I feel it’s about time I give you an update on where my
health is at from a symptom point of view. From my last few posts, you may
think I’m running around all positive, free from symptoms, but that’s not the
case. The volume of my symptoms has been turned down, allowing me to feel less
burdened. This freedom to exhale a little really is what produces such a happy
disposition. The good thing about being so restricted for so long is that you
appreciate the smallest of things to the maximum degree.
This time last year when I was seeing my LLMD I had about
two A4 pages full of symptoms that I was being bombarded with. For the last six
months I don’t even write my symptoms down any more as I can pretty much list
them off hand. This in itself is great! I sure as hell don’t miss having to
record my symptoms on a daily basis –– eating into my precious time.
I think the Mother of all symptoms that requires improvement
to enable a better quality of life is the energy problems. Early last year I
was only sometimes able to walk twenty minutes slowly, although nerve problems
in my left leg really complicated walking. After doing a few months of IV
antibiotics and a more aggressive treatment approach I started to see
improvements in my energy levels. The first time I started to notice the
improvement was on my honeymoon, last May in Venice. I was able to do some
ambling around Venice in the mornings relatively comfortably (but always
wrecked after) and then I would have to sleep in the afternoons.
After my honeymoon I had to go through a lot more IV’s and I
did a nasty combination of treatment around June––which was awful and I felt
like I was dying––and this is when I really felt a big improvement with my
energy. I continued to do a bit more and I was able to function better on
treatment, which meant less disruption to my life. Once I felt this new energy
was sticking around I got my dog. Although hard sometimes to deal with, he has
without a doubt made me so much happier. He makes me smile many times a day.
Smiling was something that I was deficient in the few years previous to this. I
have no doubt that this too has helped. I still would not suggest someone
living alone to get a dog as my husband helps me. But for me it has been one of
the best decisions I have ever made.
Although my energy has improved: walking thirty minutes
comfortably most days and mental energy to do at least two hours of work, I
still don’t do too well when I step outside my little world; Like meals out
with groups of people with lots of talking, day trips, that kind of thing. I
have carved out a good and quite productive life within certain limited parameters. But
heck, I am very happy with that!
Okay, so lets move on from the energy. My sleep is still a
little all over the place. I go through a couple of weeks a month where I have
a ridiculously disrupted sleep. But I’m used to that. I still get headaches,
but with breaks. I still have nerve issues with my left side, but they are less
obtrusive. I still get migrating moderate joint pains. And I’m still an irritable
unsocialable bitch sometimes :-). My fluey/poison feeling likes
to visit from time to time. I also still have issues sometimes with the nerve
issue on the right side of my face and head. And I still get some lower back
pain sometimes. I also still get sore and swollen lymph nodes and infections in
my mouth. And I get regular and varied pains in my upper torso. I do also have
short-term memory and word finding problems at certain periods, but this has
much improved. All of these come
and go, which again, I’ll take over constant!
There is no doubt that I am still having infection flare-ups
and this is when I see the symptoms creeping back in. I have a very regular and
predictable pattern: I do a treatment; sometimes it takes a week to get over
it, mostly now I feel good nearly instantly; I always feel my best following
this for about two weeks, and then things start to slowly creep back in. This
is the discouraging part… But it is only the culprits I mentioned above, and as
I said, the volume of them has been turned down. Lots of other symptoms have
One of the most notable and best things is that the herxing
is a lot more manageable. In fact, I am on a treatment now. The first day was
awful. But since then it hasn’t been too bad. Although, my left elbow has been so sore and I'm having problems using it. I’m quite tired and feeling a bit fluey, but
I’m relieved that I don’t feel as bad as the first day.
Treatment is ongoing and regular.
So that’s it. I’m pretty sure I have left something out. But
I think that just about covers everything.