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Back from my trip to see Dr Kogelnik

Discussion in 'ME/CFS Doctors' started by Scavo86, Sep 1, 2012.

  1. Scavo86

    Scavo86 Senior Member

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    I know a few of you were keen to hear how I got on as I travelled from the UK to see Dr Kogelnik in Mountain View, CA. So here is my mini report on proceedings.

    First and foremost, the city of San Francisco I instantaneously fell in love with. I stayed with a friend at the top of Market Street in a rented apartment. As someone who is training to be a barrister, I am now looking into the possibility of California Bar exams in case I take up Dr K's treatment in the USA and a semi-permanent move might be required. The location of our place did mean that Dr K was an hour away on the CalTrain but I am fortunate in that I am functional enough to get around such distances.

    The appointment itself covered a lot of ground, particularly as I haven't ever consulted with an ME/CFS specialist before and my blood testing has been next to nothing until now. The staff, Gina (on the front desk), and Salina (nurse) were both delightful and got me settled in and signed down onto the system. My time with Dr K was around about 90 mins, punctuated by 10 mins where he had to go speak to someone from the media (I take that to be a good sign!). Those 10 mins proved the ideal opportunity for Salina to take about 12 vials of blood from me. This comprehensive panel will be in the region of $2000 for those who might be interested.

    In terms of treatment options, Dr K offered me three scenarios. Each with pros and cons. One of these was to move over to Cali and be put straight onto the Rituxan, another was to start an antiviral and be monitored from afar as it were. As you can imagine, these decisions are not to be taken lightly and there are obvious cost implications as well. As I am about to start the last year of my barrister training, and am just on the cusp of being 9-5 functional as I put it, the decisions will finely balanced and in any event I will not be doing anything rash in the next couple weeks/months.

    I realise that I have not been over descriptive with my actual consultation with Dr K. This is because I am sure you don't want to hear about my individual complaints as they are not overly interesting or indeed add anything to the community. What might be more productive is that if you have any specific questions, you can post them on this thread and I will do my best to answer them, bearing in mind I am no expert though as Dr K is.

    On a side note, whoever on here said that the doctor might want my tonsils which are being removed on Monday was spot on and so once they are removed, I am hoping the Leicester Royal Infirmary will be packaging them up and sending them frozen to Mountain View. Apparently it's always very interesting when there is the opportunity to get one's hands on a live tissue sample from an ME patient.
    HTree, alex3619, merylg and 5 others like this.
  2. maryb

    maryb iherb code TAK122

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    Glad the trip went well. Just one question - is Dr K waiting for the results of the tests before offering to put you on Rituxan ?
    Sherlock likes this.
  3. Valentijn

    Valentijn Activity Level: 3

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    You would have to get a 3 year degree from an American Bar Association accredited law school, before you can take the bar exam. No idea why, since law school in the US is almost completely irrelevant to the practice of law :p But that's going to run $30,000-$50,000 per year just for tuition.
    AFCFS likes this.
  4. IreneF

    IreneF Senior Member

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    Everyone loves San Francisco. That's why it costs so much to live here. But I understand London is expensive too.
  5. ukxmrv

    ukxmrv Senior Member

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    That's all good news. Will be interesting to see what your test results are like. The antivirals may be available through a prescription in the UK (I think private only though) once you have the blood work to support their use. There is one doctor who visits London and one there who may be willing to do this. She's done it for other patients.

    Another alternative would be buying them over the internet which a few of us have been doing for a while. That is if cost is the primary consideration.

    At least you have some alternatives and the start of a possible plan.

    It's interesting that you would need to move to Cali for the Rituxan as other patients seem to be flying in and out. Maybe it's because you would need to fly such a long distance? Did he mention getting the Rituxan under some sort of plan that would make it cheap or free?
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if looking for a source of valcyte these guys seem to be the best price i have seen for generics, around $10 a tablet. All you need to do it attach the script to an email to begin the process.
    http://www.universaldrugstore.com/medications/Valcyte

    Their famvir is also well priced too.

    cheers!!!
    Little Bluestem likes this.
  7. Shell

    Shell Senior Member

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    Sounds like a great start. :)
  8. Ema

    Ema Senior Member

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  9. Valentijn

    Valentijn Activity Level: 3

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    Sorry, but that never happens in the real world. If it was a feasible option, everyone would do it - but it would be a huge pain for the supervising attorney. MAYBE if daddy is a lawyer, but in that case it's still easier for daddy to send Junior to law school.
  10. clive powney

    clive powney Senior Member

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    In terms of treatment options, Dr K offered me three scenarios. Each with pros and cons. One of these was to move over to Cali and be put straight onto the Rituxan, another was to start an antiviral and be monitored from afar as it were.

