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Travelling from the UK to see Dr Kogelnik

cfsme23

Senior Member
Messages
129
Location
England
So excited to be seeing the good doctor in San Francisco. I am losing hope over here in the UK but am incredibly blessed to have a Dad who is keen for me to get better and so has paid my air fare and accommodation. I shall let you know how I go Stateside, but hope that there will at least be some suggestions for me to follow, if not a cure per se.
 

LisaGoddard

Senior Member
Messages
284
When you get back could you let us know about costs of treatment. I'm also in the UK and would be interested.
 

Jacque

Senior Member
Messages
424
Location
USA - California
Fred if you get approved for the patient assistance program the cost of the drug 70k US will be covered if you enter into the pilot study with Genentech as I did... So the cost of each of my infusions is $1.050 plus travel and lodging expenses. I live 4 hours from there or I would let you all stay here with me for free...

Also many of you have commented that you are DESPERATE there in the UK and are treated terribly by docs etc. I want you to know that Dr. Kogelnick is not the NORM here.. I have been seeing jerk doctors for almost 40 years here in the US and have been treated like a complete hypochondriac or diagnosed with everything from A to Z yet nothing is done about it. Just get sicker with each year passing.

So I want you to know we are are just as desperate here in the US!!
Dr. Kogelnick is God sent...and it took me 35 years of spending probably over 350K trying to get well to find him... But then again his research is fairly new to the scene - but I am glad I found him when I did! He doesn't have all of the answers - NO doctor does - we have to offer up our sick flesh as guinnea pigs to find a reason and a possible cure someday for this MISERABLE existence. :/
 
Messages
51
Fred if you get approved for the patient assistance program the cost of the drug 70k US will be covered if you enter into the pilot study with Genentech as I did... So the cost of each of my infusions is $1.050 plus travel and lodging expenses. I live 4 hours from there or I would let you all stay here with me for free...

Also many of you have commented that you are DESPERATE there in the UK and are treated terribly by docs etc. I want you to know that Dr. Kogelnick is not the NORM here.. I have been seeing jerk doctors for almost 40 years here in the US and have been treated like a complete hypochondriac or diagnosed with everything from A to Z yet nothing is done about it. Just get sicker with each year passing.

So I want you to know we are are just as desperate here in the US!!
Dr. Kogelnick is God sent...and it took me 35 years of spending probably over 350K trying to get well to find him... But then again his research is fairly new to the scene - but I am glad I found him when I did! He doesn't have all of the answers - NO doctor does - we have to offer up our sick flesh as guinnea pigs to find a reason and a possible cure someday for this MISERABLE existence. :/
 

Jacque

Senior Member
Messages
424
Location
USA - California
GOOD LUCK... Wish I lived closer to Dr. K .. I'd let you stay for free with me... Do NOT be fearful..... I was sooo scared to have it done and it was really not necessary. You will be FINE... and hopefully a "responder" to the Rituxan. The only thing that would really affect me about you are doing is the flying and travel....that is a "killer" for me... Stay in touch and let me know how you do... You will love Dr. K and his staff!! XX
 

cfsme23

Senior Member
Messages
129
Location
England
Thanks for the best wishes Jacque (I could have done with free bed and board as well, haha), I am just going to see Dr K for a consultation. I am not sure if I will be a candidate for Rituxan, and if I am, I think there will be questions to be answered vis-a-vis the Patient Assistance programme and whether I might even have to move to America for a year or two. Nonetheless, I am very excited to be heading over there to be chatting to an expert, as there are precious few clinicians in the UK who actually know what they are talking about. I will be sure to report back on my experiences.
 

Jacque

Senior Member
Messages
424
Location
USA - California
I read this and am reminded of how very "desperate" we are to have a life :( Hopefully Dr K can clone himself over there in the UK.. Find a doc who has a BRAIN...and a HEART... There has to be one!!!
 

ukxmrv

Senior Member
Messages
4,413
Location
London
That's great news Scarvo86. Hope the travel and the appointment goes well. It's very hard to have CFS or ME and travel long distances so my best wishes are with you.
 

Jacque

Senior Member
Messages
424
Location
USA - California
Only one more day till you fly out and meet the great Dr. K.. When is your appt again? Monday morning? Then if he says you are a candidate will you stay and get your first 2 treatments??? From what I have seen what deems you as a candidate is LOW NK Cells and HIGH Viral titers of CMV, EBV, HHV6,HSV1and2.. What do your labs say on these issues...and don't forget to pack all your med records... Oh geez I am soundin like a "mom" right now... Get good rest for that long flight...
 

cfsme23

Senior Member
Messages
129
Location
England
I am staying in London tonight and then flying tomorrow lunchtime, my actual appointment is Tuesday morning, best actually check exactly what time as with all the excitement I have been organising everything else but neglecting the basics.

I don't know either about the my NK cells or all the viruses. I am lucky in the sense that I haven't wasted any money on any other doctors but that does mean I am a bit behind the curve vis-a-vis blood tests. I was acute onset with Mono in 2008, and haven't really taken any meds since. Just some B12 and supplements, I am hoping that me being a 'blank canvas' will work to Dr K's advantage. If I am deemed a candidate then I guess I best start scraping together some cash, lord knows where from though, that's a dilemma for another day. Just looking to get to San Fran and back in one piece, I need to be back in England to have my tonsils out on the September 3rd so it' all go for me. Just hoping all this kerfuffle doesn't bring on a deterioration in symptoms.

Thanks once more for the all the best wishes everyone :)

Rob x