Problems walking and scared!

Hi Jessica - Sorry you're feeling so awful.

Are you being treated by a LLMD?

Did you have Igenex testing done for lyme disease, or is this a clinical diagnosis by a LLMD?

How long have you been on the zithro and mepron?
Yes, new symptoms can appear after treatment starts.

Some LLMD's say you need to treat babesia first, others start with Lyme.

So, did the neuro diagnosis you with ALS - just by symptoms? He didn't do any tests? He didn't do a brain scan to rule out other diagnoses?

The problem with seeing Neuro's that aren't educated by ILADS standards is they won't see Lyme, no matter how obvious it is.

So my first question is, are you sticking with Lyme literate Neuros?

As for your issues with walking, I had those same exact issues - and they all went away as I healed from Lyme. My legs would actually lock up mid-stride and I couldn't move them. I eventually learned how to relax and get them to move enough so that I could make my way to a chair, but it wasn't easy.

I used to trip over everything and nothing because I would go from dragging my entire foot to dragging just my toes. My legs would collapse with no warning (fortunately it was rare for both legs to do this at the same time though), tremors in both legs, sciatica bad enough to make my legs cramp and make me sit on ice all day long and more.

Hi Jessica,

So sorry you are dealing with these scary symptoms. This is my main symptom, and it seems to be worsening.

Throughout my illness, my biggest complaint was dizziness and heaviness in the leg. I made some great progress over the past year. But around Thanksgiving, felt a "difference" in the sensation in my legs. Mostly my right leg. The best way to describe it is if your knees buckle, the feeling you get in your lower legs....this would come in "waves" and as I walk I would feel that sensation and it scared me to death. Thought I was having a stroke and went to ER. of course nothing showed up there. Then I got a series of MRIs, and I did find out through the lumbar MRI that I have peripheral annular tearing, and a moderate bulging disc. My LLMD, who is also an osteopath didn't believe that this was this cause of these new symptoms because it only showed as "moderate" but I have done much research, and have found many who have these exact problems and had moderate spine issues.

Shortly after that last flare, about 10 days, I went back to normal and had the best two months since treatment. However, it came back with a vengeance about a week and half ago. I'm still dealing with it now, and wondering what my next step is. I'm also treating Babesia with mepron and biaxin, adding flagyl only a few days once a month. The biaxin still treats the Lyme. I can still drive and work, but walking is very difficult. I have to plan my day around my ability to walk. (which at work is rough).

I've been advised to see a neurologist, orthopedist or neurosurgeon from my PCP, again, my LLMD believes it's the lyme and co - but like most here, we tend to doubt our diagnosis at times, and I too am terrified of the other possibilities.

I believe you said your MRIs were clear. Did they check your entire spine? Do you have any back issues at all they uncovered?

Wishing you peace - you will get through this.

great thread...

Jessicah, I have had both the evolving and ever-changing symptoms in 33 years. I have seen over 25 doctors, and have been diagnosed with MS, on one occasion because the symptoms were so prominent. Hang in there, and trust your LLD. They understand all this. I can confidently say only the last handful even believe that "Lyme" exists like discussed in this forum, and that I do have it. My current neurologist and internist are coming (a little) around with all the back and forth; swinging lab results and visits to ER. Symptomatically, I will be falling down for months, (3 years ago, I feel down a flight of stairs, and the ER doc said, "clumsy" on the summary); then one day I wake up and it doesn't happen again for two years. Yet another ER visit and overnight stay with severe/crippling chest pains - my ECG indicated "lazy" and "out of shape" as the reason my abnormal results and the rise from 80-180 HR in under 90 seconds of exercise, nearly passing out and instant headache. And, told me verbally all was normal, but the report says otherwise with both reverse T-Waves and skipped beats.

I have so many questions, but I am trusting in the experience of my LLDs right now. I pray you find the doctors that support your symptoms and history, and can alleviate the episodes.

happyjo- Thank you for that info, I've never heard of that. I swear I learn something new on this site every time I go on here!

Blife- I can relate to that, I saw 10+ dr my first year I was sick! Thanks for the kind words :~)

Traveler-Thanks for your knowledge :~) I'm hoping the new neuro will at least consider Lyme!

I forgot what you need to look up; FLUOROQUINOLONE TOXICITY! Very dangerous drugs that should be removed from the shelves. Check the adverse side effects. Fluoroquinolones are different from other antibiotics in that they contain the fluorine atom, which reeps havoc on your DNA, CNS and tendons, muscles. The pain is awful if it attacks your nerves.