it has been such a long time since i did one of my updates. Funny when i started they were every week...of course i now know recovery is measured in much longer periods.
i continue on my Biaxin every day and zith being pulsed every 5 days....and the effect is less than it was but i am still dealing with 2 troublesome symptoms: stamina and head pressure. I still continue to excercise but on some days i can only do 50% on others 100%...depending on the pulsing and sometimes very arbitrary.
Saw my LLMD a month ago and she feels i am doing well.. for sure the zith has my brain working much much better. No idea how much longer this will go on for. I also mentioned in August that my LLMD said Columbia had a new test coming. At my follow up visit the DR. said they were waiting until after the conference but i have yet to see any annoucement.
as far as my symptoms go the stamina issue never popped up until i went on zith in June. prior to that i could physically do anything i wanted but my brain did not work....so its now a frustrating trade off....i would love to hear from anyone else who has had this experience. it is going away but at a pace that means i will be well by 2012 ...just in time for the world to end...just kidding.
Anyway still not a success story unless you count better than i was...but as a long as I still feel like crap each day i can't call it a success. Staying positive and please do the same. i promise i will run another 5k when this resolves.
Keep the Faith,
Dave
Posted by Wonko (Member # 18318) on :
Hi Dave and thanks for the update.
I can relate to a lot of what you say, and how you are feeling better than before, but not quite ready for the success list.
I'm very close to the one year mark myself. And while I'm so thankful to be improving, I'm still dealing with an uncomfortable symptom load. I haven't lost my compassion for those worse off, but it's totally frustrating to be in this boat of improved, but not yet well.
I am currently alternating Tindamax with Factive on top of my base of Mino/Zith pulses. That plus a couple supps, probiotics, antifungals, and anti-inflammatories and I feel like a walking talking pharmacy. But I wouldn't stop given my improvement.
My biggest recent success is that I resumed full time status at work, officially in early Nov. but unofficially (still paid part time) since early October. I've only used 2 sick days since early Oct., and so that is amazing!
(I reduced to part time in Dec. 08 right after my dx/treatment began. This was after spending most of '08 sitting like a zombie at my desk...)
Of course, my work schedule usually zaps me and I am typically unable to do anything (chores, outings, fun stuff) evenings or weekends...I mostly need to rest during that time. I do make efforts and often succeed in exercising 3-5 times/week, but skip it some days due to exhaustion/malaise.
Stamina, joint pain, neuro/sensory issues, and also some head pressure are my biggest issues. But the heavy fatigue and profound confusion/brain fog, my most disabling symptoms, have been, for the most part, under control since August.
I hope ongoing treatment, and the recent addition of Tindamax to my line up helps to get me further along in my recovery.
Keep fighting the good fight and I'm sure you'll run again! I hope to do a 2nd 5 K this spring, but lately my joint pain has kept me off the treadmills and I'm instead doing elliptical/stairmaster workouts.
Posted by DaveNJ (Member # 17362) on :
Thanks Wonko.....good to know someone os traveling the same path....there are so many ironies with this disease....my first 9 months by body recovered well but i was in a stupor...not focusing on time and not projecting.....now 14 months in i have come out of my fog and i'm fully aware of time and my limitations...and thus i feel more frustrated.
yes i still think i will make a full recovery but not knowing when is sort of a mind f@ck for lack of better word. but here we go through another Thanksgiving and Christmas...but i still try to be grateful.
Keep the Faith,
Dave
Posted by Michael_Venice (Member # 17254) on :
Dave, I'd been wondering how you are doing. You're one of my role models here. I'm glad you posted, and look forward to hearing that your (albeit) very slow progress leads to getting normal or damn close to it.
Posted by DaveNJ (Member # 17362) on :
Mike,
Thanks for saying that...i do try. i've learned so much about myself including how to be strong in the face of some real sh@t. i know lots of people doubt themsleves with this battle...i just don't like to see it. We are the greatest assest we have(or our own worst enemy).
i cannot believe i am at this so long...but the fact is I AM still at this and i am winning. For me their is no alernative.