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My trip to see Professor De Meirleir (long post)

Daffodil

Daffodil

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justy..i agree. i was complaining about things at his office but the nurse told me it is because KDM tries to help everyone and it is very difficult. he is always traveliing, taking on more and more patients, researching, etc. once he said he would call me saturday but he ended up calling sunday...he is at that clinic almost 24/7 he said.
 
justy

justy

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I am booked in! start with hopefully some IV glutathione daily on 2nd June, will be there for three months, so maybe IVIG as well? not sure yet until I get the Professors report, but have told them I am coming and will be there until end of August.

Have accommodation booked as well in Grimbergen which is a big relief. Now I just need to raise the money. Feeling hopeful today!
 
V

Valentijn

Senior Member
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15,786
justy said:
I am booked in! start with hopefully some IV glutathione daily on 2nd June, will be there for three months, so maybe IVIG as well? not sure yet until I get the Professors report, but have told them I am coming and will be there until end of August.
Click to expand...
Cool, I'll be there on June 11th at 2:15pm ... maybe I'll see you :)
 
Apple

Apple

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So, so, so happy for you @justy ! You must feel so relieved to have a plan of action. And some *HOPE* after suffering for so long.
How did you find your accommodation? Are you staying alone? How much is this costing?

Sorry for all the questions! lol. Seeing KDM is my dream.

Wishing you all the best in your fundraising! xx
 
justy

justy

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Apple said:
So, so, so happy for you @justy ! You must feel so relieved to have a plan of action. And some *HOPE* after suffering for so long.
How did you find your accommodation? Are you staying alone? How much is this costing?

Sorry for all the questions! lol. Seeing KDM is my dream.

Wishing you all the best in your fundraising! xx
Click to expand...

Accommodation is a REALY big issue for staying any length of time in Brussels. If you are well enough to travel on public transport or drive or be alone is a bit easier as you can look a bit further afield or at studios etc which are cheaper. I need someone with me all the time to push wheelchair, do shopping, help with cooking etc and cant manage public transport unless im at my absolute best so I have succeeded in finding two bed serviced apartment near the clinic in Grimbergen.

The two nearest places to the clinic are a private apartment with two beds in Grimbergen, where some people stay as its nice and relatively inexpensive (I think £800 a month) BUT it is up two flights of difficult spiral stairs which is out for me. I am staying at the Pegasus aparthotel in Grimbergen which is on the same street. it is two beds, is serviced and has an elevator and is about £1,300 a month - but this is still not expensive for Brussels.

On the plus side Grimbergen is only about 7 minutes by car from the clinic. If like me you need taxis its the cheapest distance or there is a walk and a bus. Grimbergen itself is quiet and like a pleasant suburb being outside the ring road. Bx is madly busy and congested so its also nice to stay somewhere relatively quiet. Not sure how far shops etc are yet.

Appts with KDM are 80 euros for new patient, then add about 3,000 euros of testing. Follow up appts 60 euros, not sure how much the treatments will be yet...but I spent another 800 euros on testing last week.
 
justy

justy

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Finally booked in to the clinic for treatment. I start IV Glutathione 600mg + Atleteninfuus (what is that?) 3 x weekly for we think 3 months. I have an apartment on hold until the clinic tell me how long I will be there for.

So happy to finally be doing something and hope this will help me to tolerate the other meds I need. Am still waiting for my test results for the mold panel and Babesia to come back.

Feeling hopeful, but a lot to do to get ready to go. We are going to rent out our house for 6 weeks in the summer as a holiday let (vacation rental) and need to get it booked to help pay for the trip. My husband and two of my children will be coming out to meet me in Bx for the summer holidays, until then I am very lucky that my mother in law and then my mum will be staying with me.
 
justy

justy

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Leachim said:
Atleteninfuus = athlete infusion. I don't know what it is, sounds like some kind of infusion with nutrients helping the cells to restore their energy balance, which might be a good pick both for athletes and for ME patients.
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Sounds great - will have to wait and see what's in it.

Just hoping I don't react badly to any of these infusions - my mast cells are still playing up, but I am also on double dose H1 blocker AND twice daily H2 blocker so we will see.
 
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