In Belgium to see Dr de Meirleir

H

Hayes

Messages
9
Location
Europe
I'm happy to read some of your symptoms are improving!
Valentijn said:
My gut's doing much better ... the extra antibiotic sorted it out quite well, and switching back to VSL#3 (now marketed as Vivomixx in Europe) seems to have helped as well.
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Do you get any side-effects when you start the Vivomixx? Or when you first took it? I'm on it for a couple of days now and have got some hard headaches... Hopefully a sign things are getting sorted out and they will pass in a couple days or weeks.

Also when I received my new treatment plan it just stated "2x/day Vivomixx", but nothings about how long I should take it. I called his office and they told me "until the next appointment", but thats like more than 3 months... Do you take it that long? Just double checking, it wouldn't be the first time the communication is a little messy.
 
V

Valentijn

Senior Member
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15,786
Hayes said:
Do you get any side-effects when you start the Vivomixx? Or when you first took it?
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Nope, it's worked great for me. No problems with it.

I called his office and they told me "until the next appointment", but thats like more than 3 months... Do you take it that long?
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Yes, I started it prior to antibiotics, and stayed on it during antibiotic treatment. It's pretty common to combine antibiotic treatment with probiotics, to keep things from getting too whacky in the gut.
 
S

Solstice

Senior Member
Messages
641
When are you supposed to take in the Vivomixx, anyone? I'm on the 5th day of my antibiotics, have to start on vivomixx next tuesday. I can't find any info on when to take it and if you should take it with meals etc. on google so far.
 
V

Valentijn

Senior Member
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15,786
Solstice said:
When are you supposed to take in the Vivomixx, anyone? I'm on the 5th day of my antibiotics, have to start on vivomixx next tuesday. I can't find any info on when to take it and if you should take it with meals etc. on google so far.
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Far away from the antibiotics. I took my antibiotics in the morning and/or afternoon, and the Vivomixx right before bed.
 
Daffodil

Daffodil

Senior Member
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5,890
@Solstice if we have too much lactic acid, why did KDM prescribe Vivomixx? i looked it up and it says this contains lactic acid bacteria.?

does it have something to do with your stool tests specifically?

thanks
 
S

Solstice

Senior Member
Messages
641
Valentijn said:
Far away from the antibiotics. I took my antibiotics in the morning and/or afternoon, and the Vivomixx right before bed.
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Ok, i'm supposed to take 2x1 every day after i've ended my antibiotics course. So i guess one in the morning and in the evening will do. Thanks Valentijn and Sushi.
 
Marc_NL

Marc_NL

Senior Member
Messages
471
Hi @Valentijn

Interesting story about DML, made me consider to also pay him a visit.

Did you make any more progress these last few months?

In your postings I read a lot about the antibiotics but not so much about other prescriptions.
Do you know on what tests the 4ME and hydroxoB12 injections were based?
In which case is the 4ME prescribed or is this his treatment for everybody?

Valentijn said:
Cognitive problems largely disappeared during my first course of IV antibiotics.
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How can you tell this is not from taking the hydroxoB12?


I already have the Methylation Panel and 23andme tests done, does this save on the tests to be done by DML?
Is he even interested in seeing these both?

I am mainly interested because I want some comprehensive testing to be done and I don’t see any other place where they do these tests specifically for people with ME and can also interpret them.
Are there any outcomes from these tests with relatively easy solutions, treatable by your own practitioner?

Do you know if the tests are covered by the compulsory basic health insurance in NL or does that depend on your condition (I am not housebound, complaints are mainly neurological, migraine and PEM, so not possible to get a diagnosis so far)?
 
V

Valentijn

Senior Member
Messages
15,786
Marc_NL said:
Did you make any more progress these last few months?
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Not really, since I'm still on antibiotics. My condition has been improving when I'm off them for a week or two between courses.
Marc_NL said:
Do you know on what tests the 4ME and hydroxoB12 injections were based?
In which case is the 4ME prescribed or is this his treatment for everybody?
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Not sure if they're based on tests, symptoms, or clinical experience.

Marc_NL said:
How can you tell this is not from taking the hydroxoB12?
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B12 injections started a couple months before IV antibiotics. Cognitive problems didn't improve while on B12 alone.

Marc_NL said:
I already have the Methylation Panel and 23andme tests done, does this save on the tests to be done by DML?
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Yes, if he wants to test for the common MTHFR or VDR variations, the 23andMe data is a good substitute.

Marc_NL said:
Are there any outcomes from these tests with relatively easy solutions, treatable by your own practitioner?
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That depends on if your practitioner is willing to treat with long-term antibiotics when indicated by test results. My experience of Dutch huisarts is that they won't treat much of anything without a specialist being involved, and Dutch specialists don't want to see ME/CFS patients.

Marc_NL said:
Do you know if the tests are covered by the compulsory basic health insurance in NL or does that depend on your condition (I am not housebound, complaints are mainly neurological, migraine and PEM, so not possible to get a diagnosis so far)?
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Some of it should, but they'll deny it. It would be a huge fight to get any payment, and it would be as reimbursement, so you still have to come up with the cash for IV antibiotics, etc. I don't think they'll pay for the testing at all.
 
Marc_NL

Marc_NL

Senior Member
Messages
471
Valentijn said:
Not really, since I'm still on antibiotics.
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Wow, that's almost two years? Hopefully you can stop them soon.

Valentijn said:
That depends on if your practitioner is willing to treat with long-term antibiotics when indicated by test results. My experience of Dutch huisarts is that they won't treat much of anything without a specialist being involved, and Dutch specialists don't want to see ME/CFS patients.
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I meant an outcome where antibiotics are not needed (maybe wishful thinking :) )
 
JAH

JAH

Senior Member
Messages
497
Location
Northern California
Valentijn,

I am one of the nearly 50,000 (!) who have been following your progress over the past 2 years. So bravo to you for keeping this thread going. You have endured many travails, reported some good news, and I see that you still report your activity level as 3.

I have some specific questions but here is my bottom line question: has it all been worth it?

I am rooting for you, we all are...JAH
 
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adelheid55

Senior Member
Messages
424
Hi,
we went with our daughter to Dr. de Meirleir in October (next date is in end of January)and we are always interested (got already lots of infos in this thread and those from Justy, Drass and Snowathlete and others) in more information.
So I'd like to say thank you to all and please keep going...
 
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