Cind

Does anyone have advice for possible mast cell issues. Pandas flares always seem worse in the spring and kids has bad pollen allergies. Oddly the natural antihistamines like quercitin and resveratrol seem to cause worse flares. Symptoms are: itching, anxiety. brain fog, unbalanced feeling (like walking on a boat), anxiety, OCD, ADHD-with the unbalanced feeling being the worst. Any advice on what antihistamines might be useful? Or would something else help? I have heard that this could be a methylation issues as well.

Not that they need more views, but what a sh&t show. Starts at: 5:15 https://www.nbc.com/chicago-med/video/the-parent-trap/3707073

Does anyone have a link to the episode? Is it a recent one?

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. https://www.frontiersin.org/articles/10.3389/fmicb.2018.00675/full

Has homeopathy worked for you for PANDAS/PANS/Lyme?Co-Infections?

I agree that adding to the T&A surgery is probably too much. Do you follow up the T&A with IVIG? This is what Dr K recommends...

Yes, it makes sense that the sinuses could harbor infection and activate the T-cells as well. I am wondering about the sinuses now. An MRI showed a sinus cyst. Would a CT be more useful? Do you know if one always have to have general anesthesia to remove a cyst? I wonder why looking for and resolving sinus cysts is not done at the same time as T&A. It seems like it would be easier to handle all at once.

I was watching Dr Kovacevic's talk online (below) where he mentions (at 39:00) how T&A surgery can help prevent a recurrence of Pandas. He seems to be saying that it is helpful not because it removes chronic infections hidden in the tonsils and adenoids. Rather it is helpful because when strep infects the tonsils, the tonsils then create the TH-17 cells which leads to Pandas. So a tonsillectomy helps not by removing the infection, but because it removes the TH-17 creator. Am I interpreting this correctly?

We are exploring a visit to a geneticist. Do people tend to get good info on underlying (metabolic or other) disorders which have treatments? Do they run an exome sequencing test? Do they do something similar to Courtagen? Would Courtagen be more useful?

Thank you-this is very helpful. The main Pandas doc said we could hold off a bit anyway. Now how to tell is the lyme and co have been treated properly...

I have been reading the forum and looking at other sites on Pandas/Lyme. We started out with Pandas and then discovered a telltale Bart rash now (no other evidence of Bart/lyme except a borderline/ equivocal test). We are considering a tonsillectomy followed by IVIG, but now that we think it is lyme are wondering whether to hold off and treat the lyme first. Any thoughts? We will probably have to pay out of pocket for the IVIG and have read underlying lyme can make symptoms worse after IVIG? Does that happen? Any advice would be great.