sdarrah said...
Thank you for replying so quickly, sorry I am learning how to navigate this forum. I have seen your knowledge and experience in many posts.
I am battling 2 severe symptoms; my worst is my balance/walking and then my speech. My first symptom almost 3 years ago and before I knew I had lyme was vertigo and then it was just feeling off balance. Fast forward 7 months after that lost my hearing in left ear and ENT prescribed Steroids then as you know all hell broke loose and I soon had all the symptoms most of us have. Not surprising that it took 18 month to be Igenex diagnosed. I went through all the vestibular testing trying to figure out the balance problem prior to LYME diagnosis.
I have been treating for a year with a good LLMD and have been on the normal ABX protocols and started treating Bartonella in October - Bactrim, high dose Amx + probedicide, and Clarithymicin. My walking/balance is my worst every day battle and has not improved. I have found that the Bartonella; Neurological symptoms take the longest to treat and I have seen many post that it takes at a minimum 6 months to see improvement on Bactrim.
I have not taken Rifampin yet I have my next LLMD appt next week and we are going to discuss adding it but where it has only been barely 4 months on the Bactrim but he may wait a few more months before adding it.
I am trying so hard to have faith that someday I will walk and talk normal again and I am just looking for any insight and hope you can offer. The only other Bart symptom I have is stiff calf muscles and sore soles in morning.
Did you get any improvement treating babesia?
So you’re off balance - are your legs weak too?
I had the off balance symptom as well as weak muscles. It was really noticeable if I was standing in a lineup - for instance - at the bank.
I had to really concentrate to not sway back and forth.
I stopped driving for awhile because my legs were so weak - my right leg was shaking jus trying to keep the brake pedal pressed at a red light.
It improved with treatment (lyme/bart) and now no issues with those symptoms.
Re: talking - are you talking about
vocal cords and your voice - or cognitively - have trouble finding words?
If the Bactrim doesn’t help with the symptoms - you may get better results with the Rifampin.
And an even stronger one is Rifabutin.