Back in November, I was just finishing up my 1st round of IV Rocephin antibiotics and was at about 4 months when I decided to take "a break". I was showing quite a lot of progress and actually my LLMD wanted me to keep going. But although the IV antibiotic treatment did more for me in 4 weeks for my severe nerve pain throughout my body and ability to walk then some of the top "specialists" at UCSD, I had been through so much pain for so long, that I clenched my teeth so hard that I cracked SIX of my teeth! I was in THAT much pain for so long without relief! I was having so much tooth pain that I HAD to stop the IV treatments to get some dental work done - I had to make a choice - one or the other - I couldn't afford both. Turns out I needed a root canal (more on that later, but let's just say that was the worst decision I could have made). But I was feeling SO much better after 4 months on IV Rocephin. I still had lots of other symptoms, joint pain, fatigue, brain fog, etc. but to FINALLY have relief from that horrific nerve pain and to be able to walk better again without fear of falling, was wonderful.
Unfortunately, within about 2 week? after stopping the IV abx, I began to relapse and within a few more weeks, many of my more severe symptoms returned and THIS time, I now had a constant 24/7 migraine headache which started a week after I had my root canal. This headache (which I had a brain MRI - normal of course) would send me from doctor to specialist after specialist and although the migraines reduced after about 3 months to "constant headaches" now - it was still debiliating. My dentist and endodontist kept sending me back and forth to one another claiming that the root canal could not possibly have anything to do with my sudden migraines. Really? Awful big coincidence then! 5 months later, I found a headache specialist who charged me $450 to tell me that I had occipital neuralgia and a whole bunch of other very "technical sounding terms" but basically said that when they did the root canal, BECAUSE of my Lyme, I had some very "angry and inflamed nerves" (no kidding) and he needed me to do a 3D topography imaging scan for another $750 so he could see what the regular dental x-rays couldn't. He also wanted me to travel the 45 minute drive to his office each day for a week to try an experimental light laser device that you hold to your head for 6 minutes and then leave. I'm on SSDI and have no insurance. I couldn't afford any of this, and at this point after waiting all this time to SEE this specialist, I had to admit my headaches WERE getting more tolerable. Still not great, but very slowly, after 5 months, they were starting to subside. So I didn't go back and 6 months after it started, it seems like my nerves have FINALLY calmed down. Now I'm having pain on the other side of my mouth and am deathly afraid of going back to the dentist. At this point, I'm inclined to tell them to just extract the tooth and be done with it!
The good news is, I restarted my IV antibiotic treatments 6 weeks ago and sure enough within the first 4-5 weeks, just like the last time, my symptoms started to improve, I began to use my walker less and less and could get around more with just my cane. 2 weeks ago was my birthday "week" and the planets must have aligned because my symptoms were at an all time low - I felt great, had energy and little pain and was able to go out and have several birthday celebrations with friends that I haven't been able to see in a very long time. It was was absolutely wonderful. The following week, for some reason, I started having another Lyme flare up and have been in bed a lot for the past week, but I've learned so much from this journey that I don't PANIC anymore when this happens. After all, to have had ONE FULL WEEK of feeling pretty good was amazing for me and the bad days are getting less frequent and the good days are lasting longer. I am on a ton of herbal supplements right now to try and help my immune system, to keep my liver detoxed, to help me with energy and VERY high amounts of Probiotics and Nystatin to keep my gut flora in check since I'm on long term antibiotics. Lyme is such a roller coaster ride and I've learned a lot of useful tools to keep myself from getting depressed about my situation.
The two biggest symptoms I'm dealing with right now are the continued "brain fog" (difficulty concentrating, memory loss, etc.) and joint pain in my hands which make it hard to type on the computer for long periods. The intermittent pain I can usually handle - since I've been through the most horrific pain imaginable, I think I can handle pretty much anything at this point.
My online Lyme support group friends have become my new family and have provided so much encouragement and support that I feel so grateful to have found this particular group. We are all there for one another and when you're stuck at home and bed bound quite often, it's a MUST to have that connection with others.
I'm going to wrap this up for now although I feel like I have so much more to say after a 5 month absence, but my fingers hurt and I need to try and get some rest.
I am sending out good healing energy to everyone tonight and hope to talk again soon.
Big Hugs,
"Sandie"
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