In Belgium to see Dr de Meirleir

[Daffodil]

@Theodore @aquariusgirl ...he also prescribed 6 months of low dose subQ immunoglobulin, B12, some other supplements. I assume the antibiotics were acting against Lyme and/or other bacteria. I think we are now working on balancing gut flora. I think that my remaining symptoms are being caused by severe leaky gut, which seems to be getting worse no matter what I do.

I have gone from bedridden to being able to cook. clean, and shop for myself. I have been sick 22 1/2 yrs and am 45 so I am not sure how much better I can get...but I am infinitely better than a few years ago, when I was sure I was on the verge of death.

Some things I tried before I saw the doctor, which helped me a little, were some HIV meds and GcMAF....but Dr. DeMeirleir's treatments have made the most difference.

xo

 

[sorin]

About dr. KDM - what happens after he prescribes some medication? Is he doing regular checks at some months to see how the things evolve? What if the medication has side effects and is not tolerated by the patient? Is the medication changed on the fly? What is actually the workflow at dr. KDM?

 

[EMilo]

@Theodore @aquariusgirl ...he also prescribed 6 months of low dose subQ immunoglobulin, B12

@Daffodil Can I ask how low the low dose SCIG is? I'm on 5 grams, but have no one to compare to since it's SUCH a low dose. Also wondering if you did B12 injections?

 

[Daffodil]

@sorin ...if you need to ask a question, you have to email the office and maybe call to make sure it gets answered in a timely fashion. it still could take a week or 2. if its very urgent and its a medication side effect, you can write that in the subject line of the email.

the regular checkups are controlled by you...if you make appointments, you can talk to him. if you see him, he can take tests. usually, long distance patients have a local doctor helping them as well.

@EMilo ....i took 4 grams a month once because that was all i could afford at the time. Later, i took 10 grams a month. If it helped, it helps very subtly....KDM says it works slowly in the body.

yes, B12 is usually a part of everyone's treatment with KDM. I do it twice a week.

xo

 

[Marc_NL]

yes, B12 is usually a part of everyone's treatment with KDM. I do it twice a week

Do you know if he sees the hB12 as part of the healing or is it just for making you feel better for as long as you take it

 

[justy]

@Daffodil Can I ask how low the low dose SCIG is? I'm on 5 grams, but have no one to compare to since it's SUCH a low dose. Also wondering if you did B12 injections?

Im prescribed just under 1 g a week - very low dose, but I take half of that as if I take more I get very severe herx reaction.

 

[Daffodil]

Do you know if he sees the hB12 as part of the healing or is it just for making you feel better for as long as you take it

part of the healing..there is some reason it so important...something to do with the kindeys perhaps? sorry brain too foggy

all I remember is him saying something and then, "......that it why b12 is so important" lol I guess I zone out

 

[Marc_NL]

@Valentijn or anyone?
I received most of the results from KDM but my appointment is only in two weeks, so I’m curious if anybody has any idea’s what this means.

As far as I can see the following results are out of range:

Redlabs
AMMON Ammonia in serum 7,76 (0,28 - 3,03 ratio to normal median)
KYNA Kynurenic acid 1,43 (0,78 - 1,32 ratio to normal median)
sCD14 Soluble CD14 4279 (1430 - 2800 ratio to normal median)

IL-8S IL-8 serum 193 (0,00 - 15,00 pg/mL)
MCP1 MCP1 191 (0,00 - 165,00 pg/mL)

SeroYERSIgG Yersinia serology IgG - positive

Redlabs
slgA 17722 (510 - 2040)

Arminlabs
Borrelia burgdorferi Fully Antigen 7 (<2)
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) 3 (<2)

Blood
Triglyceriden 163 (<150)
1,25-di-OH-vitamine D3 75,6 (20 - 75)

The food allergies test show only a few minor allergies.


According to mr. Google this means Lyme ?
Are there more degrees in how bad Lyme can be and how easy it is to treat based on the results?
And the other results?

 

[msf]

I think your results are quite typical of those of a lot of KDM patients, many of whom he has diagnosed with Lyme. The good news is that if you aren´t IgA positive for Yersinia then you probably don´t have that anymore.

 

[Marc_NL]

I think your results are quite typical of those of a lot of KDM patients, many of whom he has diagnosed with Lyme. The good news is that if you aren´t IgA positive for Yersinia then you probably don´t have that anymore.

Thanks, so the IgG positive means that I once had it and the IgA negative means I no longer have it?

(sorry for my Ignorance but I never heard of Yersinia)

 

[msf]

Yes. I am IgA positive for Yersinia, so I´ve read quite a lot about it, if you have any further questions.

 

[Marc_NL]

Yes. I am IgA positive for Yersinia, so I´ve read quite a lot about it, if you have any further questions.

I know nothing about it so no idea what to ask about it also, but if there is something you think is important for me to know about it I'm glad to hear

Does it have anything to do with Lyme, when searching the internet I was sent to a Lyme forum but I still don't know what it is.

