Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 28, 2013.
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Thank you for sharing your experience. It sounds promising to me..... and I look forward to learning more about the test results and treatment plan. So glad you could get out of the UK to see this Dr.!!!
Thank you so much for sharing this with us.
I am planning to do a similar trip to one of the ME/CFS specialists. Do you maybe remember which specific viruses, bacteria, etc. you got tested for?
I have medical insurance in my own country so it would be a great financial load-off if I could do some of the test here, before I travel.
Thanks for posting this, Joel. Very interesting. Looking forward to hearing more.
I really enjoyed reading about your experience. Thanks.
Very good write up. Yes, the phlebotomists! I am also one who usually comes out with bandaids stuck all over my arms, but he always gets me on the first prick and always finds a good vein--I am thankful for that.
BTW, did you notice that there is an elevator at the Eurovolley?
And, today Prof. De Meirleir is giving an interesting talk:
ME/CFS From Infectious Disease to Autoimmune Disorder
I hope we hear some reports soon. The audio recording is supposed to be available soon.
Hi SnowAthlete, I'm very happy for you, that you had the opportunity to meet a great doctor and I'm praying now that he will be able to help you. It would be great if you could post a list of the test you did, maybe I can get my insurance here in my country to pay for some of them. Please, keep us updated about the results and the treatments. Keep the hope up, you are in the hands of one of the best doctors.
Thanks everyone, I'm glad that you have found it interesting.
Sushi - there is a lift?! How do I miss things like that? I must have been walking around with my eyes closed. Thanks for letting me know; I will certainly use it next time I go!
Sherezade - thank you; I'm certainly open to prayers - I'll take all I can get! Yes, I just posted most of my tests on a thread in the 'ME/CFS Doctors' section on the forum. Hope you find them useful to know and I hope you have some luck getting some testing paid for by your insurance. Do let us know how that works out.
look forward to a positive outcome
and further information
I hope you improve a lot.
The part about his analytical eye is excellent.
We're all half dead by the time we get there! I had a big bag so I asked...it is sort of behind the stairs.
Quite funny for the patients to watch all those healthy giants play volleyball. They have two extremes of guests.
I never found that restaurant you went to...is it farther down the street that the Eurovolley is on? Or back toward Himmunitas?
Sushi: about 400m further down the street (away from himmunitas) and then you need to go right (a small street in the woods), this leads straight up to the resto
Thanks so much for the article, snowathlete! After I try a couple more things in the Netherlands that are covered or semi-covered under health insurance, I'll probably be off there as well.
I have the jaw thing too. Left side started clicking a year before I got sick, then the right side got painful and "stuck" like it needed to click a couple weeks before my full ME symptoms started. And the blood drawing thing ... eek! "Hunt the vein" has been a constant game since I got sick, and 6 months ago there was half an hour of trying, being sent home, going back, still couldn't find it, so taking it from the hand. And then almost passing out
Anyway, great article, and you're an excellent writer.
Thanks for sharing snowathlete and Sushi for KdeM's further talk and thoughts.
Sushi as dece says, it's about 400 meters turning left as you leave the eurovolley. When you reach the track road into the woods, you know you're in the right place because there is a sign there at the road entrance. It's about the same distance again, into the woods.
Valentijn Thanks, that's very kind of you to say.
I don't know what the jaw thing was about exactly, but he obviously thought it was significant enough to ask about. I didn't think about in relation to my ME but I did get it about the same time and it's bad enough that I went to my GP with it - he dismissed it of course. I wonder if anyone else has any insight on that?
I also travelled from the UK to see KDM, and I was very disappointed indeed - for me it was a total waste of time and money.
I stayed at the Campanile Hotel (just about ok, but heavily overpriced), the taxi was an hour late for me too, and for anyone else who stays there do be aware there's a bus that goes from the station right to the clinic, you don't need a taxi. No idea why the clinic didn't tell me that.
The time with KDM wasn't enough for him to take a history from me, let alone talk about symptoms or treatments I'd found that worked - he seemed only interested in his process, his questions. It took nearly four months before I heard anything after the appointment. I was expected to spend large amounts of money on all sorts of treatments with no explanation even of what they were for just where to buy them (commissions?). I was told to get enteric coated antibiotics, and sent a Belgian prescription. It's impossible to use the prescription format they provided in the UK (no postal address on it, required by law in the UK), and enteric coated amoxycillin do not exist (eventually they confirmed they don't need to be enteric coated). I spent two MONTHS emailing the clinic, getting no reply, getting unhelpful answers, being sent replacement prescriptions (twice), being ignored, chasing them over and over again, asking questions about the treatments, getting unclear answers - it was incredibly irritating and a horrible waste of time. I gather KDM travels a lot, but it seems if anyone emails a question when he's not there, no-one replies to the patient. One treatment proposed was "4ME" - I'd never heard of it. I eventually discovered it is his own manufactured equivalent to Nexavir, but I was to buy it from a "company" (I was told it was his wife's business, I've no idea if that's true) with no web site, no phone number and operating through a Hotmail account - when emailing an order they are very quick to respond, but funnily enough when asking any other questions (what is it? where is it made? what are the risks?), they don't bother to reply. It's appalling that a doctor suggests I buy a substance from such an unclear source and inject it. I made a decision to proceed at my own risk, I started treatments, relapsed, and ended up selling the supplements and switched to another doctor. I didn't like KDM's manner, his team were completely unhelpful once I'd left the clinic, and there was no support for me during treatment. KDM is clearly a very smart man, and highly committed to this illness, but as a physician, he didn't meet my expectations. What use is a doctor if he throws a shopping list of pills at you, and then leaves you to fend for yourself when there are problems?
What a great writeup and detail story. Looking forward to more on your results and treatment.
The jaw thing is Temporal Mandibular jaw problems. Where y0u can't chew or bite your food properly. Your jaw is out of alignment. There are Dental specialist just for it.
San Diego #1
olliec - thanks for sharing your experience; its helpful to hear a different experience. Sorry it wasn't a great experience for you personally though.
SanDiego#1 - thanks Regarding the Temporomandibular I just wonder what De Meirleir thinks this has to do with ME/CFS.
Interesting post. A lot of these specialists are like that. I will have to give Cheney his credit.
I really never felt left out -at least for long
. I e-mail him all the time and complain or let him know what is working or not working and so far he has given me many other options. Simple things. He is expensive. I am doing better on his Protocal. He is definitely not disinterested and while you are there he is working only on you and your problems.
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