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Symptom Update

Posted May 23 2013 12:00am
Hey People,

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 disappeared.

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.

The volume is down. The living is up!

I hope you are all okay…

Bye for now,

Treya :-)


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