husband has neuro lyme can't walk talk or swallow in wheelchair or bed just finally tested positive for lyme through Igenex. He also has an antibiotic resistant urinary tract infection. Had to get pic line on doribax every 8 hours for 3 weeks then will culture urine, that will determine next course of treatment. Is anyone this sick? If so whats your treatment plan? He went from energetic and healthy to so sick he can't do anything, it breaks my heart to see him like this. Any help or suggestions?
Posted by little_olive (Member # 28063) on :
If you don't have one, get an LLMD as soon as possible. You need antibiotics that penetrate the central nervous system (doxycycline, flagyl, rifampin, for example), and start very, very small because the herxing can be extremely dangerous for someone this sick. Treat the co-infections first. Don't focus on "just" the Lyme disease because the coinfections advance MUCH quicker. Test for babesiosis, bartonella, and mycoplasma, and pray they show up if they're there (a lot of the time they do not).
I have been or am currently unable to do the things in your list up there. Just two months ago I was in the hospital with terrible swallowing difficulties, unable to eat, unable to walk, just barely able to talk. I am bedbound and use a transport wheelchair to get around on my good days...which I'm having a lot more of lately!! My LLMD and I are doing as much as we can to get me to better health. I used to be on supplemental oxygen as well, now I'm off of it. I'm on some of the lowest doses of antibiotics, but slow and steady wins the race, right? We can't do it any faster, or I'll crash.
I'm so sorry you have to go through this
((((((hugs)))))))
Posted by rosiegeorge (Member # 27518) on :
I have bad neuro Lyme.
I was wheelchair ridden but after a year of IV treatment was in remission.
Now it has returned and again having mobility issues and have severe tremors just like Parkinson's disease.
The treatment that worked for me before is no longer working
Starting a whole. New regime right now but nothing yet
Hang in there stay strong.
Remission can be possible and that's the one thing that keeps me trying right now
Posted by OtterJ (Member # 30701) on :
tb, I was on minocycline which crosses the blood brain barrier and it seemed to work for me. The bladder infection may be due to bartonella and I have had a lot of problems due to either lyme or bart colonizing my bladder. My go to drug has been Cipro, and it has its drawback, but it also worked for me. As always and above discussion, go slowly. I had good success on A-Bart a Byron White formula. Get thyself to a llmd or ask for a neuro llmd here at "seeking a doctor".