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Travelling from the UK to see Dr Kogelnik

Discussion in 'ME/CFS Doctors' started by Scavo86, Jun 20, 2012.

  1. Scavo86

    Scavo86 Senior Member

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    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.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Best wishes with this. :thumbsup:
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    So happy for you! Good luck!:)
  4. RosieBee

    RosieBee

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    Best of luck :thumbsup:
  5. sianrecovery

    sianrecovery Senior Member

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    Good luck! I am also in the UK - do post your experience, will be curious to hear it xxxx
    Fred1234567 likes this.
  6. lilpink

    lilpink

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    Ditto..most intrigued :)
  7. Scavo86

    Scavo86 Senior Member

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    Will be sure to keep you all updated on my return :)
  8. Jacque

    Jacque Senior Member

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    [Have you seen him yet? Please look up my posts I shared about him... He will be worth your trip!!!!!!!!!! :)
  9. Shell

    Shell Senior Member

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    Good Luck!!!:thumbsup: I'm in the UK too. It is desperate here!
  10. LisaGoddard

    LisaGoddard Senior Member

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    When you get back could you let us know about costs of treatment. I'm also in the UK and would be interested.
  11. Fred1234567

    Fred1234567

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    Good Luck Scavo!!
  12. Jacque

    Jacque Senior Member

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    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. :/
  13. Fred1234567

    Fred1234567

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  14. Scavo86

    Scavo86 Senior Member

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    Just packing now, ready to leave on Saturday, wish me luck!!!
    Little Bluestem and ukxmrv like this.
  15. Jacque

    Jacque Senior Member

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    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
  16. Scavo86

    Scavo86 Senior Member

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    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.
    ukxmrv likes this.
  17. Jacque

    Jacque Senior Member

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    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!!!
    allyb likes this.
  18. ukxmrv

    ukxmrv Senior Member

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    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.
  19. Jacque

    Jacque Senior Member

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    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...
    ukxmrv likes this.
  20. Scavo86

    Scavo86 Senior Member

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    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
    OverTheHills and Enid like this.

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