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Nystatin - Herxing or what? HELP!!!!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by dsdmom, Jun 30, 2010.

  1. dsdmom

    dsdmom Senior Member

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    I recently started nystatin for candida - haven't even been @ the whole dose for 1 week (1/4 tsp. powder 4x day). When I first started it I noticed I would get these feelings of anxiety or fight or flight about an hour after taking it. That seemed to get a bit better and I upped the dose. But now I'm feeling HORRIBLE and am not sure if it's the nystatin or the ldn I started or what and hope someone here has some experience with this.

    The last few days I've been more achy - I can chalk that up to the nystatin. But now my tachycardia on standing is horrible and I feel like my bp is lower than normal - basically my autonomic symptoms are much worse and I just feel horrible. I am so worried that I am doing some damage and will have a set back. Of course I need to consult with my dr but am just curious what you all think - do I stop and see if I improve, do I lower the dose or do I push through? I dropped the dose today on my second dose to 1/8 tsp but still feeling awful. I'm leaning towards stopping altogether because I hate this feeling and it scares me. Any thoughts?

    ETA: Last summer I tried taking MSM and had a very similar reaction. Rich van K explained how this could be from a block in my methylation pathway and my subsequent reaction to sulfates(?). Anyway, I just realized my reaction was very similar so wondered if there could be some sort of similar thing going on with nystatin. Rich van K - any input?
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The doc who prescribed nystatin for me said that your reaction to it was almost "a diagnostic" for candida. He had a lot of experience with it. I DID get major die off--horrible--and he told me to back off to a level where I didn't get more than a tiny amount of die-off, then very slowly increase the dose. Course different docs may do things in different ways, but this seemed to work. He did not advise pushing through as it is too taxing on the body.

    I think that in the state you are now, he would have said to stop till your reaction goes away and then start again....slowly. BTW, did you know that nystatin is made from the soil in New York State = NY-STAT-IN!

    Sushi
  3. Dainty

    Dainty Senior Member

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    I second that, and personally recommend you quit altogether and start again at a later date on a lower dosage. It doesn't matter if you're herxing, detoxing, experiencing a rare side effect or are allergic....if you're suddenly feeling very ill on starting a new medication and you're concerned, take the safe route and cut it out for a bit.

    Taking Nystatin for candida always causes a detox reaction for me.....abdominal pain and swelling and generalized feeling more fatigued and under the weather. I always find it important when starting up again to begin at a low dosage and work my way up so that I don't become too ill from it. HOWEVER, again, I strongly urge you to stop for now. What if your increase of symptoms is from some other factor completely unrelated to the Nystatin? Then you would only discover that after ceasing Nystatin and finding that you don't improve.

    I know it's frustrating to stop and go with questionably tolerable medications, but with our extreme sensitivities it really is the safest approach. I wish you the best!
  4. dsdmom

    dsdmom Senior Member

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    Thanks Sushi and Dainty -
    I think you're right. I need to figure out what is causing this and if I don't get off the Nystatin I won't know. I suppose this could mean I definitely have a candida issue that needs to be addressed but it could also be something else. However, I did take some charcoal and I feel better - it took a while but I do feel better now. I don't understand how that works since the charcoal is absorbing what's in the gut and it affected my nervous system but whatever...

    Sushi - you made me laugh too about the origin of the name!

    So I am going to stop it and wait to talk to the doc. but right now I want to also concentrate on upping my ldn and I can't do that when I'm having a weird reaction to something because then I won't know what's what....

    When you say you crept up on the dosage slowly, how long did it take you to get to the full dose?
  5. Forbin

    Forbin Forbin

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    When I first went on Nystatin in 1986, I did not have a strong reaction to it. However, I started by taking a lot less than you are taking. I was working off of the recommendatons found in the book The Yeast Syndrome by John Parks Trowbridge and Morton Walker (Page 130). That book can still be found on Amazon.

    I believe that, because I seemed to be rather sensitive to most drugs, I started out taking 1/8 of a teaspoonful (make sure you're not using a tablespoon!) of Nystatin mixed in a glass of water (it doesnt mix very well) twice a day. The book recommended that dosage 4 times a day and gradually increasing it at 1-2week intervals to a maximum of either or teaspoonful 4 times a day. I don't think I ever took more than of a teaspoon twice a day, however.

