PITAND vs. PANDAS

[pmoreno]

As many of you here probably already know, PITAND (pediatric infection triggered autoimmune neuropsych disorder) Has a little bit more to do with viral infections than with strep, but kids can actually have both - in other words, they can have a strong immune response to strep and also a strong immune response to viruses. I am beginning to wonder if Gaby doesn't fall more into the PITAND category than PANDAS. When she first displayed symptoms it was a year ago after a severe viral infection with a fever lasting a week and a negative strep culture. She's never had a really huge ASO or DNAse B titer. She did have strep last summer (during her perfectly normal 3 months) and did not have any PANDAS symptoms - we found out by accident that she had it because her twin had symptoms, was being checked, so while Gaby was in the office too, she got the swab test and it was postive. She was treated with abx and we had no issues. It wasn't until a mild viral infection at the end of July that she actually started with her PANDAS symptoms again in August. and has had them ever since. She had a really good response to IVIG within the first few weeks (indicating that it probably helped a lot with the inflammation in the brain, then even with prophylactic abx - augmentin-, she slowly slipped back to pre-IVIG behaviors. Some of the people here on the forum state that the abx seems to make their kids worse, and others say it makes them better. I think that may be because the ones who are worse may not actually need them - their symptoms may be brought on more by viral than bacterial triggers, whereas the kids who benefit from the abx probably are triggered more by bacteria. Again, that's not to say that kids can't be triggered by both. I'm realizing by reading on these forums that although these kids have a common denominator - their PANDA-like symptoms - the triggers can be so different for all of them and their specific reactions can also be very different - from mild to severe responses. It would be a shame to have kids on endless antibiotics (along with all the side effects - including yeast) if some of them might not even be triggered by strep, but rather by viruses. There is a blood test called D8/17 which is a

marker for strep exposure and the level of antibodies produced. Gaby did have this and it shows that she did react to strep so I believe she is probably triggered by both viruses and bacteria, however, I see more of a change in her after a virus (especially with these reoccuring herpes simplex lesions that she gets at least every other month. She had a huge outbreak (first time ever) inside and outside of her mouth in the week before her PANDAS symptoms originally started, then had them once or twice a month for a few months, and now about every other month. I've tried natural anti-virals like raw, crushed garlic, cooking with coconut oil, but unfortunately it has not been effective in warding this off. Not sure if long term use of acyclovir would be an option. Any ideas anyone? Pat

[EAMom]

Pat..have you ever tried Lysine for herpes? If you google you'll get a lot of info. Here's an example http://www.best-herpes-treatments.com/lysine.html Apparently getting the right (high enough) dose is important.

 

Also, a weird theory...maybe the herpes sores in Gabby's mouth are acting like the tooth extractions did for my dd. The lesions allow strep from the mouth/throat (probably intracellular, carrier state) to enter the bloodstream and cause PANDAS symptoms. The fact that Gaby cultured positive in the summer (when her twin had symptoms) makes me think she may tend to be an (assymptomatic) carrier. (Or maybe she just didn't have symptoms that time since you caught it early and nipped the strep in the bud?)

 

Also, don't folks get more herpes outbreaks with stress? So, maybe the stress of strep/pandas is responsible for even more herpes outbreaks? Sort of a viscious cycle...

[EAMom]

Another thought....

http://www.nytimes.com/2008/10/14/health/1...70&emc=eta1 This article talks about how a viral infection can

allow a bacteria (pneumocci in this case) to "slip into" the body and cause disease. Maybe a similar thing happens with PITAND and strep?

 

"The bacteria live in the nose and throat, usually as microbial freeloaders of no consequence. Occasionally — often after a simple viral infection — pneumococci slip into inner areas of the body and cause disease. Weaker immune systems in the very young and the very old leave them most vulnerable."

[TiredMom]

Pat..have you ever tried Lysine for herpes? If you google you'll get a lot of info. Here's an example http://www.best-herpes-treatments.com/lysine.html Apparently getting the right (high enough) dose is important.

 

Also, a weird theory...maybe the herpes sores in Gabby's mouth are acting like the tooth extractions did for my dd. The lesions allow strep from the mouth/throat (probably intracellular, carrier state) to enter the bloodstream and cause PANDAS symptoms. The fact that Gaby cultured positive in the summer (when her twin had symptoms) makes me think she may tend to be an (assymptomatic) carrier. (Or maybe she just didn't have symptoms that time since you caught it early and nipped the strep in the bud?)

 

Also, don't folks get more herpes outbreaks with stress? So, maybe the stress of strep/pandas is responsible for even more herpes outbreaks? Sort of a viscious cycle...

 

Hi Pat,

This is what happens with my dd. Her 3 main epsides of PANDAS/PITAND have ALL been with viruses. I don't know how the antibiotic she's on is supposed to help with this... But, it doesn't seem like all viruses, just ones that cause a fever and swollen glands in her neck. For example, she had a very bad reaction when she got Fifth's disease last March. Which has had me wondering about antivirals, and but my limited understanding is that some longterm antiviral medications can be hard on the body. Peggy

[EAMom]

The lysine should be pretty safe...it's just an amino acid. But, I've only heard of it helping herpes, not any other viruses.

[pmoreno]

Thanks for all your input. In the meantime, I've done some more research on this - and here's what I've found out. Lysine is good, but will do nothing to shorten a herpes outbreak once it's started - you have to take it long-term and the problem with that is that it counteracts arganine (another amino acid) which is good in terms of preventing herpes, but bad in the long run as far as a balance goes since arganine deficiency can bring about some issues of its own.

 

Some of the meds out there like acyclovir or valtrex just shorten the symptomatic period, but are not recommended for long term use because of their side effects and they have not been proven to be that effective as phrophylactics - they've even found a couple of acyclovir resistant strains of herpes recently - not good.

 

Abbreve is very good (from personal experience with Gaby). It's a little pricey $17 a tiny bottle, but lasts forever. The trick is to put it on the very moment that they complain of a tingling or itching sensation on their lip. However, this is all just superficial - trying to combat the symptoms once they're there.

 

I have found that the most effective natural and safe way to keep herpes at bay (and there's absolutely no cure for herpes at all, period!) is something called red marine algae - I got it at Whole Foods - will give her a capsule a day for starters - maybe that would be enough - it interferes with the way the virus replicates, I think - google that, you guys & see for yourselves. Pat