fightingmom

Here is a link to the facebook page for the protest. Any of you that are local, please, please join us. Email, fb and call all local media, government officials, anyone you can think of. https://www.facebook.com/events/125271334288337/

Hey guys, I know it's been a while since I posted but I wanted to let you know that we are in the process of organizing a rally/protest outside of the Boston Children's Hospital in support of the Wray's and to spread awareness for PANDAS/PANS. This will be an organized rally with professional signage that Lynn (PRN -- and Laurensmom on this forum, I think) is having printed and we will have printed literature and educational materials to offer anyone that will take it from us! The TENTATIVE date is next Thursday from 8am-3pm --HOWEVER, this depends on if we get the permit on time. We may have some media coverage as well. It's looking very likely that we will. If any of you are in New England and would be interested in coming down - PLEASE DO. Let's be heard AND seen for our children!! Hope everyone is well!

That was interesting. I had to read it again today to wrap my head around all of it. Makes a lot of sense though. Thank you. That's very interesting. Do you believe your daughters lyme is congenital? just curious. It was your daughter that did the culture test and was positive, right? possibly, or we both got it at the time of her tick bite- i cant remember if i used my fingers to remove it. but she's had off/on issues since 18 months and then things went haywire after the tick bite. i was positive on the igenex wb dec 2010. just ran neuroscience lyme immune id on myself last week but dont have the results back yet. Yes, my daughter cultured positive with advanced lab in december, a year after lyme treatment, 5 years after tick bite. Of course, she could have been reinfected - who knows. Hey, now did your neuroscience labs come back?

That was interesting. I had to read it again today to wrap my head around all of it. Makes a lot of sense though. Thank you. That's very interesting. Do you believe your daughters lyme is congenital? just curious. It was your daughter that did the culture test and was positive, right?

figured I'd tack on here since my results were posted on the first page. Got my SON'S Igenex results: IgM **41 + **83/93 + IgG **41+ Not quite as 'impressive' as my results, but 83/93 seems to be a significant band particularly in late stage lyme - which coincides with my congenital theory. Bartonella tests were negative all around, I did the FISH and the IgM/IgG -- what a waste. I still think he has it. Do any of you know why the description for band 83/93 says it's the specific "antigen" for the lyme bacterium? Other sites describe it as the DNA for Bb. Are the other bands not testing for the same thing? Noticed the wording is very different for this band. Oh, and his CD57 was also 20. WBC 3.6 LOW (Range 4.0-9.1) Neutrophils 38 LOW (Range 40-70) Lymphs 50 HIGH (Range 20-47) Neutrophils (Absolute) 1.4 LOW (Range 1.5-5.6) Not out of range, but worth noting: Monocytes 10 (Range 3-10) Hope everyone is doing well. I've been quiet lately, treatment is kicking my butt.

Stoneybrook still does testing? For some reason I didn't think they did. Do you have a link to their lab. I'd love to see if they take United for my husband. I am about to submit bills for my son and I from Igenex to UHC PPO. I'll post back if they pay.

