My trip to see Professor De Meirleir (long post)

[justy]

KDM says I only need to go for 6 weeks which is great as it means we can spend the summer at home! Kids were a bit upset about spending all summer in Brussels and it will be cheaper so wont need to rent the house - less wprk all round. So relieved.

 

[Helen]

@justy, I am really happy to hear that something will be easier than you first thought.

 

[Hanna]

KDM says I only need to go for 6 weeks which is great as it means we can spend the summer at home! Kids were a bit upset about spending all summer in Brussels and it will be cheaper so wont need to rent the house - less wprk all round. So relieved.

Great !

 

[justy]

Latest labs back.
Good news is I don't have Babesia!
C3a normal
mold panel all negative - good news also
C4A - Low - don't think this has any significance, in Lyme is usually high I think.
Elastase normal
Midichloria mitochondrii - negative - also good.
D Lactate - slightly raised - 2.42 lab range 0.00 - 1.66 don't know what this means really.
VEGF - normal
Tularemia (Francisella) says Low Positive, then next to that Negative - this is the same as my Bartonella testing which was a low positive but KDM treats this as a positive, but chronic and immune system not working well enough to show a good positive.

Really hope I don't have this - apparently its not possible to get it in the UK, although it is in Europe. Apparently cross reacts in the lab easily with Brucella so does this mean I could have that instead? (which could make sense as I have the symptoms of Brucella and have in the past drank a lot of unpasteurised milk.

So good news, but maybe some bad?

 

[Gingergrrl]

@justy that is great news! Just curious what mold panel KDM uses for his testing? Is it Real Time Labs or a Belgium lab or something else?

 

[justy]

@Gingergrrl
He uses the Redlabs panel in Belgium:

 

[JaimeS]

@justy , still waiting for my own lab work to return, and the wait is next door to painful! ........

You and I sound like we have nearly the exact same 'flavor' of ME, down to the lower right quadrant pain and the reactions to SSRI-like substances (and De Meirlier's belief that it's Lyme). The only difference is that my body LOVES B-12 and if I could simply get a shunt in my arm that delivered a constant stream of it, my health would probably improve drastically.

I took 5-HTP at one point, and my reasoning was the same as De Meirlier's: if you take 5-HTP, your body can 'choose' the rate at which it wants to make serotonin, which seems less likely to lead to a build-up or negative reaction.

Unfortunately, that turned out to be incorrect. I took two 100-mg pills 24hrs apart and, at the second dose, had the same reaction as I'd had to serotinergic compounds in the past. This was not a high dose, but the dose that was sitting on the shelf of my local natural foods store. My reaction is quite similar to the way you described yours.

Two thoughts:

• Start VERY LOW with the 5-HTP (divide the pill into 1/8ths, or even 1/16ths)

• Use tryptophan instead, only 10% of which should become serotonin.

After my reaction, I was too scared to try, but those were the thoughts I had.

Also, here's a list of what I take. With such similar patient profiles, maybe some of these could help you? It's clearly marked what contains B-vitamins.

I do hope you feel better!

-J

 

[justy]

still waiting for my own lab work to return, and the wait is next door to painful

Yes it can take a long time - months of waiting for everything to come back. If you e mail the clinic in Belgium (Sushi may know who to deal with) and ask them to e mail you the test results as they come in then they will do that and then they come sooner than waiting for KDM's whole report.

 

[JaimeS]

@justy - thanks; I'll do that.

@Sushi, is it possible for you to PM me regarding who that would be?

Thanks to both of you.

-J

 

[Sushi]

@Sushi, is it possible for you to PM me regarding who that would be?

Sorry, I don't know what post you are referring to. If you quote the part of the post you are asking about )by selecting it and then clicking on reply under the selection), then I can respond.

Thanks!
Sushi

 

[JaimeS]

@Sushi :

If you e mail the clinic in Belgium (Sushi may know who to deal with) and ask them to e mail you the test results as they come in then they will do that and then they come sooner than waiting for KDM's whole report.

I sent a message to Charlotte already, but if she's not the right person (and you know the right person!) please let me know.

Thanks,

J

 

[Sushi]

I sent a message to Charlotte already, but if she's not the right person (and you know the right person!) please let me know.

If you see KDM in Reno, I believe Charlotte is the person. However, if she is not, she'll tell you who to contact.

I have never asked for my labs "as they come in" as interpreting them is too complicated for me, and the interplay between them is also important. I just wait for his report and if I have questions, ask him.

Sushi

 

[JaimeS]

@Sushi - thank you!

It's easier for me to assimilate it bit at a time. Then I'm not so overwhelmed when I receive a stack of results.

-J

 

[justy]

I like to get mine in, have a think about them and then decide what im going to ask him about. This time I have already received the treatment plan before he got the results back, so I don't know if they will be writing to me again with his interpretation of th results? I have an apt with him in June, so it wont really matter anyway.

 

[msf]

Hi Jaime S and Justy, am I right in thinking that you both have lower right quadrant pain but are negative for Yersinia?

 

[justy]

@msf I am negative for Yersinia, but not sure I have lower right quadrant pain - maybe f you push hard? I have had lower left quadrant pain for many years - but the right is usually ok. Having said that KDM found an area on the right of my stomach that did hurt like hell - I presumed this was my 'immune spot' he looks for - when he pressed there on my daughter she nearly flew off the table.

 

[msf]

Ah, sorry I thought Jamie S was suggesting you have lower-right quadrant pain.

 

[msf]

Was the spot level with the belly button?

 

[justy]

Was the spot level with the belly button?

Yes, more or less.

 

[JaimeS]

@msf, @justy -

Sorry, I was referring to where my worst pain is. It's a little lower than Justy's - more or less where my appendix is located. De Meirlier felt around a bit before locating the inflamed area, so I assume it's not at precisely the same spot on everyone.

-J