About Lyme:
Would that mean for some people that if you somehow can get rid of the Lyme that this is all there is, so no ME?
I ask this since some symptoms are so specific for ME that it's hard to imagine that there is no ME even though there seems to be a lot of overlap in symptoms.

 

[msf]

Sorry, I don´t know the answer to your Lyme questions, I doubt anyone (at least on this forum) does.

I guess you don´t need to know much about Yersinia if it seems that you don´t have it. It´s basically a stomach bug that most people get rid of quickly but that can result in chronic infection and Reactive Arthritis in some people.

 

[sorin]

@Valentijn or anyone?
I received most of the results from KDM but my appointment is only in two weeks, so I’m curious if anybody has any idea’s what this means.

As far as I can see the following results are out of range:

Redlabs
AMMON Ammonia in serum 7,76 (0,28 - 3,03 ratio to normal median)
KYNA Kynurenic acid 1,43 (0,78 - 1,32 ratio to normal median)
sCD14 Soluble CD14 4279 (1430 - 2800 ratio to normal median)

IL-8S IL-8 serum 193 (0,00 - 15,00 pg/mL)
MCP1 MCP1 191 (0,00 - 165,00 pg/mL)

SeroYERSIgG Yersinia serology IgG - positive

Redlabs
slgA 17722 (510 - 2040)

Arminlabs
Borrelia burgdorferi Fully Antigen 7 (<2)
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) 3 (<2)

Blood
Triglyceriden 163 (<150)
1,25-di-OH-vitamine D3 75,6 (20 - 75)

The food allergies test show only a few minor allergies.


According to mr. Google this means Lyme ?
Are there more degrees in how bad Lyme can be and how easy it is to treat based on the results?
And the other results?

Hi Marc!

I have the same elevated results as you, some of them even higher! The same Yersinia negative, and like you I am waiting in a couple of weeks for the consultation to see what the Professor says. What is your CD4 level? And CD8?

 

[Marc_NL]

Hi Marc!

I have the same elevated results as you, some of them even higher! The same Yersinia negative, and like you I am waiting in a couple of weeks for the consultation to see what the Professor says. What is your CD4 level? And CD8?

Hi sorin

I only see the combined CD4/CD8 which is 2,57 (ref 0,81 - 3,64) from UZ Brussel, are they separated in your case?

On this page all seems in range, also on other tests I see a lot of things in range, I don't know if this is necessarily a good thing and if this makes things easier to "fix".

Do you also have the elevated "Borrelia burgdorferi Fully Antigen" and "Borrelia b. OSP-Mix (OSPA/OSPC/DbpA)"?

 

[sorin]

Hi sorin

I only see the combined CD4/CD8 which is 2,57 (ref 0,81 - 3,64) from UZ Brussel, are they separated in your case?

On this page all seems in range, also on other tests I see a lot of things in range, I don't know if this is necessarily a good thing and if this makes things easier to "fix".

Do you also have the elevated "Borrelia burgdorferi Fully Antigen" and "Borrelia b. OSP-Mix (OSPA/OSPC/DbpA)"?

Usually CD4 and CD8 are given as individual values, but since these are in range for you, that means everything is ok at this chapter. In my case Cd4 is lower than normal and CD4/Cd8 <1 which is not ok.
Regarding Borellia, my results are even worse than yours
Borrelia burgdorferi Fully Antigen + 9 SI (normal < 2)
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) + 11 SI (normal < 2)
Borrelia burgdorferi LFA-1 + 3 SI (normal< 2)
but these Elispot tests seems to be very controversial. As much I have read, some doctors say these tests are not officially recognized and they show nothing. Others say they definitely show clear Lyme infection, even myself I was never bitten by a tick. However, it is possible that Lyme is a kind of syphilis bacteria that is transmitted in other ways, rather than tick bites.

 

[Marc_NL]

Ah, ok thanks.

Regarding Borellia, my results are even worse than yours
Borrelia burgdorferi Fully Antigen + 9 SI (normal < 2)
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) + 11 SI (normal < 2)
Borrelia burgdorferi LFA-1 + 3 SI (normal< 2)

I thought there were no degrees in "worseness" in these results and that either you are positive or not?

 

[sorin]

Ah, ok thanks.
I thought there were no degrees in "worseness" in these results and that either you are positive or not?

Since the result is a numeric value is not just - or +
One that have 5 is quite different by one that have 200!

 

[Marc_NL]

I know there is a higher number, I meant that I don't know if that makes the Lyme worse in terms of symptoms or difficulty in treatment.

 

[sarah darwins]

I know there is a higher number, I meant that I don't know if that makes the Lyme worse in terms of symptoms or difficulty in treatment.

KDM doesn't diagnose on the basis of that one test alone. He looks at a number of parameters.

As I understand it, those borrelia numbers are not an indicator of severity. Severity and prognosis are dependent on a large range of factors, including duration of illness and presence of co-infections. The doc will tell you more in a couple of weeks. Be sure to take a list of questions with you.