NancyD

We're doing curcumin, NAC, and Querciplex, which contains quercitin and bromelain. I really love Querciplex!

Strep infection in sinuses kept coming back. Her titers spiked and she would go into severe exacerbation - with violent rages daily. Since being treated for Lyme/Bartonella she has had one sinus infection but no rages and tics never came back. First time this has EVER happened. In fact, we checked her titers recently and although Anti-DNASE B was elevated we did not see any of the severe behaviors -- just a little moodiness.

Up until recently we have always done it at our local community hospital. Now they no longer accept outside test kits so we do it at Labcorp. They do IGeneX.

Time released melatonin was also the answer for me. I've benn taking it all year and wow, what a difference a good night's sleep makes!

My DD's PANDAS was helped by IVIg for a couple of years (she got two good remissions), BUT with untreated Lyme, Bartonella, and MycoP the infection kept coming back and while her tics never returned the anxiety and OCD kept getting worse. That changed once we started treatment for TBIs. We no longer needed the infusions. She was helped by multiple abx and supplements. We did also find out she has a methylation problem and we're still waiting for her KPU tests to come back, although we do know she is low on zinc.

I would agree with finding a good LLMD fast! He won't get that help at CHB. This is NOT their specialty. My DD spent two weeks there and it was a nightmare! She was finally diagnosed with Lyme and Bartonella months later and got the proper treatment but we have to travel to NY from the Boston area.

My DD tried several SSRIs years ago -- long before her Lyme/Bartonella diagnosis -- and each one put her into a manic episode. She raged more. We won't ever try another psychotropic med again.

My DD took Biaxin in combination with Rifampin for Bartonella and herxed very badly. She too came out negative on the co-infection panel but after we started a trial treatment she broke out in a Bartonella rash in addition to the herxing. Ultimately we had to take her off it because it caused her GI distress. I wouldn't yet rule out Lyme or a co-infection. Years before we started Lyme/Bartonella treatment -- when I thought we were just treating PANDAS-- we tried many different abx and the only ones that didn't make her worse were PenVK, which did not help, and Augmentin XR, which helped a lot. Now I realize she was herxing to all the other abx. Have you seen an LLMD?

My DD's ASO and anti-DNASE B levels have been in the normal range for well over a year and they were always consistently high (anti-DNASE B was often in the 3000 range). She had chronic strep for 13 years. For the first time in a long time she had a sinus infection a few months ago and anti-DNASE B was up in the 500 range. Just re-did it and am waiting to see if it went down.

Also see http://www.miriamjangmd.com/DefeatAutismNow-protocol.html "I.V. Glutathione: There have been some benefits with this therapy as far as calmness and getting rid of "tics" are concerned..."

Check this out http://www.jneurosci.org/content/16/19/6038.full.pdf And http://www.1whey2health.com/parkinsons_glutathione.htm

Our doctor just emailed back it was fine to take SAMe and NAC together.

If you're talking about glutathione IV I would first try that. But if you're talking about oral glutathione I would try inositol. In our experience, glutathione IV brought on an amazing calmness over my DD. inositol, on the other hand, had a paradoxical effect on her. Having said that, I know a lot of families have great luck with inositol.

Valid point since DD is already on fairly high doses of NAC. I just emailed our Dr to check on this. Will report back what he says. I searched online for combo effects but could not find anything.

I have no doubt about the amazing effects of IV glutathione. I saw it first hand in my DD several years ago. She had severe colitis and was allergic to everything she put in her mouth. Her diet was mostly rice based (she was allergic to anything with gluten, dairy, soy, etc.). After two years of monthly glutathione IVs I started challenging her diet. I discovered she was no longer allergic to these foods and could eat anything as long as it did not have dyes or additives in it. If we didn't live so far from our doctor we would still be doing it. Every time we go there we try to do another glutathione IV. I wish it were easier to get!! 'Course, back then I did not realize that she also had PANDAS, Lyme, Bartonella, and MycoP. Laura, what is the problem using SAMe and NAC combined? DD is on NAC and she just started SAMe earlier this week.

Awesome...I wanted to hear this but missed it the first time. Thanks for posting, Wendy!

It does sound like a herxing effect. One thing I read is that magnesium can be toxic if you have liver or kidney problems.

Jarrow's is dye free. Otherwise it would say yellow in the ingredients. I tried finding a 400 mg pill that is dye free but could not. Just the 200 mg pills.

We tried it several years ago but did not see anything (positive or negative).

Thanks so much!!

Can anyone recommend SAMe that is dye free? The one I just ordered from Progressive Laboratories has yellow dye in it. Thanks! Nancy

For anyone whose child has a mutated MTHFR gene and has a problem with methylation, I just posted a link on another thread about tics and anesthesia. In this article it discusses how noxious oxide can harm the methylation process. Thought it was interesting.

Here is a good article that addresses anesthesia and the immune system. A lot of the same things apply even though it's specific to ASD. I went by this when my DD was scoped in summer 2010 and needed anesthesia. Her tics, which had been really bad prior to first HD IVIg infusion in August 2008, were finally gone 100% and I was so afraid they would come back after anesthesia. Thankfully they did not (and still have not), but I was really careful about what we gave her for the procedure. http://autism.com/fam_AnesthesiaandtheAutisticchild.asp Especially if your child has a mutated MTHFR gene and has a problem with methylation, stay away from noxious oxide (gas). Try to minimize stress because that can make tics worse. Give frequent Epsom salts baths to relax him. I also like magnesium Glycinate.

Recurrent sore throat, swollen glands, fever, GI problems, infections (viral, bacterial, fungal) can all be signs of Lyme disease. Suggest testing through IGeneX.

My DD was declined first go 'round so she took PSATs without any accommodations. We are now getting letters from 2 doctors and her counselor that speak to her need to have breaks when frustrated and to have additional time on assessments due to impact that her anxiety has on her cognitive efficiency and speed of recall. I'm hoping that helps.