Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

Question about seeing Dr De MeirLeir: Reno or Brussels?

Discussion in 'ME/CFS Doctors' started by valentinelynx, May 21, 2016.

  1. valentinelynx

    valentinelynx Senior Member

    Messages:
    637
    Likes:
    1,372
    Tucson
    I am wondering if anyone has the experience to help me make this decision.

    I am strongly considering seeing Dr De MeirLeir, as he appears to have the most experience successfully treating both ME/CFS and chronic intracellular infections, e.g. Lyme disease et al. My diagnosis is currently ambiguous - the Lyme tests are inconclusive, but my clinical presentation is highly suggestive: I had tick bites in an endemic area (SF Bay Area hills), a rash, and subsequent sudden onset of flu-like illness with hand stiffness and many other symptoms. So, I would like to see a doctor who is well versed in both ME/CFS and Lyme-type illness, and De Meirleir seems to be the best.

    I have been seeing some good people: Dr Yang in San Diego, and Dr Kaufman in Mt View, California. However, I'm not seeing any improvement in my condition yet. Perhaps I am too impatient, as it's been less than a year with both of these doctors. However, I don't want to waste any more time...

    My intent is to finally, after being ill for 23 years, to pull out all the stops to try to get better, as things have been very bad lately, and I am afraid of losing my ability to work. Currently, I work part-time, for a few days at at a time, and it sets me back for a week or more each time.

    Anyway, the question is: since I want to get the most possible out of seeing Dr De Meirleir, would I do better to see him in Brussels, where maybe he would have more time to consider my case, or is seeing him in Reno, Nevada (at the Whittemore Peterson Institute - much, much cheaper and easier travel, as I live in Arizona) just as good? I am concerned that he may be limited in time in Reno, if what I am reading is true, that he sees patients there only 3 days every other month.

    In reading people's reports of trips to Brussels, it seems that most people are seen over at least two days. If he only has 3 days to see patients every other month at the WPI in Reno that would seem to make repeated visits over 2 or more days unlikely?

    Does anyone have any experience with seeing Dr De Meirleir in Reno? Any insight into whether it would be worth the $$ to see him Brussels where he might have more time?

    Thank you for your thoughts.
     
  2. adelheid55

    adelheid55 Senior Member

    Messages:
    382
    Likes:
    583
    It's two days in Brussels because of the breathtests, I think. Fructose and Lactose, every test takes 3.5 hours and you have to be without breakfast.
    I don't know about how much time he usually has. He is very straightforward but you can ask him all your questions which he answers short but not unfriendly.
    Maybe there are other patients with more difficult conditions which he sees as well on the second day (at our daughter's first visit he said he would see her possibly the next day but he didn't).
     
    Plum, Jennifer J and sarah darwins like this.
  3. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,280
    Likes:
    45,781
    The impression I get from @Sushi is that KDM actually has more time for appointments in Reno. The ones in Brussels tend to be pretty short (though thorough), due to the high volume of patients.
     
    valentinelynx, Plum and sarah darwins like this.
  4. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,234
    Likes:
    21,347
    Albuquerque
    Yes, I've seen him both in Brussels and in Reno. The Reno visits are much more relaxed and much longer. I've had more than enough time to ask all my questions. I prefer Reno both because of the ease of travel for US patients and the longer appointments. The Reno facility is really nice too. At the moment a relevant question is whether the Whittemore Peterson lab is open yet. If so, that would make a difference for US patients as, I was told, they plan to take insurance.
     
  5. Mary

    Mary Senior Member

    Messages:
    2,650
    Likes:
    5,888
    Southern California
    @Sushi - I e-mailed KDM's office last July with some questions about seeing him in Reno and never got a reply. I never followed up with a second e-mail, but just wondered do you have trouble contacting them and getting a response? Can you tell me how you contact his office? Thanks!
     
  6. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,234
    Likes:
    21,347
    Albuquerque
    You need to use a particular email address: Nossa Van den Vondeer (nossavdv at ehmb.be)
    She handles scheduling appointments in Reno. (Note: you have to substitute @ for at--protecting her from robots.)
     
    Valentijn and Jennifer J like this.
  7. Mary

    Mary Senior Member

    Messages:
    2,650
    Likes:
    5,888
    Southern California
    Thank you! :thumbsup: I may try again. The e-mail address I used last year was "charlottef at ehmb.be" --
     
  8. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,234
    Likes:
    21,347
    Albuquerque
    Charlotte is no longer on the staff.
     
  9. Mary

    Mary Senior Member

    Messages:
    2,650
    Likes:
    5,888
    Southern California
    I just looked at the WPI website today and it still shows the charlotte e-mail I used above to make an appt with KDM, FWIW, but I will use the new one you gave me -
     
  10. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,234
    Likes:
    21,347
    Albuquerque
    There are no permanent clinic staff in Reno to take care of things like that and WPI itself doesn't seem to update the clinical information. The clinic seems to be run separately from the research facility, but Nossa is the one who sends me emails re: appointments now. She used to come from Belgium with KDM, though I don't know if she still does.
     
    Valentijn, Jennifer J and Mary like this.
  11. valentinelynx

    valentinelynx Senior Member

    Messages:
    637
    Likes:
    1,372
    Tucson
    Thank you guys for your input, especially Sushi - thanks for PM'ing me.
    I'm kind of amazed that KDM isn't overwhelmed at WPI. But, then, it is hardly widely advertised that he goes there, and as some point out, hard to get ahold of the clinic.

    So, shh! Don't tell anyone!
    ;)
     
    Jennifer J likes this.
  12. Mary

    Mary Senior Member

    Messages:
    2,650
    Likes:
    5,888
    Southern California
    I just spoke to Craig Setter at the R.E.D. lab in Reno - he said they plan to open in the next couple of weeks. I asked him if they will be set up to do Medicare billing and he said they are working towards that, and I asked if I checked back in a month if he would have more info, and he said definitely - woo hoo! :)
     
    Valentijn, Sushi and sarah darwins like this.
  13. Santino

    Santino Senior Member

    Messages:
    193
    Likes:
    14
    WHat are the experiences with the treatments of KDM generally? I do not find reports on the internet...
     

See more popular forum discussions.

Share This Page