    So, according to that book, at least, you seem to have started out at near the maximum dosage. You might want to consult with your doctor about cutting back or stopping to see if that helps. He can always have you start again later at a lower dose.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    Not sure if the question was for me or not and whether it was re: ldn or nystatin! If it was nystatin, I don't remember. If it was ldn, it took me about 4 months--but I was very cautious--waiting until I was very stable on a dose, then a week more, then upped it by .5 mg.

    Sushi
  7. dsdmom

    dsdmom Senior Member

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    Forbin, I started at a very low dose but probably built up too quickly.

    Sushi - I was asking about nystatin but am glad you also answered about ldn :) I am still having sleeping issues and it's been 8 nights. I have started wondering if the nystatin is playing a role in the sleeping issue too. I want to up the LDN but guess I should let my sleep get back to normal first. It just sucks because I'm only at .1mg so if I go up .1mg it's going to take me FOREVER to raise my dose and I feel like I am never going to sleep well again!
  8. Athene

    Athene Never give up

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    Hi DSD Mom,

    I am doing the same treatment . It's been 8 days now. I was getting palpitations, very severe orthostatic intolerance, migraines and extreme bloating and abdominal pain from my excessive candida infection.

    I got the same herx reaction you describe. I am certain it is a herx rather than an adverse drug reaction because nystatin is active in the gut only, hardly absorbed systemically, and candida is well known to have this die off effect. It releases huge volumes of toxins as it dies.

    PLEASE PUSH THROUGH THIS AND KEEP GOING.
    Otherwise you will just have to start the whole hideous experience again next time you try.

    Don't bother tinkering with lower doses because you will simply make the candida develop drug resistance. You don't want to make your candida a bit annoyed or feel rather poorly, you want to kill it completely.

    I am starting to notice a slight improvement after 8 days so I know the herx reaction is ending. People on this site often talk about herxing periodically after months of treatment but if you talk to the doctor he will explain that herx reactions are not like this They start fast and furious and taper, then stop.

    The bet relief I have had is from drinking huge amounts of water, to flush the toxins out more rapidly, cutting out carbohydrate foods which feed the candida.

    Good lcuk, stick to it. Having severe candida is terrible and needs to be dealt with as it is immunosuppressive and allows lots of co-infections to thrive.
  9. Rockt

    Rockt Senior Member

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    Can candida/yeast be THE problem? What I mean is, does anyone ever become well/cured from treating/eliminating yeast? It seems to be a devastating problem and so many of us have it. I've been attacking mine since just before Christmas, (Diflucan, most of the natural rememdies, eliminating sugars, etc.), and have gained some physical energy and a bit of exercise tolerance, however my cognative difficulties, (BRAIN FOG!!, poor concentration, mental faitgue), are still with me.

    Does anyone have experience with Bee's recommendations?:

    http://www.healingnaturallybybee.com/

    She seems to think that yeast IS the problem, and even if it isn't, following her diet, etc., will cure you. What do you think?
  10. dsdmom

    dsdmom Senior Member

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    Hi Rockt, I personally do not think it is THE problem. It's my theory that if my immune system is down or dysfunctional, then it allows other things to happen that shouldn't...such as all the viruses that are found in us, etc.

    I've taken a couple days off of nystatin...and my dr told me that he wants me dropping to 1/8 tsp 2x day and then trying to add a third one in at 1/8 tsp. but he also thinks it's more important for me to get up on my dose of ldn so we need to concentrate on that.
  11. Rockt

    Rockt Senior Member

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    I think you're likely right about the dysfunctional immune system. In my case though, I went to Dr. Lerner, who is pretty good at detecting pathogens, and I don't have anything, even after double-checking ($$). I know Lyme can give false negatives frequently, but I'm not nearly as sick as most people with Lyme and, as I mentioned, have seen quite a bit of physical improvement treating yeast. So I don't know - guess I'll just keep attacking the yeast issue, but as to which protocol, "raw paleo", "Bee", etc., etc., etc., how the heck do you know what's right?
  12. Forbin

