I’ve been browsing this forum for examples of people diagnosed with ALS and then subsequently found to have a positive Lyme test. I believe user Bluelyme is on forum regular who has this diagnosis history. I’m looking for advice for a friend who is not doing well at all.
A year and half ago she began falling, feeling weak, numbness, etc. Two separate hospital stays resulted in first a diagnosis of stiff person syndrome (due to high anti-GAD numbers) then a few months later was rediagnosed with ALS. Both hospital stays, extensive testing was done including for Lyme disease. One facility was a university hospital and very thorough.
Over the months, she has loss use of every limb, no longer has much of a grasp, cannot lift her arms, cannot walk, Speech poor, swallow weak, breathing starting to decline, etc. A very rapid course of deterioration. Her family has always considered Lyme as a real possibility. They sent her urine (after massage) to DNA connections. They got a result back today showing a positive result for Borrelia miyamotoi NPS.
Please, can anyone offer advice or suggestions? Would antibiotics be too challenging for her? Can she stop the progression? Can you recommend a Lyme specialist? What would you do with these results? Thanks to any and all who can weigh in!
Hi Fisherdog - welcome!
It’s too bad that she didn’t get to a LLMD a year and a half ago before symptoms progressed so dramatically. So sad!
I urge you to suggest a LLMD who has extensive experience with not only treating Lyme disease but also Lyme induced ALS.
It will take a miracle - and she will most likely need IV treatment.
The LLMD I see said in an interview that he can offer some hope for ALS patients if they can still swallow.
If it were my loved one - I would give it a shot - so no regrets - miracles do happen. It will be costly though - thousands of $$... BUT I think they will know within a couple of months if it is working and whether or not to continue.
Send me an email if you want the contact info of my LLMD. I can fill you in with more details too.
He is one of the most experienced llmd’s there is.
What area of the U.S. is she in? (NE...NW...SW.... etc)
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