You are handling all this very well -- it must be alarming, and you reasoning your way through it. Good for you -- that ability to keep focussed on what to do is and will help you greatly going forward.
I am not medically trained, and don't know anything about MS except what I've picked up from having Lyme and doing the differential diagnosis (comparing symptoms of Lyme vs MS) as you are.
I know it's Saturday, so Monday is a ways away, but on Monday try calling the LLMD and get bumped up if they have a cancellation, tell them your symptoms are worsening and you really want to see the dr as soon as possible.
In the meantime, consider calling your regular doc (is there anyone other than the neuro that you could see? a GP?) and tell them your symptoms, but when they try to give you steroids tell them that you are looking for options because the steroids made you so much worse last time.
If all else fails (such as the GP tells you to call the neuro), I would certainly tell him quite firmly about the reaction you had if he wants to put you on the steroids again and tell him you don't want to go there again.
You are within your rights to refuse that treatment, but the doc is also within his rights not to treat you ... tho most docs when they meet reasoned defiance will back down and rethink.
I personally didn't have numbness from Lyme and babesiosis, more like rolling pain down through my body. But everyone is different, and the selection of co-infections changes the whole symptom picture for everyone too.
So bottom line is, consulting a doc is a good thing, and I would tell them about your bad reaction to predisone and that you don't want to go there again, then see what they offer next. Take care, let us know how you do, okay?
Hi Natalie, I don't have alot to offer because I have just newly been dx'd with Lyme, babesia and bartonella, but,, I can say, that I have had both of my hands go numb and last up to 6 -7 hours. If I am leaning on the couch a certain way, my stomach goes numb for a long time too, its crazy.
Any time I have been on prednisone , I had a flare of my speech slurring, so I get it when they say that Lyme and steroids don't mix well.
I hope you can get a doctor to hear your concerns, it took me 4 yrs. before someone would listen. I was dx'd with a TIA, siezure disorder, anxiety, fibro. CFS, and central sensitization, (LOL), another term for the fibro. spectrum... But the seizure disorder is relevant with the bartonella. Thank God for a LLMD!!!
I don't know if you have any answers yet, but I thought I'd reply. It looks like you have done good research. I, too, have about 20 small white matter lesions, but they don't look like MS. I didn't have any obands, but then I also tested negative in the CSF and blood for Lyme. The fact that you got worse on prednisone is a huge indicator for Lyme. (Me, too.)I believe that was also a contributing factor to why I tested negative, as the prednisone suppresses the immune system.
I did test positive on the IgM Western Blot at IGeneX, but not on the IgG. Only an LLMD would ever have diagnosed me with Lyme with those test results.
Have you seen Dr. Burrascano's guidelines for diagnosis and treatment? It is intended for doctors, but I found it very useful.