wanted to update a little more with what meds we are going to start with. Still have a few weeks before phone follow up and bloodwork results but Dr Kaufman is starting him off with 1000 mg Famvir 2x a day , LDN starting at 1.5 and working up and Xifaxan 3 x a day for the SIBO. Hope he can tolerate all this. Will let ya'll know how he does ... !!!! Be Well.... Bill

Looks like a good start! It will take a few weeks to adjust to those meds/doses, and then your son will be ready for the next treatments Dr Kaufman will likely add based on the new data.

I see nothing related to OI treatment. Does your son not have OI symptoms?

Good luck! Keep us posted.

 

[Billt]

Looks like a good start! It will take a few weeks to adjust to those meds/doses, and then your son will be ready for the next treatments Dr Kaufman will likely add based on the new data.

I see nothing related to OI treatment. Does your son not have OI symptoms?

Good luck! Keep us posted.

Sorry for the lack of knowledge... OI ??

 

[SOC]

Sorry for the lack of knowledge... OI ??

Orthostatic intolerance.

I really meant to ask if he has any form of dysautonomia, which seems to be pretty common in ME/CFS. A lot of us have dizziness, heart rate problems, low or highly variable blood pressure, heat intolerance, excessive fatigue, excessive thirst, gut issues -- all dysautonomia symptoms. Orthostatic intolerance is often a feature of dysautonomia for people with ME.

 

[Billt]

Orthostatic intolerance.

I really meant to ask if he has any form of dysautonomia, which seems to be pretty common in ME/CFS. A lot of us have dizziness, heart rate problems, low or highly variable blood pressure, heat intolerance, excessive fatigue, excessive thirst, gut issues -- all dysautonomia symptoms. Orthostatic intolerance is often a feature of dysautonomia for people with ME.

No, dr did not mention this at all. He did take his pressure sitting and standing, but it must have been ok because he didn't say anything about it. The only symptoms out of that group would be excessive fatigue and he is thirsty ( drinks alot of water ). I think he may have some minor gut issues he is not willing to share with his dad but nothing major. So Dr. Kaufman said because of lack of SIBO symptoms we would need to re-test for this locally after he finishes the meds..
Hopefully he will adjust to the meds quickly and not set him back any ... SOC thanks for the lesson .. need to learn as much as I can !!! Bill

 

[RUkiddingME]

I love this thread!!! My appointment in on June 11th and I can't wait to meet Dr. Kaufman

 

[aquariusgirl]

Long shot......but does Dr Kaufman have any interest in heavy metals??

 

[charlie1]

Hi all, just wanted to update a little more with what meds we are going to start with. Still have a few weeks before phone follow up and bloodwork results but Dr Kaufman is starting him off with 1000 mg Famvir 2x a day , LDN starting at 1.5 and working up and Xifaxan 3 x a day for the SIBO. Hope he can tolerate all this. Will let ya'll know how he does ... !!!! Be Well.... Bill

Hi Bill,
How are things going with your son?

 

[jeff_w]

Long shot......but does Dr Kaufman have any interest in heavy metals??

Just call his office and ask. Open Medicine Institute in Mountain View, CA.

Good luck!

 

[jeff_w]

I love this thread!!! My appointment in on June 11th and I can't wait to meet Dr. Kaufman

@RUkiddingME - Keep us posted!

 

[Billt]

Hi Bill,
How are things going with your son?

No change as of yet, but it is still only about 2 weeks since we were there. He is tolerating the meds so far , so that is a good thing !! I would love for this to be a quick recovery, but slow and steady would be ok too. Can't wait to see some improvement... Bill

 

[Billt]

@RUkiddingME - Keep us posted!

Our phone follow up is on the 8th. I would guess that is when we will get all blood test results and maybe a little more details of what is going on !!. Let us know how you make out ... Bill

 

[Billt]

RU good luck tomorrow. Please let us know how it goes. We just did our phone follow up since we are so far away. Dr Kaufman spent a lot of time and went over all the bloodwork ( witch was a lot !! ). We did record it because my understanding and memory are not very good. He did add some new things to take, and we are in process f getting those.. Here is some of what I understand. On bloodwork

Nk cells very low normal, should be much higher
cd19 cells low
ebv early antigen was normal, which Dr thought would to high. So a bit confused on that one
ebv igm,igg very high. but again Dr thought would be higher
positive for 2 a1298c mutations
igg sub class low
carnitine low

So my limited understanding is son has always had this mutation, It just took something like a severe case of EBV for his body to not be able to fight it. With B cells being low, they are over working and can't keep up, so he stays sick.

we are adding Caritine , metholated B-12 ( because he able will not absorb the regular ) , increase his Famvir to 1000g 3 times a day, HE is also up to 4.5 ldn now, have finished the antibiotic for sibo, Also added large dose of folic acid

Lot's of other bloodwork came back mostly normal

He has not improved any as of yet. In fact he has been feeling worse. So that is a question I have for some of you guys,, Do you have times when you feel a little better just to go backwards. He whole body is aching, headache,jaws,legs arms,neck real bad. ( I am hoping maybe it is the meds doing something, like worse before better ).

