Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Appointment with KDM & prescriptions

Discussion in 'ME/CFS Doctors' started by collie, Feb 15, 2017.

  1. collie

    collie

    Messages:
    30
    Likes:
    63
    Hi,

    just posted in the introduce yourself forum, after 4 years of terrible health and getting nowhere with the Iris medical establishment I have booked an appointment to see KDM, due there on the 12/13th of April. I've read through all the posts here of peoples experiences and the progress some have made attending him so I am eagerly awaiting the appointment although my bank balance isn't :).

    I know I am probably being presumptuous here but if he does find something and prescribes a treatment plan how do people fill the prescriptions. I know my GP will help out but reading some peoples protocol not sure all is available in Ireland and importing drugs is a no no with customs in Ireland. Again I know I haven't even been tested by him yet but would hate to spend all that money on tests get a treatment plan and not be able to fill it. Any advise people with experience could give would be appreciated.

    thanks
    colm.
     
    Jennifer J, justy and Knockknock like this.
  2. Knockknock

    Knockknock

    Messages:
    212
    Likes:
    124
    I heard alot about this KDM?? Who is that a doctor?? Irleland?
    Are you on treatment now of any kind?
    Have you ever been tested for viruses?
    Mycoplasmas?
    Your onset started 4 yrs ago??
    Any diagnostic?? Me? Cfids? Etc...???
     
  3. collie

    collie

    Messages:
    30
    Likes:
    63
    Hi Knockknock,

    I posted in the introduce yourself forum so didn't want to start posting the same here. I was given a diagnosis of post viral chronic fatigue over here in Ireland but I would say that diagnosis is worthless more based on ruling out everything else. I had my galbladder removed 5 years ago and had tummy problems, caught a stomach bug from my kids 4 years ago that never went away and then collapsed 3 years ago with what they are calling post viral chronic fatigue syndrome. I have been tested for viruses and lymes but again this was carried out by an infectious disease specialist in Ireland he did use labs in europe but not sure how accurate or up to date the testing is hence why I am going to go to Belgium to see Dr Kenny De Meirlier (KDM)

    thanks
    colm.
     
    Knockknock likes this.
  4. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    Hi, if you are in Eire then all prescriptions from the European Union are valid and legal. I find that local independent pharmacies are better at accepting the prescritpitons - some chains deny they are legal.

    Some of the drugs may not be possible to source, or they may be mire expensive. You wont get any prescriptions on a first apt, you have to wait for treatment plan etc to come through. If you attend in person for a follow up you can ask the reception staff to organise your prescriptions and plan to be given to you before you leave and then go fill them at the pharmacy opposite the military hospital, near the clinic.

    Sometimes I allow two days in Bx in order to sort this stuff out as sometimes they have to order things. I believe some pahramcies will send by post, but I don't know anything about this - others may know more.
     
    ukxmrv, Knockknock and Jennifer J like this.
  5. collie

    collie

    Messages:
    30
    Likes:
    63
    Thanks Justy yeah would be great if I could get most of them in Ireland as we have a scheme were you only pay maximum €140 per month for your prescription meds the rest is government funded. I know prescriptions etc is very far away given I haven't even had my appointment yet but was just worried in case it proved impossible to get them here.
     
    Knockknock likes this.
  6. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    Will the prescription scheme cover meds from a private Dr in another country?
     
  7. collie

    collie

    Messages:
    30
    Likes:
    63
    Not sure but I can get my GP to rewrite the prescription so they would be available :)
     
    justy and Knockknock like this.
  8. Knockknock

    Knockknock

    Messages:
    212
    Likes:
    124
    Did they tested you for any of the well know viruses associated with Me/cfs??
    Like hhv6,ebv,cmv,hsv1-2?? , coxackie? Mycoplasmas??
     
  9. collie

    collie

    Messages:
    30
    Likes:
    63
    Not sure if I was tested for all of them, definitely CMV & EBV, I had a bad case of EBV when I was 16 layed out for about 8 months with it. But again not sure on the tests they used as this is Ireland and in terms of upto date medical testing in this field it is a backwater. That's why I've decided to head over to Belgium.
     
    justy likes this.
  10. Spiderbaby

    Spiderbaby

    Messages:
    10
    Likes:
    7
    Hi Colm,


    Also an Irish KDM patient for a number of years. Most of the prescription medication he has prescribed for me to date has been available in Ireland, although some of it falls into the categories such as of "unlicensed" or "high tech" prescriptions which would involve a bit of work for the pharmacy having to order it from a supplier or having to get the nod from the HSE before dispensing it on the Drug Payment Scheme.
    The real issue is not the medications prescribed, its the duration for which they are prescribed for. If its just a course for a couple of weeks there would be no issue getting it rewritten by your GP, however if something like Lyme pops up, long-term course of antibiotics will usually be recommended and this can be very problematic for your GP to prescribe no matter how supportive they are.

    There is a pharmacy in Belgium who works with international patients of KDM if they are finding it difficult to source meds in their own country, but as you said that can pose its own difficulty with customs.


