I stopped abx a couple days ago to help my immune system and under LLMD orders.
During this time I started taking other supps, not sure why, but they made me feel bad. I did not know this at the time and thought it might be from being off abx?
I continued to stay off abx to help my immune system and get the bug out in the open. I stopped all supplements except for the basics.
I have been off abx for about 4 days now and feel great. My mood is so much better and just feel good.
Question: Is this safe to stay off even though I feel good, or can this lead to a bigger problem? Should I start the abx up again?
Would love to hear from you Fuel
Posted by Fuel1212 (Member # 29312) on :
Up anyone ?
Posted by MichaelTampa (Member # 24868) on :
I am not sure what you are really asking/wondering.
But, I would say, I have been off abx before and felt better and better for a period of several weeks--probably a month. But, I still relapsed, and that became clear about 6-8 weeks out as symptoms slowly started coming back. So, if you are asking if it is safe to stay off abx because you're feeling good, well, you could still relapse, sometimes that takes time. Of course, sometimes people don't relapse, and maybe that won't happen for you, but it's too soon to tell. Have you measured with the CD57 test over time or recently?
Posted by x9w5a34 (Member # 28204) on :
Fuel, FWIW, I am off abx as well for the past 1+ month and my doctor wants to keep me off till the end of this month.
I am feeling fine too although I do have symptoms in my legs - symmetrical quadricep and calf muscle pain. These symptoms used to be there off and on while taking abx too.
Posted by Lymetoo (Member # 743) on :
Not a good idea unless you feel you are at the END of your treatment. You should not go off abx for more than a few days unless you've been symptom free for at least 2 months prior.
I always felt better OFF abx since I would then stop herxing!
Posted by James1979 (Member # 31926) on :
Fuel - personally I would prefer to rely on the advice of the LLMD, if you have a good one that you trust. If you don't trust your LLMD very much, then I would prefer to lean towards longer abx treatment as opposed to shorter.
Michael had a good point about the CD57: If I saw my CD57 numbers jump up, only then would I feel safe without abx.
Dr. B said not to think you're cured of Lyme until you go 3 years without symptoms. Why would he say that, except if he saw that Lyme is a relapsing disease?
My biggest worry about trying to go without abx is that maybe you'll give the bugs enough ground to take over, and then maybe you'll have to start over "from the beginning". I don't know if it works that way, but it might be something to think about.
But JSYK, this is a very difficult question to answer. Not only is every case extremely different, but also someone would feel uncomfortable to tell you "Yes! Go without abx!", because if you relapse, then they'd feel bad that they gave you that advice.
Posted by Fuel1212 (Member # 29312) on :
Perfect! that's what I was looking for... going to take my pills now..
BTW - My CD 57 is at 19, but my blood sat at least 24 hours before it was even shipped, which I have heard can hurt.
I don't feel like I am at my end. My doctor just added Minocycline to my Ceftin and Azith.
Thanks all going to take my abx now
Fuel
Posted by Fuel1212 (Member # 29312) on :
James - Yeah I know that was a difficult question didn't mean to put people on the spot.
I was actually just looking for stories that would correlate.
Sorry wasn't looking for Doctors advice just how Lyme works and similar Lymies stories, which is what I got.
Many thanks Fuel
Posted by triathlongal (Member # 31684) on :
I took frequent abx breaks during my tx. but not until well into tx.
Would go off once I felt good for a couple months and then back on after I felt lymie again.
The longest I felt good off of abx w/out a relapse OR re-infection is 4 months.
I am off again and holding steady. Everyone is different and for me the abx. breaks are very helpful for my immune system and my detoxing.
Each time I go off it takes longer for me to feel sick again...It seems to work for me.
Posted by James1979 (Member # 31926) on :
That's a very interesting viewpoint, triathlongal. I wouldn't have expected it to work that way. It's probably nice in those cases to give the immune system a break.
Posted by Fuel1212 (Member # 29312) on :
Very interesting... I do think these abx take a serious toll on not only our organs but immune system as a whole.
I would love to see some testing with Triathlongal's method. It makes sense.
Posted by Lymetoo (Member # 743) on :
I took BRIEF breaks of 1-3 days when herxing my head off. Then right back on.
One exception. I had to take a 2 month break when I herxed to H and back. It was awful. It taught me that really hard herxing is counterproductive. I LOST time.
The body can only take so much!!
Posted by FYRECRACKER (Member # 28568) on :
My LLND had me on ABX and switched me to herbal BW to treat co-infections.
You can give your system a break off abx and continue to treat with herbs, I would think that is a smart thing to do at times. But everyone is different.
Posted by ktkdommer (Member # 29020) on :
When I've read about antibiotic breaks they aren't very long especially for those of us with chronic Lyme and seeing ILADS doctors. I think it is Dr. J. who is doing more with breaks as a way to check out how the immune system is functioning. Then that data is used to treat and move forward. It is highly controlled and monitored.
My doctor says as long is there is progress there is no reason to shake things up. Once progress stagnates, then he might change a med or add a supplement or herb. He has never wanted us to herx like crazy.
Posted by aMomWithHope (Member # 19255) on :
DD has only recently started to take breaks, since she has been on a plateau for a while now.
But she has been treating for a long time now, and we are hopeful that she is coming to the end of treatment in general.
The breaks seem to help her a lot:
a) gives her body a rest and helps her to rebuild her immune system
b) time off is spent detoxing
c) once back on, the abx seem to work MUCH better than prior, i.e., first noticeable herx was after her first 2-month break. I think this is because the break from the abx allowed the cyst forms to convert back into kete form.
d) she does use herbals though while off abx, so isn't completely without some support.
Not sure if this is a good or bad method, but right now it seems to be working for her.
Good luck with whatever you (and your LLMD) decide.
Posted by CherylSue (Member # 13077) on :
good thread - my LLMD wanted me off abx to detox and try homeopathic, Deseret Biologicals, etc.
I dropped one abx, but was scared to drop the Ceftin. I begin school (work) in another week.
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