Has your doctor ever stopped your antibiotic therapy?

I had to stop pretty soon after I started too. I saw the doctor and did bloodwork just after I started. Before I could get home the doctor called and told me to stop immediately because of my liver values. I was scared to death! We left them off for a few weeks, getting labs done every week. Finally, the values returned to normal and he changed one of the 3 antibiotics. Things have been fine since then, and I even got a negative culture a few months later! Hang in there!

I had to stop after a month because of very high level of liver enzymes. After a week blood work showed improvement and the antibiotics were introduced one at a time and my liver enzymes level was checked. As soon as rifabutin was reintroduced liver enzymes went out of the chart. It was stopped and clofazimine was added plus iv amikacin with once a week blood work. So yes to your question.

I took myself off the antibiotics.
After repeatedly telling my ID Doctors something wasn’t right for three months I asked for an autoimmune check which came back positive ANA and a chromatin levels at 2.4 (0.2 normal) . The damage this has done to my connective tissues/Vision/Nerve Damage/Skin/Neurological and lots more is unbelievable that continues to progress to this day. My body will not absorb any nutrients and my muscles are literally dissolving. The irony is that 3years later one of my cavities has significantly reduced. I still have MAC but I fear that the adverse reaction to the Ciprofloxacin is going seal my fate.

Ciprofloxacin is used for Pseudomonas but never heard of using it for MAC. What was it prescribed for? At any rate it is not one I have been willing to try.

Exactly it shouldn’t have been used it was literally picked out of thin air it’s not even effective for pseudomonas.
I was given no warning the doctors here in UK are ignorant of the real side-effects of this toxic drug. It resulted in me being able tp tolerate any more antibiotics as the damage from cipro still progresses as it does with tens of thousands of other people who left to rot.
So I was simply discharged. And they don’t care about the mistakes because they are protected
The stuff should be banned today.

Before taking Fluroquinolones (Ciprofloxacin, levofloxin)
https://fq100.org/?fbclid=IwQ0xDSwLc6bVleHRuA2FlbQIxMQABHr6Nvi9eLCtC62EHFDdXcAwc2gIuhZl7-zKYWzXFz7f6dxihK7OTqfZrShw3_aem_C9UZbvDZqtj3WW24jDFnmw

I'm sad to say I was just told I have to pause treatment three months after starting because I experienced vertigo attacks, bad constant tinnitus and my hearing felt funny (for the record, I had occasional vertigo and occasional though not constant tinnitus before I started). A hearing test showed a significant loss of hearing in one ear since the baseline done right before I started the Big Three. I know there is clofazime and Amikacin, but the latter has high ototoxicity as well. I'm concerned about what the future holds for me if I can't take a macrolide, but I know many of us here may be in the same boat of having MAC and limited treatment options, and some do okay!

Glad you had the baseline test before you started. Some people were not informed to do so or knew to do so. So important to know what it is before and after starting.
The most and best we can do if we can't take antibiotics is healthy eating, exercise, avoiding stress (good luck with that) drawing in saline solution via the nebulizer as much as possible per the doctors orders, and good consistent air way clearance methods.
Wishing you to be one of those who......"some do okay"!
Barbara

Thank you so much, Barbara! @blm1007blm1007

I can take Ciprofloxacin with no adverse side effects. That Mincycline is a killer for me - low blood pressure, inner ear problems, can't hear, blurry vision, gastro problems with severe pain, and the latest Mincycline occasionally causes me to have a body temp confusion. MY body thinks that I'm overheating and starts to profusely sweat to the point that in only a minute my shirt is soaked with sweat and my body simply cannot function yet I can still think fairly well. I hate that stuff. It is a rough 2 1/2 weeks until it clears my system.