After 3 1/2 years of continuous treatment with abx, including 6 months of IV, my husband is on a 2-week break from abx. He has been diagnosed with Lyme, and bartonella (clinical dx for the bart). He has never had a formal babs dx, but it was probably in the picture too (he did respond well to Malarone a while back).
He is still taking an herbal tincture for Lyme and bartonella, an anti-viral, many supplements, and has just started Sporanox for suspected mold sensitivity.
I am so on edge. I know he needs this break, and his LLMD says that whatever happens will be information that can help determine the next treatment direction. I'm so worried that he will backslide.
His last dose of meds was last Tuesday evening, and today (Sunday) I'm sensing that some of his symptoms are just a touch worse. I know that it can take a while for Lyme symptoms to return, but that co-infections can roar back more quickly.
Does anyone have any words of wisdom to help get through this time? Your experiences during an abx break, and how (hopefully) it helped? What to watch for?
Thanks in advance from a very worried wife!
Viva
Posted by ESG (Member # 4816) on :
I take ABX breaks all the time, as do my children. Lately I take the Buhner herbs when on an ABX vacation.
Your husband will have to gauge how he feels - and hopefully it is okay with his doc if your husband gets back on the ABX as soon as he feels things are going badly again, no matter how many days it has been.
I first started out just stopping the ABX on wkds. and now I do this regularly, after many years of daily ABX.
My son can go for 3 days only, then has to get back on ABX.
I can now go for 2 months.
My daughter can go for a few days, but has never pushed it beyond that.
Keep a daily diary of how he feels, all symptoms. This will help you both and your doc, plus it will be good to refer to it when he takes another ABX vacation in the future.
Having been treated & mistreated for years before getting to an LLMD, I can say that my experience has been that you can get better after again backsliding once back on ABX. So do not panic about this - try to do what LLMD asked BUT if the symptoms get really bad, call LLMD and tell him your husband needs to get back on ABX.
ESG
Posted by Shosty (Member # 12232) on :
For years I thought that I had to be on antibiotics forever, because every time I tried to get off, I would get sick, and sick immediately. After even missing one dose, all my muscles would twitch and I would start feeling foggy, or I would be more irritable. Then all my neuro stuff would get worse.
But I later found out that there is a withdrawal effect if you go off, because (at least some) antibiotics have anti-inflammatory effects.
I finally saw an MD to get me off, and after eliminating food allergens, I am much better than I ever was ON antibiotics.
So, don't necessarily think that a worsening means that he needs to go back on antibiotics forever. It could be that he would feel better if he took a longer break, that lasted past the withdawal period.
I wish I had know this. Six years of antibiotics did me more harm than good.
Posted by beths (Member # 18864) on :
I've gone on many med breaks. For the first few days I feel awful...try to detox a lot. For me, I think my body just "dumps" toxins when off meds. About a week later I start feeling better. Longest I've been off for a break was 2 months..when symptoms came back, I knew they were bart/babs, not abx side effects.
Posted by viva (Member # 8183) on :
Thanks to all of you who have responded. Besides just making me feel better, all of you have added great points to be aware of.
ESG, I am keeping track of husband's symptoms day to day. The trick is not to hover and/or drive him crazy by asking too frequently. In the unlikely case that it hasn't been clear, I'm a bit on the anxious side!
I do know that his LLMD is probably planning more abx. And he did say "don't take the line out," so there may be more IV coming, although I hope my husband gets a break from that.
Shosty, it's really good to keep in mind your point that a reaction during a break may be something other than the bugs or a flare. I think that's part of what LLMD has in mind to try to assess.
And Beth, thanks for the reminder to keep detoxing. I know it sounds dumb, but I was wondering if he still needed to do all that (including starting cholestyramine this week) if he's not on abx. Duh!!
Also great point about distinguishing co's from abx side effects. We've been trying to do this with one symptom in particular, a sense of burning in the brain and spinal cord. Maybe this break will help clarify.
Thank you, friends! I guess I was having visions of a sudden, full-blown relapse. It's great to have some perspective.
And more perspectives would be most welcome, too.
Gratefully, Viva
Posted by sutherngrl (Member # 16270) on :
I have been off antibiotics for 2 months and feel better than I did on them. I have been on plaquenil but stopped taking it a few days ago. So I am chemical free basically and welcome the break.
I can't remember how often the spirochetes replicate but I think it would actually take a few months for them to get to a full blown load again.
Posted by CD57 (Member # 11749) on :
Viva, I also want to second whoever said that I really do think there can be a withdrawal from abx--so some symptoms attributable to that. In fact, your husband's LLMD once told me that you can't just quit mino cold turkey for that reason.
So maybe not all the symptoms he could experience are the illness. After 3.5 yrs I bet he has knocked it back quite a bit. Good news!
Posted by viva (Member # 8183) on :
Just a quick update....it's been the best and worst of times since I posted last.
Within a couple of days of stopping abx, my husband was feeling very, very good. His worst symptom--the cognitive problems--was gone. Other symptoms came and went--creepy-crawly and stingy skin, a couple of blood blisters, some achiness in the spine, some late afternoon fatigue--but nothing that couldn't be pushed through, rested away, or detoxed.
Today is the 2-week mark, and now I think he's backsliding. He feels sick all over ("in his tissues"), he is queasy and weak, and worst of all, his optimism is ebbing away again. It's SO frustrating and discouraging to get a taste of what it might feel like to be well, only to have it yanked away.
