disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Okay. Nothing to say except I am so... confused, as usual! And have a couple questions, I guess.
I have good and bad days. I got sick a year and a half ago. Took almost a year to find out what was wrong with me. Even before I was diagnosed, I had good and bad days, but my bad days were horrid. I felt like death, I was so extremely ill. My bad days now are still bad, but don't seem AS bad as they used to be.
My treatment so far has been for lyme for four or so months and then treated for Bartonella for four months. I ended my treatment with Bactrim and Biaxin together, supposedly to kill Babs. That made me herx like mad for nearly five weeks.
Since then I've been on no abx (it's been around two months). I'm seeing my new LLMD for the first time this Monday.
I am just so confused as to why I have good and bad days. I know it's normal in lyme in some people. Some people have good and bad days and some don't.
It's been two months that I've been off abx. I've had good and bad days, as usual. Truthfully, not a whole lot of good days, maybe 10 in a whole month, but when I have the good days, I start doubting if lyme is what's wrong with me. Most of the days that I have are "okay" or "so-so" rather than what I'd call good. And then I have the bad/crappy days.
I just expected that being off abx for two full months, that I'd be having worse days by now. But I haven't. I've kind of maintained - bad and good days. And it's GREAT, it really is, but it makes me doubt.
So I'm just wondering who has good and bad days as well? Am I the only one who gets confused by it? I can have a really good day and then the next day feel extremely ill. It's just so strange to me. So when I have a few okay days in a row, I'm even more confused.
Maybe it's just that my bacteria load is down now.
I also know that lots of times off abx people feel better. But it has been two months... Wouldn't the lyme and or co's have come out by now and reproduced?
PS - I have been off abx for two months, but I am still taking herbs and whatnot... like Enula and freeze-dried Garlic, Grapefruit Seed Extract, etc.
Thanks,
Ashley
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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It can be all kinds of reasons you have good & bad days. Reproductive cycle of the #@&%*er's, whatever you are taking to kill the #@&%*er's, not enough sleep, overextended yourself, diet and heat. You get my drift.
I still have good and bad days, you're not alone.
I have never heard of babs tx w/ biaxin and bactrim. I can only speak for myself I used Mepron, zith, Lariam, and art. They seemed to have helped me, so far.....
Check back and tell us what the new LLMD tells you, ok? Good luck!
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
at my sickest, i had only horrific days. i was bedridden and felt like death, literally, 24/7. now, i'm like you: i have good and bad days. my bad days are MUCH more tolerable than they used to be, thank goodness. my 'good' days aren't spectacular, i still don't feel 'normal' or 'healthy,' but i can feel myself headed there, if that makes sense.
posted
We had a thunderstorm earlier, and now my brain is too big for my skull again.
I even hate getting my hopes up anymore - whenever I have a good day, it almost inevitably is followed by the worst day of my life, and I am not noticing that the good days are increasing or outnumbering the bad days either.
And what I would give for this beast in my jaw to stop gripping it so tightly.
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-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
/\/\/\ Any others?
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
since i was put on levaquin, i have the pain from hell and can barely walk.
there are no good days any more.
i don't know if it's worth it....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
D, one reason for good and bad days can be due to our overdoing it one day and then needing a day, or more, to recover from that. This phenomenon is called "push/crash."
In my opinion the best way to prevent this is listening to your body and resting when it says rest. It can be a pain, but it really helps.
Another thing to try is to look at the list of things you plan to do in one day and be aware that you probably will only be able to do about half of them. Then you can cut the list in half and feel better about getting things done.
Take care.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Ugh, me too.
I just spent 8 days in bed, just one step above comatose; quite literally.
The 9th day, I woke up feeling great. Complete contrast.
I am on Bicillin shots, and others have said the herxes are awful but right after them you see marked improvement.
However, the good / bad day deal has always been my standard, only the ratio has changed. The ratio may stay constant for months at a time.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
I've been off abx 4 mos now and only doing occasional mesosilver but maintaining supplements, diet, exercise, etc.
I would say I have the same thing Hewialove does: Good days I can get stuff done, be "normal" and bad days are still decent but come out of nowhere and blindside me.
I have yet to find any rhyme or reason for it yet but it's definitely heading in the direction of more good days than bad.
I think your body has to build up its endurance and your mind has to start thinking and trusting that you're becoming healthy or it will hold you back.
You (and I) may be one of those people that need to stay on some type of maintenance (started taking the mesosilver everyday and am looking into deseret bilogicals) to maintain our health, and most of all, our TRUST.
I cannot give you a scientific reason for the "whys" but it sounds totally normal for what you've gone through.
Frankly, I'm tired of trying to figure out WHY and just take the good days and run with them, hoping they will multiply.
You're not alone in this confusion, and yes, I still think your diagnosis is correct. Don't go looking for trouble...it's just not a clear-cut illness and that's what's scary and frustrating.
posted
Wow...do I ever relate. My "good" days are never really good, but yes, I have the up and down stuff too. Mine are literally hourly. I have not figured out any rhyme or reason to it, very random for me.
Mine is not so much pain, unless it's my neck. Mine is all about my nervous system...how tremory, shaky, jumpy, "plugged in," I'm feeling. Oh...and of course, how dizzy or off-balance I might be, ugh.
You are definitely not alone! I too start doubting diagnosis...but, when I've tested positive for babs, bart, ehrlichia...plus a bunch of significant Lyme bands, have tons of Lyme symptoms, nothing else showing up on other testing...
If it looks, acts, tests like LD...I guess it is! Hope your new LLMD appt goes well, good luck.
Posts: 566 | From West Coast | Registered: May 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
quote:Originally posted by unsure445: I can have a few good hours and be convinced I never had Lyme disease.
A few good days and I wonder why I am on antibiotics. And then a few bad days and I think I'm not treating aggressively enough.
This is truly precious! I couldn't agree more! So simply stated, and so true! Very validating to read.
Thanks for starting a great thread, Ash. We all need to know we are not alone, or mind freaks!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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