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Posted 7/6/2018 1:26 AM (GMT 0)

notsosicklygirl said...
Mine looks like it was just one pill a day. it said 800/160, but that may have been my ending treatment when I was out of the hospital and getting close to stopping.

I am 115 lb.

I am really scared of that SJS thing.
What other meds?

the 800/160 is the Bactrim DS (double strength)

I'm not sure if they would have weaned you off...usually that isn't the case from what I've seen with abx.

Are you looking for a substitute? You don't have the lung infection anymore do you?
Posted 7/6/2018 1:44 AM (GMT 0)
Girlie, except for hiperkalemia, that can create irregular heartbeat (but if she do blood testa and potassium levels are ok, no problem) do you know if bactrim by itself can induce cardiotoxicity like macrolides?
Posted 7/6/2018 1:45 AM (GMT 0)

OriolCarol said...
Girlie, except for hiperkalemia, that can create irregular heartbeat (but if she do blood testa and potassium levels are ok, no problem) do you know if bactrim by itself can induce cardiotoxicity like macrolides?

I haven't seen that it can. But, I've not gone looking for it...
Posted 7/6/2018 1:57 AM (GMT 0)

Girlie said...

notsosicklygirl said...
Mine looks like it was just one pill a day. it said 800/160, but that may have been my ending treatment when I was out of the hospital and getting close to stopping.

I am 115 lb.

I am really scared of that SJS thing.
What other meds?

the 800/160 is the Bactrim DS (double strength)

I'm not sure if they would have weaned you off...usually that isn't the case from what I've seen with abx.

Are you looking for a substitute? You don't have the lung infection anymore do you?

No, thank goodness. This was 2 or 3 years ago!! I am doing great now.

I am worried about ever taking anything with the side effect of sjs. Those images were scary, and you're right, you can't unsee them.

They sort of weaned me off. They said i could use it as a prophylactic, especially if i was on prednisone, but then I had surgery and haven't needed any steroids.
Posted 7/6/2018 2:06 AM (GMT 0)

notsosicklygirl said...

Girlie said...

notsosicklygirl said...
Mine looks like it was just one pill a day. it said 800/160, but that may have been my ending treatment when I was out of the hospital and getting close to stopping.

I am 115 lb.

I am really scared of that SJS thing.
What other meds?

the 800/160 is the Bactrim DS (double strength)

I'm not sure if they would have weaned you off...usually that isn't the case from what I've seen with abx.

Are you looking for a substitute? You don't have the lung infection anymore do you?

No, thank goodness. This was 2 or 3 years ago!! I am doing great now.

I am worried about ever taking anything with the side effect of sjs. Those images were scary, and you're right, you can't unsee them.

They sort of weaned me off. They said i could use it as a prophylactic, especially if i was on prednisone, but then I had surgery and haven't needed any steroids.

There are several options for other antibiotics: Amoxicillin or Augmentin, Azithromycin., maybe Ceftin...Not sure which ones would be useful for a lung infection...but probably one or more would be and you could ask your Dr. for an alternative to Bactrim.
Posted 7/6/2018 3:12 PM (GMT 0)
Today she has started bactrim!!! I'm more nervious than her Jajajaja...

Did you feel any change to better with this drug girlie? Her llmd say but i don't subscribe it because he's not like mozayeni an expert on bart... But he says it's powerfull than rifampin because it has more cns penetration anb brain penetration.

I don't know if mozayeni uses bactrim in some of his patients. Anyone know it?
Posted 7/6/2018 4:26 PM (GMT 0)
I don’t know because at the same time I went on bactrim DS I also was taking Mepron at double dose (had only taken 1 tsp dose before) so I can’t say what did what. I started it end of February on a pulsed schedule taking it only one week of 3 or 4 weeks schedule.

I’ve had some little improvements in a couple symptoms but can’t attribute it to bactrim in particular.

I don’t believe it’s more effective than Rifampin or Rifabutin especially if bart is not a fairly recent infection.

I can’t say for sure but from what I’ve read/seen it’s not what Dr M usually uses.
Someone I email with is taking Biaxin and Rifabutin for bart.

Dr M’s webinar - he talks about Biaxin and Rif

But I can’t say he NEVER uses bactrim - I don’t know.
Posted 7/6/2018 6:59 PM (GMT 0)
My nurse thinks i had a endothelial sjs reaction to bactrim. vasculitis was painful and anemia was bad as it blocks paba folate pathways...real bad if your sulferation pathways are blocked ....it may have just damaged the bart in my nerves who knows ...i do know it changed me ...i still have trouble in the sun and wasting never came back on hands and feet .keep us posted how she does
Posted 7/6/2018 7:08 PM (GMT 0)
Was it your first abx before start any treatment? Maybe it was a severe herx reaction. I had severe neutropenia, neuropathy, pain in all my body, loss of collagen in my eyes, because appeared a lot of floaters, etc.... And it was something leaving my body but i don't know what ot was
Posted 7/6/2018 9:52 PM (GMT 0)
She didn't tell me the truth.... She has not take it... She've been reading about bactrim and found it....

Here we examine KCNE2 in 98 patients with drug-induced arrhythmia and identify four missense variants, three mutations that diminish potassium flux at baseline (M54T-, I57T- and A116V-MiRP1) and a single-nucleotide polymorphism (SNP) producing T8A-MiRP1 that is present in ≈1.6% of healthy individuals (9). Our patient with the SNP had a normal electrocardiogram at rest but developed a very long QT interval on Bactrim [trimethoprim/sulfamethoxazole (TMP/SMX)] therapy. The apparent etiology: channels formed with T8A-MiRP1 are inhibited by SMX at levels present in the sera of patients on TMP/SMX.

Now, she is afraid again... No macrolides, no bactrims
Posted 7/6/2018 10:01 PM (GMT 0)
So she has a 98.4% chance of not having a reaction.

Do i recall that this is a preventative treatment plan Oriol?

~beth
Posted 7/6/2018 10:02 PM (GMT 0)

OriolCarol said...
She didn't tell me the truth.... She has not take it... She've been reading about bactrim and found it....

Here we examine KCNE2 in 98 patients with drug-induced arrhythmia and identify four missense variants, three mutations that diminish potassium flux at baseline (M54T-, I57T- and A116V-MiRP1) and a single-nucleotide polymorphism (SNP) producing T8A-MiRP1 that is present in ≈1.6% of healthy individuals (9). Our patient with the SNP had a normal electrocardiogram at rest but developed a very long QT interval on Bactrim [trimethoprim/sulfamethoxazole (TMP/SMX)] therapy. The apparent etiology: channels formed with T8A-MiRP1 are inhibited by SMX at levels present in the sera of patients on TMP/SMX.

Now, she is afraid again... No macrolides, no bactrims

So that is 1.6 % of the population that has that gene?

Your gf could get the 23andme test done
Or she could get take it for a week and get the long qt test done and see if it has affected her.

How about mino and Ceftin?
Posted 7/6/2018 10:58 PM (GMT 0)
Yes, i talk with her about ceftin or cefdinir.

Medicine is so limited with this infections... Outside of rifampin/rifabutin, fluoroquinolones, macrolides and bactrim there is no more abx that can treat it inttacellullar infection.... It's disgusting
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