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In Belgium to see Dr de Meirleir

Discussion in 'ME/CFS Doctors' started by Valentijn, Oct 28, 2013.

  1. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Valentijn Is the travel fridge like a cooler/ice-chest?

    I am so glad your trip is going smoothly and impressed by all your hard work and progress. You are an inspiration to me not to give up on harder days.
     
    Valentijn likes this.
  2. liquid sky

    liquid sky Senior Member

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    Hi Valentijan, so glad to hear you are doing better. I have not read this entire thread, so I have a couple of questions, if you don't mind. I understand you have Lyme Disease and are getting IV antibiotics. Did you try oral antibiotics first? Did they help you and were there side effects? Also, are you seeing side effects from the IV antibiotics?

    I ask because I was diagnosed by Igenex with Borrelia Burgdorferi, but the CDC did not consider the test positive. I tried antibiotics and got horrific spinal pain with each kind I tried. I finally gave up, but the doctor wanted me to try IV antibiotics. I was too scared to try any more. So, how is your experience going with pain in particular and are IV antibiotics easier to bear than oral ones?
     
  3. Riverview

    Riverview

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    @Valentijn it's good to hear that you are about to start the 2nd course of IV abx. I hope it goes as well as the 1st did.

    What size/litre is your travel refrigerator? I'm thinking of buying one and I'm busy looking at them online. It would be good to get a view from someone who has used them.
     
  4. Valentijn

    Valentijn Activity Level: 3

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    Well, it's really just 73 hours per week for the first antibiotics ... and yes, I was counting the hours until I could get it out :D

    Keeping it a bit raised and icing it at times also helped me avoid a bit of swelling.

    My home health care also uses a mesh bandage (bandafix) a couple gauze pads to protect the catheter, instead of giving my hand and wrist the mummy treatment. It's a lot more comfortable and less restrictive. We get them from the pharmacy.
     
  5. Valentijn

    Valentijn Activity Level: 3

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    It was nice for the car ride, and "just in case" :p We've had hotels claim to book us a room with refrigerator before, then had to go down to their kitchen and find an employee to get us B12, insulin, and VSL at various times of day :p It works very well though.
     
  6. Valentijn

    Valentijn Activity Level: 3

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    It's an electric one, also with a power cord that can be attached in cars.
     
    Gingergrrl likes this.
  7. Valentijn

    Valentijn Activity Level: 3

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    I didn't do oral antibiotics first, and haven't had any side effects from the IV antibiotics, aside from a typical Herxheimer reaction, which is unavoidable really. I drank lots of water, avoided sugar mostly, and took probiotics.
     
    Sushi and Riverview like this.
  8. Valentijn

    Valentijn Activity Level: 3

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    It's the "Waeco Tropicool TC-14FL". 14 Liters. It can also heat.
     
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  9. Valentijn

    Valentijn Activity Level: 3

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    My first infusion of IV azithromycin went pretty well. It was very busy at the clinic, so I knocked on the door and Nurse Jan got my name, checked it on the list, and had me wait in the waiting area until they were ready. That just took a few minutes, but it took 3 tries and a bucket of hot water to hit a vein :wide-eyed:

    So it took me about half an hour to get hooked up, which wasn't a big deal because I'd been planning to loiter afterward to say hi to @RML when she arrived at 1pm. The actual infusion was uneventful. I stayed on the bed-thing, sitting up, since the chairs in the IV room tilt back slightly and I need to be able to lean forward a bit with my feet up.

    At around 1pm RML's mother came in to ask if I was Valentijn, and then RML came into chat for a while which was great. A couple other people that know each other from the forum also came in, and we all sat and chatted while they were waiting to get hooked up and I was waiting to get unhooked. Lots of fun!

    It was extremely busy in the clinic at that point, so most of us were waiting a while :rolleyes: Basically a ton of people were starting up for a new course of antibiotics, including people who were there for just one day, after the clinic vacation had just ended. I didn't get unhooked until about 1:45pm, then we immediately went back to the hotel (A/C = awesome) and ordered lunch.

    It was a bit too warm in the morning at the clinic, but I started feeling a cool breeze around 1-1:30pm. So I think they leave the A/C off in the morning, and turn it on in the afternoon. Hence it might be a little warm before then, and a little cool after, which might give an indication on how to dress :p
     
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  10. Sidereal

    Sidereal Senior Member

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    A little Phoenix Rising gathering at KDM's clinic, how awesome!
     
    merylg, bertiedog, AndyPandy and 5 others like this.
  11. RML

    RML Senior Member

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    The clinic was much busier today, yesterday fairly quiet and relaxed with only a few people around. I was freezing yesterday in my shorts and vest while lying down in nurses station. But today in IV room it was kinda stuffy and airless, could have done with a/c there too.

