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Do I dare say it out loud?

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Posted 1/2/2015 1:38 AM (GMT 0)
I am cautiously optimistic.
I'm hesitant to even say the words..."I think I'm improving". There - I said it!

Afraid to jinx it...

And partly, it's just a feeling I have...as most of you know I have been treating since July, with some initial symptom improvement, and then seemed to stall out...some med changes..but taking nothing pharmaceutical for bart yet. My worst symptoms have been nerve related - so pretty sure Mr. Bart is fiercely battling inside my body...but he hasn't won yet..and I'm not giving up!

I have been doing JK, CC for quite a while...and have recently added in Sida, cryptolepis...
I dropped biaxin several days ago...I was feeling "toxic" and had to figure out what was causing my low-level rash. Also dropped the milk thistle. I think that is improving somewhat...I realize that it could take a week or more for the rash to completely resolve.
I am still taking the Ceftin - 500 mg twice daily.

So, I seem to be able to pinpoint the symptoms and severity better now...before..I was all over the map, too many to keep track of - and charting was a nightmare - as they fluctuated all day long...I was charting three times a day, and that wasn't even giving me a good picture.
They are still fluctuating throughout the day, but some have diminished greatly, and in the past week or so, some have completely gone (so far) - they may come back....but maybe they're gone for good.

I still wake up in the morning with 'doom and gloom' feelings - don't know why that is - I must be dreaming bad stuff during the night. Once I get up and start moving, those feelings subside...and I realize that it's "not so bad".

So, today, my worst symptoms are shoulder pain (top and front), tailbone pain, knee pain, chills/shivers, and the always present upper left side radiculopathy - (nerve pain and stiffness - left upper back, left arm, left hand, and numb pointer finger)

I am definitely doing more...starting to make dinners and do the dishes on a more regular basis. The house being a mess is starting to bother me (that's a good sign - I could care less six months ago).

Oh gosh...I hope I don't have to retract my words. blush

Post Edited (Girlie) : 1/1/2015 7:04:21 PM (GMT-7)

Posted 1/2/2015 2:13 AM (GMT 0)
Thanks Mike!

Oh, my mobility in my left arm has increased. I couldn't raise my arm up when pointing outward (if that makes sense).

And my shoulder blade on my left side is visible again. This started to happen in August...and now it's looking pretty good. (Very bizarre, the left shoulder blade - couldn't see it jut out...like the left side)

I originally thought that my upper left side - upper radiculopathy, frozen shoulder, etc. was prior to Lyme, a separate issue, but I believe now it was the start of Lyme symptoms.
I have read that both radiculopathy and frozen shoulder are symptoms of lyme.
It makes sense, as I didn't have an 'event' to explain the radiculopathy and lack of healing.
Improvements did not happen for several months...only happened a couple months after starting Lyme treatment.
Posted 1/2/2015 2:15 AM (GMT 0)
YEAH!!!!!!!!!!! You go Girl! ie :)
Posted 1/2/2015 3:28 AM (GMT 0)
Girlie, what you are going through sounds about right in how the treatment progresses. It is very likely that in a few weeks you will feel like you are getting worse again. Just know that this is normal so please don't let it discourage you. After a few cycles you will notice that you will have more good days than bad and that you are slowly doing more normal things.

Keep up the good work!
Posted 1/2/2015 3:36 AM (GMT 0)
That is awesome! Hope it lasts. ;)

-p
Posted 1/3/2015 12:58 AM (GMT 0)
Healing - I have prepared myself for some bad days to come; days when I will question my treatment, etc.

But, hopefully, the good will outweigh the bad days....sometime soon!
Posted 1/3/2015 1:21 AM (GMT 0)
Good for you! It happened for me around the 6 month mark too. I heard that's the way it goes for a number of people. Keep up the good work. Hope you have many more improvements and good days to come!
Posted 1/3/2015 1:31 AM (GMT 0)
Summersun - Yes it is at the 6 month mark...wow...time flies when you're...um..not having fun?

I know I feel better compared to a year ago (last January...I was hardly doing anything - rarely doing dinner/dishes...crying everyday....)


Summer - how is your treatment going? How are you feeling?
Posted 1/3/2015 1:08 PM (GMT 0)
Thanks for sharing this great news!!! (I completely understand the jinx concerns ;)

May you have many more days like this and even more days that are better than this!!
Posted 1/3/2015 6:50 PM (GMT 0)
Don' forget that you were under a terrible amount of stress not long ago, Girlie!! Your progress has actually been quite good when that is taken into consideration!!

And we will be here to lift you up and help you through those bad days - just like everyone is here to lift me up during my worst days!! We're here for you!!! :-)
Posted 1/3/2015 7:06 PM (GMT 0)
Awww... Thanks everyone! I don't know what I would do without this forum...what a wonderful group of caring people!!
Posted 1/3/2015 7:52 PM (GMT 0)
Girlie - you asked how I was feeling.

I've been in treatment for just over a year - herbal only. I had a better summer than last year, probably about 30 percent better on my best days. That was very encouraging. In October I had some difficulty taking a few steps back, struggling with energy especially. My LLND told me that it is not uncommon for people with LD to have a set back in the fall (and the spring). I picked up again after a few weeks, but it sure was discouraging at the time.

The holidays have done a number on me however. I had started my shopping early and thought I was ahead of the game but in the end I had a ton of last minute little things to do and I kind of ran myself ragged. Then I got a flu/cold thing just before Christmas. I dragged myself through the festivities for 2 days and of course ate food I shouldn't have eaten. I have now been recovering ever since, but I have turned a corner and am coming back.

The next 3 months will be quiet so I will be trying to increase my drops. We bought a Far Infrared Sauna too so I hope to get a lot of use out of that. I have high hopes that it will really help me detox. Oh, and I forgot to mention...I gained 7 lbs since July! That is really good news for me as I had lost too much weight and couldn't gain any no matter what I ate. It's another good sign that things are healing.

I didn't intend for this message to be so long. Aren't you sorry you asked! :-)

Anyway, like Traveler said, it's amazing that you are doing so well after the stress you endured. That's a really great sign! You're doing it!!
Posted 1/4/2015 2:53 AM (GMT 0)
That's so great to hear Girlie. Congrats! And I know exactly what you mean by jinxing it. I still fear telling anyone I'm having a good day/week cause then suddenly I'm not. But it's the same for me when I suddenly get the urge to clean and do chores, then I know I'm having a good day. Weird how that works, huh?

It's so easy to get discouraged when it doesn't feel like you're making any progress. It's hard to see and feel but you're getting better. If you've made this much progress in six months imagine where you'll be in another six months. Congrats again and continue healing!
Posted 1/5/2015 2:25 AM (GMT 0)
Summersun - I gained weight, too. I was 138 lbs and when symptoms hit, I went to 125 lbs.

A couple months after starting treatment I went to 127 lbs....and held...until the past month or so. I am now at 131 lbs.

It's nice to know that the body is returning to it's normal state...at least in the weight category...
I'm kind of liking the 131...so maybe I'll just stop there....lol.

And, no, I'm glad I asked...I love reading everyone's stories.

Cheetahjade, I guess we'll know we're better when our house is clean from top to bottom!!!
Posted 1/5/2015 2:33 AM (GMT 0)
That's great that you gained weight Girlie! All good signs!

I know what you mean. I would like to stop the weight where I am too. I don't need the extra 10 lbs I had on before! I'm a little disappointed I can't wear the clothes I bought last winter now as they are too small, but I have to tell myself it's a good thing as I was much too thin.

Congrats on your healing!
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