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fightingmom

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fightingmom last won the day on June 4 2014

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  1. 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/
  2. 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
  3. 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 las
  4. 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?
  5. 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 oth
  6. 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.
  7. 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-r
  8. Circulation problem? Could the EPO influence that? I don't know what EPO is.
  9. 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.
  10. 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 myco
  11. 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.
  12. Yes, thank you so much!! You seem to have a lot of ties to many doctors. Do you work in the medical field?
  13. 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.
  14. 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?
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