Hey gang it has been a long while since i posted my update. As i've always stated i am simply posting this hoping someone can gleen some info from it.
So its been 30 weeks since my DX...i would be lyeing if i did not say i am getting better. That is a fact. I would also be lying if i didn't tell you how hard i am working on my health. i have not used a casual approach to my recovery. Those close to me know that. i am at the gym almost every other day for an hour. I am now running 2.5 miles and lifting for 30 mins.
If you are struggling with this part of your recovery please note i started with a simple 30 min walk 8 months ago and it was a shuffle at best.
My quandry right now is that while my physical fitness is at level it has not been at in 15 years(i am 46)this disease is still in my nervous system. i still struggle to sleep, can't always think straight on certain days, and have some transient twitching....Minor things compared to the fact that since adding doxy to the mix in February i have had a headache every day since. we decided to stay on it because it resolved my backsliding at the time.
So....i would still say i am 85-90% better and that the finish line has to be out there somewhere. i have come a long way and would encourage everyone to dedicate themselves to their recovery. If you don't think you can do it please PM me and i will gladly tell you what a mess i was 8 months ago...
I would love to hear from those of you who are in remission(if you're on here anymore)and how you got across the finish line...i have been at 85% for close to three months...how exactly does it end? do i become symptom free one day?
Ps...i will be running a 5k on May 17th to support the LDA and to show off my new level of fitness. I will also spread the word about Lymenet.
Keep the Faith,
Dave
Posted by Michael_Venice (Member # 17254) on :
Dave,
I would like to ask you about where you were at when you got diagnosed. That is, what were your symptoms, (lack of) activity level, like that....
And co-infections?
I know it might be a lot to ask, but I always wonder as I follow your progress...
Posted by shelly23 (Member # 16124) on :
Hey Dave I have been taking Abx for 24 weeks? Pm me sometime we have been sort of following the same path. Love to compare symptoms tx.... Also meds.. Did you have a rash/remember tick or not??
I am very happy for you and proud of you supporting lyme
Posted by Dekrator48 (Member # 18239) on :
Great news Dave!! Way to go! I agree about the dedication it takes to get well.
It's not easy to exercise and eat right, plus all the meds and supps, etc.
I've only been treating for 9 weeks now. The only improvement I've noticed so far is about 5 nights of decent sleep in the last few weeks.
If you don't mind me asking, what meds and supps are you taking to help with your sleep issues?
For sleep, I am taking L-theanine 100 mg 3x/day, 5 HTP 100 mg 3x/day, Gabapentin 300 mg at 8 pm, Sublingual Melatonin 10 mg under tongue at 10 pm.
I started with a much lower dose of sublingual melatonin and worked up. I am allowed to increase to a max of 18 mg.
Keep up the great work!
Posted by Meg (Member # 22) on :
Sounds like a lot of exercise to me Dave, be careful with that. You can backslide badly with over exercising before you're well.
As for what worked for who, the Success Story thread (see below on my post) gives you an idea what posters have been through to get well.
Your post is pretty darn close to a Success Story in itself...think about putting it up there, will you?
Posted by DaveNJ (Member # 17362) on :
Meg,
i am actually afraid to jinx myself..once these headaches clear up i will call it a success.
as far as exercise i only do what my body will allow...if i feel too tired i take an extra day off in between. The exercise is as much about coping as it is about fitness.
Dave
Posted by DaveNJ (Member # 17362) on :
Let me see if i can answer some of the questions that were asked. My case is textbook "under Our skin". I never had a rash or a fever nor was i acutely sick. I had tick on me(may 2006) and it tested positive. And despite that and some vague symptoms i was denied proper treatment.
For two years i was simply tired, with some muscle fatigue and slight agitation...but i was hyper guy to start. saw 10 doctors over that time with no resolution.
June 08 it went Neuro in one day..lost my short term memory, word loss, word switching, stammering, panic attack 24-7, insomnia. In the next three months i developed extreme fatigue and vertigo along with muscle twitching.
My doctor does not feel i have any Co-infections. Says i would not have made the progress i have made if i did.
