In Belgium to see KDM

[Daffodil]

hi maryb. i'm sorry that happened. did kdm say what you should do next? have you tried gcmaf? antivirals?
xoxo

 

[maryb]

thanks daff
No - he did say at first gcmaf and then changed his mind, he wants me to go over again but to be honest its such a trip I don't think I will, I don't know what else he can test for. Just think he went down the wrong route with me - zoonosis testing and all negative except parvo which most of us have anyway.

 

[Vojta]

thanks daff
No - he did say at first gcmaf and then changed his mind, he wants me to go over again but to be honest its such a trip I don't think I will, I don't know what else he can test for. Just think he went down the wrong route with me - zoonosis testing and all negative except parvo which most of us have anyway.

When I first visit him three years ago he also prescribed me antibiotics for bacterial overgrowth in gut and some other things which didn't work. This year he diagnosed me with bartonella and possible lyme and he's treating me very differently. I just want to say that his understanding of this complex is more advanced every year and he isn't afraid to change hypothesis if it's necessary. I'm not getting better so far (actually I'm little worse because still herxing) but my blood tests show that this treatment is doing something and it's big change for me. I would recommend to visit him again at least once every few years.

 

[Vojta]

By the way I'm visiting him again on 5th of August. Anyone in Brussels at that time to chat?

 

[snowathlete]

By the way I'm visiting him again on 5th of August. Anyone in Brussels at that time to chat?

Ill have to check but I think I am seeing him the same day!
Sounds like we have the same sort of diagnosis, treatment etc too.

 

[cigana]

thanks daff
No - he did say at first gcmaf and then changed his mind, he wants me to go over again but to be honest its such a trip I don't think I will, I don't know what else he can test for. Just think he went down the wrong route with me - zoonosis testing and all negative except parvo which most of us have anyway.

Hi maryb,
Just to let you know, I was negative for zoonoses too initially. It took 3months of antibiotics to bring them out and test positive.

 

[cigana]

Hi

Anyway here I am, right now in Belgium. Saw KDM today, he was very friendly, very chatty and said he thought I had Bartonella and probably Lyme disease. (I do have a cat! but London is not exactly Lyme country....although I have removed ticks from my cat and been scratched by him....I don't remember a bull's eye rash though)
/

I live in London too, so I was surprised when I tested positive with KDM for zoonoses including bartonella and lyme.

 

[heapsreal]

Hi maryb,
Just to let you know, I was negative for zoonoses too initially. It took 3months of antibiotics to bring them out and test positive.

can u explain abit more? So one can sometimes need to treat it to see if it comes out and be found in testing?
I know they use to say one had to be off antibiotics for a certain length of time, 3 weeks rings a bell, before one can test for mycoplasma.
interesting subject.

cheers!!!

 

[cigana]

can u explain abit more? So one can sometimes need to treat it to see if it comes out and be found in testing?
I know they use to say one had to be off antibiotics for a certain length of time, 3 weeks rings a bell, before one can test for mycoplasma.
interesting subject.

cheers!!!

Hi heapsreal,

Yes, it is well known in the lyme community that some people do not test positive until they are treated with antibiotics for a period of time (usually months as far as I know). This fact has emerged over the years as a result of doctor's experiences, and is a "trick" used by many. After that, they suggest you should not retest immediately, but rather wait a couple of weeks before testing.

This is why a clinical diagnosis is often made in the first instance. I have heard it said that it is usually the sickest patients that fall under this category.

I am not sure of the reason for this, it may be related to the fact that antibiotics can release borrelia from the tissues into the bloodstream, or that antibiotics can force a change in the bacterial form of borrelia (of which there are 5, I believe).

 

[szenn]

It has been 7 weeks since I saw KDM. Does anybody now how long results take? I was told 6-8 weeks. But then I noticed that snowathlete had to wait 16 weeks for his lyme results and 8 for other results. is it unusual to get lyme results back after 8 weeks?

 

[Lymelight]

Hi Szenn,

For some tests it can take time to get the results (up to 8 weeks I was told) because the lab waits to get sufficient samples to perform the tests. But normally for the Lyme test (Borrelia Ellispot LTT) performed in Infectolab in Germany you get the results within 2 weeks. You should call or mail Himmunitas and ask them to email you the results they already got. They don't send it systematically and if you don't ask you will have to wait for your next appointment to get them.

 

[szenn]

Hi Szenn,

For some tests it can take time to get the results (up to 8 weeks I was told) because the lab waits to get sufficient samples to perform the tests. But normally for the Lyme test (Borrelia Ellispot LTT) performed in Infectolab in Germany you get the results within 2 weeks. You should call or mail Himmunitas and ask them to email you the results they already got. They don't send it systematically and if you don't ask you will have to wait for your next appointment to get them.

Thanks Lyme
Are you a patient of KDM ?
Are you being treated for Lyme? If so, how are you feeling?
I have started to get a stiff neck and arthritis like pains in my fingers.

 

[Lymelight]

Thanks Lyme
Are you a patient of KDM ?
Are you being treated for Lyme? If so, how are you feeling?

I've been tested positive for Lyme in June but i'm not treated yet. KDM wanted first to have more testing for my immune system + lactose/fructose intolerance and food allergies etc... I did the tests in July and I'm also waiting for the results. I see KDM in ten days and will see then what will be the treatment ( if any ...)

 

[szenn]

I've been tested positive for Lyme in June but i'm not treated yet. KDM wanted first to have more testing for my immune system + lactose/fructose intolerance and food allergies etc... I did the tests in July and I'm also waiting for the results. I see KDM in ten days and will see then what will be the treatment ( if any ...)

Why wouldn't there be treatment?
Have you been ill long.
I'm back to see KDM on the 17th

 

[Sushi]

It has been 7 weeks since I saw KDM. Does anybody now how long results take? I was told 6-8 weeks. But then I noticed that snowathlete had to wait 16 weeks for his lyme results and 8 for other results. is it unusual to get lyme results back after 8 weeks?

It depends on the tests that were done. The stool testing is one that can take a long time. I think my Lyme testing (PCR) took about 6 weeks though Infectolabs was about 2 weeks. Infectolab will email your results to you directly if you ask.

Generally KDM will wait until all the tests are back, analyze the results, write a report and then send you all your test results with his report. This can take more than 6 - 8 weeks, depending on the tests done, his travel schedule, etc. I've noticed that it takes longer for new patients to get their reports. Perhaps because more tests are done and it takes longer for them all to be analyzed.

Best wishes,
Sushi

 

[szenn]

Thanks Sushi
Did you get your results back

 

[Sushi]

Thanks Sushi
Did you get your results back

Yes, I have been seeing him for a few years. I got my last report and copies of lab tests in about 7 weeks. But after my first visit it took much longer.

Best,
Sushi

 

[szenn]

Yes, I have been seeing him for a few years. I got my last report and copies of lab tests in about 7 weeks. But after my first visit it took much longer.

Best,
Sushi

I know you have been seeing him a while. We spoke on chat.
I remembered you were waiting for results, I just thought they might be in now.
Thanks for your replies, always informative

 

[Thinktank]

Can anyone who has seen dr. Meirleir tell me which labs and tests he uses?
So far i know he uses redlabs and infectolabs.
Fructose / lactose intolerance in the clinic.

Anything else?

 

[Sushi]

Can anyone who has seen dr. Meirleir tell me which labs and tests he uses?
So far i know he uses redlabs and infectolabs.
Fructose / lactose intolerance in the clinic.

Anything else?

I sent you a conversation as he uses many different labs depending on the patient's symptoms.

Sushi