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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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good sign??

Messages
92
Location
Holland
hi Athene, Thank you very much!

I am still sick but it is getting a little better.
Only at nights i just cant sleep because of the flu etc.

I have to go back to dml at dec 5th, and i have a lot of queastions.
And i also want him to test me for a lot of other things like mycoplasmas, chlamydia pneumoniae etc etc.
I am a little mad about it that i diddnt got testes so good.
So now i am already 1 year in treatment but he diddnt test these kind of things...
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Hi Nabo,

I am glad to hear you are getting little better. I do hope you'll be able to sleep better soon.

I paid a lot of money for mycoplasma, chlamydia pneumonia and Lyme disease tests with KDM and they all came back negative. He just uses an ordinary local Belgian lab for these tests.
Then I got tested again in Germany by Infectolab, which is specialised in infection testing and has more sensitive and modern techniques, and I was positive for all these infections and 2 others. (Actually I didn't go to Germany I sent them my blood by courier).

So I would really like to suggest that you get those tests done somewhere else, not through KDM.
I think you are definitely right that you need to know if you have those infections, because if so, you wold need specific antibiotics that are the best to kill them, and probably need a higher dose than KDM usually gives.
 
Messages
92
Location
Holland
thanks for the info.

where did you test that?? And where are you from? Europe?

When did you test those things at KDM ??? Long time a go?
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
I tested those things with KDM almost exactly 2 years ago. I tested at infectolab about 16 months ago.

Their website is
http://www.infectolab.de/index.php?id=22&L=1

I live in Italy and had the blood sent from here. They need it within 48 hours, which means you can send it from anywhere in Europe, but probaly not outside europe. (I suppose you'd have to check with the courier - it is classed as "biological material category B")
 
Messages
92
Location
Holland
thanks for the info.

I had already read great things about NAC.
So is does work for you?

and what does CPN/MPN means???? never heard of it in holland ???
 
Messages
15,786
thanks for the info.

I had already read great things about NAC.
So is does work for you?

and what does CPN/MPN means???? never heard of it in holland ???

I think CPN and MPN are two types of pneumonia.

I take NAC, not for that reason, but because cysteine (the C in NAC) is probably deficient in most people with ME/CFS. It's been helping a lot with some symptoms (sleeping problems, peeing too much, light-headedness, brain on fire), and helping a little with other problems (post exertional malaise).

I do 3 tablets per day of Jarrow 600 mg extended release, with one right before bed time. It's harmless at that dose, and even somewhat higher, unless you get kidney stones from cystine.
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
I found a great website yesterday about chlamydia pneumonia.
http://www.cpnhelp.org/

It explains why the acetyl cysteine works (plus LOTS of other info including the correct antibiotic protocol):
http://www.cpnhelp.org/recommended_supplements

The most important of these is N-Acetyl Cysteine (NACi). It supports the liver which is going to be doing some hard work during this treatment but more importantly it causes the EBs (Elementary Bodies) to burst open before they have a chance to infiltrate a cell. So it has a direct action on Cpn.
NAC
600 to 1200mg
Twice a day
Build up gradually, can cause heartburn


The link lists all the other supplements that help against Chlam Pn. as well.

I've started a new thread about Chlam Pn with this site, hoping others will also pool their knowledge about this rotten infection.
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
I found a great website yesterday about chlamydia pneumonia.
http://www.cpnhelp.org/

It explains why the acetyl cysteine works (plus LOTS of other info including the correct antibiotic protocol):
http://www.cpnhelp.org/recommended_supplements

The most important of these is N-Acetyl Cysteine (NACi). It supports the liver which is going to be doing some hard work during this treatment but more importantly it causes the EBs (Elementary Bodies) to burst open before they have a chance to infiltrate a cell. So it has a direct action on Cpn.
NAC
600 to 1200mg
Twice a day
Build up gradually, can cause heartburn


The link lists all the other supplements that help against Chlam Pn. as well.

I've started a new thread about Chlam Pn with this site, hoping others will also pool their knowledge about this rotten infection.
 

ukme

Senior Member
Messages
169
I tested those things with KDM almost exactly 2 years ago. I tested at infectolab about 16 months ago.

Their website is
http://www.infectolab.de/index.php?id=22&L=1

I live in Italy and had the blood sent from here. They need it within 48 hours, which means you can send it from anywhere in Europe, but probaly not outside europe. (I suppose you'd have to check with the courier - it is classed as "biological material category B")

Do you have to go through a doctor to access these tests Athene?
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
No you don't. It's private so you can just book the tests yourself. The only thing you need is to find a lab that will draw the blood for you.
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Hi Valentijn,

Thank you for the tip about NAC, and especially about the Jarrow timed release NAC - I ordered some today.

I tried a brand from the local pharmacy which is already heapling my with burning lung pains and has got rid of my chronic sore throat and hoarse voice, but it gives me bad acidity. I hope the Jarrow tabs that release in the intestine will resolve that!

Athene
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
hello Athene

I was wondering how you are doing now? Do you follow the protocol from Infectolab or the one from cpnhelp.org to eradicate the chlamydia pneumonia (and other infections)?

Does your treatment help you to have less burning lung pain and chronic throat pain now?

Unfortunately the NAC is a no go for me as I cannot tolerate cysteine nor sulfur due to defect Cystathionine Beta Synthase. It makes me more sick which we try to avoid :)

Best regards

Marlene