Nystatin Experience... good or bad

[Guest guest]

There is a post about Nystatin that has sparked my interest in others'

experience with the drug. We are going to put my daughter on it on Monday and I

have such reservations (also Alinia), I want to do everything possible to avoid

complications. I would like to hear about whether it has worked or not, and

what I should look out for.

She also has low iron, but I haven't started that supplement. Is that something

you have heard should be done? The other post mentioned it. We also suspect a

possible parasite (hence the Alinia). She has never tested positive for yeast

but she has dysbiosis and she can not tolerate the higher carbs or fruit.

Thank you!

Yolanda

SCD 12/08 family of 5 with multiple GI issues/allergies/etc

[Guest guest]

Hi Dave, thank you for letting me know. Unfortunately I think all of the

responses I've gotten so far are saying the same thing (I received a few emails

directly). This is unfortunate that so many are getting worse on it. Have you

found out why? I'm wondering if it has to do with methylation/sulfation and

die-off toxins that can't be processed out creating an even more desirable

environment for the bad bugs? I am definitely holding off on that for the kids

until I research this further. Have you researched alternatives or do you think

in hindsight you would stick with the natural antifungals?

Thanks for taking the time to respond, I appreciate it -

Yolanda

> >

> > There is a post about Nystatin that has sparked my interest in others'

experience with the drug. We are going to put my daughter on it on Monday and I

have such reservations (also Alinia), I want to do everything possible to avoid

complications. I would like to hear about whether it has worked or not, and

what I should look out for.

> >

> > She also has low iron, but I haven't started that supplement. Is that

something you have heard should be done? The other post mentioned it. We also

suspect a possible parasite (hence the Alinia). She has never tested positive

for yeast but she has dysbiosis and she can not tolerate the higher carbs or

fruit.

> >

> > Thank you!

> > Yolanda

> > SCD 12/08 family of 5 with multiple GI issues/allergies/etc

> >

>

[Guest guest]

Hi Yolanda,

I've been on Nystatin since the end of October, after seven months on SCD and

after taking antibiotics in late September. I was so horrifyingly sick on and

after the AB, and my stomach got really messed up, too. I take 1.5 MU once a

day (I take it at night), and have remained, of course, on SCD. My experience

is largely positive...I'm moving forward, and I know the Nystatin contributes to

that. I went off of it a couple of weeks ago, and suffered a regression, but

that may have been partially due to the fact that I totally screwed up and make

about three weeks worth of yogurt with non-legal whipping cream (must we be ever

diligent?? there is SO much CRAP in everything!!).

I know Nystatin has a reputation as being very " mild " but mild can be a good

thing when you are very sick. Sure, I had some die-off, but it wasn't

intolerable with the right measures (lots of epsom salt baths, lots of water,

etc). I very much think it has helped following what I would be sure was a

major candida flare following the AB.

I will say that my stomach got really messed up with the AB, and I ended up with

gastritis and a hiatal hernia. And I'm not entirely sure that the Nystatin

didn't contribute to those conditions, but then again, I don't know it didn't

help. It's sometimes really hard to know when so much is going on with our

bodies, and I know my stomach is healing and I'm still on the Nystatin, so I was

likely being paranoid (really easy to do when you are yeasty). All my research

shows that there are very few side effects from it, and people tolerate it

really well. Of course, so much of the med lit is based on adult response, but

at least know the risks are low. Potential side effects are d, upset stomach,

stomach pain, and skin rash.

I thought seriously about the other, stronger anti-fungals like Diflucan, but I

know my liver doesn't function very well and I did't want to damage it further.

And too many folks say that you can only take the Diflucan for so long because

of the liver issue, and that when you go off, all the symptoms return. Nystatin

is topical, so it doesn't enter the bloodstream and require processing by the

liver. I think (and my memory is so bad) that Nystatin derives a yeast-killing

bacteria, and I view it similarly as to taking something like Sac Boulardi. And

I can take it indefinately with very little risk. If you aren't looking for a

faster fix, slow and steady with the Nystatin and SCD has been good for me. And

I've upped the game a little by taking a digestive enzyme prior to the Nystatin

(and I'm going to change it to one of the biofilm enzymes here soon) and I've

been really pleased with the results. You mentioned that your daughter can't

tolerate certain fruits...are you using a digestive enzymes?

I've also seen the antifungal Terbinafine on the austism pages. It's supposed

to be easy on the liver.

Good luck in whatever your decision is, and all the best to your girl. I hope

she is feeling better soon.

Ellen

[Guest guest]

From

what I have discovered in my research on antifungals, they can disrupt the

beneficial bacterial colonies in a significant way. Antifungals may

target the fungal microorganisms, but can impact the bacterial microorganisms

enough to make a difference to our digestion. And then there is the

immune system response, the overload of toxins on the liver …. So

antifungals impact some folks just as badly as antibiotics do. I’ve

come across some real horror stories of patients who had their entire digestive

tract “burned out” from prolonged use of both Nystatin or Diflucan

Some

people do fine with Nystatin or Diflucan, or one or more of the natural

antifungals. Some people do not, and/or discover that the antifungals

cause as many or more problems than an antiobiotic.

All

depends on the individual. So start “low and slow” and use

caution. Probably also a good idea to not take an antifungal frequently,

and to vary the types.

