The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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IVIG at KDM

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Daffodil, Aug 18, 2016.

  1. Daffodil

    Daffodil Senior Member

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    hi all. does anyone know the cost of getting IVIG at KDM's office in Belgium?

    Thanks!
    xo
     
    Marky90 likes this.
  2. Valentijn

    Valentijn Senior Member

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    You could probably email and ask. Their prices for IV antibiotics was quite cheap.
     
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  3. justy

    justy Donate Advocate Demonstrate

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    it think its about 450 euros a pop - they do it at almost cost price. Don't quote me on that because my memory is awful. I was supposed to have monthly IVIG there but couldn't tolerate travelling their monthly to have it as I was too ill so do the SCIG instead (like you were).

    If you are thinking about teaming up with me to spend time in BX then PM me and we can talk about it more - im definitely interested.
     
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  4. Daffodil

    Daffodil Senior Member

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    @justy if I hadn't bought tickets already and booked a hotel, I would do everything I could to make it happen. a big snag would be..in Reno, Ontario agreed to give me the disability cheques despite my being away, because not only did I provide a doctor's letter, but they asked me to provide proof of my getting regular treatment during the 3 months I was there. I was having infusions 3 times a week so it worked. in Brussels, I would get IVIG only once a month...they would never agree that I needed to be there.

    I keep thinking of ways you could do this. the easiest seems to be Eurovolley because you would have cleaning service, a pretty good and reasonably priced restaurant on the premises, and cheap transportation. I know you are very sick and need someone with you, though. also, I will admit...Eurovolley isn't exactly the cheeriest place to stay in for 3 months. I don't know....I am a depressive so surroundings make a big difference for me, especially being sick and all.

    wouldn't it be nice if you could stay at the fancy clinic in Slovenia? lol we need to win a lottery.

    when I called Himmunitas, they said the IVIG was over 500 Euro but I could have sworn it was cheaper too.

    xoxoxo
     
  5. Daffodil

    Daffodil Senior Member

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    @justy is it 100% necessary for you to be with someone? what if you found an inexpensive, tiny studio apartment and had meals delivered?
     
  6. Valentijn

    Valentijn Senior Member

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    Or just get groceries delivered. Most supermarkets in the Netherlands do that now, and probably in Belgium as well. The fee is usually just a few euros.
     
  7. justy

    justy Donate Advocate Demonstrate

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    I am considering it. I cant really have meals delivered as I am on a very strange diet and due to MCAS have to prepare all my food fresh.

    I have ordered food from a supermarket in BX for delivery but it was VERY hard - the websites are in French and Dutch and it was very hard getting a delivery spot - in the end we had to go out to buy food as they had no slots for a week and it took me about 4 hours to work out how to order - even then the stuff that came was all wrong. Its really hard being this ill and alone. I cant go to the shop alone as too ill most of the time - add herxing on top - it would be insane. Some days I cant cook for myself and with a canula in the arm its sometimes not possible to chop vegetables etc 9had to have help with this before)

    Plus emotionally can you imagine going through that alone - being a VERY sick wheelchair user alone in a strange city with no ability to leave your apartment alone at all and on top of that severe herxes? Not something I would think of doing really. Perhaps I am spoilt because I have a great husband at home who takes care of me....if I wasn't as sick I would do it, but unfortunately its not for me.

    Its really just some friendly companionship - to know someone is around and to have someone either to go to the shop with or to go for me and to have someone I can share meal prep with if its too much.
     
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  8. Valentijn

    Valentijn Senior Member

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    I can help with this part next time, if necessary. I'm quite fluent in food-Dutch :D
     
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  9. justy

    justy Donate Advocate Demonstrate

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    Thanks! My French is better than my Dutch, but im beginning to get used to both - I noticed last year after 6 weeks in Brussels I could look at a poster and know what it was about without translating. It obviously was worth paying attention in French class!
     
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  10. Daffodil

    Daffodil Senior Member

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    @justy may i ask how old your kids are? can 1 take 3 months off school maybe?
     
  11. justy

    justy Donate Advocate Demonstrate

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    No, not possible - aged 13 and 16 so right in the thick of exam years etc.

    Ive been thinking about it some more and basically the truth is that apart from being ill and disabled, or perhaps because of it, I haven't been out anywhere alone in 7 years. Three months alone while herxing in a foreign country is a terrifying prospect.
     
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  12. Daffodil

    Daffodil Senior Member

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    I totally understand. I am so used to doing everything myself lol

    I wonder if they are doing infusions in reno yet. I was one of the only ones to have had IV antibiotics at WPI as far as I know. I was really sick and herxing like crazy. I also had diarrhea at dangerous levels from the IV.....but I was acquainted with a couple of people in the CFS community there and they were kind enough to take me grocery shopping every week. the tiny studio I rented in a safe building ended up being very close to an organic food coop too. the bus to WPI was 25 cents and took you right to the U of NV campus so it all worked out.

    would you like me to look into whether they are doing infusions there? KDM goes there every other month (sometimes every month). also, there would be no language barrier. the language barrier is somewhat of a problem in Belgium, I agree. I could also introduce you to people there who would be more than happy to take you shopping and check in..
    xo
     
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  13. justy

    justy Donate Advocate Demonstrate

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    @Daffodil - that's so kind of you to offer - sounds like you had a tough time with the IV's? did you feel it helped you?

    I think i'll stick to Brussels - its a lot loser to home. Im going to try and come up with a rota plan and see if I can get any friends and family on board...
     
  14. Daffodil

    Daffodil Senior Member

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    @justy good idea! I had to look up "rota plan" lol

    The IV's helped I think....I mean it was needed I assume cuz I am better now than I used to be. Because my severe brain fog was disappearing with the IV Rocephin, it proved to me that bacteria was at fault and not virus. Even though it all came back after I stopped the drug, that was very valuable information to have at the time because it is what made me stick to the long treatment.

    re: French: I noticed the exact same thing when I was in Brussels for a few weeks for moms surgery. My French, which I practically failed in HS (despite living in a mostly French town lol) was coming back. A couple of times, I started speaking Frencn without meaning to!
     
    justy likes this.

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