Hi Sebreg- the challenges in her getting treatment are physically being able to travel and expense. I’m doing my best to provide options and support, but I think she really prefers to be seen near her home or would like to skype. Every office I’ve called though, wants to see her in person initially. I think that’s important too.
She has Skyped with a Dr Jay D - whose wife has battled Lyme, thyroid and an ALS diagnosis. She liked him and I think would continue with him if the finances were there. I prefer her to see someone in person at this point.
From a link above, I just watched the Our Story video - amazing! I was wondering if anyone here has taken the Cholestyramine (CSM) med or supplement? It seems like something she could benefit from- but again, I think a doctor needs to monitor all this.
I did email Dr J (not DC), but Dr J in Rockville, MD about the anti Gad marker and the similarities from the link I posted above. I’m hoping to hear something back soon. Girlie did send me some links to LLMd’s in TX. I’ve tried a few, but so far not had much luck! My friend cannot talk on phone (her speech is too affected). I actually live in another state. She has many family members trying to find answers, but there hasn’t been an ideal solution as of yet. Every time I post or make a call, I’m hoping for a solution that will work for her!
"Our Story' - I think you're referring to the couple in my Province (BC, Canada) - Justin and Christa?
Sorry if this comes off as harsh - but I really think your friend needs to see a VERY experienced LLMD that has successfully treated lyme patients diagnosed with ALS. Even if she has to travel a bit.
Her condition has progressed to a point where she needs to pull out all the stops...and also not wait 3-4 more months...she needs to get an appt scheduled.
Again, apologies if this comes across as rude... but the condition your friend is in....it needs attention now.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi