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My Experience With Dr. Kaufman at the Open Medicine Institute

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
We have not tired anything else yet. It takes so much time everytime we do a round of abx. 2 weeks on r/x then wait a month before testing. Then time to get in touch with dr and see what he wants us to do next. Rinse and repeat. So that has taken several months to get to this point. We didn't want to start anything else while he was on the r/x. And were trying to stay on what the Dr told us to do. Odd thing is he has no GI issues thankfully because he has enough on his plate.
My thought is the SIBO may still be causing his immune system to not work properly, thus not getting better
This 2007 paper on SIBO has what looks like a good section on treatment.
 

Folk

Senior Member
Messages
217
Did he say what treatment he would use if you were positive for Bartonella? I was positive by PCR and took about a year of abx treatment. I never felt well on it, though I suppose it got rid of the Bartonella.
@Sushi he told me it would be long course of Abx too.
 

Violeta

Senior Member
Messages
2,895
What surprises me about the OMI approach, especially from a physician who used to be a HIV doctor, is the focus on herpes titres in ME/CFS. As Dr Chia pointed out at the conference in London earlier this year, before the discovery of HIV lots of people were focusing on herpes virus titres in AIDS patients and speculating about the possible causative role of these viruses but all this became instantly irrelevant once the real cause of AIDS was discovered. Speaking as someone with ME/CFS and pretty much chronic shingles, it seems pretty clear to me that these reactivations are a consequence of whatever the hell is going on with the redox state and the immune system in ME/CFS, not the cause. Valcyte, when it works in a subset of patients, probably works through its immunomodulatory mechanisms rather than its antiviral effect. To my mind, the herpes virus approach is a dead end.
@Sidereal , have you tried anything besides the antiviral meds?

The herpes virus approach could be right, just that they don't know how to deal with it and the other possible viruses involved.

I find the first post in this thread interesting.
http://www.longecity.org/forum/topic/54035-control-epstein-barr-virus-reactivation-with-arginine/

"Who would have thought ? Herpes activation is knows to depend on arginine concentration but Epstein-barr, while belonging to the herpesviridae family, reacts differently to this amino. Herpes infections are also known to reactivate epstein barr. "

This has been banging around in my head for a couple of months. It seems as if the answer to at least my issues is somewhere in this riddle.

Lysine is good at keeping Herpes I at bay, arginine brings on a herpes flare, arginine fights EBV.

Edited several times so that I don't have to add new posts.
 
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ebethc

Senior Member
Messages
1,901
I agree !! Sounds like every Doctor does treat differently and does different tests as well.

Dr. K really doesn't know why he is not resonding. That is why he wanted us to do the Bartonella test, just to see if something else is going on that could be causing the lack of improvement. He has also been on 3 rounds of abx for SIBO, but that is still positive as well.

@Billt - what is "abx"?
 

Jo86

Senior Member
Messages
197
Location
France
Hey guys. I know some have been listed on this thread, but could I ask anyone to give me like a list of the specific tests Dr.Kaufman orders to have done ? I really need something specific to work with, and can't get a list of specific tests he'd have a CFS-type patient go through. That would be very appreciated, if anyone could list what he's gone through personally.
 

SwanRonson

Senior Member
Messages
300
Location
Alabama
give me like a list of the specific tests Dr.Kaufman orders to have done ?

It's a large sheet and he makes check marks next to the tests he wants as you dialogue with him so it's going to be a different mix for everybody. I can tell you what he did on mine if you want, but it may be different for the next person depending on how you respond to his questions during the consult.

For me it was:
CBC, Lymphocytes, testosterone, thyroid, immunoglobin, ammonia, vassopresin, VEGF, histamine, NK cells, alpha-1-antitrypsin, metabolic panel, CRP, Tryptase, b12/folate, TIBC, iron/ferritin, lyme, ebv, bartonella, borrelia, babesia, hhv6, varicella zoster, c pneumonia, vitamin D, ANA

There were 21 vials. I counted. :)

He said 80% of his patients are positive for SIBO, so expect a breath test. If you are travelling from out of state, find out in advance what diet you need to stick to so you can do the test while you're there. It's easier.
 
