Christianmom

My son is almost 17, 5' 7", and weights 120 lbs. No side effects from the augmentin xr (or any of the other 7 or 8 drugs we have tried), but we have also been working with a naturopath who has switched my son's probiotic several times. He has been on high-dose antibiotics for a year and his recent complete metabolic panel was normal. He has had no signs of a yeast infection, but I am awaiting results for testing of that to be sure. My son is also not immune-deficient and has always been in excellent health. He is asymptomatic for strep and is a low-histamine person with no seasonal or food allergies, though he is somewhat sensitive to MSG and red and yellow food dyes. I mentioned all this because your son may be very different than mine.

No changes that I saw from the upped dose--pretty much struggles terribly with everything he has to do alone. Any school work done alone is impossible, not just difficult--can't concentrate, re-writes every letter, can't make the simplest decisions. But Augmentin XR at 2000 mg. never really did anything for him either. And the Biaxin (and steroid burst) mostly just got him over the "worst of the worst" by getting rid of strep (or whatever the main culprit was). It never got him into what I would call "remission." I would even have been happy with regression as it may have pointed to a "herx" as my son is questionable for lyme. But he didn't regress either. He has showed some slight improvement very recently as we have begun KPU treatment (tested positive, 30.5)--not as awkward, recalling his dreams (I know, sounds like an old wives tale!), sleeping harder, but it is very early to tell as we are not even on the full treatment yet. I am starting to have some hope though. Also, our naturopath who is guiding the KPU treatment feels that the homeopathic remedies that he has prescribed may have not been working well because of the KPU problem. So perhaps we may see some gains with the homeopathy soon as well. Thank you for your comments and post. They are always helpful! Thanks especially for the post about your son's school success. The voted "Most Likely to be Cured of a Disease" made my son laugh and gave him hope!

cab40 -- So sorry to read your post. Wish there was an easy answer to this crazy disease. I don't have much advice or wisdom--mostly just lots of questions, but my son's doctor is Dr. T. If I can help you in anyway there, just send me a PM. I will pray for your son and for wisdom and guidance for you and your husband.

Something that is odd to me about the antibiotics is that my son was on Biaxin 2000 mg. for many months. When I tried to take him off, he regressed within 24 hours and asked to go back on, which he did. Anyway, he has now been on Augmentin XR 4000 mg. for about a month. He dropped the Biaxin cold turkey to do this. No change in OCD--good or bad. So since Augmentin XR is of a different antibiotic class (beta-lactams, involved with glutamate modulation) than Biaxin (macrolide, giving an "anti-inflammatory effect"?), why didn't my son regress when taken off the Biaxin? Please, no one be offended by this as I am only talking about my son (and I do think my son's case is a lot different than most of the PANDAS cases on this forum), but it crossed my mind that perhaps the Biaxin had somewhat of a "placebo" effect on him, as he was very frightened when we tried to go off them a few months ago. I think the fear came because he knew the antibiotics got him out of "the worst of the worst" and he didn't want to go there again. So even attempting to go off the Biaxin started a new OCD fear with him. I know the Biaxin helped him at one point to get over the strep (lyme, mycoplasma, or whatever), but perhaps he didn't really still need it. Nancy, I thought your post was interesting about reducing antibiotics with your son VERY slowly. I did not do that with the Biaxin. Anyway, logically it seems to me that he should have regressed when he switched from the Biaxin to the Augmentin XR if the Biaxin was actually helping him, but he didn't. Anyone have thoughts on this or seen the same thing?

My son's Igenex testing was questionable for lyme and negative for co-infections. Right now he is being treated for KPU as he tested high (30.5). He just started treatment with our naturopath. I'll post if we see improvement. Still waiting for results from Metametrix complete stool profile.

I tried today to have my son's c3a/c4a complement tests re-done through Quest. My Quest lab will not send it on to National Jewish Health. Apparently, each Quest lab is independently owned and can do what they want. It doesn't matter that my insurance is in-network with them. So I will have my local hospital send my son's blood directly to National Jewish and they will be charged as out-of-network tests. I confirmed all this with National Jewish Health (if you call them, choose option "0" and then the "complement department" option, or you will be put on hold a long time; they are very, very helpful). They agreed that the Labcorp test was inferior. Apparently every so often Labcorp decides to bring this test in-house and it has always been a problem. One thing they did say, however, is that the fact that my son's LabCorp version of these tests came back extremely low is a sign that the National Jewish tests would have come back normal as well. She said error with the complement tests are usually in false positives (because of the way the blood has to be handled before being sent), not in false negatives. But I will have it re-run anyway.

I understand (sort of) the glutamate-modulating affect, but why was Sammy able to eventually go off the Augmentin XR?

My son's ceruloplasmin (sorry for the misspelling in the title) was 21.7. I believe below 20 is considered low. Since my son's number was so close to low, does this mean something? Anyone else have this? My son also tested positive for KPU and has low Vitamin D.

My son's ceruloplasmin (sorry for the misspelling in the title) was 21.7. I believe below 20 is considered low. Since my son's number was so close to low, does this mean something? Anyone else have this? My son also tested positive for KPU and has low Vitamin D.

