Ohh myco -P, Oh myco - P,

[norcalmom]

Well, I FINALLY have something on PAPER that says my son HAS mycoplasma! YAY! At least now we know what antibiotics will work best for him, and why he does better after an IVIG, for a while anyway.

 

I'm posting this on the Lyme board - because I have my son seeing a Lyme doctor in case he has Lyme. His test results aren't very conclusive, and his only symptoms of Lyme is pandas. I'm really glad I stuck this out - weather or not he has Lyme I dunno - but he HAS mycpoplasma for sure, and the LLMDs know all the infections and antibitoics like the back of their hands - so its the best place for you if you think there might be some underlying infection.

 

Here's the scoop - we tested for this over a year ago (just did it because he didn't ever have strep history, and I had read myco could be cause of pandas - so I asked to have it tested).

 

He had NO mycoplasma symptoms at the time of testing. Just pandas, and a recollection on my part that he had had a long lasting, dry (almost croup-like) cough about a year before.

 

IGM - this is the number that tells you if you have an active infection - was negative.

IGG - this number tells you have HAD mycoplasma. But, there is a range for it. Under 320 is normal for our lab's range. His was 2450.

 

I researched this and talked to many doctors.They were approx. split - our Stanford immunologist said it meant that he HAD mycpP and had a very robust reaction to it and makes a strong antibody response. (and that is what you will find in the literature). A researcher that is considered an mycoplasma expert because he discoved that is what was behing gulf war syndrome, said to him it probably meant it was chronic. These are just two - the lyme doc said could be chronic, regular docs (including Dr K) said it meant nothing.

 

What DOES mean something is if it goes up or down over time.

Between the fact that IVIG would mess up his numbers, needle phobia, my exhaustion from tests, and the fact that when he switched to Doxycycline he had a sun reaction (this is best antibiotic for mycoP) I decided to not test him for a while and stay the course with seeing how the 2nd IVIG was and continue with azithromycin and occasionally trying some different supplements like NAC.

 

HIs Mycoplasma number is now 2984. Up 534 points. I am sooo thankful I had him tested again. I had to ask for this. Thank goodness I did.

 

He's been doing fairly well - around 80-90%. but still has a very disturbing OCD thing, and anxiety that sometimes cause nighttime issues, since his 2nd IVIG. He's stable at 80% or so, at the moment, but has not made any improvements since about 4 months after his last IVIG (in April - BUT, and this is a big BUT he has not had ANY illnesses - thank you IVIG- and I think that is why he has not slid backward during this time).

 

I cannot WAIT to start him on antibiotics for mycoplasma. The sun is gone for the next few months...yay!

[sf_mom]

Good Luck NorCal Mom... I know you are in good hands to help close the gap on the next 20% of wellness regardless of infection. By the way, I was there yesterday morning for follow-up visit.

 

-Wendy

[cobbiemommy]

When I read Dr. Garth Nicholson's website, he stated that the best drug for Mycoplasma was Minocycline, not Doxycycline. DS, 12, has been doing much better since taking Minocycline versus Doxycycline. Hope your son feels better soon!

[tpotter]

Thank you norcalmom for the wonderful explanation. My DS cannot seem to get better, despite multiple IVIG's. We are now aggressively fighting Bartonella, because he has literally every symptom in the book, PLUS the rash that just won't completely go away. BUT, the last time we had him tested (a few weeks ago), his mycoP IGG was elevated again...not has high as your's, but definitely elevated. I asked if that could be contributing to it, but keep getting the response that no...just that his body fought it (I had mycoP for about 3 years...undiagnosed, despite having all the symptoms.) But, it doesn't make sense that it's not contributing to the problem.

 

Unfortunately, though, DS is now allergic to azith, biaxin, doxy, and flaggyl, making it extremely difficult to treat mycop and bartonella.

[norcalmom]

hi T potter. Wow. I'm sorry to hear about his allergies. I do get concerned about all the antibiotics. Are you using herbals instead?