    Do you know exactly what the tests were ? And like UKXMRV it would be great to see your results also.
    From the quote above , what was the 3rd option

    best wishes and good luck

    Clive
  11. Scavo86

    Scavo86 Senior Member

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    Hi All

    Sorry I haven't been back earlier to catch up on questions, I had my tonsils out yesterday, two days after arriving back in the country, haha, so it has been a manic few days to say the least!

    maryb From my history (acute onset following glandular fever) and presentation, Dr K thinks I might well be a candidate, but yeah, any firm decisions will be held off until the blood tests are back. I think he is particularly interested in NK cells, but I will of course update you all on this.

    ukxmrv The staying in San Fran thing was my idea, not Dr K's. I was thinking out loud, mainly due to finding the flight back West to East pretty intense and so don't think it would be overly productive to be doing that with too high a frequency. I think that issue will boil down to finances and I suspect I won't move on any plan until 2013 at the very earliest. The five days trip took about four months to organise so lord knows how long I would take to sort out repeated trips, haha. I would be very interested in hearing about that Dr in London who could privately supply the antivirals, if you want to send me a PM that would be amazing :)

    Vis-a-vis the Californian Bar thing, that was kind of a throwaway comment, which has been seized upon :) However, as someone who has a LLB qualifying law degree, and as a result of just about to be embarking on the Bar Professional Training Course (am I boring you yet), I should think that there would be some form of cross-qualification which means I wouldn't have to do a whole JD. I will also look into this further.

    heapsreal Thanks once more for keeping me up to date on the the antivirals, you know you are my one stop shop for information to do with those.

    clive powney I will certainly post the results, and what they actually were as ukxmrv suggested. I should think this would be around about 10 days from now. I wish I could talk about the third option, I can't, the reason isn't a personal one to me though. Sorry to be speaking in riddles.
    ukxmrv, heapsreal and Enid like this.
  12. maryb

    maryb iherb code TAK122

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    Thanks for your reply - its interesting for us all, a bit like one of the clan going forth into the unknown - we wait with bated breathe (well you know what I mean) until their return with news from over the seas:)

    You're a brave man going for an op a couple of days after that trip, rest up now and don't do too much.
    Clodomir likes this.
  13. ukxmrv

    ukxmrv Senior Member

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    Thanks for the incredible reply Scarvo86. The trip and now your tonsils out must have been really gruelling. Please relax and rest up as much as you can.
  14. Scavo86

    Scavo86 Senior Member

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    Thanks all...any other queries just post them on here and I will do my best to get back to you.
  15. JAH

    JAH Senior Member

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    Same thing happenened to me, and I moved out (after dropping out of law school!). Wish you the best with any treatments you decide on, and do keep us posted.
    JAH
    And if you need recommendation for a place to eat in Mt. View, let me know...
    Scavo86 likes this.
  16. Scavo86

    Scavo86 Senior Member

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    I found the most amazing bar in Mountain View JAH. I was actually staying in San Fran itself, at the top of Market Street, so really did have the best of both worlds once I travelled down on the CalTrain.
  17. JAH

    JAH Senior Member

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    Used to know some good bars at the top of market, but sadly my drinking days are long over...was the place in Mt. View on Castro?

    J
  18. Scavo86

    Scavo86 Senior Member

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    I have consulted Google maps and yes it was on Castro Street, a lot of mahogany, very friendly staff.
  19. barbc56

    barbc56 Senior Member

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    You picqued my curiosity. Once you get the script and meds., does that doctor automatically follow up with the patient.
    Thanks.
    Barb C.

    ETA @Scavo87
    I literally "lost my heart in San Francisco". I don't know how people manage to live there unless you have a lot of money. I think I just answered my own question. Take care.
    Barb C.:>)
  20. Scavo86

    Scavo86 Senior Member

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    For those of you interested in my lab results, I attach them. Not quite sure what to make of them yet, and to answer barbc56 as well, I am due a Skype/phone follow up with Dr K.

    Attached Files:

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