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SwanRonson

Senior Member
Messages
300
Location
Alabama
I'm almost finished with my first round of antibiotics for SIBO (xifaxin/flagyl) - 14 days @ 3 x 500mg per day of each. I actually had to stop the Flagyl at day 8 because I was having a severe reaction to it. Lightheaded, chest tightness, jelly legs, insomnia. It was nasty.

On the positive side, I've had a dramatic improvement in symptoms - specifically brain fog has cleared for the first time in 2 years. I don't know what to make of it all yet and not sure if it will last (fingers crossed), but so far so good. Fatigue is still present, but clear head indicates going in the right direction I hope.

Kaufman is great. If you live out of state though, as I do, it can be hard to get a hold of him. He's very busy. Be sure to get your local doctor on board before you start treatment so he can know why your calling if there is a problem. I'd go so far as to ask Kaufman to pen a note to your doc to say what he's doing and why. Just my 2 cents.
 

Jo86

Senior Member
Messages
197
Location
France
thanks a lot SwanRonson, and lol at that username btw love it. That's very useful info indeed for me. I'm wondering whether the tests he'd have me do could be done here in France, as traveling there, staying somewhere + no american insurance and thousands of testing dollars... difficult atm.

With me it's strange, my symptoms are very SIBO like (enormous and continuous physical malaise and brainfog, extreme fatigue, strong food intolerances, feel worse by the day...) but as I tried Rifaximin (Rcifax) for two weeks, absolutely nothing changed. Theoretically I would've hoped for a difference, but deep inside I sort of "knew" nothing would happen. It's been 10 years of this constant slope. Strange... hope I figure what it is before I die from it !:D
 

Violeta

Senior Member
Messages
2,895
thanks a lot SwanRonson, and lol at that username btw love it. That's very useful info indeed for me. I'm wondering whether the tests he'd have me do could be done here in France, as traveling there, staying somewhere + no american insurance and thousands of testing dollars... difficult atm.

With me it's strange, my symptoms are very SIBO like (enormous and continuous physical malaise and brainfog, extreme fatigue, strong food intolerances, feel worse by the day...) but as I tried Rifaximin (Rcifax) for two weeks, absolutely nothing changed. Theoretically I would've hoped for a difference, but deep inside I sort of "knew" nothing would happen. It's been 10 years of this constant slope. Strange... hope I figure what it is before I die from it !:D
You didn't happen to get the avian flu vaccine in 2005, did you?
 
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Jo86

Senior Member
Messages
197
Location
France
You didn't happen to get the avian flu vaccine in 2005, did you?
hey there. This is going to sound a bit retarded, but I don't actually recall but I definitely don't think so. Not that I'm asking for a diagnosis and you're kind enough to spend time for me here, but I fell "ill" in 2006 when I went to Canada for studies and during my first semester did three notable things: nose piercing (skin infection for months), smoked pot daily, and ate really really bad (went from good full vegetable/protein etc diet, to total garbage pizza slices white bread with nutella tons of junk food and only processed foods). If this rings familiar for anyone, perhaps... ?
 

JAH

Senior Member
Messages
497
Location
Northern California
I'm almost finished with my first round of antibiotics for SIBO (xifaxin/flagyl) - 14 days @ 3 x 500mg per day of each. I actually had to stop the Flagyl at day 8 because I was having a severe reaction to it. Lightheaded, chest tightness, jelly legs, insomnia. It was nasty.

On the positive side, I've had a dramatic improvement in symptoms - specifically brain fog has cleared for the first time in 2 years. I don't know what to make of it all yet and not sure if it will last (fingers crossed), but so far so good. Fatigue is still present, but clear head indicates going in the right direction I hope.

Kaufman is great. If you live out of state though, as I do, it can be hard to get a hold of him. He's very busy. Be sure to get your local doctor on board before you start treatment so he can know why your calling if there is a problem. I'd go so far as to ask Kaufman to pen a note to your doc to say what he's doing and why. Just my 2 cents.

Do you remember what your result was for SIBO? Did you need the entire 3 hours?

Thanks, J
 

SwanRonson

Senior Member
Messages
300
Location
Alabama
Do you remember what your result was for SIBO? Did you need the entire 3 hours?