    Forbin Forbin

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    My guess at the moment is that anything that keeps the immune system chronically activated plays a part in perpetuating CFS - possibly by interfering with the immune system's ability to suppress XMRV. XMRV, in turn, may itself be interfering with the immune systems ability to suppress co-pathogens such as other viruses, bacteria, yeast, etc., so it becomes a vicious cycle. It might be that if you can supress all of your co-pathogens simultaneously then the immune system may have the wherewithal to be able to suppress XMRV into latency and break the cycle. If you treat the co-pathogens one at a time, the remaining ones may keep the cycle going (which may eventually lead to the re-activation of the one you treated). Treating yeast alone might break the cycle, if it happens to be your only significant co-pathogen.

    Just my guess.
  13. taniaaust1

    taniaaust1 Senior Member

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    I did the Nystatin thing for 1-2 mths.. doctor gave me capsules of it. I cant remember now what the dosage was but it didnt do a thing in my case (except stop me from getting thrush as i was on antibiotics when i first started taking it).

    Before that i tried a good quality Olive leaf extract for 3-5mths, that kills Candida (it's antifungal, antibacterial and antiviral). Olive leaf extract is an antioxident and also has free radical scavenging properties. I cant remember if i herxed with the Olive leaf extract or not but it did have me feeling very slightly weller so obviously did do something (but after a while i platued). So i suggest to try this in little amounts if anyone has too much issues with Nystatin.

    The olive leaf extract and antibiotics.. got rid of staph and strep infections i had.
  14. alice1

    alice1 Senior Member

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    my naturopath doc recommened 'castor bean oil' it comes in caps.i started with 1 3xdaily and did that for a few weeks then upped it to 2 3x daily then eventually 3 3x daily.i had no die-off and i think it's something one can take everyday until you're ready to hit the harder stuff if you need to.
    not too many people know about this approach but it's great for parasites and candida.
  15. Rockt

    Rockt Senior Member

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    Alice1, do you think the castor bean oil helped? Did you experience a reduction of symptoms?
  16. alice1

    alice1 Senior Member

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    yes i did..i have to start up again because i eat so much fruit during the summer.i also think taking it for long periods of time is fine because it helps keep the candida at a lower level especially when you want to start eating some carbs like fruit.
    i can't stay on a carb free diet forever and i think with our immunes it's just a stupid cycle so keeping it at least lower is the answer for me.
  17. powertool4

    powertool4

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    Id like to chime in here. I can't say for 100% to the OP if it is the Nystatin but that is CLASSIC reaction of someone who is infested with yeast. I don't use candida/yeast/fungus lightly because A) no one (including alternative doctors) take it seriously because of the fact that it is overdiagnosed B) everyone has different levels of candida and believes that it is their main problem. But in my case, i recently found out i have yeast in my small intestine (that was not detectable by stool sample) and have found that antifungals that work will literally give me panic within an hour (usually around the time it hits the small intestine and starts to kill candida and releases toxins (acetaldehyde). I get panic, heart palpitations upon standing and weird blood pressure fluctuation, get really really lethargic (which is weird because at my regular state i am usually "wired but tired" and unable to relax my nervous system) and also sleepy. My head feels so fogged up, i feel toxic and feel weak and dizzy and that of course triggers panic which is nothing really but the body's alarm system telling you something's up.

    Nystatin works for some but I have not used it yet even though my doc gave me a prescription for 500,000 units, 3 times a day for a month because the die off would literally kill me. Other fungals that have been extremely strong to the point where I know it works is garlic and candex. Garlic has so many different compounds that are antifungal that candida usually has a very hard time adjusting to all its components, much like rotating or combining antibiotics against strong bacteria. Much like any form of life on earth, the ability to adapt is usually compromised when bombarded with multiple attacks as opposed to one mechanism like nystatin which has a very specific way of killing yeast (i believe its to creatine a barrier around yeast cells so they essentially starve but i'm not 100% at the moment). And candex (normal dose is 2 pills X TWICE a day, I took 1/4 of ONE capsule in water) does the same thing to me. GSE (grapefruit seed extract) does this as well and at first I thought I was having a bad reaction to phenols or something but it was the die off that occurred.