I have faxed his LLMD (we're scheduled to talk in a week, but I want to see if perhaps we can head this off before it gets too firmly entrenched).
It's not unexpected, but that doesn't take away the pain.
Hoping for brighter days ahead,
Viva
Posted by Keebler (Member # 12673) on :
-
These breaks is how Pam Weintraub, the author of "Cure Unknown," finally got better. (Chapter 44, pages 290-292.)
Each time, during a break, the spirochetes would ease up and come out to play and then she'd clobber them again. (If I recall correctly) she writes that Dr. B. did it the same way with his own treatment.
I just got this book from the library and was so glad to have seen this chapter first. (I can never read from front to back.)
You are always such a fabulous resource; thank you for sharing your knowledge, even down to the page!
I actually have Cure Unknown; husband has read it, but I have not yet. I will look at that section. I did share your observation with him. He was not in the state of mind to really react, but I know he took it in. Thank you.
LLMD's office called back, and we hope to be able to speak to the doctor on Friday, so we'll see what the next step is. I know my husband will be back on abx; the question is which ones, and will it be orals or more IV?
I just hope he can maintain some perspective till then. It feels like every time he starts to feel like he's getting his life back, it slips away again. I know this is a feeling that many can relate to...but it's still so hard!!!
One more question to throw out: would a recurrence at 2 weeks post-abx be "soon" enough to smack of co-infections (bart, most likely)? Or could it still be Lyme/Bb?
Thanks again, Keebler, and eager for other perspectives as well!
Viva
Posted by Jill E. (Member # 9121) on :
I've had to take many antibiotic breaks due to toxicity, liver failure, pancreatic problems, you name it.
I've been in treatment for five years and for me, the longer I'm in treatment, the slower I backslide when I'm off. However, I just started Babesia treatment, and am still testing positive to four of the five diseases, so I've got plenty of active infection going on.
My main LLMD told me not to go off cold turkey, to taper off, or I could get kind of a rebound herx. But on three of the medications I had to go cold turkey because of such abnormal test results. And it made no difference that I could tell.
The first time I went off, I had only been in treatment about six months, and I got increasingly weak and shaky by the tenth day, and barely made it to twelve days and had to go back on.
The second time, I had liver damage on Ketek and had to go off everything for five months! And I had to watch helplessly as I completely backslid and started almost from scratch. But I got through it.
The last few breaks have been easier - yes, I feel a little worse in some ways, but I can go about three weeks.
Many LLMDs say that if a person relapses very quickly it's due to the coinfections, not Lyme. But I have all the major coinfections, including very bad Bartonella and Babesia Duncani, and I can still take breaks. So each of us reacts differently.
Initially I was panicked if I had to go off. But now I look at it as a positive, that it is allowing my body a chance to naturally detox and have a break. Or as some have said, it's a chance to see if some herbs will carry your hubby through (I have not found herbs alone enough for me, but some do).
Take care, Jill
Posted by viva (Member # 8183) on :
Jill,
Thank you so much for sharing these experiences. "Panicked" is exactly what I have been trying to fight, especially the past 2 days when things really went south.
It's so helpful to hear that you have continued to go forward through the breaks you have had to take. And you're absolutely right that after continuous abx, one's body needs the chance to detox from the meds. In fact, my husband said that it felt like his IV Doxy had gone from killing the bugs to killing him...he truly did need to stop for a while.
I know I also have to find a way to be less reactive when my husband is having those rock-bottom days. Sometimes it's hard to stay strong, and maintain the perspective that this, too, will change.
And he is actually doing better today, which is a relief. Of course, who knows what will come next, right?
Thanks again, Viva
Posted by Judy G. (Member # 18498) on :
For me the absolute hardest thing is to have a day or two or maybe even a week off abx and feel fine and think the end is near and then wham! SO hard to go from elation to the depths... up and down.
It has taught me to live in the moment. And to try to not obsess about every little tiny symptom -- feet a little puffy? dry cough?.... other people have those things too...
I have a hope that someday I will be in the place of some of the posts that I read...years of recovery and living normally. Posted by Jane2904 (Member # 15917) on :
Bringing this up as I was just told to continue with no antiobiotics for a few more days for our daughter...
We have been told to discontinue antibiotics and get a stool culture.
She was having watery stools and then it started to get better even before discontinuation of the meds.-- but LLMD said stop antibiotics for two days, now they want to continue with no antibiotics and get culture done.
I am nervous as she will be off antibiotics possibly for an entire week.
I wonder will there be a problem when she starts back up?
Thanks, Jane
Posted by seekhelp (Member # 15067) on :
I went off abx for 15 days. No big deal. I think people worry too much about short breaks. Posted by sutherngrl (Member # 16270) on :
I have taken a 3 week break and an almost 3 month break before. Don't recommend 3 months; but a few weeks is not a big deal. I actually think it could be good in some instances.
Posted by CD57 (Member # 11749) on :
I want to post something here I was told my LLMD. I don't think this is really considered in the big picture.
What people attribute to a "crash" right off meds, ie feeling worse, what is actually probably happening is the immune system starting to go nuts because it is responding after being suppressed by abx for so long. So symptoms are actually the immune system. This can go on for quite a while. He also said that symptoms coming back within a month or so are likely the bugs showing up again.
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