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My Experience With Dr. Kaufman at the Open Medicine Institute

perrier

Senior Member
Messages
1,254
This is not the case.
Hi Justin,
I know about 5 people treated by Dr KDM. They were all told they have Lyme. Also, these people know other people and the same results. Some live on Brussels. I should have used the word Many, not every. Forgive me, English is my 4 th language.
 

perrier

Senior Member
Messages
1,254
I got the impression watching interviews with KDM on "ME/CFS Alert" with Llewellyn King and Deborah Waroff that KDM is a very quiet, introverted guy. He struggled to answer interview questions with more than a few words. As an introvert myself, I know that this is often interpreted by others as being "aloof" or distant or even as if you are looking down on others, when that is rarely the case. I believe he is an intelligent, thoughtful man who struggles to express himself with others. As long as his diagnosis and treatment is intelligent and effective, I would prefer this to a showman personality who "sells" you on his treatments.

For example, check out this "video" by J Schaller, with the following caption: "Are you looking for a deeper and more personal relationship with your physician? Do you want a friendly, and highly aggressive academic leader with a passion for many areas of medicine, who personally invents and publishes new solutions internationally? Or do you want someone "trained" by drug reps or merely pharmaceutical company "education?"

Bleah! Maybe Schaller is great doctor - but his approach turns me off big time. No I don't want a "deeper and more personal relationship with my doctor!" Eww! :vomit:
I don't like bombastic arrogant doctors. I prefer a quiet fellow. Neither do I want some deep relationship. I expect proper diagnosis, treatment, careful follow, and a doctor who is not running a " mill". I also expect and here is where we have found difficulty, I expect that when something goes wrong with a treatment, that the physician face and address this, regardless whether it's a blood draw, a reaction to a tablet or anything else. This is where I found problems, when something goes wrong.
 

ebethc

Senior Member
Messages
1,901
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.

re SIBO treatment, does he always rx BOTH rifaxin and flagyl?
 

halcyon

Senior Member
Messages
2,482
what are enteroviruses? are they related to lyme?
No, they are a common RNA virus passed easily through casual contact. Poliovirus is one of the most well known enteroviruses. They have been found to persist in humans for long periods of time and have been linked to ME in numerous studies.
 

ebethc

Senior Member
Messages
1,901
No, they are a common RNA virus passed easily through casual contact. Poliovirus is one of the most well known enteroviruses. They have been found to persist in humans for long periods of time and have been linked to ME in numerous studies.

what's a dna virus?
 

halcyon

Senior Member
Messages
2,482
what's an rna virus? what's the difference btwn the two?
In DNA viruses, the viral genome is composed of DNA, similar to that in the nucleus of our own cells. DNA viruses have to be transcribed into RNA first and then translated into proteins, whereas RNA viruses can often be translated directly as they closely resemble our own mRNA. The outcome is essentially the same (the cell is infected, viral proteins are produced, and the virus replicates), it just has to do with the complexity of getting there.
 
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8
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.


Hi! How long did it take for the results?
 
Messages
8
I think you should wait for the reply of OMI before.
Did you sent them a summary of your medical records?
Did you specify that you never had a formal ME / CFS diagnosis , and perhaps a post-Lyme encephalomyelitis?

Depending on the response of OMI, they will tell you if it's worth crossing the globe to come to see them or not.

I do not know the opinion of Dr Kaufman (I'm one of his patients) on long-term antibiotic therapy.

For "practical" questions you ask yourself, I travel from France (I saw that you are from Eastern Europe), and yes, I confirm to you that these trips are a nightmare, they are very hard for one who is severe PWME.
The firsts trips, I was compelled despite my very limited budget to take direct (Paris --- San Francisco) (11h00 of flight ), so if your budget allows it to you, I invite you to also take a direct .

Then, concerning the ESTA, it is valid for 2 years, you will not have to repeat the entry fees formalities on American soil for EVERY travel).
You talk to stay (possibly) three months, compared with the visa, but I promise you that financially, it may be complicated (OMI is located in Sillicone Valley). And you will not need to stay three months. You will perhaps need to stay three weeks the first time, if ever the Doctors of OMI consider that its necessary to give you Rituximab, because it takes 14 days between the infusions 1 and 2, and it is advised to foreigners to stay a few days, ideally one week after a Ritux infusion, before going home either. (In any case, you will never have the strength to leave the next day ;-))

You should perhaps consider also contact Stanford (located geographically very close to OMI) ...
Good luck to you, and ... I understand you when you say "this will probably be my last try before I give up." ...


I do not know exactly how to post here and create a subject. But would you like to know if any of you feel pain in your body or just fatigue? I feel a lot of pain besides all the symptoms. I have consultation with Dr. K in April 2017, do you guys think he can help me with the pain?
 
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8
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...

I'm going to see Dr. KAufman, soon. Would you like to know how much you spent on exams?
 
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8
Hello! I would like to know how much money on average spent on exams? And how long do you think it is necessary to stay in the city for meetings and examinations?
 
Messages
17
I read that now regular gastroenterologist can order a SIBO test so it is covered by your medical insurance
 

Vojta

Senior Member
Messages
167
Location
Czech Republic
Hello! I would like to know how much money on average spent on exams? And how long do you think it is necessary to stay in the city for meetings and examinations?

Hello Erica, I would like to see Dr. Kaufmann next year too. Did you make you appointment recently? I was wondering about how long is waiting time for new appoitments these days.