bsimon3

Hello, There is an article in the Fall 2015 issue of the trade magazine "Biosupply Trends" that summarizes PANDAS/PANS/CANS and provides highlights of some small studies that looked at efficacy of tonsil/adenoid removal versus antibiotic treatment. Interesting. Jump to page 48. http://www.bstquarterly.com/emagazine/currentissue/

I can't take any credit for the petition, just passing along the information.

I forgot to point out to everyone that 25000 signatures are needed by Feb 10 and we are only about 15% of the way there as of today. If you want to get the White House engaged on the issue of Lyme disease, sign the petition and ask your friends & family to do the same.

Well done Hopeny! I forgot to point out to everyone that 25000 signatures are needed by Feb 10 and we are only about 15% of the way there as of today. If you want to get the White House engaged on the issue of Lyme disease, sign the petition and ask your friends & family to do the same.

The petition may be found here: https://petitions.wh...isease/Pj9jG0pX. The language of the petition is as follows: we petition the obama administration to: Reform the Infectious Disease Society of America Treatment Guidelines for Lyme Disease Lyme disease is at epidemic levels, posing a significant threat to public health. Lyme can lead to chronic and debilitating effects if not properly treated. Lyme is leaving masses of people in progressive states of illness and financial ruin. The Infectious Diseases Society of America's treatment guidelines are to blame, they promote the idea that Lyme is a simple, rare illness that is easily cured with 30 days of antibiotics. This is not true. Insurance companies are denying payments for medications even when deemed medically necessary after 30 days. Doctors who treat Lyme patients are being investigated and prosecuted for not conforming to such guidelines. Please sign this petition to reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary.

The petition may be found here: https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX. The language of the petition is as follows: we petition the obama administration to: Reform the Infectious Disease Society of America Treatment Guidelines for Lyme Disease Lyme disease is at epidemic levels, posing a significant threat to public health. Lyme can lead to chronic and debilitating effects if not properly treated. Lyme is leaving masses of people in progressive states of illness and financial ruin. The Infectious Diseases Society of America's treatment guidelines are to blame, they promote the idea that Lyme is a simple, rare illness that is easily cured with 30 days of antibiotics. This is not true. Insurance companies are denying payments for medications even when deemed medically necessary after 30 days. Doctors who treat Lyme patients are being investigated and prosecuted for not conforming to such guidelines. Please sign this petition to reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary.

Hi tpotter, no we haven't felt the need. Our Pediatric LLMD likes to keep the protocol as simple as possible, with as few "extras" as possible. DS10 takes Burbur, parsley, multivitamin, cod liver oil, vitamin c, and a probiotic as well as methylb12 and methyl folate (the latter 2 are to address a single MTHFR 677 mutation). We also opt to throw in the occasional Epsom salt bath for good measure (for detox). So far it seems to be enough and DS continues to recover while on his pulse antibiotic treatment. Our LLMD runs safety labs every 3 weeks to check metabolic/liver function, which is very reassuring as the parent I can tell you!

Hi Hopeny, Yes, our DS10 takes Burbur, 15 drops per day. We initiated it with the blessing of our LLMD. It's for detoxification. He started taking it when he was 9 and weighed about 70 pounds. He takes Nutramedix Parsley as well, also for detox and our LLMD approves of that as well.

We visited NYC in July (also as part of a medical trip) with DS's age 7 and 9. It was fabulous! We stayed in midtown at the Belvedere. http://www.belvederehotelnyc.com/. (DH found a great deal somewhere on the internet.) There is a TON of stuff to do in NYC with kids. I suggest getting some books on visiting NYC with kids from your library (Frommers has a good one). Some highlights for our family: Central Park (huge playground at Columbus Circle, sailboat pond - you can rent your own miniature boats to sail - fun!), Statue of Liberty (we went early in the morning to avoid the long lines; kids enjoyed seeing it up close from the ground - it was closed for renovations - and there is a good free audio tour for kids and adults which they enjoyed), seeing the nighttime lights at Times Square (and taking a spin on the indoor ferris wheel at Toys R Us which is right there), the Empire State Building (go at night for short lines and a stunning view of the city!), the American Museum of Natural History, The Met ("pay as you will" - don't feel you need to pay full price if you're just going to breeze through quickly with the kiddos), and the LEGO store at Rockefeller Center plaza. NYC does have a bed bug problem, but we were able to find a clean room by screening hotels using www.bedbugregistry.com before making a reservation ourselves. I also recommend just doing a google search of the hotel you are considering + bed bugs to see if anything comes up on any other travel sites such as Trip Adviosor. Then inspect your room yourself right when you get there to make sure it's clean. We do this no matter where we are traveling. Enjoy!

I can't speak for Dr. K, but Dr. T (NJ) tests for other triggers. Have you looked into Lyme yet? I know some out there feel it is overdiagnosed and I do not want to lead your thread down a controversial path, but for my DS, it appears that Lyme/coinfections are definitely his issue, not strep. Wish someone had told me to check for it with a good Lyme doc and IGeneX testing years ago when this all started.

We separate doctor appointments from blood draws. We go to the doctor appointment, get the test order slip, and then get the draw done on a different day. It helps to be able to tell doctor-weary DS9 that the doctor visit is just a "talking appointment". Good for you in taking the next step to help your child get well. It's not easy for DS (or you), but you are doing the right thing! Press on!

My DS9 has his first appointment scheduled at Jemsek Specialty Clinic in a few weeks. He is scheduled with Tara Fox, CNP, who I am told sees all the pediatric patients. If you have have worked with Dr. Jemsek's clinic, especially Tara Fox, please PM me with your experience - good or bad. We are traveling from out of state because we want to see one of the best and it's important to me that it be worthwhile. Your candor is appreciated and your comments will be kept confidential. Thanks!

I am about halfway through it. While it is very interesting, I haven't yet read anything that makes me say "ah ha!". It's a scientist's look at how infection affects generations of people. The assertions are solidly backed up with summaries of laboratory studies and retrospective analysis of survivors of challenging times (e.g., famine). Glad I was able to borrow it from the library as it is not a 'must-have' for the home library, IMHO. Not finding any practical, ready-to-apply Information, but still very interesting! In case you haven't heard about it already, the author of the book, Paul Patterson, participated in a discussion with Beth Maloney (Saving Sammy). I haven't listened to it yet, but it's possible you could hit the highlights of his book by listening to their discussion. I'm sure you could find a link to the audio archive on the Internet somewhere.

landamom, just PMed you.

Thanks for the advice about the KPU. Will bring it up during the F/U appt. OK, gang, so I now have possession of chlorella, sublingual methyl-B12, P-5-P form of B6, and L-methyl folate. What now? I know I need to go slow with them. Do I start them one at a time and if so, does it matter which one I start with? Feeling more like a newb all the time...