• 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 (FM), 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.

Search results

  1. C

    Characterising eye movement dysfunction in ME/CFS

    Oh cool, I was a student at the University of Leicester when I took part in this research. I am pleased it has seen the light of day (pun intended) ;)
  2. C

    My possible Valcyte miracle!

    Thanks for letting me know, I am starting Valcyte in 2014 so am in the process of trying to price it all up.
  3. C

    My possible Valcyte miracle!

    Congrats :) very happy for you! Are you still on 900mg twice a day?
  4. C

    Third day on Valcyte. So far so good.

    Thanks for the info re: Valycte generic. At least it's sooner rather than later, regardless of 2013 or 2015. Maybe there is some hope after all for us in the UK.
  5. C

    Just My Luck - Parasites

    Thanks for the input all - I have not bothered treating it, for fear of my overall condition getting any worse (I just about manage to hold down a full time job). I shall certainly look into the natto IreneF - I am not averse to trying new stuff, particularly where my dodgy stomach is...
  6. C

    Back from my trip to see Dr Kogelnik

    Oh cool HTree - at that age I feel you definitely still have hope :) although your Dr K is Klimas and my Dr K is Kogelnik, lol.
  7. C

    Back from my trip to see Dr Kogelnik

    I am going to go with the Valcyte HTree - but not having it until 2014 likely, as I am trying to save up in the meantime. I don't know about the Rituxan, but it kind of seems to have gone a little quiet on that front and I think an AV would be a better bet as a first line treatment. I believe I...
  8. C

    What specific EBV and other tests are doen before adminsitration of Valtrex, Famvir, etc.?

    EBV, CMV, HHV-6 I would suggest, IgG and IgM on those...also perhaps more of a complete panel on the EBV. Also co-infections such as Chlaymdia Pnemoniae, Mycoplasma and Lyme. Then it's how long is a piece of string on any additional testing you want to do. I am keen to start on Valcyte next year...
  9. C

    High IgGs...what does it mean?

    People will interpret those results in varying ways but one suggestion is that the IgG relates to a past infection and so your body is still pumping out antibodies to the EBV and CMV. IgM relates to more recent infection, and so the high IgG levels suggest that whilst you are not in the midst of...
  10. C

    Back from my trip to see Dr Kogelnik

    Dr K really knows his stuff and so I would certainly recommend him RUkiddingME - the initial consultation was around about £300, I don't know what exactly that is in dollars, and Dr K was kind enough to do the Skype follow up as part of that initial fee. As I said on another thread I will be...
  11. C

    Test results and antivirals success, what are high titers, what tests?

    RUkiddingME I am on hiatus with Dr K as it stands, the New Year is going to bring some news from him I believe and so I am going to see how things pan out with an announcement imminent. Failing that, I will not be on Famvir, not because I don't want to give it a shot but because I have HHV6, EBV...
  12. C

    Test results and antivirals success, what are high titers, what tests?

    If I remember correctly the IgG for HHV6 had to be over around about 1:620 for inclusion in the study, someone will no doubt fine tune me on that but it was certainly in that ballpark. They were going up to over 1:1100 though.
  13. C

    Best source of cheap Famvir in USA/Canada?

    I just wanted to kick off with the non-generic version though heapsreal whilst I can finances wise. If it proves that it helps then I will certainly move to generic and assess the efficacy. Do you know of any cheaper but still the original Famvir?
  14. C

    Best source of cheap Famvir in USA/Canada?

    http://www.canadadrugs.com/ looks ok and ships here to the UK.
  15. C

    Lists of tests

    Here is a decent list to kick off with, others will no doubt add their faves as well :) Natural Killer Cell Function Assay HHV6 IgG & IgM EBV VCA IgG & IgM EBV EA (r+d) IgG EBNA Ab IgG HSV 1/2 IgG & IgM CMV IgG & IgM Parvovirus B19 IgG & IgM VZV IgG & IgM Mycoplasma pneumoniae IgG & IgM...
  16. C

    Best source of cheap Famvir in USA/Canada?

    Just wondering if anyone knows of anywhere that can better the prices on http://www.canadadrugs.com/search.php?keyword=famvir I am keen to get the actual Famvir, not the generic, but equally I don't have limitless resources so any assistance would me gratefully received.
  17. C

    Back from my trip to see Dr Kogelnik

    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.
  18. C

    GOOD things happening!! Am I a responder???

    Congrats Jacque, when was your first infusion and how many have you had thus far?
  19. C

    Back from my trip to see Dr Kogelnik

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

    Back from my trip to see Dr Kogelnik

    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.
  21. C

    Back from my trip to see Dr Kogelnik

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

    Back from my trip to see Dr Kogelnik

    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...
  23. C

    Back from my trip to see Dr Kogelnik

    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...
  24. C

    Travelling from the UK to see Dr Kogelnik

    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...
  25. C

    Travelling from the UK to see Dr Kogelnik

    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...
  26. C

    Lipkin XMRV study to be released June 30th

    September 18th it is then!!! https://twitter.com/CII722
  27. C

    Travelling from the UK to see Dr Kogelnik

    Just packing now, ready to leave on Saturday, wish me luck!!!
  28. C

    Rituximab Discussion

    Thanks for the info Snow Leopard.