What are the tests for the other three?

[Wombat140]

Don't want to speak too soon, but I think we may have found a possible PANDAS doctor. But he's about a hundred miles away, so we need to get as much done at the first visit as possible. I think I've now worked out what the usual tests for streptococcus are, so we'll know whether the ones he suggests are all right. But it seems like a good idea to get the other likely suspects done at the same time. What are the recognised tests for Lyme disease, Mycoplasma pneumoniae and Epstein-Barr virus, please? Is Epstein-Barr even relevant, or did I imagine that one?

Many thanks

Wombat140

[Hopeny]

Regarding Lyme, the testing is unfortunately not extremely reliable. I just saw you are in the UK. There is a lab that seems to be knowledgable in Germany for Lyme which might work. http://www.infectolab.de/index.php?id=22&L=1. (BTW because we must find some humor in all of this I love the name , Infectolab!) I found them on the Igenex website which is the gold standard Lyme lab in the U.S. Many of the standard labs do a pretty poor job so please see if Infectolab is an option, especially in the UK where there may be very little experience with Lyme. Checking for Lyme co-infections is also important, however if costs are a concern you could do the Lyme test first and then do the rest if anything comes up suspicious. Good luck.

[tpotter]

Regarding Lyme, the testing is unfortunately not extremely reliable. I just saw you are in the UK. There is a lab that seems to be knowledgable in Germany for Lyme which might work. http://www.infectolab.de/index.php?id=22&L=1. (BTW because we must find some humor in all of this I love the name , Infectolab!) I found them on the Igenex website which is the gold standard Lyme lab in the U.S. Many of the standard labs do a pretty poor job so please see if Infectolab is an option, especially in the UK where there may be very little experience with Lyme. Checking for Lyme co-infections is also important, however if costs are a concern you could do the Lyme test first and then do the rest if anything comes up suspicious. Good luck.

 

 

There is a new test out that actually takes pictures of the spirochetes, and has an 80% accuracy rate. We are still waiting for the results for DS, and I know several others have done it, too. We only did it on DS, because DH came back CDC positive on the western blot, DH16 has the bartonella rash, and it's clearing with the proper abx (so we have clinical proof), I have mycoP, foot pain (again clinical signs,) and although DS19 also has many symptoms, he is prone to c-diff, so abx is a huge problem (I don't want to tx unless we are more sure, and then I would suspect we will have to go with IV.)

 

Here is there website: http://www.advanced-lab.com/

 

But, keep in mind, that, although 80% is better than the 40-50% of other tests, it's still not 100%, and Lyme is still a clinical dx. One thing I would consider, is do you have symptoms, such as bright reddish/purple stretch marks (might look like cat scratches), foot pain, joint pain, all over muscle pain, rages, mycoPlasma pneumonia? These may actually be caused by lyme or co-infections, and these are some of the symptoms that LLMD's look for to dx clinically for lyme or co-infections.

[Wombat140]

Nope, none of those symptoms (if by "mycoplasma pneumonia" you mean the symptoms of it; haven't been tested for the actual infection yet). It was just an idea. Be just as glad if it's NOT Lyme disease, it sounds like a real ***** to treat. I'll remember about Infectolab (yes, good name!) though; unfortunately www.advanced-lab.com says they don't accept samples from outside the USA.

 

What about Myc p and Epstein-Barr, please? I've seen a few mentions on here of Myc p being shown by some kind of antibody level, but I'm not clear enough about the details that I could ask for it from a doctor who didn't mention it - or be sure it was the same test if he/she did offer something.

[norcalmom]

Just Mycoplasma Pneumoniae - IgG and IgM.. If the IgM is negative and the IgG is positive, you NEED to retest in a could months. If it is going up - the infection is active, and most likely chronic. Most docts will only consider it positive if the IgM is positive, but that is incorrect.

 

Epstein bar - same - I think there are 4 different ways they run it. IgG, IgM. I'm pretty sure if you get the test - they do it all 4 ways (just like the myco P test always test both IgG and IgM)

 

Good luck

[Wombat140]

All right, thanks Norcalmom. (And thanks for the tip about negative IgM). I just wanted to be sure of the details because I'm in Britain, so they may not use quite the same standard tests or the same names for them as in the USA. Am now waiting for an answer from a doctor I wrote to - fingers crossed!

Edited August 11, 2012 by Wombat140