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DS15 who has PANS has been treated for multiple suspected infections by an LLMD - he's been on abx, antifungals and antivirals for 2.5 years now (orals for 1+ years and daily IVs for 15 months). He started monthly HD-IVIG January 2013 since getting diagnosed with CVID in January 2012 (of course, we hope it will also help with PANS)

 

His bloodwork in the last 2 years has only been positive for strep and IGG low-positive for Mycoplasma but he has been treated based on clinical symptoms and other positive results in other family members for Babesia, Bartonella, Lyme.

 

His bloodwork from 2 weeks ago (4 weeks post-IVIG) showed an high positive IGM for Mycoplasma (1874 and upper limit is 950).

 

What would explain the sudden IGM result? Do you think he is finally fighting off the infection since IVIG is giving his immune system a boost?

 

Mind you, he is completely asymptomatic for Mycoplasma other than fatigue and a little sniffle. He is currently not in a PANS exacerbation nor does he attend school or leave the house much since his immune system is so compromised right now (very low WBC and low IGG).

 

 

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We have all been tested and he's the only one that comes up positive. I'm thinking it's an old infection that never cleared and now his body is finally trying to clear it.

 

It must be very hard to treat b/c he has been on so many different abx for long periods of time and this infection is still hanging around.

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I've learned with four of us having mycoplasma that it can present very differently from person to person: leg spasms and GI issues in one, leg pain/fatigue/off and on rash/slight cough in another, sinus/throat infection in myself and other son, then later I got the leg pain and GI stuff. It is definitely hard to get rid of!

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The last tine we tested DD after six months of abx nothing had moved. She's been on rifampin so am curious if that has helped. I will post the next time we get results which shd be end of April if it made a difference. Someone once posted a paper on using iv abx for myco but I can't recall which abx. Sorry and I really hope things improve

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The only other thing I can think of is that the IVIG itself contained high donor antibodies to mycoplasma and that's what's showing up. When we did our one HD IVIG, we were told to wait at least 8 weeks, preferably longer, before testing with Igenex for Lyme. We waited 10 weeks. It's also possible that you're right - his immune system is stronger and can see the infection now.

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It took two years of treating my daughter for Myco P before we saw a decrease in her IgM titers. Her IgG is still elevated but down from what it was originally. There was never a change when she was on a single antibiotic. It took combo antibiotic therapy before she started getting better. An LLMD is the best for treating Myco. This is a very stubborn pathogen and can hide in different areas of the body. You really need someone who has experience treating it. My daughter also had IVIG and she did improve but it seemed to only last a short time so we did a second IVIG which seemed to give gains but it was very gradual. I think it was the underlying infection that prevented the optimal result. We are still fighting lyme but she is doing better. Be aggressive with the Myco treatment and you should see improvement.

 

Dedee

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So Mycoplasma can cause GI issues? This is his chief complaint at the moment - GI pain and GERD so bad that we had to resort to seeing a specialist who put him on a proton pump inhibitor for the acid reflux issues. He's lost 6 lbs. since January b/c he's not eating well. He will have an endoscopy/colonoscopy next week, but I have a gut feeling nothing will show up.

 

Maybe the Mycoplasma is to blame....

 

 

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My daughter also had constant stomach complaints. For as long as I can remember, she complained that there was "throw up in my throat". We tried all types of stuff. She had a scope and they found nothing. She has also been constipated for as long as I can remember. Since treatment, she no longer complains of feeling like there is throw up in her throat. She is still constipated and she does still sometimes complain of a tummy ache but not nearly as much. I think a lot of the GI distress is lyme related. Of course sometimes it is related to antibiotics on an empty stomach. We have to be careful of that as well. Overall though, she is much better than she was two years ago when we started all this treatment. I think once you get this Myco under control you will see some resolution of the GI symptoms.

 

Dedee

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