    After i was hooked up, i wandered back out to see if u were still around, sorry i missed saying goodbye. there was quite a queue waiting to get unhooked, and i didnn't want to miss being called.
     
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  12. Valentijn

    Valentijn Activity Level: 3

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    Yeah, I wanted to get back to the hotel, get lunch, and flop :p Slept for over an hour, which felt very nice.
     
    Riverview likes this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm jealous!
     
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  14. Valentijn

    Valentijn Activity Level: 3

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    Day 2 of the azithyromycin went very well. The clinic was a lot less busy, so I got started immediately when we arrived. The drip went faster, which felt nice and cool going in, and it only took about 2 hours that way.

    The hand-wrapping wasn't as nice though ... holding my thumb against my hand, and a little too snug, so I re-wrapped it when we got back to the hotel room :p

    I'm feeling better today, after the IV. Maybe becauseI didn't have the cannula being inserted today, and/or it was only a couple hours instead of nearly 5 hours, and/or the extra fluids are helping more now.
     
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  15. justy

    justy Senior Member

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    It's so great to hear about your progress Val - SO, SO, SO HAPPY for you that you are having some noticeable improvements!:D:balloons::D
     
  16. Riverview

    Riverview

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    That's good to hear @Valentijn that you are feeling better and things went better today. I look forward to reading your posts. They are helping me prepare for my treatment on Monday.
     
    AndyPandy and Valentijn like this.
  17. RML

    RML Senior Member

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    @Riverview what time is your appointment at the clinic on Monday? If it is about the same time as me, I might see you, otherwise I will miss you there. There are others around too, but not at my times so there isn't many to talk to etc.
     
    Riverview likes this.
  18. Riverview

    Riverview

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    Hi @RML my appointment is at 10.00- what time are you there? How's the treatment going in general, how are you feeling? Did I read previously that you are moving to an apartment next week? I'm trying to get everything together but I have been feeling awful this week. I'm not sure if I'm herxing after spending 10 days on an antibiotic that KDM prescribed as part of my pre treat. Whatever is going on I can do without it at the moment.
     
    Sushi likes this.
  19. RML

    RML Senior Member

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    I am there for 1pm so I probably will miss you there. I am going ok but too early to tell yet. Nothing major reactions just a few lil niggles, but they are probs as result of tiredness from packing and trip etc. the bandage is a bit awkward to do things and it's slightly sore. But no herx's yet, I keep waiting for them but I don't know when or how to expect them!

    Sorry the pre treat is hard on you but maybe it's a good sign something is working?
     
    Riverview likes this.
  20. Valentijn

    Valentijn Activity Level: 3

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    My final IV of my week in Brussels went fine ... we arrived at 9am, and were out by 11:15am. My fiance did a little experimenting, and discovered that we could get the last drops out of the IV bag if he held it up really high :rofl:

    The IV azithromycin treatment at the clinic was a bit more expensive than the IV rocephin, which makes sense since the bigger pack of saline (500mL vs 100mL) definitely costs more, and the azithromycin is pretty expensive itself. So it was 60 euros per day, making it 180 euros for all three days.

    We also picked up 15 vials of azithromycin to bring back to the Netherlands with us, since it's not available here in IV forma nd the pharmacy can't import it. It's 37 euros per daily dose, so that adds up to 555 euros for the next 5 weeks.

    The directions for the azithromycin are all in German, which my fiance was able to read, so he helped Nurse Jan translate them. Basically it does fine at room temperature in powder form, but once it's mixed with saline it only lasts a day and has to be stored at 25 degrees Celsius and lower. It can last up to a week if stored at 5 degrees or under, once it's been mixed. So we need to get a fresh one from the pharmacy every day, instead of getting a week's supply at a time like we did with the rocephin. But luckily they can do daily home deliveries between 1 and 2pm, and the nurses arrive to start my infusions at 2pm or later.

    My fiance just got back from the pharmacy, and they're happy now and have all the info that they need. Though they also want to talk to the home nursing people as well, probably to sort out the minor details about the exact equipment that they want again. The pharmacy will prepare the azithromycin weekly, because they can store it at the proper temperature there, and my fiance can pick it up in the mornings before he goes to work - though they can also deliver it if needed (such as if he has an early meeting and has to leave before the pharmacy opens.

    I'm feeling a weird mixture of a bit better and a bit worse ... I think it's the combination of the antibiotics wiping me out a bit, and the extra fluids making me feel a bit better. I'm also having very mild vertigo when standing. Enough that things seem to move a bit, but I can function just fine if I focus on where "up" and "down" and walls really are :p
     
    Last edited: Aug 7, 2014
    justy, AndyPandy, SOC and 8 others like this.

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