Welcome to our community!!! I'm so glad that you decided to formally join us so we could learn your story!!
If you haven't yet, please do read through the "New to Lyme? Start here!" thread that sits at the top of the forum.
And if you've been reading this forum for a while, you know that I'm going to ask you about your detoxing as well!! LOL! I'm afraid that it's extremely important, yet not many doctors have realized it yet.
My walking issues happened before I even knew that I was dealing with Lyme, but my legs would get harder and harder to move. And then I'd go in to a period where the harder I tried to walk or move them, the less they would move until I got to the point that they simply wouldn't move at all. I had all kinds of tests, and even had the 'wonderful' experience of having a doctor yell at me at the top of his lungs - in his office no less - that if I didn't start MS treatments that very day that I would die from MS soon. Well, here I am, over 20 yrs later after walking out of that office and never going back. I got treatment for my tick-borne
Because you were on immunomodulator for so long because of a misdiagnosis, you likely have a lot of work to do for your body. This medication likely kept your immune system functioning at a very low level, so the bacteria likely is very deeply embedded in your nervous system and might take some aggressive or long term Lyme treatments. Of course, I'm not a infections and I have my issues, but I'm also living a nice life - and it will be a long one!!
doctor and I can't say that for sure. I had Lyme, Bartonella, Babesia, RMSF and more for over 40 years and I healed in just 2 1/2 years of good treatment for those infections.
The key, in my opinion, is to find the specific treatment that works well with your body, detoxing and rebuilding & supporting the body/immune function/all functions of the body that have been impacted.
We are here to help you unravel what's going on with your body. We are really good at asking a ton of questions and that can lead you to answers! We also can steer you to articles that may be helpful to your situation.
Let us know how we can best help you!!
I am so happy to be here Traveler. TY for the welcome. I am so sorry for the brutal treatment you had at the hands of that horrible neuro. They can be SO arrogant in their own li'l insulated, CLOSED bubbles.
OK-- so interestingly, your (former) leg issues sound as though they MIGHT be similar to mine. My left leg feels at times that there is a paralysis (SCARY), it will not bend and both legs are wobbly. My "good" right is getting worse by the day, spastic, wobbly, and difficult to bendy. I have a LOT of spasticity in my legs. It can be painful.
I am going to take all the input here and run with Detoxing as much as I can to see if it helps. I remain OFF the antibiotics (on them Oct-June) except that I am still on the Plaquenil for now. the leg (neuro) issues got MUCH worse since I started the abx- Doxy first (from Cndn GP), then MUCH worse when the US LLMD changed that and added 3 different ones, and Plaquenil 2 weeks apart.
I went off the abx on LLMD's orders on June 15th. He has stated that he thinks all my problems are related to inflammation. He also spent almost our WHOLE last appt trying to convince me I needed (I took name out and just am going to say "an antidepressant")-- which is unacceptable and untrue. I totally refused. My GP and spouse agree that I am not depressed. Also-- he stated that since we have to deal with a lot of stress in our family situation, the (antidepressant) would "help me to cope with stress." LOL If it had this action, the entire WORLD would be on this drug!!!! LLMD also stated that many husbands told him NOT to take their wives off it as they were SO much better. I have NO patience for mysogynistic statements!!! Inaccurate comments about
meds, either, GRRR! Additionally, no one should take an antidepressant for 'stress'-- in my opinion. (I was so upset- he actually made me cry in frustration at the fact he INSISTED. I still refused. Truly was awful. So glad Pete was with me!!)
LLMD has never ever mentioned die-off as a cause. Maybe he feels the 2 are related but he has NEVER said it. I am an information-seeker and find his style of communication unhelpful; so I need to talk to him about
this. He is the closest LLMD to my Canadian province (NS) and the one I was able to travel to see and get back home quickly. An LLMD further away, in NY for example, is MUCH less affordable for us and would mean Noah would be needing child care for too long (he has special needs, and I cannot ask my older 3 children/young adults to help too often- I worry about
asking too much of them. They have been awesome.) Apparently, the LLMD I see is very experienced, but at times, I am unimpressed. I admit this, and I call it as I see it, though it scares me VERY much. That said: LLMD has been great about
calling of FAXING when I FAX him with questions- this has happened twice. He has never charged my for anything he has done outside of my appointments. So-- as you can see, he is not apparently in it for the money. BUT-- there are issues, I have no illusions re: the fact that I am losing confidence in him.
I am giving him 1 more appt then looking at a different route. Hubby is aware. A 9 hr drive, an overnight, leaving our two youngest with their older sibs, and an appt for this is fair, I think. I am doing my part.
BTW, LLMD has NEVER mentioned detoxing. He did say "of course you can try supplements you might read about
I am willing to do anything to make this work-- I NEED to be well (or as well as possible) for my spouse and young adult children/children!! Our little guy w/ special needs -- and ALL of them-- need their Mom walking again. Plus my spouse does EVERYTHING he can to help me and I worry it SO much. As an RN and I have seen the strain and health issues that such situations cause a partner. I don't want this scenario for him/ us.
I am listening and reading and am
open-minded. :) Thank you so much!!