Help with KDM result's!! :)

[atoska]

Hello everybody, I just received my test results from Red Labs Belgium. I have an app with KDM in a little more than a week, but I am so impatient! I would like to ask for any opinion of what these things could mean... it is the first time in my whole life that I have things wrong in my tests! I thought I would be happier the day this happened.. but.. it scares me a little..
My nagalase is normal.. is that normal in cfs? Do you guys think that GcMaf won't be an option for me?
And all my high levels of cytokines and other immune markers.. what do they mean? Inflammation? Could they give any clues to KDM and bring on some kind of treatment? Or they are just things that they know are wrong in us patients.. but don't know what to do with them?
If I had lyme or high nagalase.. I see a treatment.. but if not...
I'll just post the things that are high..
Elastase Expression 220 (0,00-150,00 ratio)
Nagalase 1,00 (0,32-0,95 nmol)
Prostaglandine E2 3,35 (0,10-2,81)
sCD14 8987 (2800,00-5000,00 ng/ml)
IL-10 mRNA 88 (10,00-80,00)
IL-6 mRNA 27 (0.00-15,00)
MIP-1beta mRNA 55 (10,00-50,00)
Tgf-beta1 mRNA 56 (0,00-30,00)

All the other things (Bartonella, Borrelia, C3AS, CD57, CHLT, MycoB, Perforin mRNA expression, Phagotest, MOLD and seroBORREL seem to be inside the ratios)

Please.. if anyone can give me any kind of information about what this means.. or if this could be a clue for a treatment.. i thank you all very much in advance!!

Hope this year 2013 is going to be our year! Finally!!

Hugs to all!
Andrea

 

[snowathlete]

Hi Andrea,
Have you already seen KDM, or is your appointment next week your first?

I am waiting for my test results back having seen KDM a couple of weeks ago. So, I dont have much personal experience yet, only what i have read about a few of your tests.

My understanding from other peoples posts is that Nagalase is often high in ME/CFS, though it isnt in everyone I dont think. Its a marker that some doctors use to guide treatment with GcMAF, if high. But I think some docs treat that way anyway as not everyone agrees on how important the marker is. i dont know if KDM would treat with that or not, but would be interested to know.

CD14 among other things is supposed to regulate microbes in the gut, so might indicate a reaction to a bacteria or other microbe in your gut?
It's also high in untreated Lyme disease.

Does the range for things like Borrelia signify it is not present, or that it is?

Hope this year 2013 is going to be our year! Finally!!

Hugs to all!
Andrea

I really hope it is our year! Wishing the best!

 

[atoska]

Hi Snowathlete!!
Thank you for your answer!!
Very very appreciated!
I saw KDM last December and have been waiting to receive the results. I guess it took a little longer because of christmas and all that..
And I have my next app on February 13th. I am so nervous! I put so much hope into him.. i need something to come out of this!!
As you do for sure!! How was your visit? Did you leave happy? I left his office with a smile.. with hope.. I also took the breath tests but haven't got the results yet. And I am suppose to take the efford test next week before the app.

When you asked about my ranges of Borrelia I looked again and I think I am positive for Bartonela!! I don't know how I missed it! It says the result should come out negative and my result is GREY ZONE. I don't know what it means, but it is not a negative like everything else.
Mmm... so with your insight about CD14 being high in lyme.. maybe it does give a clue to KDM!!
I didn't know that CD14 was related to gut issues.. thank you for that info too!! I will research it further!

Thank you again @showathlete!
And best of luck to you too! When do you have your next app?

 

[Sushi]

atoska

Hi, yes good to get some clues so you can ask the right questions. I think there are some other relevant results that you didn't include that might help clarify your situation (like inflammatory cytokines--serum, C4a, etc.) I have to go out now but maybe we could catch each other later--though I know there is a big time difference.

Best,
Sushi

 

[Sushi]

atoska

Also your IL 6 is quite high -- but check your serum levels too. Both IL 6 and sCD14 are things that he would look at before prescribing GcMAF (and also C4a and probably some others). How much the nagalase levels play into this is something you'll have to discuss with him.

Oh, and look at your Tgf-BETA1 serum.

If you do have Bartonella, that might have to be treated before some other things. Just rambling!

Sushi

 

[snowathlete]

And I have my next app on February 13th. I am so nervous! I put so much hope into him.. i need something to come out of this!!
As you do for sure!! How was your visit? Did you leave happy? I left his office with a smile.. with hope.. I also took the breath tests but haven't got the results yet.

