Discussion in 'ME/CFS Doctors' started by szenn, Jul 15, 2013.
The front of my shins are killing me. Is this a herx?
I'm wondering if anyone is getting reimbursed (paid) for the visits, tests or treatments which KDM prescribes by your own insurance now as you can visit doctor in another EU country because of new reform?
Doesn't sound like a herx. Why not contact KDM by email and let him know.
Can you explain more about this Sebby? Which country are you in? Does this apply to all EU member states?
Hi everyone- I got my results and diagnosis last week: late stage Lyme disease. KDM told me my case wasn't a 'twijfeldossier', a case in which he had any doubt whatsoever. My PCR was positive for Lyme, so was the LTT, but only slightly positive indicating that as he said: it had been in my system for about 20 years. He is right - I got bitten by ticks 18 years ago!! I now have to decide on treatment. He gave me 3 options: 1. intravenous, 2 'normal' long-term antibiotics, 3. 'bacteriostatic' option - antibiotics plus herbal microbials. I was quite overwhelmed during the appointment, and he basically said I should think about it, then decide. He also told me that the results are more or less the same: over 75% of people feel better after 2 years of treatment, about 88% of people feel better after 3 years. The difference lies mainly in how fast you want to get better (but faster also means getting agressive treatment, and getting a lot worse initially).
I sent him an email yesterday with a lot of questions about the differences between the treatment protocols. Do any of you (Sushi / anyone?) know whether he answers these emails promptly, or do I need to be patient. Also Szenn, you mentioned you spoke to him on the phone...how did that work? I am not sure how to contact him...the secretaries said: wait for his email reply.
Szenn, how are you doing?
Sebby - looks like my health insurance covers the consultations because of the EU regulations. Not sure yet about the medications....
which country are you in? does it cover travel/tests costs too? I think the tests are the big bills to cover.
The Netherlands. I am not expecting the tests to be reimbursed...will try though. So, probably yes to the 80 euro consultation, no to the thousands euros of tests!
Sorry to hear you have late stage lyme disease but at least you now have something to work on!
How long did you have to wait to get your test results back?
Well there was lots of media attention to these new EU regulations but I don't know anyone who actually went to another country to get treatment. I don't really know how to proceed should one be referred to the doctor aborad (for example KDM) in order to be covered or how? What about the tests or the treatment?
Almost 90% feeling better with Late stage Lyme.. I wish this was really true. Maybe yes if Lyme is truly causing person's problem but it often doesn't and people are given ABX when Lyme is not the root problem
I've gotten urgent treatment abroad (somewhat different issues) and my Dutch insurance paid for the visit to a licensed Naturopathic Doctor and the prescribed supplements after we filled out the proper form and sent it in.
No idea if we have to be referred to the foreign specialists by our Dutch GPs, or simply show that there's no treatment available in the Netherlands. I don't think Dutch doctors ever refer out of the country, so that seems unlikely. And it's quite easy to show that there's no treatment for ME/CFS in the Netherlands, aside from "go see a psychiatrist".
But I think it's worth trying and fighting for, if only to show that there are treatments available and that we are not going to give up on seeking them just because the Netherlands has adopted the psychological model of illness.
It took 7 weeks to get the test results...
Sebby - he treats more than just Lyme. For me, he also found gut inflammation/ infection, and chlamydia pneumonia - another nasty bacterial infection. I don't know about the success rates, all I know is that I am in the right doctor's office.
When you'll go over to Brussels are you going to try to get reimbursed? I'm wondering to whom exactly should I go in my own country to get reimbursed? I presume I should handle these things before going to Brussels.
Here's an official site with a not-quite-sufficient explanation of costs being covered in other EU countries:
From what I can see, one reason that they must reimburse is if the waiting time in the country of insurance is excessive for the condition. Since there's no treatment at all in the Netherlands, the waiting time is certainly excessive.
Prior authorization can only be required for hospital care.
Sudden illness (urgency) cannot be a requirement.
From what I can see, you need to get an S2 form from your insurance company. It doesn't need to be approved before treatment, unless you are getting treatment at a hospital. But they might not approve expenses for reimbursement, or it might need to be appealed.
I've finally just had my blood results back from my visit to Brussels in
Just to remind you, I was positive for Borrelia by PCR and confirmed by
DNA sequencing. I had 4 weeks of IV ceftriaxone, followed by 8 months
of abx (doxy, azithro and plaquenil). I finished the treatment last May
and spent the summer being abx-free.
Well, I'm now negative for Borrelia by both PCR and LTT-Elispot. I'm not
sure what to make of it: whether I've managed to clear it or whether the
bugs are just not active enough to be caught.
I've always tested negative for other co-infections like Bartonella but
lo and behold I'm now positive for Chlamydia Pneumoniae! I've been
reading up on Cpn Help and am getting really confused!!
Himmunitas don't normally release the results until the Prof has had time to review them and write
a full report detailing his protocol. It so happens that he's in the US
at the moment. So I managed to get my results without his report. I
have a telephone consultation with him on the 27th so I'll probably get
it before that.
Before I started the treatment by CD57 was 29. It's now gone up to 41
(on a range of 60-360). So it's better but still not ok. My
inflammatory markers are very high:
sCD14: 3993 (1430-2800)
IL-1betaS: 5 (0-3)
IL-6S: 10 (0-5)
IL-8S: 7610 (0-15)
MCP1: 174 (0-165)
MIP-1BETAs: 431 (0-155)
Tgf-BETA1S: 21199 (1674-12400)
I'm getting the sense that the treatment for Borrelia is very similar to
the treatment for Cpn. I'm dying to know what KDM is going to
Any thoughts anyone? Anyone with experience of Borrelia together with a
Would any of you fellow KDM patients be willing to share your results for inflammatory markers, like those above, just so that we can compare? Am I the only one with such high markers? !!!!!!!!!
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