So do you test positive for Lyme if its ALS? Do you start to improve for a bit if its ALS? Hubbys breathing has deteriorated so bad in the past few days. Has all of the ALS symptoms. Started seeing Neuro last year and it cost us $4000 for office visit and blood work. So trying to go the Lyme route. Had to just stop the IV doxie because of diarrhea. IV vanco plateaued after 9 weeks. Just don't know where to go now.
Posted by Catgirl (Member # 31149) on :
I vaguely remember (think it was Dr. Burrascano, but can't remember) on the documentary Under Our Skin of a lyme doc saying that the only way to know for sure is to treat for lyme, and if the patient gets better, it was lyme.
I know difficulty breathing and swallowing is a sign of ALS, but it's also a sign of babs. I have several of the symptoms (just read them on the ALS association). I have lyme and company and I'm getting better. Your husband may have both lyme and ALS. If so, I would think it treating the lyme could only help.
Posted by Lymetoo (Member # 743) on :
He has babesia, too, right?
Posted by lyme-o (Member # 35115) on :
Clinical diagnosis only lymetoo
Posted by Mathias (Member # 5298) on :
Mycoplasma can cause ALS symptoms too. I would get tested and if positive get treated or it. I had an ALS presentation due to a CNS mycoplasma fermentans infection. Spinal tap was unfortunately required to make the diagnosis.
Posted by mlg (Member # 35383) on :
@Mathias-what did you treat the mycoplasma fermentans with?
Thanks,
Posted by lyme-o (Member # 35115) on :
yes, I am also interested in how you treated Mathias
Posted by 2young2dieMom (Member # 25434) on :
I was dxd with ALS too and I've had every test possible. The only thing they found was protomyxzoa and I have an abnormal m spike protein which could lead to bone marrow cancer. Whoopee.
I've tried iv ceftriaxone and most of the oral meds. Nothing really helped except Alinia, an antiparasitic drug. That was temporary. My breathing has gotten alot worse again.
It's been 4 years since I first got sick. I'm convinced i was infected by a horsefly bite since all my symptoms started after that.
Posted by Mathias (Member # 5298) on :
I would get tested for mycoplasma if I was dx'ed with ALS.
Medical diagnostics laboratory in NJ seems be a good lab to use. The have test to use as screening tools and then PCR tests to determine the species.
M.pneumoniae is what most common labs can test for but antibodies cross react with other species so it is important to know which species you are infected with. M.fermentans is probably the most pathogenic of the bunch but is less common.
It really needs to be treated with Floroquinlones or Tetracycline class antibiotics. Biaxin and Zithromax which are very commonly prescribed for m.pneumoniae are not very effective against fermentans.
Posted by mlg (Member # 35383) on :
I too tested for fermentans. How long did you treat?
I have been on continuous antibiotics for about 9 months. About 7 of those were with zithro and mepron for a while. Changed to doxy for about 1 motnh but I had really bad ALS type symptoms. Got kidney infection. so doc switced me to cipro. i am about 110 pounds and 5'4''. I wanted to stop the cipro because my tendons hurt I'm skin and bones. I've lost about 60 lbs in the last year.
Posted by Mathias (Member # 5298) on :
The entire fermentans treatment took 24-30 months. I also had Lyme so that may have prolonged the recovery.
I was treated with Ketek, Levaquin, Cipro, Factive and Doryx over that time. A combination of Factive and Doryx was the combination to helped the most. I was on that for about 1 year before going to Doryx for mono therapy. Factive was usually pulsed 10-14 days/month.
Hope this helps.
Posted by Catgirl (Member # 31149) on :
Ah, this makes sense. I have myco too.
Posted by canefan17 (Member # 22149) on :
I tested positive for Myco IgG was like 1550
My LLMD didn't say anything about it. Maybe he thought Biaxin, Flagyl, Plaquenil, Bactrim DS would get it?
I wonder if Rifampin can treat Myco F or P because when I was on Rifampin EVERY symptoms I had pretty much went away. Was like this for 3-4 months.
Posted by Catgirl (Member # 31149) on :
The article posted above (by Catgirl) contradicts what you say about Biaxin not working for Mycoplasma.
"Candidate antibiotics include: Doxycycline, Ciprofloxacin (Cipro), Azithromycin (Zithromax), Minocycline, or Clarithromycin (Biaxin). Some patients may find the addition of Flagyl to be a benefit to treatment.
Posted by lyme-o (Member # 35115) on :
Well for whatever reason, his breathing is better today. This all started when he went to PT last Thursday. It was a bit too much I think. His breath and energy level in general just haven't come back to where they were last week
Posted by canefan17 (Member # 22149) on :
Babs also gives me breathing and energy issues. Stamina issues (like walking up stairs is hard - my legs start burning and I'm out of breath)
I swear I have every infection ever invented lol (yes I know they aren't "invented" per se - unless of course you believe in the Plum Island conspiracy)