    The main thing is you have a GP who understands your situation and will support you choice to travel to see KDM, if you need anymore information or help don't be afraid to ask!
     
    Valentijn likes this.
  11. collie

    collie

    Messages:
    30
    Likes:
    63
    Thank you so much for the reply spiderbaby a bit more reassuring to know someone from here is going through the process. I have spoke to my Gp and he has committed to help but I will reiterate it could be long term abx.

    Can I ask how you have you seen any improvement since you went to see KDM also how often do you head over.

    Thanks again
    Colm
     
  12. gregh286

    gregh286 Senior Member

    Messages:
    594
    Likes:
    824
    Londonderry, Northern Ireland.
    HI @collie
    I am from Ireland (northern) also.
    I was with KDM 2 years ago.
    Dont build your hopes up.
    From what I can see mostly everyone gets lyme disease diagnosis.
    He prescribed me 10mg shots of b12, cost £700 on top of a ton of antibiotics, but the script he writes is good enough for any euro pharmacy.
     
  13. collie

    collie

    Messages:
    30
    Likes:
    63
    Thanks Greg way to put a downer on my day :p. I've actually read some of your posts and am familiar with your story (hope your doing ok). If he does diagnose me as having lymes at least I'll have a diagnosis after 4 years and tens of thousands of euro later :D.

    I try not to get my hopes up after having them dashed by so many doctors and consultants over the years. The only thing I am holding on to is I have never suffered with PEM I have worked throughout my illness apart from several stays in hospital I just feel so toxic all the time. Also had the galbladder out at 32 which for a bloke is very young was inflamed and had stones and polyps so now starting to wonder if I have some god awful virus that infected that and given the stress I put on my body starting up my business was the body not able to cope.

    thanks
    colm.
     
  14. gregh286

    gregh286 Senior Member

    Messages:
    594
    Likes:
    824
    Londonderry, Northern Ireland.
    yea i know all about it.
    spent 7k euro with him and then another at least £15,000 with hale clinic in london....
    at the end up, £30 prescription of LDN , aminos acids and lactoferrin done the job.
    yes, I am still 80-90% functional.
    colds and flus still take longer than average to clear, suggesting I have more balancing to the TH1 side to do.
    Only good thing about going to KDM you will have a baseline NK cell count.
    If you dont have PEM and able to work throughout then maybe a CFS/ME diagnosis does'nt fit the bill, it would be very unusual to work with ME/CFS, unless you consider yourself in mild category.

    It may also be the case KDM is a good fit for you as you appear to be coming into CFS via viral or bacterial insult. If you have a lingering virus or bacteria hes your man. Thats his field, infectious disease.
    Mine was a slow progressive non viral/bacterial type of onset.

    He will treat you as an individual, listen to your medical history. unlike docs here.
    Hope it works out for you.
     
    arewenearlythereyet likes this.
  15. collie

    collie

    Messages:
    30
    Likes:
    63
    Pretty sure its infectious picked up a tummy bug off the kids and all hell broke loose in the space of a year, the clincher was a knee op that I woke up from feeling like crap in the space of 4 weeks pretty much collapsed.

    Felt great on arteminisin for 3 weeks was unbelievable didn't think I would feel that way again but didn't last (in fairness it was coming up to christmas and I confess I ate crap for those weeks bringing clients and staff out for meals etc) so thats why I'm leaning towards bacteria/virus also have parasites Dientomoeba Fragilis so will speak to him about that and try and get rid of that one.
     
  16. gregh286

    gregh286 Senior Member

    Messages:
    594
    Likes:
    824
    Londonderry, Northern Ireland.
    You should try SBO (like garden of life ones probiotics)
    Lactoferrin pure weapon against parasites also, especially gut.
    Bring your wallet to belgium anyway :)
     
  17. collie

    collie

    Messages:
    30
    Likes:
    63
    Thanks Gregh can I ask what SBO means? I started on colostrum but will add in lactoferrin as well. KDM might have to take an IOU with all the supplements etc I'm buying. :)
     
  18. gregh286

    gregh286 Senior Member

    Messages:
    594
    Likes:
    824
    Londonderry, Northern Ireland.
    Soil Based Organism,
    Primal Defense make them
    Get them on amazon.
     
  19. collie

    collie

    Messages:
    30
    Likes:
    63
    thanks :thumbsup:
     
  20. Marc_NL

    Marc_NL Senior Member

    Messages:
    471
    Likes:
    1,376
    Do you mean £700 just for the B12 shots?

    I don't know in the UK but if you buy it in Belgium you can buy a loooooot of shots for that price:
    http://www.apotheekverschaeve.be/nl/hydroxocobalacet-amp-15-x-3x10mg2ml
    That's about €2,80 per shot.

    For me the tests were the most expensive part, especially the first round of tests, later he only tests the irregularities and it becomes more affordable.
     
    keenly likes this.

See more popular forum discussions.

Share This Page