I know how you feel. I am trying to manage my expectations, it's difficult, but I am hoping for something significant and for treatment to work, but expecting less than that. I left in a hurry to get the earlier eurostar train because it was snowing, but I left feeling positive about it all. I wrote an article about my experience, in case you didnt see it yet and want to read it:
http://phoenixrising.me/archives/15366

When you asked about my ranges of Borrelia I looked again and I think I am positive for Bartonela!! I don't know how I missed it! It says the result should come out negative and my result is GREY ZONE. I don't know what it means, but it is not a negative like everything else.

I dont know what Grey Zone means either, but maybe it is positive. Let us know when you find out. If it is then at least there are some treatments to try and erradicate it. So i think its probably a good thing to find it.

I dont have another appointment booked yet. His nurse said i could arrange a telephone consultation or in person, so im going to wait and see what my results are and then decide which to do. I expect it will be another couple of months yet before i get my results. Have you got any other tests to come in yet from other labs?

 

[atoska]

snowathlete Why are you expecting less than what you are hoping for? Nooo.. we have to have good luck sometime! Life owes us!! Good luck will come, don't know when.. but it has to! Hopefully this year 2013!!

I read your post about your experience. Thank you for sharing! I will be waiting for your next part of the story next app, your test results, treatment and improvement!

I did get all my other results, from the other lab. They were normal tests that they have done thousands of times before, white, red blood cell count, ThS and all that stuff. And like always, everything came out perfect.

I didn't take the food intolerance test because I had already had one done a few years ago. Same thing with the electrogram.. i had had many in the past.. so he didn't ask for it.

I think the only results that I am left to know are the breathing tests.

I will surely let you know how this second visit comes out!

Thanks again for your help!!

Andrea

 

[atoska]

Sushi!!! Thanks for all your help! I will be looking for you this afternoon and see if i catch you online!!
Here i post all my results.. i think he didn't test for C4a... He asked for PrPc "something", i can't remember, but they didn't send enough blood to analyse it.
What do you mean both CD14 and C4a are thing she would look at before prescribing GcMaf? If they are high he prescribes it? Or they have to be low to prescribe it?
Here go all my results :
Bartonella Grey Zone (Negative)
Borrelia Negative (Negative)
C3AS 0,84 (0,58-1,90)
CD57 81 ( 60-360)
CHLT Negative (Negative)
ELAS 220 (0,00 - 150,00)
MycoB Negative (Negative)
Nagalase 1,00 ( 0,32 - 0,95)
PERF 657 (250,00 - 750,00)
PGE2f 3,35 (0,10- 2,81)
PHAGO 83,1 (65,00- 95,00)
sCD14 8987 (2800,00-5000,00)
MOLP
ALTA less than 2 (0,00-11,00)
ASPF 11,6 (0,00-77,00)
ASPN 6,62 (0,00-25,00)
CALB 12,2 (0,00-125,00)
CLAH 8,23 (0,00-56,00)
PENC 5,18 (0,00-38,00)
CYTI
IL-10 mRNA 88 (10,00-80,00)
IL-6 mRNA 27 (0,00-15,00)
IL-8 mRNA 30 (0,00-70,00)
MIP-1betamRNA 55 (10,00-50,00)
Tgf-beta1 mRNA 56 (0,00-30,00)
TNF mRNA 10 (0,00-15,00)

SeroBORREL
SeroBORREL IgG Negative (Negative)
SeroBORREL IgM Negative (Negative)

CombiPARAS
Crypto Negative (Negative)
Giardia Negative (Negative)
EntaHist Negative (Negative)
HPYL Negative (Negative)

And these are all my RedLab results!! What do they mean?? Big question!!
I will look for you this afternoon and hopefully I can catch you!
Big big hugs Sushi!!

 

[cigana]

Hi Atoska,

Please consider adding your results to my list:
http://forums.phoenixrising.me/index.php?threads/kdm-results-log.21719/

If you would like me to do it (save all that typing again!) then just send me a private message

 

[atoska]

cigana
hello! of course i will share my results! I think it is a wonderful idea
We could maybe also write a little breaf list of worst symptoms and our energy scale..
to see if any results correlate with symptoms.
I took a look at your results, some are very similar to mine, but others aren't. I wonder what does that mean, how the cfs affects us differently?
Also.. i looked at the CYTI, and the ratios are different...
So to compare it will be hard..
i will write my results this afternoon after my long nap that i am going to take!!!