Hi there. Sorry I had not responded to this, I did read it a few weeks ago and meant to come back to reply, but I have been so tired lately, I just didn't. No excuses. I'm sorry for not replying when you took the time to respond, though. Thank you. Yes, our next appt is via phone and we have had meds called into the pharmacy already. So, that is nice. At least we won't have to travel for another month or two to MD again at least. Have another appt. with Dr. B. in CT for PANDAS stuff in a few weeks, but that seems like nothing compared to that Maryland trip. I am finishing up my last pre-req to apply to nursing school, but application period is in August for Spring semester. So, in about 4 weeks when I finish up microbiology I will be on a break from school until January 2013. Hopefully by then, I will have made some progress. I've worked so hard not to pursue this, and I've waited so long to go back to school, I'm not giving it up. I like your notebook idea and separate cabinets for meds. I need to get more organized in that regard. My son has been having issues with meds, too. Throwing up at school and his esophagus is bothering him so swallowing is an issue now. More labs from him came back abnormal. WBC's all out of whack. His CD57 also came back as a 20 -- same as mine, which is weird to me. Waiting on his Igenex results. I am getting swollen and painful veins now. In my arm and my foot I literally have round lumps over my veins and it's extremely painful. Of course, I am blown off about it. Was told perhaps I have a tendon injury in my foot. Idiots. My husband is next in line to be tested for Lyme. Trying to give it a month or so, this is getting so damned expensive. YES, my husband explains a constant pain in the back of his eye, accompanied by some stabbing pains that come shooting in out of no where. I don't like to mess around with eye stuff, you never know would could lead to permanent damage. I'm way more concerned with his eye at this point, than my heart. Interesting that the heart issues are seemingly a common product with lyme and co. and you also have mycoP and had eye issues. We have an appt. with the opthamologist at 11am now. I'm trying to figure out if I send husband down the lyme road right now and spend even more money we can't afford on testing and more doctors, or just treat the eye and mycoP and see how it goes. I'm starting to truly question the idea of possible sexual transmission of all this stuff. Just saw your post on eye pain. I had that too and it was scary. That is when I went to the immunologist and had the Western Blot done and discovered that I am +. I have taken about 2 months of Doxy and my eye symptoms are better. I went to a Dr for my eyes and he didn't "get" the Lyme thing at all. It was almost like seeing a Dr who does not believe in Pandas. It was pretty upsetting. I can imagine that would be extremely upsetting. How are your eyes doing now? My husband is doing better, still on Levaquin for MycoP though, and I wonder if that was helping more than the drops. I strongly suspect it's the mycoP or possibly Lyme (he hasn't been tested yet) causing his eye issues. This crap is so freaking exhausting. I was always that one of my friends and family that touted about organics and BPA's in plastics and recycling, etc. -- I even am careful not to over-vaccinate my pets and feed them grain free, organic or raw foods. It just makes me so mad. I feel like I "do all the right things" and still my family gets sick...but the people down the street eating fast food all day are fine, ya know? That was my little "it's not fair" cry - I'm over it for now, but deep down, it does really get to me.

Circulation problem? Could the EPO influence that? I don't know what EPO is.

Yes, my son went from honors classes and all a/b's to agonizing for HOURS over a few algebra problems that he had already known and been able to do. We had to have him removed from his honors math class because of it. He said he didn't know why, it was just too hard and his brain didn't know how to do it anymore.

Yes, thank you to everyone willing to share. It's very helpful to hear both sides of the coin and your personal experiences. Nancy, thanks so much for the very informative reply. We have a lot of similar symptoms here -- both in your daughter/my son and in yours/mine. I believe I have had Lyme for longer than my son has been alive and if he has it I believe he contracted it congenitally as well. We are doing our labs on Monday and I'll post the results when we get them. For right now, I am positive for Lyme, have clinical dx and rash for bartonella and high mycoP titers (my husband's mycoP is extremely high, both IgM and IgG -- I think he needs to be tested for Lyme, too at this point -- and that opens a whole other set of suspicions as he was healthy as a horse until about a year ago and I can't help but wonder if he contracted lyme from me). Please continue posting if there is more to add. Thanks again to all of you. P.S. Is Dr. B's IVIG protocol HD or LD? If I remembering correctly it used to be LD, but has he changed it?

I have seen this in my son a few times. They may be slightly dilated at times but a few times extremely dilated and it's a but freaky.

Yes, thank you so much!! You seem to have a lot of ties to many doctors. Do you work in the medical field?

Very helpful, yes. Thank you! 70% is a big gain for a 17 year old 8 weeks post IVIG. I'm surprised by Swedo's response, too. Glad you crashed the conference. Anything else you learned there that would be worth sharing? We don't have tics either. I really hope the relief lasts. If anything, at least you have confirmation now! Good for you for persisting on! I too feel like we wasted so many years.

Interesting about the PEX. How long have you had the positive results? If you don't mind my asking, how much does that cost? I thought I read in the neighborhood of $30-45k?

Congratulations on the approval.