I've never been tested. I flew into Mt. View and hadn't prepped for the breath test so we weren't able to do it. Thus, my recommendation that everyone travelling should ask in advance how to prep.

He went ahead and treated anyway based on my history/symptoms and the fact that he said 80% of his CFS patients test positive.
 

Billt

Senior Member
Messages
289
Location
New Orleans
Jo86, SwanRonson gave you most of the list for bloodwork That Kaufman does. Yes it is alot of vials !

I think my son was around 21 as well, so I would think most bloodwork is the same for most of us with maybe one or two different ones depending on your symptoms. We did the SIBO test as well but you do have to do a special diet the day before. My son tested positive within the first 1/2 hour. We have done R/X 3 times and have had it checked locally and it is still positive . So no help for us on the SIBO but that doesn't mean itwon't help you.
We had insurance to pay for most of the first bloodwork. We don't have it now so we could not do anymore bloodwork from Kaufman. I priced it out at about $ 3500.00 for what he wanted us to do. Just don't have that !
Hope this helps. Good luck to you..
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
Jo86, SwanRonson gave you most of the list for bloodwork That Kaufman does. Yes it is alot of vials !

I think my son was around 21 as well, so I would think most bloodwork is the same for most of us with maybe one or two different ones depending on your symptoms. We did the SIBO test as well but you do have to do a special diet the day before. My son tested positive within the first 1/2 hour. We have done R/X 3 times and have had it checked locally and it is still positive . So no help for us on the SIBO but that doesn't mean itwon't help you.
We had insurance to pay for most of the first bloodwork. We don't have it now so we could not do anymore bloodwork from Kaufman. I priced it out at about $ 3500.00 for what he wanted us to do. Just don't have that !
Hope this helps. Good luck to you..
@Billt i did a round of abx for sibo through dr Kaufman and was still positive at retest. In the meantime I had also started seeing a functional medicine dr locally and he stated that depending on how high your levels of methane or hydrogen were by the 120 minute mark you needed to do the meds longer than 2 weeks. It was anywhere from 30-90 days. I'm in the 90 day camp of rifaximan plus a bunch of other stuff like antimicrobials and gut support stuff.
 

Billt

Senior Member
Messages
289
Location
New Orleans
Billt i did a round of abx for sibo through dr Kaufman and was still positive at retest. In the meantime I had also started seeing a functional medicine dr locally and he stated that depending on how high your levels of methane or hydrogen were by the 120 minute mark you needed to do the meds longer than 2 weeks. It was anywhere from 30-90 days. I'm in the 90 day camp of rifaximan plus a bunch of other stuff like antimicrobials and gut support stuff.

Firefly. Thanks for the info. His levels did lower slightly after each round of abx. The 2nd round he did 2 different abx's, and the 3rd time we did the xifaxin for the 3rd time and we did it for 6 weeks if I recall. Maybe we still needed to go longer as we just can't seem to get rid of the SIBO. I do need to find a good local doctor but that has been impossible !! Thanks again
 

Jo86

Senior Member
Messages
197
Location
France
Jo86, SwanRonson gave you most of the list for bloodwork That Kaufman does. Yes it is alot of vials !

I think my son was around 21 as well, so I would think most bloodwork is the same for most of us with maybe one or two different ones depending on your symptoms. We did the SIBO test as well but you do have to do a special diet the day before. My son tested positive within the first 1/2 hour. We have done R/X 3 times and have had it checked locally and it is still positive . So no help for us on the SIBO but that doesn't mean itwon't help you.
We had insurance to pay for most of the first bloodwork. We don't have it now so we could not do anymore bloodwork from Kaufman. I priced it out at about $ 3500.00 for what he wanted us to do. Just don't have that !
Hope this helps. Good luck to you..

Thanks a lot for that. Really helps a lot to learn and read this kind of info.
So would I be wrong if I said, globally, common bloodwork that could be done anywhere + SIBO breath test + a few more particular infection type tests ?

Dr.Kaufman mentioned to me a while back specifically a Galaxy Labs test (Bartonella, they culture your blood over three weeks, about 1000$) and then an Igenex (tick-born, infection oriented lab, same price).