gigimac
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Member # 33353
posted
Have you guys experienced withdrawal from coming off of abx? Someone mentioned this and I am just hoping it is not commonly experienced.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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Kudzuslipper
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posted
I am curious about this too.
Posts: 1728 | From USA | Registered: May 2011
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posted
I am probably the one who mentioned it. It may vary with the person. It was meant to be a positive piece of information because if you stop and get sicker, it doesn't necessarily mean you should go back on.
I am so grateful for the alternative doc who helped me by telling me about this. Otherwise, I would still be on antibiotics and probably sicker than I am now.
It lasted a couple of weeks in its most intense form but I think a lot of effects from antibiotics have slowly healed over the years. I was on meds for 6 years, and have been off for about the same.
I am not saying the meds weren't needed for some time, but if I had known that my doomed efforts to stop were from withdrawal, I would have gotten off years earlier. Instead, I listened to my LLMD and went back on, again and again.
I have a lot of autoimmune problems as a result of all this. I don't know if the autoimmune problems are from Lyme, or from tetracycline,which exacerbates or even induces lupus. So my situation may be different from others. My "lupus" is so much better off antibiotics, including my blood tests for lupus.
Posts: 108 | From US | Registered: Apr 2012
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Kudzuslipper
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posted
Pug, can you tell what the symptoms were? I have been having Gastro symptoms when I even just lessen my abx.
Posts: 1728 | From USA | Registered: May 2011
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Ellen101
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posted
Pug I would like to know more as well. Of course alot of us here are wondering if we are just going round and round with abx.
So if you could share what type of withdrawal you are talking about that would be great. What type of alternative doc are you seeing?
Posts: 1748 | From United States | Registered: Dec 2011
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dbpei
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posted
I would like to know too, Pug. I just stopped all of my ABX and would like to know what to expect, if anything.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I had to stop abx for a 3 day pulse of Coartem and I've been off all other abx now for about 8 days and stopped them all suddenly and have only felt better if anything. Nervous to start them in again Sat.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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posted
When I stopped the Rocephin IV, I did temporarily get worse,for about a week, but then the flare up faded away again. My Dr. said that wasn't unusual.
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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gigimac
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Member # 33353
posted
Pug, I didn't mean to take your info and turn into something negative but I have thought about switching to herbals or something instead of abx and the thought of having to worry about withdrawal on top of everything else sucks.
I already take several other meds I am dependent on and I never considered abx as something else I would have to suffer through to get off of.
Do you know if doxy can cause withdrawals?
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
I just want to say that everyone is different. I was on zithromax/PLaquenil and tetracycline. The alternative doc told me that antibiotics (perhaps especially the tetracycline family, I don't remember) not only kill or inhibit bacteria, but have anti-inflammatory properties, so there is a brief increase in inflammation when going off them. Someone else told me that the immune system gets used to the antibiotics helping with eliminating pathogens, so there is an adjustment with that too. I really don't know.
What I do know is that I tried to get off for a few years and it appeared, to me, that I could not. When I tried to go off, I had more pain, got very foggy and dizzy, had increased parethesias and other weird sensations, maybe had trouble using my fingers, I am sorry I don't remember enough: it was 6 or 7 years ago. I felt doomed to stay on meds forever, and I knew they were also making me sick in many ways, especially GI.
Gigimac, honest, this was supposed to be a note of hope. At the same time, I am not really able to say if this applies to every person, or every med, or every immune system. As I said, I have positive autoimmune tests, even today, so my immune system may be different from yours.
However, it is also true that this doc gave me enough hope about getting off for me to persevere through a couple of hard weeks. They were not horrible, and it was worth it to find that I slowly felt better after a little time went by.
I am not in perfect health, by any means. The turning point for my life was to accept what level of problems I still had once off the meds, and then try to work around the edges of that illness with whatever gentle means I could. Because I was no longer trying to kill off Lyme all the time, I stopped thinking of myself as sick, and tried to enjoy what I could each day.
Again, that seemingly pollyanna attitude does NOT apply to some of the people on this forum who are still severely ill and need meds! Hopefully, it will some day!
Posts: 108 | From US | Registered: Apr 2012
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posted
ps Gigimac, the point isn't that you will suffer withdrawal. The point is that I thought I could never get off antibiotics, but I did, with the new info that the rough week or two after stopping was not Lyme relapse but withdrawal. For me, at any rate.
And as a disclaimer, if I had gotten off too early, any symptoms I had could very well have been Lyme. At the time I got off meds, I had had a long course of treatment and was not experiencing any more improvements on the antibiotics, and hadn't for some time.
Posts: 108 | From US | Registered: Apr 2012
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posted
Larae, if you feel better, maybe you could stay off meds until you feel worse-?
Posts: 108 | From US | Registered: Apr 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
pug, Thank you so much for trying to share this important information. I stopped all ABX less than a week ago. I did experience some strange sensations that felt 'lyme like' and wondered if I was doing the right thing.
I am starting banderol and samento (these are actually herbal ABX) as my LLNP thinks that my disease is no longer 'active' following a review of my labs and change in symptoms over last year.
She says that the lymphocyte panel showed that my immune system is "amazing" ! But there is still some inflammation that indicates my body is working hard to detox something. I feel so fortunate that my immune system is in full gear and working for me again. I hope this doesn't seem like bragging to anyone. I just want to give people hope.
We are working on other components now - heavy metals, toxins, parasites, ... It is scary to be off all prescription ABX and not worry when I experience any lyme like symptoms. But it also feels good to know that I am no longer stressing my body with these ABX. I was beginning to have some GI issues and my tinnitus was getting worse instead of better...
I will try to keep people posted on my progress so we can continue to learn from each other.
Posts: 2386 | From New England | Registered: Aug 2011
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Kudzuslipper
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Member # 31915
posted
Thank you pug for Sharing. And dbpei. It is good to know, we can get off! This is a very optimistic thread.
Posts: 1728 | From USA | Registered: May 2011
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! But there is still some inflammation that indicates my body is working hard to detox something. I feel so fortunate that my immune system is in full gear and working for me again. I hope this doesn't seem like bragging to anyone. I just want to give people hope.
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