Symptoms left:
Insomnia - i use Xanax to sleep .50 Slightly Tired Headache- think its the meds Slight agitation from time to time Still not 100% brainwise..little foggy but functioning pretty well.
Some additional thoughts...my LLMD as good as she is really focuses on the ABX, i integrated my own approach by seeing a nurtionist and foillowing DR. B's protocal pretty much to a T. Which is where i made the choice to follow his exercise advice.
Finally i don't think i have this beat yet but i do feel like i have it on the ropes...we shall see.
Dave
Posted by Michael_Venice (Member # 17254) on :
Dave,
by the way, congratulations on your resolve and improvements.
I neglected to say that, and it should have been the first thing I wrote.
Thanks a lot for filling in the details.
Continued success to you.
Posted by DaveNJ (Member # 17362) on :
Michael,
Thanks...if i can do it anyone can. I never knew i had this inner strength but it wears me down on some days. It's not easy but it's what we have to do. I look forward to being 100% and becoming more of an advocate. Every dog has his day...
Dave
Posted by Tincup (Member # 5829) on :
Bow wow to that!
So nice to know you are doing better!
I don't know the special magic that will push you the rest of the way up that mountain you are climbing...
But I have a feeling you will search it out and do fine!
I am so very proud of you for sticking to it.
Posted by DaveNJ (Member # 17362) on :
Thanks Tincup....
Posted by sleepyhiker (Member # 19920) on :
its awesome to hear success stories... im 4 years into treatment, and i've recently gone back to step aerobics after many years on and off - depending on my remission level
I wondered, is your brain back? I used to teach the class, but most days that part of my brain os shot- i can't find certain words to save my life.. Good luck at the race- so proud!
Posted by DaveNJ (Member # 17362) on :
Sleepy,
My brain is 90% back....until about 5pm then i fade....i have had days where i was closee to 100% so i'm optimistic...still a bit forgetful and sometimes just zoned out...but not all day.
Dave
Posted by Keebler (Member # 12673) on :
-
Dave,
So good to hear that you are doing so much better.
Would you please add your thread to this one? Thanks.
My family and I will be at the run, however we will be walking. Kudos to you for running!!
I am happy to hear of your improvement!
I am still battling the bart but am about 85% better myslef.
I am really looking foward to the walk/run and have spread the word to many via e-mail, phone calls, church and facebook. Hope to see a phenominal turnout!
Posted by Ocean (Member # 3496) on :
Awesome news Dave!!!
Thats great! Thank you for spreading the word about Lyme. I used to be a runner. I was in remission from my so called CFS in 2002 and I ran a 5K, it was great to run again. I did take a walk yesterday evening probably 3/4 of a mile and while I was very tired afterward, it was nice to use my body =)
Take care and good luck =)
Ocean
Posted by DaveNJ (Member # 17362) on :
Thanks Guys and Gals....still have some trainng to do....
Keebler i am not postng success until i am leats symptom free...not quite there yet.
See you at the run Lyme.
Posted by Meg (Member # 22) on :
I forgot to say Congrats-! Glad to hear you're doing so much better.
Posted by Melodymaker (Member # 16434) on :
Congrats Dave. You're doing great, and I admire your dedication.
Very quickly after my husband and I started the Doxy we realized that we were both quite irritable, anxious and short tempered. We believe it is a side effect of the Doxy as neither of us is normally like that.
So just take deep breaths and be patient. The slight agitation you experience from time to time could be the Lyme or the meds.
Posted by micpal (Member # 19862) on :
I'm new to Lymenet, very new to message boards, but an old hat to dealing with Lyme. Finally after years of struggling, 3 positive tests in which the MD's said I had new infections (which I know I did not) I am finally seeing an Inf. Dis. doc and am being treated with 400mg. of Doxie. But the headaches, I feel like I've been hit in the back of the head with a baseball bat. Anyone out there..is this normal? The pain and fatigue are worse that at any other time. Is this progress?
Posted by DaveNJ (Member # 17362) on :
Thanks Melody.....and MicPal...i would a definitly say yes...i hope your are not planning on staying with that ID ? They have a bad name around here.
![[Smile]](smile.gif)
I will also spread the word about Lymenet.![[Big Grin]](biggrin.gif)