Need for Long-term High-dose Antibiotics

[Christianmom]

My son, 16, has been on high-dose antibiotics for 7 months. The antibiotics have improved his ability to handle his OCD better, but have done little to actually improve it. Out of curiousity I took him off of Biaxin (1000 mg.) because it didn't seem to be doing anything for him anyway. Within 24 hours he was noticeably worse. Within 48 hours he asked to go back on Biaxin. Within 24 hours after going back on, there was noticeable improvement. Within 48 hours he was back to where he was before he went off of Biaxin.

 

I have read Saving Sammy, and he too regressed when going off of antibiotics, and I believe stayed on full-dose augmentin XR for 3 years. My question is why was this necessary? I have read that at high doses antibiotics can have anti-inflammatory effects (meaning that antibiotics do what IVIG does except it takes a very long time), but this doesn't especially make sense to me. My son is on curcumin (natural anti-inflammatory) anyway. Is it possible that the high dose antibiotics are keeping an infection at bay but not curing it--mycoplasma, another type of strep besides A (perhaps C or H), lyme, some unknown other infection? Does the fact that my son did poorly when going off of the Biaxin mean there is probably still infection there (though my son's ASO is now normal)? Is this possibly why his DNASE has risen instead of falling?

 

I would appreciate anyone's comments. Thank you!

[Kayanne]

Is it possible that the high dose antibiotics are keeping an infection at bay but not curing it--mycoplasma, another type of strep besides A (perhaps C or H), lyme, some unknown other infection? Does the fact that my son did poorly when going off of the Biaxin mean there is probably still infection there (though my son's ASO is now normal)? Is this possibly why his DNASE has risen instead of falling?

 

I would appreciate anyone's comments. Thank you!

 

I don't think anyone really knows the answer to this, but it could very likely mean that there is another infection.

 

ASO and DNase are strep titers. I was told the ASO is the short term one, it rises faster and drops faster. The DNase is the long-term titer it rises slower, and drops even slower -- so even though your son may be strep free, perhaps his DNase titer is just still on the rising side of the curve because it is slower? -- all of this is just purely speculation on my part.

 

If you son is being treated for mycoplasma, have you been tracking myco p IgG and IgM? I ask about the myco p because biaxin is usually what is prescribed for myco.

 

Also, I know very little about lyme, but some families that were having high titer results despite long courses of antibiotics have found that lyme is a factor.

[MomWithOCDSon]

As Karen's already said, I don't think anyone knows the definitive answer to that question. Perhaps if they did, there'd be considerably less guesswork in terms of PANDAS treatment protocols.

 

Yes, some abx are thought to be anti-inflammatory (predominantly macrolides). But another class (beta-lactams) are thought to have an entirely different beneficial component to them as glutamate modulators. As glutamate is thought to be a component in OCD behaviors, it's possible the abx are assisting in that respect.

 

Our DS is one of those kids who, like Sammy, backslides every time we decrease, let alone cease, his Augmentin XR. We're not entirely certain why, but as his behavior set is nearly entirely OCD-related, we're increasingly considering the whole glutamate component of the puzzle. But it's possible that he's more easily re-exposed to strep (his particular nemisis) when he's less protected in that way as well.

 

I am all for "natural" approaches to medical concerns, and our son has been on a steady regimen of curcumin, quercitin and fish oil -- all anti-inflammatory -- since our PANDAS odyssey began 2 years ago. Unfortunately, I haven't seen any of these have as much efficacy as the abx in terms of assisting our DS.

 

The puzzle continues . . . . .

[Christianmom]

Kayanne -- Yes, we are tracking mycoplasma (negative so far (assuming he's creating proper mycoplasma titers)) and we are pursuing lyme. Just submitted IgeneX testing yesterday. Thank you for your helpful response.

 

MomWithOCDSON -- Does the doctor have any time frame of when you might be able to take him off of antibiotics? And do you know which antibiotics are macrolides and which are gluatamate modulators? Thank you for your helpful response.

[MomWithOCDSon]

MomWithOCDSON -- Does the doctor have any time frame of when you might be able to take him off of antibiotics? And do you know which antibiotics are macrolides and which are gluatamate modulators? Thank you for your helpful response.

 

No, we really don't have a timeframe, and we've finally found a pediatrician who professes that he will keep our DS on them as long as he appears to benefit from them, i.e., need them. Since rheumatic fever patients (another strep autoimmune malady) tend to remain on antibiotics into young adulthood, I suppose that is a possibility. I'm developing a hunch that, in our case at least, we need to get through the "dark side of puberty" before his immune system will effectively settle down sufficiently on its own; he's 14 now. That's not based on anything documented, though.

 

I know that azith is a macrolide and penicillin and its derivitives (amox, augmentin) are beta-lactams (thought to perhaps contribute to glutamate modulation, but still only in the research stage), but I'm far from an expert. Wikipedia is actually pretty helpful in terms of a primer on the classes of abx; here's a link:

 

Classes of Abx

 

Good luck to you!