Myco P questions

[SarahJane]

Okay...I'm gonna do MORE research on this (more than I've already done). And I kinda know the answer, but 2, 3, 4, 5, 100 heads seem better than one when it comes to PANDAS.

 

DS(7) has PANDAS. We did IVIg in Nov '10 after 2 known exacerbations to dx'd strep...we got PANDAS dx in the middle of the 2nd one. We did not test for other infections. Saw good results start 2-weeks post-IVIg. Then a big flip at 6.5 weeks or so...an ok recovery from that. Sent a positive 3-month report, even tho' we were still seeing some things. Well, those things we were seeing stayed & got worse. Trichotillomania started during this time...bare spot on his head now & considerable thinning. (This was not a pre-IVIg symptom--we had a day or two of it post but nothing like what he was doing a about 2-3 weeks ago! And I found the stash of hair earlier this week...he twists a knot & then pulls. It has seemed to have stopped tho'...for now.) His age regression makes him more like a 3-5 year old at any time. Have seen some rages over small things. Can't say no or he tantrums. Carries a stack of books & stuffed animal around. Insomnia is back & he won't sleep in his bed. Some other OCD things that he's had for a long time. Perfectionism. Can't take him out of the house due to the unpredictability of his behavior. Had to cancel a lot of things I'd planned because prior to this dip, things were going well. (I know they were, because if they weren't, I wouldn't have planned outings/trips.) Haven't been able to homeschool for the past 2 weeks (public school would not be possible if we were going). Impulivity. Low frustration threshold. There's more...you can imagine. We're not quite to pre-IVIg dark place, but all the positive things I put in my 3 month post-IVIg are basically gone. And we'd had all positive reports. It's heartwrenching to have lost the gains we'd seemingly made. And I'm back to feeling crazy & on the computer all day & not feeling like doing anything but all PANDAS & related research, all the time.

 

So, I ran some tests (strep titers & circulating immune complexes) per the expert. I threw on a myco p test since my hubby has been sick since Dec, & even tho hubby's myco p test was neg it's such a tricky bug. So...my son doesn't run high titers even with a current infection, so those were low: ASO, 21.6 & Anti-DNase B, 1:60. (For reference, with an acute infection in Sept his titers were only 24.1 & 1:85.) Immune stuff negative/normal. Myco P was negative on IgM but 677 on IgG. Dr thinks this may or may not be significant and wants to keep him on 250mg zith/daily and wait two months. Two months. I've sent another email (like any good PANDAS Mom would do if you said something might be significant). I didn't worry about myco p as much pre-IVIg because I figured if it was there that the zith WOULD take care of it post-IVIg. Now, I know way more about the possibilities of chronic myco p & how it hides & how negative tests can be false...I know too much probably but still not enough.

 

So...here are the questions if you didn't get thru all that rambling:

 

What would you do or think about a 677 myco p IgG (>320 is positive)?

 

Can it be zith resistant?

 

Anyone with similar IVIg response that had a myco p co-infection showing with high IgG?

 

Since hubby has had 2 neg myco p tests, should I let that one go where he's concerned? (I'm all paranoid about chronic.)

 

Anything else (other than Lyme) that I should think about? That's already in my mind but I have myco p result now.

 

 

It's tricky too because I trust my dr but this is MY KID. And we did IVIg already, which is a bit scary.

 

Thanks in advance for your take on things. I have a new computer that stretches things across a big 21" screen, so it doesn't look like I'm writing as much as I'm sure I did.

[Bat_Sheva_Myllys]

My replies are based on our experience with Sandra (look for my old messages for the whole story).

--What would you do or think about a 677 myco p IgG (>320 is positive)?

I am certain MycoP IgG means an on going infection. The bacteria is hiding and active.

We had the same thing. Positive here is over 30. After the first rounf of abx and short course of PRednisone, which earned us a whole good year, the next time it reappeared after a resp. infection the Myco P IgG kept rising irrespective of treatments with short term antibiotics, long term Prednisone and IVIG. Doctors ignored, but I kept statistics and it was obvious that each treatment sent it lower but not sufficiently and then it kept on going up, until 4 years later it was at 200!. We only ahve a GP who believes in us and keeps helping for the past 6 years. We started Azith 500mg/day (she was 19+ at that time). Took 3 months for the IgG to go from 200 to 120 and another 6 to go down to 39 (30 is the pos-neg border). And it was also obvious that the longer she took the abx the clearer her head got! We are still Azith 500mg/day and do not intend to stop. Things are not yet OK but there are significant improvements compared to the absolute disaster we had for almost 3 years since ehr last IVIG.

 

--Can it be zith resistant?

No. You just have to keep on hitting it with Azith and use a sufficient dose for long enough time.

 

Anyone with similar IVIg response that had a myco p co-infection showing with high IgG?

-- See above. IVIG always helped, but it has to be given regularly and I am now certain none of these alone is effective, only we cannot get IVIg any more. The Finnish system will not pay and when she got 20 her insurance expired and wven nefore that they were not going to pay for experimental treatment. We are the only known case in the whole country. There is one young boy with high Myco P who is possibly PITAND too, but unlike Sandra he did have other behavioural issues before and I do not think he is being treated. His mother called me only once.

 

--Since hubby has had 2 neg myco p tests, should I let that one go where he's concerned? (I'm all paranoid about chronic.)

Negative as in IgM or IgG?

 

Anything else (other than Lyme) that I should think about? That's already in my mind but I have myco p result now.

-- Myco P is quite sufficient. WE had Influensa A followed by clearly active Myco P - and then a month later the PITAND was clear. Absolutely nothng for 15.5 years before that. I had Myco P the previous year but the girls did not get it. We also tested the entire family, when we tested Sandra's after 3 months of Azith. Mine was 45, the older daughter's negative but hubby was almost a 100. Pity we could not put him on Azith because he is already on another type of abx for years now due to cancer related side effects.

 

Could not test the dogs, but Sandra's was coughing last year and we finally got other on abx and the vet put her on it noce again just last week because she was coughing. The vet takes me more seriously than most specialists!

 

--It's tricky too because I trust my dr but this is MY KID. And we did IVIg already, which is a bit scary.

I am under the impression that IVIG should be done as first full treatment (certain dosage per body mass for so many days) and then o9nce a month a maintenenace one day for as long as it takes, 6 months or evem longer.

 

Hope this is of help. Ask more if need and write on Forum or off, whichever suits you best.

[SarahJane]

THANK YOU! I'm just of the opinion that high IgG is likely relevant and want to treat it vs. wait two months. Our doc usually does one IVIg and waits. He's been known to do another one, but after a sizable wait. My hubby had neg IgM/IgG on a myco p test last month, & I thought for sure it would be positive (he's been sick since Dec). A different doc ran another test last week on hubby...verbally today they said it was negative, but I don't have a copy to look at any numbers. It just seems like myco p is not treated as seriously as it should be...or I'm just paranoid...or both.

 

Thanks again for sharing!