Does this sound similar to anything any of you guys have ?

Sorry it was so long, that is all I can remember for now. Thank you all for your help... Be well Bill

 

[charlie1]

Bill,
I cannot comment on the lab results as I am not knowledgeable in any of that. I've never been fortunate enough to have proper testing done.
But what I do know is that PEM can rear its ugly head when the body has been stressed either mentally or physically.
So as well as the possibility that the treatment may be causing feelings of worse symptoms (which might be a normal side effect...I don't know), your son feeling so bad is quite likely being aggravated by PEM. Sadly, the travel and the # of days away while being tested will have taken a toll on him.

 

[Billt]

Bill,
I cannot comment on the lab results as I am not knowledgeable in any of that. I've never been fortunate enough to have proper testing done.
But what I do know is that PEM can rear its ugly head when the body has been stressed either mentally or physically.
So as well as the possibility that the treatment may be causing feelings of worse symptoms (which might be a normal side effect...I don't know), your son feeling so bad is quite likely being aggravated by PEM. Sadly, the travel and the # of days away while being tested will have taken a toll on him.

Yes I am thinking it is PEM. I didn't know it could be caused by stress as well. that could be it as it has been a very stressful time. Thanks charlie

 

[charlie1]

He needs to Rest, Rest, and more Rest!!!

 

[Vasha]

He has not improved any as of yet. In fact he has been feeling worse. So that is a question I have for some of you guys,, Do you have times when you feel a little better just to go backwards. He whole body is aching, headache,jaws,legs arms,neck real bad. ( I am hoping maybe it is the meds doing something, like worse before better ).

Does this sound similar to anything any of you guys have ?l

Hi @Billt, it sure does sound similar. As @charlie1 said, PEM can be triggered by many stressors. He could even have ridden the adrenalin from the visit for a bit and then been overdoing without knowing it. Hope he feels better very soon!

Vasha

 

[MeSci]

Yes I am thinking it is PEM. I didn't know it could be caused by stress as well. that could be it as it has been a very stressful time. Thanks charlie

I agree that it's probably PEM, but another possibility is that bacteria are being killed off and releasing endotoxins (lipopolysaccharides) which can make you feel lousy.

 

[Billt]

I agree that it's probably PEM, but another possibility is that bacteria are being killed off and releasing endotoxins (lipopolysaccharides) which can make you feel lousy.

such great information.. thanks so much... I am learning. I would think that would be a good thing ig they are dying off from the antibiotic.

Also just got his saliva hormone test back.Looks like all were in range, but interpation says pattern and symtoms are consistent with evolving ( phase 2 ) adreanal gland dysfunction. Humm another new one to me. Will have to talk to Dr about this I guess. Be Well.... Bill

 

[RUkiddingME]

Hey guys! Sorry for the delay on my Dr. Kaufman appointment update, still recuperating from the trip.

First of all, like all of you here, my husband and I both really liked him!!

As soon as we got there the SIBO test got started. I blew a baseline of 5 ppm and within 45 minutes I was already blowing over 45 ppm- so yep, strongly positive! So the test was done after 45 minutes and Rifaximin prescribed.

(I felt aweful all afternoon with every GI symptom possible) - Lactulose is not for me lol

FYI- I have HHV6 and EBV with no co-infections 5.5 years

We discussed my history with Valcyte. I am on my second round month 12. I seem to improve a bit, then plateau. My highest functioning level so far has been around 35%of normal. Still better then the zero level of functioning pre-Valcyte!!. He wants me to increase my dose (assuming our insurance will agree)and see what happens while monitoring my blood work closely. I very lucky in that I tolerate the Valcyte like candy but my Lipase levels (pancreas) have fluctuated since the beginning but we still don't know if Valcyte is the cause of this since Lipase is not usually part of the routine lab work, I was just tested by fluke by my family doctor.

I explained my difficulty with any walking and standing with elevated heart rate. I don't have POTS but my heart rate is still above my anaerobic threshold while trying to do anything. He took my blood pressure and heart rate, standing, sitting and laying down but there was nothing serious except low BP which could be due to the fasting. He had me walk around the clinic and saw me deteriorate quickly. He thinks it could be mitochondrial related.

I showed him my list of supplements which is very basic and he asked me to increase a dose and add a couple of more like Acetyl-L-carnitine and Alpha Lipoic Acid.

I was on Celebrex many years ago for a different problem but helped me tremendously with inflammation so I will be going back on it.

I was given a cortisol saliva kit to get done.

I had some blood work done - viral titers and NK cells and other things I only saw once we were paying the $$$$ bill.I did some research on the new tests he ordered and have a theory as to why he tested it but will wait to discuss this with him during our follow up phone call. He also tested me for the MTHFR gene mutation. He also wants me to have some lab tests done back home so we don't have to pay out of pocket.

We discussed Rituxan briefly and it's something I would definitely look into if I were to win the lottery! Lol

Overall we were extremely pleased with the appointment, now the next step is getting all his recommendations to happen in Canada...