I know Diana P. had this test re-reun on her son, I believe before and after IVIG, so maybe you could ask her if it is worthwhile to re-do. I personally would not spend the money on that as I think if you are going to pay out-of-pocket for a test, there are others that might give you more information--for example the GI stool test by Metametrix or IGENEX testing. I had the Cunningham test done on my son (CamK 168) and was glad I did as it convinced me that he at least had something physically wrong with him and did not just have regular OCD (if there is such a thing). That said, I would not rule out PITAND if my son's CamK had been normal. I personally would not run it again.

With a WBC count like that I would keep an eye out for Babesia too in my opinion. sptcmom -- My son's CBC and CMP are all normal as well. His WBC is 6.2 but the top reference range is lower than what philamom's hospital uses (My hospital's reference range is 4.0 - 10.5.). What do you think about babesia for my son? He is testing questionable for lyme and negative for co-infections by IGENEX testing. He has tested very high for KPU (30.5). What is typically the number you see for WBC in kids that are just PANDAS, not lyme. Thank you so much.

I didn't read your post thoroughly, but if it was my child, I would run every test I could. I know it's difficult to take blood with a young child (and that's not an issue with my son), but it's worth it (just my opinion). At least run all the tests that your insurance will pay for. One thing I hugely regret with my son is that we didn't test sooner for EVERYTHING. OCD can be caused by many, many types of infection, not just strep and lyme. Every test gives a little bit more information about what is going on. And I would run the ASO test again in a few weeks to see if it is rising/falling (as well as the DNASE and mycoplasma if they'll let you). And move forward towards PITAND treatment even if the ASO stays low if you still see symptoms, as it certainly won't hurt to try antibiotics for a few weeks. This is just what I would do. Wishing you well.

I believe the test for magnesium, RBC at Quest would be this: http://www.questdiagnostics.com/hcp/testmenu/jsp/showTestMenu.jsp?fn=623.html&labCode=QER I couldn't find a test for the methylmalonic acid at Quest. Seems to be buried somewhere within this comprehensive panel, but I'm not sure: http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TS_OrgAcFull.htm Both tests are available through LabCorp. I haven't had these test redone yet. Actually I forgot, as I have been focusing on my son's KPU results and treating that.

Yes, and possibly his homeopathic remedy will be more effective after KPU treatment as well. We are also looking into mold and heavy metals. I would be happy for ANY improvement as my son has been sick a long time. But he is in great spirits and is handling it all very well, though there is very little he can do. Almost nothing he can do alone.

Thank you so much for checking! Hopefully the word gets out.

Thought I would post, since my son has now been on the 4000 mg. of augmentin xr for almost a month. He has had no change in his OCD--better or worse. He did recently test positive for KPU, so perhaps that is making the augmentin less effective.

I was wondering if any of you have done food allergy testing on your child. If so, which tests and at which lab? Was it covered? Did it help with OCD? Also, my son has very low IgE (8). Is this an indicator that he probably does not have food allergies?

Thank you, Nancy for explaining.

Looked NJC-C4a up at Quest's website. Looks like this test goes through the Jewish Center. I'll be looking into having the test re-done. Thank you all ao much! I don't know where my son would be without this forum.

Thanks for the detail, Vickie. Yes, I know why that specific abx was chosen; in fact, it was actually used many years ago on adult OCD patients and the positive results were documented, but when they couldn't be replicated, the study was somewhat discredited (sound at all familiar?). I added some bolding here pertaining to the "glutamatergic pathways" piece of the puzzle. D-cycloserine isn't the only antibiotic known to have impact on the glutamatergic pathways; beta-lactam abx are also being studied for that activity, and that class includes penicillin, amoxicillin and Augmentin, three of the abx frequently used to treat PANDAS. Can you explain this in simpler terms? Is this why my son's OCD gets worse when he goes off of antibiotics? What is the augmentin xr doing?

That makes sense. But why the normal C4a if your child has mold? I'm wondering if the problem is this new test that is being run through Labcorp instead of through the Jewish Hospital. Maybe it isn't accurate. Is anyone getting positive results on this "new" C4a complement test through Labcorp? (You will know if you had the new one done if your hospital had to order a "kit" from Labcorp before drawing the blood. You will also know by how quickly the test comes back--3 or 4 days.)

I was wondering if there is anyone whose child tested normal for C3a and C4a complement, but high for KPU.

Hi Philamom. Thank you for posting. Here is the rest of that article by Dr. Shoemaker: "Tip-offs to presence of mold illness and not Lyme will be absence of elevated C3a at any time, especially after treatment for mold illness is completed. C4a will be high in both illnesses." My son's C3a and C4a were both normal. My understanding is that C3a normal/C4a high = mold; C3a high/C4a high = lyme. So therefore, c3a normal/c4a normal = neither lyme nor mold. Is that correct? Do you feel that your child has mold issues?

Here are my son's ASO/Dnase values. Notice his Dnase was still rising as his ASO was coming down. His Dnase is finally coming down now, but is still high, even though his ASO has been normal for several months. 10/2010 235/316 12/2010 171/340 02/2011 147/680 09/2011 132/340

I just got my son's C3a and C4a complement tests back from Labcorp and they are both normal: c3a -- 69.6 (normal range 54-202) c4a -- 139.4 (normal range 0-650) This test was not run through the National Jewish Medical and Research Center Laboratory. As I understand it, since April of this year, Labcorp has a new c3a/c4a complement test and is no longer sending it to the Jewish Medical Laboratory. It was run through Labcorp's Burlington, NC office. Is that a problem? Also, what do these results mean? Do these normal values indicate that my son probably does not have chronic lyme? Thank you.