Jump to content
ACN Latitudes Forums

Recommended Posts

Posted

Ive heard of the die off but what is it exactly . How long does it last? What other symptoms ? Does it really help?

 

Making an app with Dr B waiting for them to call me back.

 

 

Melanie

Posted (edited)

Hi Melanie

 

the die off reaction , or herxing, Herxheimer, is when microbes are killed and release toxins. Those toxins enter the bloodstream and cause ick symptoms in some people.

 

lots of water, epsom baths, and detoxifying supps that "mop up" the toxins are helpful in reducing the effect, and taking good probiotics helps very much

 

my son has always benefited from acupuncture and chinese cupping for detox during any die off

Edited by Chemar
Posted
Hi Melanie

 

the die off reaction , or herxing, Herxheimer, is when microbes are killed and release toxins. Those toxins enter the bloodstream and cause ick symptoms in some people.

 

lots of water, epsom baths, and detoxifying supps that "mop up" the toxins are helpful in reducing the effect, and taking good probiotics helps very much

 

my son has always benefited from acupuncture and chinese cupping for detox during any die off

 

 

He goes to accupunture tonight Ill let the therapist know any specifics?

Posted

If you are giving the powdered form, you are supposed to start with a very small dose and titrate up to the therapeutic dose of 1/4 tsp. four times per day. Starting with 1/16th tsp once per day, then twice and so on. This slow increase helps to avoid any stomach upset. I don't actually recall hyperactivity as a result, but then again, he was already climbing the walls before we started.

Posted
Ive heard of the die off but what is it exactly . How long does it last? What other symptoms ? Does it really help?

 

Making an app with Dr B waiting for them to call me back.

 

 

Melanie

 

 

could this be what just happened to ds.....???????

by the end of vanco ds screeches/vocals were completely gone!!!!!!

i had 2 days left of amox and i was to roll into nystatin as soon as the vanco was done....by the next day the vocals were back....and last night and today they are the worst ever!!!!

he has the sneeze like lauren and the screech and a k,k,k, and a ch, ch, ch with every breath..........i can bearly write this...i can't stand it!!!!!!

the teacher emailed this morning and she is concerned.....is this all die off????

Posted
Ive heard of the die off but what is it exactly . How long does it last? What other symptoms ? Does it really help?

 

Making an app with Dr B waiting for them to call me back.

 

 

Melanie

 

 

could this be what just happened to ds.....???????

by the end of vanco ds screeches/vocals were completely gone!!!!!!

i had 2 days left of amox and i was to roll into nystatin as soon as the vanco was done....by the next day the vocals were back....and last night and today they are the worst ever!!!!

he has the sneeze like lauren and the screech and a k,k,k, and a ch, ch, ch with every breath..........i can bearly write this...i can't stand it!!!!!!

the teacher emailed this morning and she is concerned.....is this all die off????

 

 

Whats vanco?So after the vanco you went to the nystatin and his tics came back?

 

melanie

Posted

Hi,

 

We have lots of experience with nystatin and vancomycin. In 2004 when my son first became ill with debilitating ocd and motor tics, vocal tics, we were shocked at how sudden it happened- literally overnight. Nystatin is what we tried first, per a doctor in WI who thought my son had a yeast overgrowth. Well, it worked miraculously. He became ill in April. We treated him in July. He was better in days, and slowly improved over the next four weeks in a consistent pattern. The first tics to come were that last to go away. In 2005, he had a sudden blip of tics that also went away with nystatin. He remained "well" until 2009. This time, nystatin did nothing. We found out he had a pretty severe, chronic gut infection with Clostridium difficile. Flagyl was given first, with immediate improvement in tics and ocd, in addtion to helping the gut issue. At 14 days he was nearly perfect. After 14 days of flagyl, we stopped but saw an immediate return of symptoms. GI doc put him on vancomycin. He was fine in a few more days. He returned to school after two weeks of home school. He continued to get well on vancomycin, improving in ability to do school work, listen, follow directions, and was going outside to play. We learned about "pulse dosing" through a researcher working on C. diff. So, we dropped the dose down but kept him on for another two weeks, then, to one pill per day, then one dose every few days for another month. So, he was on vancomycin from mid January into April I believe. We have learned recently that he may have also had a chronic Mycoplasma pneumoniae infection, with a reservoir of bacterial infection in the gut. Since nystatin also works on Mycoplasma bacteria, in addition to yeast cells, it may have been the case that the Mycoplasma was treated, resulting in improvement of symptoms. We will never know which it was, but Dr. T. doesn't think it was C. diff. that caused the PANDAS like illness. About taking nystatin...