    I guess the question is should you continue to push. And only you can know that. I really think that id be unfunctional and creating way too much liver and tissue damage by creating die off but in order for the constant acetaldehyde poisoning to stop, i need to kill the yeast. vicious cycle.. currently I'm waiting on a genetics profile to check for mutations in my liver enzymes to see which ones need help and which ones are missing, etc. and perhaps that will shed some light on how to detox better.

    Also, aside from genetics testing, candida/fungus creates ethanol as a byproduct of consuming simple sugars. Everyone knows this. But what happens once people who have this infestation eats, is that ethanol is drawn into the bloodstream which causes symptoms of being drunk, brain fog and so forth. The normal metabolism of ethanol is that it is converted into acetaldehyde (which is 1030X more toxic to the body than ethanol itself, same family as formaldehyde and we all know how bad formaldehyde is) and then acetaldehyde is converted into acetate/acetic acid by an enzyme called acetaldehyde dehydrogenase/oxidase. Acetic acid can be used in the kreb cycle for energy as well since it is converted into coenzyme A (also used for hormones and adrenal health. reason for b5 supplementation with adrenal issues).

    The problem with candida is TWO FOLD:
    One, you're being constantly poisoned from the inside out with ethanol on a daily basis. Tissue damage ,symptoms of those suffering from long term candida are similar to alcoholics. And it is due to the acetaldehyde build up (which will be described below). Ethanol by the way, damages the mucous membrane in the gut and causes irritation. (also called glutamine rebound which is why you feel like crap after drinking) and constant release of ethanol first destroys the gut lining causing leaky gut.

    Two, the toxic build up of acetaldehyde is the main reasons (known to date) for candida symptoms sufferers. Acetaldehyde is SO toxic to your body and cells, it blocks and binds (also known as cross-links) with coenzyme A, nerve cells, etc. and destroys your cells. Normally the liver reduces acetaldehyde to acetic acid (vinegar) with that particular enzyme and here is where the problem lies. First, the body is overwhelmed with constant acetaldehyde. So there is more coming in than going out, eventually leading to liver exhaustion, non alcoholic fatty liver, detoxification problems (which also leads to buildup of OTHER toxins that would normally be excreted out but cant be now because of an overwhelmed liver and glutathione and sulfur depletion). Basically at this point, the rain barrel that was collecting drops of toxins is overflowing and isn't draining the toxins out as fast as its coming in. Hence, system shutdown.
    The gene ALDH2 is the main gene that determines enzyme productivity of breaking down acetaldehyde > acetic acid and those that are homozygous wild type have no mutation and have no problem processing acetaldehyde (normally, such as drinking alcohol). They are more prone to being alcoholics for this reason but less prone for liver and organ damage. Those who are heterozygous have decreased enzymatic activity (not as fast and full as homozygous wildtype) and it is unclear how much enzymatic activity is going on so if you are heterozygous you still lack the enzymes because it can be anywhere from 10% to 70% or something in between 0-100%. Homozygous mutations however, means you have veryl little to none enzymatic activity when it comes to your body's ability to detox acetaldehyde into acetic acid. These people turn very flush when they drink any form of alcohol, get extremely sick (the far eastern population such as Chinese, japanese, have the highest % of those with this mutation. reason is unclear) and are less prone to being alcoholics but more prone to liver damage and organ damage. So you can imagine, if you are a homozygous mutation or even heterozygous, even if you don't drink alcohol you are much more susceptible to organ and tissue damage and overall systemic toxicity than those who can clear this toxin out faster.

    Aside from genetics, nutritional status also affects the enzymatic activity of acetaldehyde breakdown. Taking NAC has been known to mop up and bind acetaldehyde so it does not cross link and combine with other cells. other b vitamins such as b1 and b2 are important in this process as well as mg, Zn. And of course molybdenum (but it is a trace mineral so dont overdo it) which is a crucial trace mineral in enzymatic activity of sulfur and acetaldehyde breakdown enzymes.

