The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Wish me luck I start my treatment with KDM on Monday

Discussion in 'ME/CFS Doctors' started by Riverview, Aug 9, 2014.

  1. Riverview

    Riverview

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    It's getting late now but I'm still packing for my 12 week stay in Brussels. I have found this lead up to the start of treatment a very stressful time.

    Besides getting the mind right it's getting all the other ducks in a row that seems impossible on some days. However I think I'm there, tomorrow I'm flying to Bru and then Operation Get Well will swing into operation! That's what I have been calling it just to keep geeing myself up.

    I realise that some of you will be following me on this path at some stage. If I can be of any help to you please let me know. Providing I am holding up that is. I will try and post as regularly as possible and keep it as interesting as I can. Famous last words!
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    @Riverview

    Wish you the best! :thumbsup:

    Please keep us posted on how it goes for you.

    Sushi
     
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  3. RML

    RML Senior Member

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    @Riverview Good luck and maybe see you around the clinic at some point.
     
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  4. AndyPandy

    AndyPandy Making the most of it

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    Best wishes @Riverview. Good luck with Operation Get Well :)
     
  5. Daffodil

    Daffodil Senior Member

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    Good luck Riverview! Keep us posted!
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Best wishes to you @Riverview and I look forward to reading about your journey.
     
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  7. *GG*

    *GG* Senior Member

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    Hope it goes well!

    GG
     
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  8. maryb

    maryb iherb code TAK122

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    @Riverview
    I have everything crossed for you that things go well. You're a pioneer although you probably don't feel like that at the moment. Once you're in your hotel room and settled you'll feel much better. Just the clinic stuff then, which from the sounds of it is the easy bit!! best wishes to you.
     
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  9. snowathlete

    snowathlete

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    Good luck!
     
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  10. Hanna

    Hanna Senior Member

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    Wish you a successful treatment with minimum stress!
     
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  11. filfla4

    filfla4 Senior Member

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    Hope to meet you at the clinic Riverview!! I'm the one going through the clinic with my bodyguards :) (actually my two teenage sons who are also having treatment). Please send me a message if you need anything.

    Bea
    x
     
  12. justy

    justy Donate Advocate Demonstrate

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    Operation Get Well is GO!

    Hope all goes smoothly. I will be behind you by a couple of months I imagine.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    That is so great!! Good luck and GET GOING ON GETTING WELL! Reports must follow.
     
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  14. Riverview

    Riverview

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    The First Week

    Day 1 of IV abx treatment. My appointment was at 10.00am and that time stays the same for the 1st 6 weeks unless it doesn't suit then you can change at reception,

    The abx is Rocephin and takes about 45 mins for the infusion. The clinic was so busy - the waiting room full of new patients and the IV room that seats 10 patients only one or two seats unoccupied.

    I took a paracetamol before I left the hotel to help with the pain I was anticipating while having the cannula fitted. On arriving at the clinic you report to reception then go to the nurses room to also let them know that you are there. The nurse asked me to lay on a bed and put a strap around my chosen arm to help in deciding which vein to go for. The cannula went in without any problems- thank goodness. The drip bag was connected and I took a seat in the IV room. Once the drip has stopped you close the drip off and go back to the nurses room to have it removed.


    The cannula is covered with gauze and then a bandage is put on top. You're not allowed to get it wet.
    I started the day feeling quite foggy but after the infusion my head felt much clearer. I also felt very tired but that I'm sure had a lot to do with all the preparation for this trip.
     
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  15. Riverview

    Riverview

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    Day 2 of IV abx treatment

    Not as busy today . Yesterday I noticed that there were 3 or 4 camper vans in the car park and they were still there today. I let reception and the nurses know that I was there. I took a seat in the IV room and waited for them to bring in the drip bag. One of the nurses came through in 5 or 10 mins- she took off the bandage connected up the drip bag. After 40 mins the drip had finished one of the nurses removed the drip and re bandaged my arm.

    As I am staying at Eurovolley Centre I use the shuttle bus to drop me off and collect me. My daughter has accompanied me for 4 days in Brussels so we decided to explore a bit while she is here and take a bus into town. There are 2 buses that run on this route 820 & 47. It is a 10 mins walk from EVC walking out the back entrance down Italie Laan (road). The name of the bus stop is Twee Leeuwenweg -for the return/way back so you know where to get off. The fare is 2 euros single on 820 and 2.50 euros for a jump ticket /return on 47. The trip takes about 10 mins and the stop to get off in town is the Kerk (church). Just across the road from the bus stop is a Lidl and a C & A.
    We bought a few things then hopped on the bus and went back to EVC.

    My arm was a bit sore today probably doing to much. I laid down for 1/2 hour when I got back and had a nap.
     
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  16. Riverview

    Riverview

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    Day 3 of abx treatment

    Noticeably quieter today- I was a bit earlier I got there at 9.45. One of the nurses connected me up. I asked if one of them would give me a B12 injection and she said no problem the charged would be 5 euros.

    I went to the pharmacy yesterday and bought 3x week of B12s. I have been having B12 injections in the UK but not nearly as powerful as the Belgium ones.

    Once the drip had stopped I had the B12 injection. I got into the shuttle and went back to EVC. By the time I got back I was in agony. My daughter quickly filled up a hot water bottle . I took 2 paracetamols and started alternated with hot water bottle and an ice pad. It took 2 hours for the pain to go. I don't think I could bear having 3 of these a week!
     
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  17. Riverview

    Riverview

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    Day 4 of abx treatment

    I couldn't wait to get to the clinic today in anticipation of having the cannula out. The drip went through with no problems. I spoke to Jan (nurse) about the painful B12 injection and he said often that is the case as the B12 is infused in oil? I was hoping to hear a something more positive a little tip! I also asked for an Atleteninfus + Glutathione infusion ( it's referred to as a cocktail by the old timers). It contains Magnesium, Glutithione, B12 (not enough to forgo the injections-I asked). The cost is 60 euros. It is a pink infusion and takes about 30mins to drip through.

    I found it quite painful and once it had been removed and my cannula was out I asked why it was so sore. Jan said that sometimes the magnesium irritates the veins and the flow into the vein should be reduced. He said I should have told them not suffered in silence. I know for next time.

    I am very happy the cannula is out until Monday- it feels fab. Back to EVC and have a shower and wash my hair- a marvellous thought. I have the next few days off- can rst up a bit and prepare for next week.
     
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  18. Helen

    Helen Senior Member

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    Hi Riverview,
    Thanks for sharing. Could you buy B12 Iwithout a prescription in Brussels? Was it mekobalamin? May I ask about dose and price?
    (It has been possible before, maybe still, to buy MeCbl in Spain without a doctors prescription).
     
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  19. Riverview

    Riverview

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    Hi @Helen yes you can buy B12 without a script. The cost is 8.50 euros for a pack of 3. It is Hydroxocobalamine. Dose 10mg 3 amp of 2 ml
     
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  20. Helen

    Helen Senior Member

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    Thank you very much for this information.
     
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