Topic: When (if ever) is it smart to give body a break from abx?
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Not sure if I can trust my instincts here. My LLMD, whom I do trust says forge ahead (though switch meds), my instinct says no, take a break.
I've been on extremely high doses of oral abx for about 5 months. On Malarone too for past month.
No movement until the last month when I regained lots of lots of cognitive function for the first time in 4 years. That's the up side.
The down side is I feel worse and worse physically. Severe pain in my abdomen (I don't think yeast-related), but mostly more exhausted than ever and a general feeling of being worn to the innermost bone. Getting more and more witchy-grouchy as well, not typical for me, even with lyme.
We're doublechecking my blood counts, but it looks like my neutrophils are down by 50% from just a few months ago and are below safe levels, as are my WB and RC counts in general.
Does taking a break increase odds of losing progress, maybe getting slammed even worse? Or in anyone's experience, does the body NEED a break every once in awhile and have you benefitted from taking one?
I know none of us is a DR, much less a LLMD. But I've come to conclude that all of us, including the LLMD's, have to wing it a lot of the time.
So, I would really value the 2 cents worth of anyone else who has flown over this patch---
thanks-- Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I have been on abx for 27 months without out any breaks. I am getting better and my body is holding up. I do lots of detox, anti yeast diet, heavy duty probiotics & milk thistle (all without fail). My instinct is I need to keep blasting away at the ketes. hats
Posts: 956 | From MA | Registered: Nov 2004
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Hi Hats-
thanks for reply. i share the kill kill kill the ketes drive for sure. and am doing anti-yeast diet I and good supplements everything else possible to do.
Plus I've developed a very high threshold for pain both mental and physical, and I ain't a wuss.
As much as anything, its the blood cell counts that worry me- are yours being affected?
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
My stomach was killing me until I got a prescription for Protonix-it's like nexium. I feel much better!
Posts: 561 | From eastcoast | Registered: Aug 2006
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Hurray for listening to your gut! I think that is so important.
I will tell you I was on antibiotic therapy (aggressive) for a year and a half. It was not until the sixth month that I started making ground...there is a post on this site somewhere that figures out the lyme life cycle and figured out it would take a year and a half to cover the necessary amount of life cycles to kill the stuff.
Of course I think that is loose science...
I have started listening to my gut more after that long cycle of antibiotics and I think it has served me well.
From what you say though a lot of what your experiencing sounds like herxing to me. The down to the bone fatigue, the mood stuff, etc...
I would be real careful going off of them right now...but that is my opinion and I am not you.
Take care and keep listening to that gut.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thanks for more viewpoints, Lymied and KarateLady. (and for stomach advise, Shoney!!)
I guess like everything else, when and if to rest probably comes down to individual bodies and circumstances.
Maybe it is not possible to know what to do without simply trying out the options. Maybe tx is just one great big 'ole ongoing freaking experiment for each of us?
At least I no longer have to worry about losing ground if I do stop. Washed my hands this morning-while still holding toast in one hand-- and the cognitive day went drastically downhill from there.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi sometimesdilly,
I had to listen to my gut instincts also. I was never able to get up to a high dose of 1000mgs of Zithromax a day, or higher dosages of plaquenil/ Malarone.
I herxed too bad, my head hurt too bad, etc. So I took it slow, with my LLMD's okay.
I did take some breaks....I had too. If I didn't take any breaks I never would have made it through two years of treatment for Babesia.
My SPECT has went from moderate to mild, at my low dosages, so it worked for me. (This doesn't mean it would work for you however, we are all different.)
Good luck to you, and I hope you feel better soon. Posts: 6641 | From Michigan | Registered: Jun 2001
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posted
I have been on abx for more than 2 years as well. Actually, at some point you want to do pulsing. That is 2 weeks on - two weeks off: you kill them during 2 weeks - they hide - you stop - they come out - you start again. Works like a charm.
Tim
Posts: 147 | From Westborough, MA, USA | Registered: Feb 2004
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posted
I have been on abx for alomost 2 years. I have taken breaks, no more then a week for me. But you have to listen to your body. Sometimes its important to take a break just to see how your doing, to see how you do off abx. Only if you've been abx on for long periods of time allready. I knew I needed to start up again just because of how I felt.
I agree with Beverly on low doses, I was unable to take high doses and function. Thats something you may want to discuss with your LLMD.
Karatelady & Tim make a good point about pulsing too.
Also detoxing is very important.--- Have you thought about heavy metal detoxing? I think it is very imperative to every lymie to get your body to heal properly.
posted
Hey Dilly- I've been thinking about you- and almost called-but always get sidetracked.
I remember thinking-next time I go to my appointment i"m going to tell LLMD I just have to take a break-instead I doubled my dose.Today a third abx was added and when I commented that I felt like a chemical factory she said="you are, and by the time we're done , and those bacteria are wiped out, they'll be nothing left but YOU"
What an amazing thought-nothing left but me, pure me. Cant wait. Meanwhile I guess we'll just keep slugging away.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thank you all so much for the replies!
I really am struck more with each thread I post in and/or read how individual all of this is (and how utterly absurd it is to have a one size fits all tx plan, even a long one!!).
To answer you first, Tutu. Yes, my Dr is concerned about the blood counts (mostly WB, becuase of increased risk of infection), which is why he wants me to test again at a hospital, not a lab. Says labs can let blood sit long enough to have the counts be off enough to make a difference.
Thing is, though,I've had labs done every 3 weeks for a long time, and I can see for myself that almost every component of my blood has been affected more and more with each month, and now if not actually in danger zone- we'll see--at least definitely real close to getting there. My LLMD wasn't advocating a break if the labs came back real, but a switch to other meds, though that is something we always decide together.
To me, though, that trend says my body is having difficulty handling the abx. My MIND says keep going, but you know what? If I hadn't listened to my body in the first place, I wouldn't even know I have lyme. My mind sure couldn't tell me what the hay was going wrong.
I know whether or not to rest is an impossible call for anyone to make for someone else. I just really needed to hear what others have experienced for themselves.
So, I appreciate the worry that it might be too early, Tutu, and I appreciate the advise to listen to my body, Lise, and your insight Beverly--that low doses were the key for you--and Cobby, that full speed ahead is the only way to go for you.
After listening to you all and doing an intuition doublecheck, I think I've decided to take a middle road- go off the Malarone (which I understand MIGHT cause cancer) and cut my mino in half, but not stop it altogether.
I'll wait and see which happens first- the WB cells come back up, or I go down so far and fast I'm a'screaming for truckloads of abx. Just one more chapter in the experiment...
Thanks again- Dilly
(and Cob---yes, VERY soon. )
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Hi Dilly-just read your post..all of my blood counts have been "off" for the last month or so..wbc, rbc, kidneys, etc..I am kinda concerned too and have been looking up every aspect of my weekly cbcs and trying to figure it out.
Is it due to all the antibiotics, supplements, lyme or just a "weird reading"?
Anyway,am trying not to worry about it yet until the doctors do..I have been told it is nothing to be concerned about, at least not yet.
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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