Discussion in 'ME/CFS Doctors' started by szenn, Jul 15, 2013.
i thought it took 4 months for results and analysis...
four months really?
why so long?
i dont understand why he wants to see me next week then. this was booked two months ago
Was this your first visit? And how long has it been since you saw him initially? It takes longer to get results on the first appointment because he has to do his initial analysis and some of the initial tests take a long time. It is not always 4 month, but it can be. You could call his office and ask if your test results have come back, and if not, make a later appointment.
Yes, it was my first appointment. i think i will cancel if the lyme stuff is not in
Frustrated that it 4 months as i wanted to get my daughter tested if i am positive for lyme. now i have another two months probably before i know. and then another 4 mths for her. plus work are not being sympathetic as i have no diagnosis
how are you daf is the treatment helpful
hi szenn. I don't know how I am. I don't understand why I cannot answer this question. I am still very sick and everything is a blur. its only been 2 1/2 months on the protocol and I have been sick for over 20 yrs. I just feel like everything is too little too late for me.
sorry...bad day. the AZT I took yrs ago has ruined my heart and I have chest pain all the time. but I still think demeirleir is the best doctor out there. it will probably take several years for me and I will be dead by then of a heart attack
Normally the lyme stuff must be in. It takes only 2/3 weeks. He gives the result direct to the patient when it is the 4-5 th appointment. Not before... But as Sushi said, ask the lady on the phone, if they have everything.
I tested my daugther for lyme, and 3 weeks after i received the result without appointment. Result was negative. We did it the the same for my husband and it was positive.... This week i test my other daugther.
Go for a second time. And then take your decision.
Have a good day
Oh my god Daf that is just a tragic answer. So sad.
I really hope things improve for you . Keep the faith in your recovery xxx
I took you and Sushi's advice and phoned the clinic.
I have tested positive for borrelia. I go to belguim next Tuesday 17th. Taking my two children to be tested.
Thank you so much for your help xx
I'm to see Dr. Meirleir next month.
How much time does he take for each patient per visit? This will be my first time seeing him.
He takes about 20 -30 minutes per patient.
But obviously you will be at the cllnic longer especially if you are an overseas patient. Then probably 8am until 12:30 having a lactose breath test. Then the next day same times but blood tests and fructose breath test. You only see KDM the 1st day .
If you are from Belgium then appointments are spread out
I wish our kind thoughts could help you feel a little better - you seem to have tried so much, made so much effort.. I know no-one said life was fair but for god's sake wish someone would give you a break xx
There is a hotel nearby himmunitas: eurovolley center.
And they have a cab who go direct to himmunitas, and who isn't expensive.
There is also a restaurant: de drie fonteinen
http://www.dedriefonteinen.be/fr/ . The park around is nice.
They speak french, flemish and english.
Have a nice day
Thanks, i've noted it.
he will take as little or as much time as you want....but you need to have your questions ready...or he will end the appt!
I emailed William Weir CFS doc about my Lyme diagnosis. he seemed very concerned and said there is a lot of controversy over lyme testing and it is likely that the test I had were unreliable. I didn't say where or by whom I got thr tests with btw.
Is KDM and his method of seen testing unreliable by the UK medical community (and others maybe). I had Elispot, PCR, serology tests. I won't know until tomorrow which tests were positive when i go back to Belgium. Why can't this be simple. I thought everything was ok when I found out I had Lyme. at last something I can work with. Now I don't know
I don't know who is William Weir, is he still doing some research like KDM, has he in his family some relative who have CFS?, etc...
What I know is that KDM is still doing research, read and publish articles, is in contact with wome great cfs doctors all over the world, go and participate to conventions...
So I trust him.
What i also think ( sorry for uk) is that the medecine in UK is not very good, even for " commun" disease... You have to wait a very long time for a simple operation, etc. Lots of english people come to Belgium, because we don't have delay, for medical intervention, you can choose your specialist, we don't have to ask the permission to our GP to see a specialist, etc... So, for me, an UK specialist, is not a very good reference... I am really really sorry to say that and I really hope I am wrong...
For CFS, it is different, it is like everywhere, but whe have some pioneers in the field: not only KDM.
I trust him because he save my sister's life. And because what he say seems logic, reasonable. He is not focus on one direction.
I heard from my GP, that one of his patient who went to see KDM, was diagnosed with Lyme, and after a few month of antibiotic feels beter... I don't know if that person had CFS, but, it gave me a good impression.
So, Szenn, it is a matter of trust... How do you feel when you see him? Did he gave you a good impression? Ask him about the reliability of the testing, maybe he can give you some references from articles... And then, do your choice.
But we don't have many choices unfortunately... And whe can't choose for you.
You must also ask him a full explanation about your analysis. What does low or normal CD57, nagalase, perforine, means, etc...
What is the next step? What is going to happen? What did he propose?
An example: i am now on IV ABX, and I ask him, do I have to do something special against herxing?: i gave names of supplements, etc.. He said: that one: no. That, try, for some people, it works, and he also said: do some infrared sauna twice a week, it is going to help you with your join pain...
I wish you the best
Have a nice day
If you are positive by PCR it is hard to argue with that. The LTT Elispot test is fairly new but the Lyme specialists I know regard it as a very good test--about 80% accurate.
From what I read here, UK physicians take a longish time to accept new testing and treatment. One reason probably being that the government would then have to pay for it!
Thanks Sushi and Clodimir,
The UK''s health system is complete bollox of that I am aware. just don't know enough to stand my ground with william weir. and yes, clodimir, my instincts are to trust KDM.
up at five to get train to belgium.
thanks again xx
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