 

Contrary to what most docs say, you should not start an antifungal immediately after stopping an antibiotic that clears the lower colon. Here's why: Much of the normal gut flora is diminished on vancomycin, along with bad bugs such as Clostridium difficile. Vancomycin does not sterilize the gut, as many people think, but it does clear out a lot of the beneficial biofilm that has built up within the intestinal mucosa. Since the vancomycin has cleared out much bacterial growth, the empty space is gradually taken up by yeast cells, crowding out any fast growing bacteria that may be trying to hold on. Wiping out yeast all at once allows surving bacterial cells to repopulate the gut lining as fast as they are killed. Getting rid of yeast (which I don't think is that important actually, unless there is a systemic overgrowth and candidiasis in immune compromised people) can be done gradually once the normal bacterial population has been restored in the gut. And that happens whether you take probiotics or not. When taking nystatin, it is really important to start with a small dose and work up to the maximum dose.

 

I did not use nystatin at all after my son finished the vancomycin. He could NOT tolerate any powdered probiotic, so the only thing I gave was Kefir and that did the trick. If the infection is in the gut, I theorize that some of the tics can be caused by irritation and damage to the vagus nerve. Some toxins that are pumped out by bacteria can reach the brain directly via the vagus nerve, which connects the gut to the brain to send chemical messages. Nystatin may irritate the vagus nerve too much. Again, just a theory of mine, but I'm sticking to it! :mellow:

Posted

Yes, and yes. Any antibiotic that removes much of the resident flora (both bacterial and yeast cells) will make one more likely. That is why they call it "antibiotic related diarrhea" on the warning section of the product insert that comes with antibiotics nowadays. They are referring to C. diff. It is probably in most of us in controlled numbers, but as soon as you "make room" by taking a broad spectrum antimibiotic it grows out of control.

  • 1 month later...
Posted

Hi,

 

My daughter is on multiple antibiotics treating lyme and PANDAS and we have been struggling with her motor tics for some time now. We recently did IVIG which helped ALOT with the behavioral issues but we still couldn't kick all of the tics. In fact, they seem to be getting worse and I haven't been able to figure out why, until I read your post. I have a feeling that my daughter does indeed have a yeast overgrowth which is causing or at least intensifying her tics. I don't believe that I can take her off of her antibiotics because of the lyme and the PANDAS but do you know if I can still treat her with Nystatin etc. while still on the antibiotics?

 

Thanks,

 

Cindy

 

Hi,

 

We have lots of experience with nystatin and vancomycin. In 2004 when my son first became ill with debilitating ocd and motor tics, vocal tics, we were shocked at how sudden it happened- literally overnight. Nystatin is what we tried first, per a doctor in WI who thought my son had a yeast overgrowth. Well, it worked miraculously. He became ill in April. We treated him in July. He was better in days, and slowly improved over the next four weeks in a consistent pattern. The first tics to come were that last to go away. In 2005, he had a sudden blip of tics that also went away with nystatin. He remained "well" until 2009. This time, nystatin did nothing. We found out he had a pretty severe, chronic gut infection with Clostridium difficile. Flagyl was given first, with immediate improvement in tics and ocd, in addtion to helping the gut issue. At 14 days he was nearly perfect. After 14 days of flagyl, we stopped but saw an immediate return of symptoms. GI doc put him on vancomycin. He was fine in a few more days. He returned to school after two weeks of home school. He continued to get well on vancomycin, improving in ability to do school work, listen, follow directions, and was going outside to play. We learned about "pulse dosing" through a researcher working on C. diff. So, we dropped the dose down but kept him on for another two weeks, then, to one pill per day, then one dose every few days for another month. So, he was on vancomycin from mid January into April I believe. We have learned recently that he may have also had a chronic Mycoplasma pneumoniae infection, with a reservoir of bacterial infection in the gut. Since nystatin also works on Mycoplasma bacteria, in addition to yeast cells, it may have been the case that the Mycoplasma was treated, resulting in improvement of symptoms. We will never know which it was, but Dr. T. doesn't think it was C. diff. that caused the PANDAS like illness. About taking nystatin...

 

Contrary to what most docs say, you should not start an antifungal immediately after stopping an antibiotic that clears the lower colon. Here's why: Much of the normal gut flora is diminished on vancomycin, along with bad bugs such as Clostridium difficile. Vancomycin does not sterilize the gut, as many people think, but it does clear out a lot of the beneficial biofilm that has built up within the intestinal mucosa. Since the vancomycin has cleared out much bacterial growth, the empty space is gradually taken up by yeast cells, crowding out any fast growing bacteria that may be trying to hold on. Wiping out yeast all at once allows surving bacterial cells to repopulate the gut lining as fast as they are killed. Getting rid of yeast (which I don't think is that important actually, unless there is a systemic overgrowth and candidiasis in immune compromised people) can be done gradually once the normal bacterial population has been restored in the gut. And that happens whether you take probiotics or not. When taking nystatin, it is really important to start with a small dose and work up to the maximum dose.

 

I did not use nystatin at all after my son finished the vancomycin. He could NOT tolerate any powdered probiotic, so the only thing I gave was Kefir and that did the trick. If the infection is in the gut, I theorize that some of the tics can be caused by irritation and damage to the vagus nerve. Some toxins that are pumped out by bacteria can reach the brain directly via the vagus nerve, which connects the gut to the brain to send chemical messages. Nystatin may irritate the vagus nerve too much. Again, just a theory of mine, but I'm sticking to it! <_<

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...