And

don’t forget you can use food choices alone to help get candida under

control. Just takes time and patience. I had a severe reaction to

my first and only dose of Diflucan, ended up in the ER. That was over six

years ago. My body still won’t tolerate any natural antifungals as

a result, not that I’ve tried anything but garlic…. And I am

not using it as an antifungal, just as a seasoning [sigh]. But my immune

system remembers.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

[Guest guest]

No, Amelia, you had it right in the first place. I'm in the middle of

this double course right now. Diflucan first for a month. Then

Nystatin. I asked my doctor why the switch, did Diflucan lose it's

effectiveness after a month? He said no, they work differently. Diflucan

" surrounds and escorts the yeast out of the body " and thus is

usually pretty mild. It works on the easy to get yeasties. Then

after it has done the job, Nystatin comes in to mop up the harder to

find, harder to kill ones. Nystatin does kill them, so it can cause

die-off.

Now, I was scared to death to take the Diflucan but i have to say, this

is the first medicine in my life (except replacement things like thyroid)

that I have ever tolerated well and even liked. Really, no problems

(though I started with a quarter dose and worked up just in case).

Diflucan is my friend! After about a week I started feeling markedly

better. At the end of three weeks I started sneaking into the

Nystatin. You start literally with a " toothpick dose " which is

what it says, the amount you can get on the end of a toothpick. You

increase at whatever rate works without causing too much grief. I

will be taking another week or so of Diflucan in order to have proper

overlap until I reach the full dose of Nystatin but I don't mind

that. I think one would have to expect lots of die-off and misery

if you just jumped into full doses of Nystatin. I had Nystatin a

few decades ago and worked up from the toothpick doses then, too.

One other thought here: since Nystatin is rooting out the nastier

yeasties, perhaps that alone explains why some people feel Nystatin is so

harsh? I'm thinking that like any other die-off, if we keep it

controlled it will be a lot easier on us.

Yolanda,

I should have reversed the order of the drugs I mentioned. I think it

is Nystatin first then the diflucan. Whichever way it is, though the

pattern is the same -- mild drug first then slowly build the stronger

one.

Amelia

[Guest guest]

,Thanks for the clarification! I want to keep these things in mind in case they need to be done for DH in the future (or possibly myself -- long sad story with Mitral Valve Prolapse, dentists, and antibiotics!).AmeliaTo: BTVC-SCD Sent: Sun, February 28, 2010 4:29:52

PMSubject: Re: Nystatin Experience... good or bad

No, Amelia, you had it right in the first place. I'm in the middle of

this double course right now. Diflucan first for a month. Then

Nystatin. I asked my doctor why the switch, did Diflucan lose it's

effectiveness after a month? He said no, they work differently. Diflucan

"surrounds and escorts the yeast out of the body" and thus is

usually pretty mild. It works on the easy to get yeasties. Then

after it has done the job, Nystatin comes in to mop up the harder to

find, harder to kill ones. Nystatin does kill them, so it can cause

die-off.

Now, I was scared to death to take the Diflucan but i have to say, this

is the first medicine in my life (except replacement things like thyroid)

that I have ever tolerated well and even liked. Really, no problems

(though I started with a quarter dose and worked up just in case).

Diflucan is my friend! After about a week I started feeling markedly

better. At the end of three weeks I started sneaking into the

Nystatin. You start literally with a "toothpick dose" which is

what it says, the amount you can get on the end of a toothpick. You

increase at whatever rate works without causing too much grief. I

will be taking another week or so of Diflucan in order to have proper

overlap until I reach the full dose of Nystatin but I don't mind

that. I think one would have to expect lots of die-off and misery

if you just jumped into full doses of Nystatin. I had Nystatin a

few decades ago and worked up from the toothpick doses then, too.

One other thought here: since Nystatin is rooting out the nastier

yeasties, perhaps that alone explains why some people feel Nystatin is so

harsh? I'm thinking that like any other die-off, if we keep it

controlled it will be a lot easier on us.

Yolanda,

I should have reversed the order of the drugs I mentioned. I think it

is Nystatin first then the diflucan. Whichever way it is, though the

pattern is the same -- mild drug first then slowly build the stronger

one.

Amelia

[Guest guest]

Kim,

Very good points. We are all different and we don't always know our

weak points. It IS another reason to go very slowly with these

things and it's certainly why I fought the doctor on doing this. But I

finally had to admit that the natural things were not helping much and a

jump-start could be helpful. Of course I was primed and ready to drop the

whole thing if I had to. I am glad it's working out though the

Nystatin is not as easy as the Diflucan. But that's me. Many many

other meds that other people tolerate just fine have me reeling in horror

at the thought, knowing what most drugs do to me.

And yes, a very good point that we shouldn't be doing anti-fungals very

often, any more than antibiotics.

I hope you have good luck with your garlic. I know I'd hate to be done

out of my garlic as a seasoning, at least!

From what I have discovered in my research on antifungals, they can

disrupt

the beneficial bacterial colonies in a significant way. Antifungals

may

target the fungal microorganisms, but can impact the bacterial

microorganisms enough to make a difference to our digestion. And then

there

is the immune system response, the overload of toxins on the liver ..

So

antifungals impact some folks just as badly as antibiotics do. I've

come

across some real horror stories of patients who had their entire

digestive

tract " burned out " from prolonged use of both Nystatin or

Diflucan

Some people do fine with Nystatin or Diflucan, or one or more of the

natural

antifungals. Some people do not, and/or discover that the antifungals

cause

as many or more problems than an antiobiotic.

All depends on the individual. So start " low and slow " and

use caution.

Probably also a good idea to not take an antifungal frequently, and

to vary

the types.

And don't forget you can use food choices alone to help get candida

under

control. Just takes time and patience. I had a severe reaction to my

first

and only dose of Diflucan, ended up in the ER. That was over six

years ago.

My body still won't tolerate any natural antifungals as a result, not

that

I've tried anything but garlic.. And I am not using it as an

antifungal,

just as a seasoning [sigh]. But my immune system remembers.

Kim M.