Discussion in 'ME/CFS Doctors' started by szenn, Jul 15, 2013.
Well that's not different from what I've said...
Oh, sorry! I was reading your post to mean that they didn't have to return for any followup appointments after the first visit!
@szenn , thanks for popping back in to give us all an update - I have often wondered how you are getting on. My daughter has also been diagnosed with Lyme, but because she was pregnant there has been no treatment. Also she cant afford it and is breastfeeding right now so... we can only just about afford my treatment and as I am more ill and started seeing KDM first I continue limping along financially.
I would like to add that I have improved a little with treatment - although due to the complex nature and length of my illness it is painfully slow and I am sure big improvements will take years of treatment. I have developed MCAS so this makes treatment VERY hard.
BUT, even with the MCAS I have moved from mainly in bed to mainly up and about. Still housebpound, still suing my wheelchair outside, but I can cook nearly every day for my family, study, do some light housework - even a little vaccuming occasionally and 15 minutes light gardening every few weeks or so. This is back to the level I was at about 4 years ago.
Just got back from the clinic, and always feel hopeful as so many of his patients I cant to there have improvements - one guy last week was now driving himself to the clinic (200km), another was back part time at uni and out of a wheelchair. BUT most people seem to have improvements but haven't seen full remissions yet - although maybe those people don't go to the clinic anymore so we cant meet them!
My husband has been sick and KDM will do some testing next time we can afford it - he says 1 in 5 of the couples he sees the partner becomes sick...could be opening a can of worms - we have three other children too.
1 in 5 couples the partner becomes sick
95% ME patients have lyme
40(or it was 50)% have fructose intolerance
KDM has a lot of his own statistics
Shouldn't he publicate them? (real question, no irony)
Anyone heard anything about the new clinic, we've given up on Brussels. I will make an appointment as soon as this new clinic opens for sure.
i first heard Germany but then heard Slovenia
maybe like $11k for the whole treatment incl residential and food etc?
I haven't heard any details @Daffodil , just that it may be in the pipeline. The hassle of the accommodation, shopping, transport etc was just too much for me where the clinic is in Brussels.
it's no real clinic but a hotel combined with a medical center in Slovenia. KDM says they will have a nurse there who has been fully trained at Himmunitas.
They will send you information about this from Brussels if you ask.
Thanks @adelheid55 ,
so they'll give out the info once its up and running.
I have great respect for KDM don't get me wrong, but one issue I can't seem to overlook is that there seems to be a missing step in the process, it's like you get test results, speak about them, then receive a suggested treatment plan, and to begin with that is fine (especially since it tends to be self-evident at that stage), but after a while you start to want to have a bit more of a dialogue about what the rationale for certain decisions are, especially if there is anything contentious about it. I wonder how people manage this, is it just a case of firing them some questions via email? The problem with that is the answers you get back via email tend to raise more questions than they solve. I would almost like to skip any consultation prior to the treatment plan so that the consultation can cover both interpretation of the results and the justification for the proposed treatment plan.
@Vitalic I think most of his patients could recount a similar experience. I would argue that there is more than one missing step in the process; you have your consultation, eventually badger the clinic/lab for the test results, then you get the treatment plan with no further consultation or rationale for why this treatment plan has been suggested, or what's more what its intended to do. Then you go back for another consultation in three months and repeat the process.
It's issues such as this, coupled with the dire support service KDM's staff provide that lead many to accuse the clinic's practices as a whole of been non- transparent and not subject to accountability.
Have you tried asking during appointments? He's usually forthcoming.
I asked at one point if he could speculate as to what treatment he would propose based on the current data, with the view that I could at least ask any questions that spring immediately to mind, but he said he couldn't. It is understandable given he needs time to think about it but it does point to a need for a change in the approach, be it either an additional appointment or changing the timing of the appointments so that the proposed treatment can be discussed.
no matter how you feel about KDM and his methods, they work. you must just accept that there are things you will not get to know and just do what he says.
I know that might sound ridiculous to many of you but I have had several very "transparent" specialist now who took a ton of money and were not able to help me....and KDM did help me. for the first time, I am actually pretty confident that I might have a few years of a life before I die.
I agree it would be better if there was an opportunity to discuss the treatment plan, but I really don´t see that happening. KDM doesn´t have enough time to see every patient before they get the treatment plan, there´s no way he´s going to have the time (even if he has the patience) to discuss those treatment plans in detail with all of his patients. If he did that he would have to start turning patients away. I´ve found that with a little research it´s possible to make sense of most of his treatment suggestions anyway. I think there has only been about one item he prescribed that I really had no idea why it was prescribed. I mean, I understood why an antibiotic was prescribed, but I wasn´t sure why that one in particular was; with all the others (with a little googling) I could see the rationale behind them.
I am glad you are experiencing benefits from KDM's treatments. However, from reading the testimonials of his patients over the years I wonder generally speaking how many other people could attest to his methods working to the point of near full remission?
hi spider. I don't think even KDM says you will get full remission if you are being treated later in the disease and if you are beyond youth.
I met a middle-aged woman in his Belgian office last year who had full remission for 10 yrs. then, some lyme(?) symptoms started to return. she was being treated again. she was lucky in that she lived in Brussels and was treated early.
Very lucky for her living in Brussels!!
Did anyone get antivirals prescribed by KDM?
The problem is that there isn't any evidence of effectiveness for his treatments. You're always going to get people having full remission even with the most useless treatments (see liberation therapy, for example). If people are happy with that then by all means go to people like KdM. But if you want evidence-based treatment that has a fair chance of improving you without potentially spending a ton of money on useless treatments, it's probably not advisable.
You can also try a Google Site Search
Separate names with a comma.