Jeff's probably out making up for lost time (I hope).
My Experience With Dr. Kaufman at the Open Medicine Institute
- Thread starter jeff_w
- Start date
Hi,
I'm seriously considering booking appointment with Dr. Kaufman. I have just sent email to OMI.
It would be big decision for me because I'm in bad condition and it would mean to survive 15hrs flight from Europe (for 1k$) and I would be travelling alone.
My understanding is he is one of the few top specialists who still take new patients?
I have been patient of KDM for 4 years but I got only worse. I have never been diagnosed with ME/CFS from him but he thinks I have late stage lyme (all officially accepted lyme tests negative according to guidlines) and some secondary things (EBV reactivation, high inflammation and some other opportunistic infections). I took lots of atbx over the years and my condition was getting slowly worse anyway. This year I got even much worse after something like acute encephalitis episode (maybe lyme relaps) so every day is agony for me now. I feel strongly I need second opinion from someone who would pay at least some attantion to my case. And I need complex treatment plan.
Is Dr.Kaufman man I'm looking for? Does he use any new lyme tests? What is his opinion about long term atbx treatment? Or is there anyone better suited for me, maybe on the east coast?
I tried to read through most of this thread but I have big difficulties with reading and writing. But I need to figure out some practical things. How long do I need to stay in US? Do they schedule me for follow up consult 2 weeks after my initial consult automatically? And how often do I have to see him during treatment? Every 3 months? I can't travel 4 times a year from Europe and I can stay only 3 months without visa but I would stay so long only if it was absolutely necessary.
This would be probably my last try before I give up.
I'm seriously considering booking appointment with Dr. Kaufman. I have just sent email to OMI.
It would be big decision for me because I'm in bad condition and it would mean to survive 15hrs flight from Europe (for 1k$) and I would be travelling alone.
My understanding is he is one of the few top specialists who still take new patients?
I have been patient of KDM for 4 years but I got only worse. I have never been diagnosed with ME/CFS from him but he thinks I have late stage lyme (all officially accepted lyme tests negative according to guidlines) and some secondary things (EBV reactivation, high inflammation and some other opportunistic infections). I took lots of atbx over the years and my condition was getting slowly worse anyway. This year I got even much worse after something like acute encephalitis episode (maybe lyme relaps) so every day is agony for me now. I feel strongly I need second opinion from someone who would pay at least some attantion to my case. And I need complex treatment plan.
Is Dr.Kaufman man I'm looking for? Does he use any new lyme tests? What is his opinion about long term atbx treatment? Or is there anyone better suited for me, maybe on the east coast?
I tried to read through most of this thread but I have big difficulties with reading and writing. But I need to figure out some practical things. How long do I need to stay in US? Do they schedule me for follow up consult 2 weeks after my initial consult automatically? And how often do I have to see him during treatment? Every 3 months? I can't travel 4 times a year from Europe and I can stay only 3 months without visa but I would stay so long only if it was absolutely necessary.
This would be probably my last try before I give up.
His bio says that he was here as recently as November 12.
Last edited:
That was 6 days after I tagged him, so at least he is lurking. When I checked his bio, the last time he had been online was a few days after his last post. My memory wants to say that was early July?
I hope he is having so much fun living large that he just doesn't want to brag.
I hope he is having so much fun living large that he just doesn't want to brag.
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." ...
Hi funkyqueen! I am wondering why did you choose Dr. Kaufman rather than Dr. De Meirleir since it easier to go Belgium for you. Have you already tried KDM?
Hi Theodore,
Because KDM can not do anything for me. Nothing at all. ....
Thank you but it's not very explicit. Do you mean Dr. Kaufman uses a kind of treatment that Dr. De Meirleir doesn't or is it something else?
Yes, it is not very explicit, and it is voluntary.
I mean nothing , and I 'll never compare Dr. Kaufman to Mr De Meirleir.
I mean nothing , and I 'll never compare Dr. Kaufman to Mr De Meirleir.
Yes, I'am, and yes, i have it at OMI
People come from worldwide to OMI...From Russia, Australia, Sweden, Norway, UK...
For who was your question, pls ?
You just did! You put a Dr. for Kaufman and a Mr. for De Meirleir 
it is essential to be certain that you are ME patient, because for my part I have a disease which seem much to EM/CFS (gulf war syndrome or "ASIA schoenfeld syndrom")caused by the adjuvant of a vaccine (contain squalene AS03 or MF59 (oil shark in water)).Doctor K*****n had seen upon the departure of my blood test I did not have any biomarkers known on patients EM/CFS.
I was among a hundred patients only have very high NK Lymphocites,
and the absence of other markers known in EM.
but he thought that this treatment by RITUXIMAB could be beneficial on this disease (GULF war illness)
since all post vaccine diseases are autoimmune,
I spent much money for nothing !! in my case this disease does not have at all the same origin and all the symptoms of EM/CFS,
I would say rather than the GWS had more symptoms which do not exist in the CFS/EM(exple for the men;inhibition of the sexual desire and permanent impotence,disappearance of the phases of N3 deep sleepand N4, not of ignition of glands; grey and white brain mater destroy....) .i was the first sick GWI to test this biotherapy in the world , that allowed soldiers of the gulf and their scientists to know the little of improvement obtained with rituxan (5% nothing on tiredness and sleep refreshed; N3 abd N4 = 0% , this problem doesn't exist in ME/CFS)
all GWV have these problems.
for my part I always received the rituximab in record time (3 hours) with the maximum flow 200 ml/hour
and I could return to France as the next morning.
the undesirable effects appear at the end of 6 days and during one to two months:extreme tiredness
RITUXAN is very dangerous , and it could give many other autoimmune diseases, or death.
one can very often read that the responders are temporarily improved and relapse a few months after the end of infusions.fewer people find their initial health state,too little.
this treatment will not be the future drug for patients with EM/CFS because there is too many risks in balance compared to the advantages.
I was among a hundred patients only have very high NK Lymphocites,
and the absence of other markers known in EM.
but he thought that this treatment by RITUXIMAB could be beneficial on this disease (GULF war illness)
since all post vaccine diseases are autoimmune,
I spent much money for nothing !! in my case this disease does not have at all the same origin and all the symptoms of EM/CFS,
I would say rather than the GWS had more symptoms which do not exist in the CFS/EM(exple for the men;inhibition of the sexual desire and permanent impotence,disappearance of the phases of N3 deep sleepand N4, not of ignition of glands; grey and white brain mater destroy....) .i was the first sick GWI to test this biotherapy in the world , that allowed soldiers of the gulf and their scientists to know the little of improvement obtained with rituxan (5% nothing on tiredness and sleep refreshed; N3 abd N4 = 0% , this problem doesn't exist in ME/CFS)
all GWV have these problems.
for my part I always received the rituximab in record time (3 hours) with the maximum flow 200 ml/hour
and I could return to France as the next morning.
the undesirable effects appear at the end of 6 days and during one to two months:extreme tiredness
RITUXAN is very dangerous , and it could give many other autoimmune diseases, or death.
one can very often read that the responders are temporarily improved and relapse a few months after the end of infusions.fewer people find their initial health state,too little.
this treatment will not be the future drug for patients with EM/CFS because there is too many risks in balance compared to the advantages.
You just did! You put a Dr. for Kaufman and a Mr. for De Meirleir