Jump to content
ACN Latitudes Forums

Recommended Posts

Can the bloodwork show high numbers for mycoplasma even if the teenager does not show any outward symptoms? I ask this b/c for our daughter, mycoplasma was the cause of her PANS and OCD onset and her numbers were very high. After two IVIGS and TWO YEARS of abx, she does not APPEAR to have any myco or other illness, it is just this extreme, severe and debilitating OCD.

 

We took her off abx for the first time in two years, b/c hey they were not exactly helping and we are still trying to figure out the game plan. I hate to get more bloodwork, but wondered if she could still have myco without showing it one bit.

 

THANKS!

Link to post
Share on other sites

yes - you can have myco Pwithout typical mycoP symptoms. Chronic mycoplasma is different from typical mycoplasma. What you need to look at are her IgG numbers. I'm assuming there is no longer any IgM - that indicates active recently acquired infection. Over time the IgM goes down. The IgG can stay high for long periods of time. It means you had the infection at some point. But - if it went up - or is still really high and didn't go down at all - then she may still have an active MycoP infection. (if it went up a bunch is definately has it)

 

What were her numbers? Did she take Doxycycline for it? Doxy and mino are the preferred antibiotics. My son's IgG went up over 500 points while on full does Azithromycin (this is how we knew for sure he had Myco P - because he had no symptoms, and his IgM was negative). He was on the Azith for pandas...then we swtiched to Doxy for several months. We're still dealing with stuff. but the antibitoc switch helped and his titer went down somewhat (over a 5 month period, with about 14 weeks on Doxy, and 2 weeks on mini) also on an herb called A-myco.

Link to post
Share on other sites

hmmm.. are you saying minnocin when you say mino? She has been on so many different ABX but I don't think those two were ever taken. Her numbers were very high and came down and went back up. Sorry to be vague, but I'll have to get out the paperwork as it has been a while since I looked at her bloodwork~I just have no memory of numbers! I keep wondering if this chronic severe OCD is just the yuck we are left with after two years of PANS or maybe there is still an underlying infection and the abx's just didn't kill it. It's possible. But maybe equally possible that she is stuck with chronic OCD and we may need to go the SSRI route...

 

THANKS!

Link to post
Share on other sites

Our PANDAS daughter was asymptomatic for mycoplasma but when we tested her this spring, her titer was 727 and should have been between 0 and 90. She is currently on azithromycin. We just had follow-up blood work to determine if the azith is helping. If I find that it is not, I will mention doxy to our treating physician.

Link to post
Share on other sites

There are many strains of mycoplasma, not just the one that's commonly tested. here's a good overview:

http://www.morgellons-uk.net/?p=467

 

Also, doxycycline isn't good for kids whose adult teeth haven't all emerged. Doxy can permanently stain developing teeth.

 

Bloodwork would be a good idea in any event. Not just for myco, but for ASo/Anti D-Nase B, maybe lyme if you're open to that, also check immune complexes. C3d can show that the immune system is activated (tho it doesn't tell you what kind of infection is causing it, but does indicate an active infection of some sort); C3a and C4a are indicators of chronic lyme and/or mold. Don't underestimate the role mold can play in neuropsych behaviors.

 

Finally, even with infection as a cause, ERP for OCD is priceless. If you aren't doing ERP, then even an SSRI, IMHO, isn't going to fully eradicate it. There are many parents here who are more experienced than I am, but if you post about some of the more problematic OCD issues, maybe someone can offer some ideas to help fight them.

Link to post
Share on other sites

Thanks everyone, and LLM is ERP a type of CBT then? a subset of it? We just had a frustraing round with a therapist. I went in spelling out we were there for her to learn CBT and this was expressed several times and acknowledged. Turns out this was not being taught at all! Thankfully we didn't spend too much time there, but we are starting over. Hers is the intrusive thought type and ERP scares even me b/c of the nature of this OCD.:-(

 

THANKS!

Link to post
Share on other sites

My daughter had Myco. p without any symptoms. She did not get better on Zithromax and only showed improvement when we started Biaxin. Even then she got to a certain point and then nothing. She was chronically anxious with OCD and rages. We kept checking her myco p titers because her only symptoms were the behavior issues. Her myco p titers never came down. Eventually we saw a LLMD and she was diagnosed with lyme. She is now recieving treatment for lyme and myco p. Many kids who have Mycoplasma also have lyme. They can't clear the myco because of the underlying lyme. I personnally don't believe that she can't get any better. You may just need to be more aggressive with the myco treatment or look for other underlying infections. CBT / ERP is very helpful also. Best of luck.

 

Dedee

Link to post
Share on other sites

Have you tested all family members for mycoP? Turns out that I was the culprit in our family (with the high IgM), and every time my IgM went up, DS16's doubled to >5!

 

I would have everyone (including the dog, if you have one, btw) tested for mycoP and strep at the least. If she keeps getting reexposed, she's not going to get better.

Link to post
Share on other sites

We did at the one year mark, so that was about a year ago. Her brother showed a prior myco infection and so did hubby, but the numbers had come down. Maybe since this is going on over two years now, we should have a blood testing party eh? I'll bring the dog, our 4 goats, 3 sheep, 70 hens and 200 broiler chickens. Wooowee.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...