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The REAL issue here......all the lyme, pandas, etc...


eljomom
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....wow. Internet has been down for days here, so I've been out of the loop. But just started from the most recent, and LLM's recent post about talking openly about Lyme, etc....so I quickly went to "the post" that generated the hot debate, once again. I only made it to about the 5th message before i stopped reading. The bottom line, and I think this is CRUCIAL on THIS forum and ANY forum, is that NONE of us on here are pandas doctors. And even the pandas doctors themselves are CRAP-SHOOTING here!!! I mean honestly, given the VAST array of not only symptoms, but also response to treatments, how can ANY of them really know what on earth is the best route for ANY of our kids at this point?? They are well-meaning, overburdened doctors who are trying their best, but science has not caught up with them yet, and they are truly making their best attempts to treat based on the available science out there to date, which in the case of PANS, is not enough.

 

But I digress.......the point here, I feel personally, is that we need to make sure to share our stories here...what our kids symptoms were/are, duration, and responses to what specific treatments. And to ENCOURAGE each other, and offer "personal experiences" as JUST THAT . And ONLY that. I remember when I first started on here well over a year ago. It was very educational for me. I learned a lot. I felt less alone. Then it got confusing. I was getting told what I "need to do right away" by WELL-MEANING (and let's REMEMBER THAT....WE ALL ARE WELL-INTENTIONED PARENTS HERE TRYING TO OFFER OUR BEST ADVICE) parents. And one of these things was Lyme testing. Which we did, and which was Igenex "negative", but which I was then told "NO WAY IS IT NEGATIVE WITH ALL THOSE IND'S AND +'S ON LYME-SPECIFIC BANDS...do NOT TRY STEROIDS!!!" by, again, well-meaning parents, who's kids I honestly don't think are still 100% (just a guess....)...many, many people suggested this.... so we refused our pandas docs suggestion to try a month of steroids. Which then sent us on a long, rabbit-trail, etc. NOT BLAMING anyone here but myself, but we HAVE TO BE CAREFUL, especially with new parents here, to not misguide them or direct them.

 

I still feel like the MYCO P thing was/is just another rabbit-trail. YES< it has been known to cause ocd and flairs. BUT SO HAS A COMMON VIRUS, INFLAMMATION FROM A WOUND, STRESS, ETC. I think one person/doc finds a possible cause due to something FINALLY showing up "not normal" such as IgG for myco p and BOOM---everyone goes on a myco p trail. I have my reservations about treating IgG myco p, and even IgM myco p, especially with NO SYMPTOMS....IgM can mean "recent" but "healed" infection. Yes, I do understand that some here have found remission from treating myco p. But many others have not. So again, it's all a crapshoot, and while I know it can be valuable to search out infections, and cling to any abnormal lab result, it's not always in the best interest of eVERYONE , and it's taken people on crazy paths.

 

I guess my long-winded point is just to be careful. Share your story. Share emotional support. Answer questions people pose either by attaching a link to research, or say it is your own "personal, experience-based theory" or that a specific doc (and NAME THEM!!) has said "Quote." and then QUOTE THEM, without putting a personal spin or translation on it. "this is what we have done/tried, based on these symptoms, which lasted this long." Suggest doctors and what they generally do in diagnosing, and treating.

 

I hope noone takes offense to this....I appreciate everyone on this forum, first and foremost, as a parent who is feeling the knife-through-the-heart pain of watching a child struggle with PANS. We are all hurting, all wanting the best for our kids, and trying to be helpful, but let's not try to be the doctor to everyone else's kid. I know for me, I keep trying to find the people who's kids present like mine, and hear what has worked/not worked for them. But at the end of the day, our kids chemistry is different, even if symptoms are very similar. So let's use this forum for what it is....encouragement, education, sharing information, but NOT diagnosing and treating each other's kids.

 

Blessings,

Wendy

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I have been holding back posting, although I do have a lot of thoughts on these issues-

 

but Wendy- I think what you said is key...

 

we should post our experience, as that -our experience. We should try to be as clear as possible about where info came from, and realize, just because one doctor believes it, does not make it fact.

 

I think, we SHOULD argue- it is normal, and we can learn things from the argument. We are ALL passionate, smart, and stressed. I think it is just important to keep the argument in perspective, and remember that we are all trying to help.

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