Firefly_
Senior Member
- Messages
- 235
- Location
- Oklahoma, USA
Jeff's probably out making up for lost time (I hope).
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
What happened to Jeff?
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?His bio says that he was here as tecently as November 12.
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 do not know the opinion of Dr Kaufman (I'm one of his patients) on long-term antibiotic therapy.
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.
Funkyqueen, aren´t you one of those who has been helped by Rituximab? Did you get it done at OMI?
Wow, I didn´t realise people were travelling from Europe to get it done there - that was very proactive of you!
Does your doctor think you have any issues that Ritux won´t fix?
Yes, it is not very explicit, and it is voluntary.
I mean nothing , and I 'll never compare Dr. Kaufman to Mr 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 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." ...
@Theodore You can obtain in private message many information about all , i cant write some details here!You just did! You put a Dr. for Kaufman and a Mr. for De Meirleir