    My situation is that i am extremely ill and recently I have pinpointed it to candida. Quite actually unbelievable and i still have a hard time believing that it can cause my body to not be able to even walk a few feet or take care of myself at such a young age but ever since discovering the concept of toxic buildup in the body and detoxification, it is much more clearer now. The stage that I am currently at is treatment, the vicious cycle described above as well as many others I'm sure. I am looking to optimize my liver and organs through vitamins and genetics testing in ANY way possible and also double teaming this matter with TCM herbals. If it will work, who knows.

    Hope this post helps someone in the future!
  18. alice1

    alice1 Senior Member

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    wow what a well of information you are..thanks.
    as far as nac i've read that it's not the best thing for people with cfs/me/ebv and i believe i read that on this site. as for liver support i take a liquid form that was made up for me with only herbs.may i ask if you're on a candida diet?
  19. powertool4

    powertool4

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    For me, I tested highly for many different food allergies and the constipation and lots of bloating went away after removing them. The bad is that I am IgG reactive to yeast, soy, dairy, (cheese, milk, whey), wheat, gluten, pretty much everything on the planet has those ingredients. and on top of that I am on a candida oriented diet but could probably do better with the carbs. I definitely feel worse and my adrenals take a huge hit when I eat sugar (fruit, etc) and I get blood sugar issues. they go hand in hand and as candida totaly messes with the blood sugar and energy utilization, it's still an issue. I still am trying to go in with antifungals at some points once I get some good liver support.

    May i ask what liquid you are taing for liver support? I got a sample of liverlife from bioray which is a company that makes things for autistic children and they have what appears to be quality ingredients as well as good feedback from the autism boards. but very pricey.

    Regarding NAC, I have heard and read both sides and also am a bit weary myself but everyone knows that CFS is not an universal disease. It is a syndrome, basically translating to "we don't know what the hell is going on but your body is tired all the time (and more)". that can be for a myriad of reasons and off the top of my head thre are many people with cfs that got started from mainly gut issues, leaky gut issues (As myself) and others who have methylations and detx problems, heavy metal issues, environmental toxicitiies, viral, and so forth. and the links that we see that are common in CFS patients ARE universal because that's frankly what happens in the human body when it's worn down. (glutathione depletion, tissue damage, mitochondrial damage, etc.)
    Many people benefit from NAC and it appears to be the majority. Reading iherb reviews and other accounts on many different forums for healthy individuals, NAC seems to work great. (healthy individuals also however are not "awake", in that most do not even notice major changes in their body so side effects could be underreported. But in general i have heard great thigns about NAC being able to detox acetaldehyde, feeling better, detoxifying faster, and so forth. I also have read accounts of people that have taken it for a few weeks or even a year and then started to get weird heart issues that away when stopped.

    There were studies done on mice that said that NAC was converted into SNOAC and it caused PAH (which causes your pulmonary arteries to tighten because your body thinks you have low oxygen) and caused swelling of the rightside of the heart. This is scary but 3 things to consider is that, mice are given way higher doses that humans would normally take. Also, they were given IV and not orally so generally bypasses the gut and liver. And of course, mice are different than humans. And also I have read on this board that glutathione precursors may shut down the body's own production of glutathione and that's why there is such a strong focus on methylation. I am not sure exactly how true this is but as of yet, I am not thinking so. IF you have a methylation block, i feel that it is imperative to unblock it. But in my case i do not have a methyulation block and have had the worst experiences of my life on b12 and folate. And because NAC is cysteine and sulfur, i dont see how introducing sulfur when you are sulfur depleted, or cysteine when you are glutathione depleted (and low cysteine) will hurt since your body isn't producing glutathione on its own ANYWAY! :)

    My overall philosophy on supplements are that everything in moderation.

    I would love to know what that liver liquid is and if you have a link that'd be great!
  20. alice1

    alice1 Senior Member

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    my pleasure powertool4,
    the naturopath doc handed me a script which i took to an herbalist.the ingredients are dandelion root,artichoke,milk thistle seed and bupleurum(which is a chinese herb) it's in liquid form and i take 15 drops 3xdaily.if you can find such a store in your area you may want to try it,it's very gentle on the liver.
    there were no amounts listed for each one so i'm asumming they're equal parts.
    good luck!

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