phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Far and few between I will have about 3 or more good days and I think yeh I am improving then for now rhyme or reason I will be knocked down and in bed thinking I am dying and have to stay for days.
Then slowly get back to a feel good day and I try to get out of the house or do a few things and wham back to bed I go..
I hate this, if I was sick all the time, then slowly improve I could handle, but this roller coaster ride is no fun. Can't plan anything .
Sometimes I wonder if its the lyme or something else terrible wrong with me.
Even on my better days I never feel well. Seems nothing is working.. So tried of 2 or 3 days up and a week or two down..
Anyone else have this?
Posts: 1058 | From VA | Registered: Oct 2010
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posted
After many months of being sick, trying different antibiotic combos, I had last week and into the weekend 5 or so days of feeling great.
Even got back to walking on treadmill up to 3miles. Well then Monday hit and I was back in bed again, weak and overall feeling like a Mack truck hit me.
Then I rebounded. But I understand what you are saying. The feeling is awful when you have felt great then it comes back.
Just keep up hope that it is all worth it. One day we will all get better. I really believe that!
Posts: 64 | From Sunny Florida | Registered: Jun 2009
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Tks. iwould, seems every year I get worse. I feel I can't take it anymore. Its no so much the pain and weakness but the crazy head feeling. Oh, I have the aches, weakness and the horrible fatigue but along with that is so much fear and crying I don't know where all this is coming from.
I feel I have tried and tried and not sure where to turn.
I do hope one day ... but at my age I feel that day won't come.
Posts: 1058 | From VA | Registered: Oct 2010
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
That's been the story of my life for 8 looong years. I still live the rollercoaster life, but not as badly as in the past. What made a difference for me is pulse therapy.
I got a new LLMD who put me on a regimen of treating bart/lyme for 5 days and babs/lyme for 5 days. This gives me more stability because I'm treating all 3 diseases without much of a reprieve for any of them.
My former LLMD refused to pulse and concentrated on Lyme too much. I was in bed far more frequently because babs and Bart weren't being adequately addressed.
I still end up in bed (I'm there today!), but my rebounds are quicker and more sustained. It's still a rare day for me, though, to feel really, really good.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Phyl You sound like me. It's been 4 years and every time I think just maybe I am turning the corner I feel so sick again.
I say I have really dreadful days, dreadful days and semi dreadful days. i live for the better days when I can at least go out. I have the head stuff too along with the pain. Today I can barely move my legs.
I dont have an answer. Just wanted to say that I can completely relate to you.
Posts: 256 | From long island, new york | Registered: Feb 2008
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Oh Laurie, thank you.. Sorry you are going through this but how it helps to know I am not alone.. I am so weak, heart flutters, you name it, been this way all week.
All I can do is go to bed and stay there. It feels like I can't live this way.
What treatment plan are you on?
Tks. and hugs
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Phyl I know what you mean when you say it feels like you can't live this way. I live for my family and the hope that maybe some day I will have this disease under better control.
I have been battling for 4 years but have not felt this way the entire time. Try to imagine YOU when you were doing better on a good day and try to take it one minute,hour,day at a time.
I know this is so HARD!
Feel free to pm me. I am treating very aggressively now and feel awful.
I also have a wonderful Lyme Literate psychiatrist who really gets it and always gets back to me when I call.
But believe me I know how hard it is!!!!!
I hope tomorrow is more bearable for you (and me!)
L
Posts: 256 | From long island, new york | Registered: Feb 2008
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I do hope one day ... but at my age I feel that day won't come.
- How old are you?? I began treatment at age 49 and got well! I'd had Lyme for 42 yrs at that point.
Going up and down is typical Lyme. And can get VERY discouraging.
Hang in there!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Lymetoo, I am 69 .Please tell me once again how you got well. Thanks for your reassurance of the going up and down.
Laurie, glad you have a good doctor. I am battling this all alone. My LLMD has lyme and she is good but hasn't been very helpful , no more follow up appts. or calls. When I try to reach her I never get return calls etc. I would love a LLMD Psych.
My physician is very willing to give me antibiotics, no problem there its just a lot of questions he has no answers.
Posts: 1058 | From VA | Registered: Oct 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
phy, Those good days are to remind you what they were like. It gives you hope and desire to achieve that feeling again.....no matter what it takes.
Give thanks for those moments, hours or days.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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