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Nystatin for mold/yeast - it is killing me, need advice!

I’ve had ME for 14 years and my gut issues have gotten worse over the last few years. Some tests indicated that I may have mold/yeast issues going on in my gut. My doctor prescribe me liquid nice Nystatin because I have such a low tolerance to medications.
Initially I started three weeks ago building up slowly and felt OK. After five days I had major Herx reaction of taking 3 teaspoons per day so I cut back to about 1 teaspoon spread over a day And was not even tolerating that.
During the last week and a half I have literally been swapping it with a Q-tip and each time I think I’m doing OK with that amount after a couple days, I wake with severe flu like symptoms. Unfortunately my doctor hasn’t exactly been helpful in terms of advice. I am on the strict Candida diet but honestly don’t know if I should be taking Nystatin at any amount if it’s causing me to be this sick. I thought ME was bad LOL this is impossible. My doctor thinks I need to kill this yeast but I’m confused as to if this is a smart way to go. Any advice would be so greatly appreciated. If I’m not even tolerating one qtip swab a day, what Can I do?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Are there any possible ingredients in the Nystatin making you sick? Have you tried Diflucan? My doc had me on a rotation of both when I had a candida problem, along with an anti-candida diet.

Is it possible you might have mast cell activation syndrome? In which case, quercetin, claritin or allegra, zantac, ketotifen and curcumin might help you tolerate it better.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Thanks for the response! I tried diflican years ago and didn’t notice any symptom improvements. I seem unable to tolerate anything the last couple years.....
The treatment plan was a combination of the diet plus a rotation of Diflucan and Nystatin. Only one of these components by itself is unlikely to be effective.
A series of tests run through Genova diagnostics, called NutrEval that looks at levels for yeast and fungal.
The advice on the NutrEval if you test high for those chemicals is to follow up with a DanA stool test, like Genova GI Effects, DiagnosTechs GI Map, or the enhanced uBiome. You may have a parasite or sometjing else causing symptoms and confusing your reactions to treatment.
I have been tested for celiac and know I don’t have that, although am currently GF.
Cyrex Labs has the most thorough celiac testing - most standard tests can miss it.
How do you diagnose for MCAS?
Tests include:
  • Histamine
  • Tryptase
  • Chromagranin A
  • Prostaglandin D2
There are others. See attached for more info.
 

Attachments

  • Afrin Diagnosis and Treatment MCAS.pdf
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  • Afrin Drugs for MCAS.pdf
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nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Severe bloating, gas, on and off bouts of nausea, constipation, general malaise

Have you been seen by a gastroenterologist regarding these symptoms? Meanwhile, consider trying a low FODMAP diet as it may help with those GI symptoms.

A series of tests run through Genova diagnostics, called NutrEval that looks at levels for yeast and fungal.

I'm familiar with NutrEval. Here's my take: I'm very skeptical about your having any kind of fungal infection based on results from NutrEval. There are other things on NutrEval that are more relevant to SEID (aka, ME/CFS).
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Here's my take: I'm very skeptical about your having any kind of fungal infection based on results from NutrEval.
Having used the NutrEval and stool tests for 9 years, I've found high arabinose tends to correlate well with candida problems. The Great Plains GPL mycotoxin test is a good one for mold.

And I've found gastroenterologistss to be pretty useless for anything except diagnosing colon cancer, but functional medicine doctors for more useful for fixing gut problems and nutrient deficiencies/imbalances.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Oh, and I also did the GIeffects one and major thing was fecal fats high and some bacteria. I am on the low foodmap diet, but even stricter anti candida diet. I wonder if that is having a major affect? 3 weeks in.
Glad they found some bacteria...any especially good or bad ones jump out at the doctor? What did he/she recommend for the fats problem?

Are you taking digestive enzymes, probiotics, or probiotics? Ox bile?
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
My doctor prescribe me liquid nice Nystatin because I have such a low tolerance to medications.
The liquid nystatin I was prescribed had sugar :bang-head: in it--did yours? Nystatin is notoriously difficult to dose.
Are there any possible ingredients in the Nystatin making you sick? Have you tried Diflucan?
Diflucan also takes a lot of experience to dose. I had really good results from taking a fairly high dose for over a month.
Thanks for the response! I tried diflican years ago and didn’t notice any symptom improvements.
 
Have you tried supplementing with digestive enzymes and/or ox bile? Supplementing with psyllium husks powder and plenty of water may also help with your constipation.
Not yet, as I’ve had problems with tolerating digestive enzymes in the past. I will look into psyllium husks though, thanks!



Was this some kind of pathogenic bacteria? Or just imbalance of normally present bacteria?
Imbalance. The out of range ones weren’t massive either. I still can’t quite believe what a reaction it’s caused.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I had a terrible reaction to Nystatin. I felt poisoned, more weak, more fainting and all over pain with flu-like soreness. I had awful headaches.

My local ME group tried this after reading the Crook book (yes, he really was called that). No one improved and a few of us had severe reactions. I did have thrush problems. The Nystatin didn't even clear up my thrush. Awful stuff. I don't think it was a herx reaction.

What did work for me was Ketaconazole. I didn't have any so-called "Herx" and it cleared up the thrush.

No improvement to gut problems.

There was one report here on PR from someone who did have a major health improvement on Nystatin. However it does seem rare.

Can you see another doctor?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I have looked into and it fits, but need to research more. It could explain my intolerance to drugs. I will discuss it with my doctor next month when I see her who is an integrative holistic medicine doctor so at least she will know of it – hopefully. Do you find once this is treated other symptoms are improved?
Yes. Finding out I had it solved a whole bunch of weird little health mysteries, including my corn allergy that didn't show up on allergy tests though I react to all corn and corn derivatives.

You may find the attached case study interesting. I'm on almost the same protocol except for the SIBO.

My ME/CFS specialist says about half the patients he sees has it. I didn't think I had it, but he kept saying he suspected it, even though my tryptase and histamine were usually fine, but my prostaglandin D2 and Chromagranin A were high and being on the meds has helped.