Took a 6 week break from Abx as I felt so bad in every way. Couldn't catch my breath, My Anxiety was through the roof, and I was Crying like a 2 year old.
My LLMD put me on Neurontin 300mg 3 x day and within 24 hours, things eased up considerably. I'm 4 days on the medicine and I no longer wake up shaking out of bed, my mood is more like the Pre-Lyme mood, my Anxiety is Way Way down, and no shortness of breath.
I'm back on Tripple Abx, (Mepron, Plaquenil, and IV Z-max) and tolerating all just fine.
LLMD says to stay away from SSRI Antidepressants or anything that messes with Serotonin as these meds potentially make things worse.
Also seeing another Dr. that is also helping considerably. She is a Bioidentical Hormone Replacement Dr. She has me on these direct acting medications for my Thyroid and Adrenals, plus sublingual Dopamine. A great combination of Dr.'s in my case.
So, what does this all mean for me ?
Well, I'm living again. I'm no-where near 100%, but I'd say I'm like 65-70% now. I've had full days doing things with my kids. I'm talking Soccer games where I can yell from the sidelines guiding them during play and not looking at my watch hoping the game is almost over.
Movies, Dinners, Driving wherever, Walking malls, and more.... I know it's just 4 days, but it's more than I've done in 3 1/2 years, so I give the credit to everything I'm on now. I just hope it lasts.
I'm still dealing with fatigue, but fighting through it, and sore aching muscles that havn't been used too much in all of this time. Too me, it's that feeling of going back to the gym and today, even that is better.
Still some head issues, but they are 80% better as well.
If I can do this, any of you can, thus the purpose of this post. I feel like I was shot out of a cannon from the way bottom to somewhere near the top. Not sure how long I will stay here, but still wanted to post this for those that are struggling, as I have been struggling BAD for a very very long time now, as many of you already know.
I'm seeing where many have much success with Neurontin, just not for what I'm using it for. But it seems to work for many things off label. I suggest some of you look into this medication. I had NO side effects except a little sedation, but nothing in the big picture.
I'll keep you updated............
Gary
Posted by Tammy N. (Member # 26835) on :
This is GREAT news!!! So happy for you!! Glad you took the time to share. It's encouraging for all of us..... It helps remind us that things can always turn for the better.
STAY WELL, Tammy
Posted by djf2005 (Member # 11449) on :
Keep at it Gary.
Detox is key.
Posted by seekhelp (Member # 15067) on :
AWESOME news. So happy to hear it.
Chris
Posted by fflutterby (Member # 28081) on :
Love it, positive thoughts. You will attract more positive feelings. Believe it in your heart and with all of your soul. We Do have the power to overcome this. It happens.
Posted by jlp38 (Member # 27221) on :
"like"
Posted by sammy (Member # 13952) on :
Wow Gary, what an encouraging update! I'm so happy for you Please keep us posted with your progress. I do believe that you will get well.
Posted by Michael_Venice (Member # 17254) on :
That's amazing Gary. I'm really happy for you.
Posted by dmc (Member # 5102) on :
Great Gary,
you've gone so long without a breather in the struggle. It is fantastic hearing of your progress.
Wishing you more positive things.
Posted by kidsgotlyme (Member # 23691) on :
So glad to hear that you are getting out and doing "normal" things. I hope that you continue to get better and better as the days go by.
Posted by CD57 (Member # 11749) on :
What are you treating with that combo?
Was the Neurontin rxed to calm you down?
I have not heard of sublingual dopamine, will ask about it. Cool that you are looking at your hormones those are key!!
Posted by jennie46 (Member # 20953) on :
Good to hear from you, Gary.
I have been worried about you...glad you are doing better.
Do you still see Dr. J? If so, we have the same LLMD.
Posted by lyme in Putnam (Member # 11561) on :
Posted by Ivy (Member # 18365) on :
Two thumbs up Gary!
Posted by Remember to Smile (Member # 25481) on :
quote:Originally posted by lymetwister: Well, I'm living again. I'm no-where near 100%, but I'd say I'm like 65-70% now. I've had full days doing things with my kids. I'm talking Soccer games where I can yell from the sidelines guiding them during play and not looking at my watch hoping the game is almost over.
Movies, Dinners, Driving wherever, Walking malls, and more.... I know it's just 4 days, but it's more than I've done in 3 1/2 years, so I give the credit to everything I'm on now. I just hope it lasts.
I'm still dealing with fatigue, but fighting through it, and sore aching muscles that havn't been used too much in all of this time. Too me, it's that feeling of going back to the gym
Dear Gary, So glad to know you had some super days last week! It's fabulous to do "regular stuff", with joy, with family. Hooray!
Now, saddened to read your other post today about anxiety on high again.
Reading the above, maybe you went too far, became a bit too active? Forgot you've got a chronic illness and need to be gentle with yourself?
LD is a long haul and we've gotta be patient patients...
We shouldn't fight thru fatigue. To heal, we gotta listen to our bodies' messages and remember to rest.
Please, Gary, remember the "Absolute Rules" from Dr. B's 2008 Treatment Guidelines (pg 27):
#1 -- Not allowed to get behind in sleep, or become overtired!
You're a truly wonderful guy. The way you care about your family is fantastic.
Please turn that care back to you now. Be sure you're taking your magnesium, Vit D3, some herbal help near bedtime, and no TV or computer after dinner. Gotta wind down for bed...
Have faith that you WILL heal from this. You WILL!
Bart is hell. Kick the Babs, then kill Bart. All best wishes, Smile
Posted by springshowers (Member # 19863) on :
wow there are two threads from Gary now on the same page and one is how great he is feeling and the other how hellish.. and both threads alive and well and. ITs confusing.
Maybe Gary you should take one down if its still up being responded to since its such an opposite thread and the timing is important to know which is You NOW? You fluctuate so fast and people are trying to respond to you.
But its quite tough when this happens..
Just an idea to help out..
Posted by seekhelp (Member # 15067) on :
Good point Springshowers.
Posted by gatorade girl (Member # 24896) on :
Gary are you ok.? Been worried about you. Email me asap.
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