Cind got a reaction from bobh in Strep alters gut leading to inflammation
The results obtained from this study suggest that streptococcal infections can alter gut microbial communities leading to a pro-inflammatory state in the gut by selecting for specific bacterial strains that are normally associated with gut inflammation and activation of the immune response (Figure 7). This condition is likely maintained in patients, even after the infection itself has resolved. Moreover, an altered GM composition could have indirect effects by reducing the production of metabolites involved in important brain functions such as SCFA, D-alanine and tyrosine metabolism, and the dopamine pathway. Thus, the GM composition may possibly influence behavior, as clinically observed in PANS/PANDAS patients.
Cind reacted to kos_mom in Tonight's Chicago Med episode
I contacted PANDAS Network right after the episode. This morning I received this response from Diana Pohlman:
"We heard from lots of parents and 600 innundated the producers email. We are following up with an email to the producers as well. Happily 20-20 is doing a great story on REAL TREATMENT mid May and that will be on ABC."
NBC is the producer for Chicago Med.
Cind reacted to bobh in Has Homeopathy worked?
My wife has used a few homeopathic remedies for our son, but I don't believe that they helped in any significant way. In fact, when a non-believing (of PANDAS/PANS) doctor suggested our improvement on abx was placebo effect, my reply was "why didn't this kind of placebo effect happen with the homeopathic remedies we tried before the abx?"
Cind reacted to jan251 in Tonsils and Pandas-not about hidden infections?
Interesting. If the Th17 is coming from lymphatic tissue, I suppose it's possible, except that the tonsils are not the only lymphatic tissue in the area and the tonsils aren't the only location for strep infections. There is lymphatic tissue in the sinuses as well as many other areas of the body. This might explain why T&A seems helpful for some cases of PANDAS but nowhere near all. Last I remember, the limited data indicated that T&A helps about half.
T&A did not help my kiddo, though I do not regret it. I'm glad we eliminated the possibility. He recently had a sinus CT and we have an appt with ENT soon to discuss the results. Plus, it would be unsurprising to me if my kiddo had strep in the gut, where there is lymphatic tissue, though I don't quite understand how it can really hide there from antibiotics, unlike in the tonsils. Also, our doc frequently mentions that strep can be in the urinary system (bladder) as well.
Cind reacted to bobh in Glutamate and Pandas
I don't pretend to understand it, but there seems to be a link between phosphatidylcholine and glutamate (where one inhibits some of the action of the other). A search of this forum for posts with both these items comes up empty, so I am presuming that phosphatidylcholine as another possible antidote to "glutamate storms" has not been explored in this forum, though both are well-commented on separately.
I mention only because our PANS son had an improvement on a high dose (3000mg/day) of phosphatidylcholine over the last several months. We trialed on and off it several times, and I posted some discussion and our results at the end of an old thread here: http://latitudes.org/forums/topic/18965-phosphatidylcholine/#comment-186762 .
Cind reacted to 4Nikki in Glutamate and Pandas
I don't quite understand the in numbers and what they do but depending on what protein and anti stuff are the build up in the basil ganglia can cause different symptoms. DD's pandas doc. Said with the three d2, lyso & kam being out of range her tics and rage makes sense as does her reaction to ibuprofen, benadryl and pseud. Mitochondrial support supplements have greatly reduced her symptoms. The big one being out of control rage. From every day to once or twice in a month is a big improvement. No gluten and limited sugar.
Cind reacted to laure in Lyme and IVIG
You should absolutely address Lyme and coinfections before beginning IVIG, especially if you are paying out of pocket. You may, like so many others, find that your son needs 3 or more rounds of IVIG, and those still may not be effective if Lyme and coinfections are playing a role. Although IVIG will boost his immune system, it can't take the place of aggressive antibiotic/anti-malarial treatment.