NAC did something bad to me -- please help

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Reposting from introductions given the time-sensitive state I'm in.

I had a bone infection in October and was administered 7 antibiotics, one of which was levaquin. I got badly floxed with pretty much every symptom in the book. Tendon pain everywhere (neck, ribs, spine, knees, feet, wrists, etc), brain fog, anxiety, insomnia, PVD in left eye, snapping and cracking of joints.

Speculatively based on the limited literature, I tried chelating any remaining fluoroquinolones out of my body using Magnesium, as well with a protective regime of NAC, Glycine, Hyaluronic Acid, and Glucosamine Chondroiton.

I felt great on the NAC and didn’t mind the occasional side effects as I assumed they were not longterm. For about a week, my flox symptoms rotated and seemed to improve somewhat. Then one night I decided to have a hot bath.

The next day, I had no more tendon pain. I thought this was a miracle. However, I was also itching all over my body, an unfamiliar feeling. The next four nights I continued to have hot baths, thinking I might be somehow curing my floxing.

After 9 days of NAC, I found the research that connects it to the inhibition of the DAO enzyme, and elevated histamine. I immediately discontinued the NAC and switched to liposomal glutathione.

However, in the week since then, my symptoms have only gotten worse. The itching arises immediately after consuming food — ALL food. I have tried, individually, organic potato, sweet potato, yellow squash, butternut squash, white rice, brown rice, chicken, cantaloupe, apple, cucumber, etc. Every single one of these foods makes me itch, congest, and my throat has even started to narrow somewhat, which is terrifying.

I’ve also had terrible insomnia, weird eye artifacts (like small hallucinations almost), constant tachycardia, and major GI problems (normal stool, then diarrhea) that make what the 7 antibiotics did to me look pretty good.

Today I discontinued the liposomal glutathione and I’m currently eating this, because everything makes me itch anyway. I hope it’s not a mistake in terms of vitamins etc.

https://www.katefarms.com/for-clinicians/products/peptide-1-5-plain-formula/

It seems like NAC gave me a terrible histamine intolerance and possibly more? Given that I can’t eat without reactions that sometimes verge on anaphalaxis, I am pretty scared.

I’m not very literate in supplements. It seems like the folks here have wisdom about this kind of thing. Any thoughts on what I should do?
 

Victronix

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I've avoided NAC because Fredd had talked about it messing up B-12, I believe, so I don't have any answers (one question is whether you got the vaccine - I've known people that have had spontaneous anaphalaxis reactions that they never had in their life before, after the vaccine). But it's likely that many antibiotics could cause havoc in general. When I had a hives type reaction to a sulfa antibiotic that I took for 10 days I was told by a nurse to keep drinking dilute tea, not caffeinated, for several days, to clear it from my system.

Right now, in general, the food that is most helpful to me is bone broth. It is supposed to be helpful for the gut. It gives me energy in general. I would also try some probiotic drinks (lowest sugar) or supplements. You don't want to do too much liquid if you can't eat anything, so something like bone broth at least is some of both.

So sorry you're having to go through this!
 
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thank you for the well wishes and your advice! i will try the dilute tea. all food seems to cause tachycardia.

i did get the vaccine. that being said, the fluoroquinolones seem to have all these MCAS type effects, and many FQAD folks end up with autoimmune or mast cell stuff in the long run. so it might be as simple as whatever the FQs did to me interacting with the NAC's histamine inhibition.
 
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*histamine enhancement due to DAO inhibition, I should say. no sleep last night

no other pharmaceuticals currently, but eyeing cromolyn or ketitofen.
 

Victronix

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Wow, I was unaware of FQAD... I knew about the disaster of Cipro from when the postal workers were forced to take it after the anthrax events a couple of decades ago. There were class action lawsuits. Later, Cipro was pushed on me by Kaiser so intensely that I finally claimed I had an allergy to it, just to avoid it. Why on earth are they pushing these drugs on people! Unbelievable.

DAO inhibition and histamine, also not aware of that. Well, if you can get people's attention on here, this is a good place for advice. Are there other forums or social media groups you are using?
 
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Cipro is also tangled up in other 'mysterious illnesses' like Gulf War Syndrome and FM.

Good for you claiming an allergy -- I truly wish I would have done the same.

I'm on reddit but otherwise don't really know where to go. This community is incredible which is why I joined. I've seen more useful info about drug side effects here than almost anyone else. Hoping I can secure some of the communal wisdom for my peculiar case.
 

Pyrrhus

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After 9 days of NAC, I found the research that connects it to the inhibition of the DAO enzyme, and elevated histamine. I immediately discontinued the NAC and switched to liposomal glutathione.

However, in the week since then, my symptoms have only gotten worse.
I wouldn't get hung up on blaming NAC or glutathione directly, as many people find that restoring glutathione levels with NAC simply exposes an underlying pre-existing condition, and discontinuing the NAC/glutathione has no effect.

I've avoided NAC because Fredd had talked about it messing up B-12
That's an unfortunate misconception. This discussion talks about how NAC can improve B12 utilization, not interfere with it:

The plausibility of NAC inducing b12 deficiency or 'methyl-trap'
https://forums.phoenixrising.me/thr...inducing-b12-deficiency-or-methyl-trap.79380/
 

Judee

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Sorry you're going through all that. :(

Also look into sulfur/thiol sensitivity. Some of us have a hard time clearing sulfur/thiols in the liver. It may be that that pathway is clogged in yours and maybe slowing down other liver detoxing as well. (Just an uneducated guess.)

I would try artichoke to help clear the liver. Not milk thistle though as it's another sulfur/thiol. (Warning on the artichoke bottle says not to take it if you have gallstones though.)
 

nerd

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Do you know that you have a DAO deficiency or dysfunction? I'd say that histamine isn't a key issue with ME, more a side effect of unstable mast cells and a dysregulated immune system. I'm quite positive that NAC can not cause histamine intolerance.

The overall effect of NAC on DAO is limited when compared to other drugs. Even Thiamine has an effect but does it mean that it causes issues when taken for compensating a deficiency? In the worst case, NAC could have enhanced a pre-existing histamine intolerance mildly. Antibiotics, on the other end, can interact to a greater degree with many metabolic mechanisms. The lasting effects on the gut microbiota are well known.

Even with DAO inhibited, you still have HNMT to degrade histamine. But HNMT depends on a working methylation cycle. HNMT dysfunction can also be genetically inhibited, just as DAO dysfunction. For real issues, both enzymes would have to be inhibited or DAO would have to be completely dysfunctional.

Also worth considering are potential indirect positive interactions with histamine pathways, which normally aren't reflected in studies that only look for direct interactions.

I have a genetic DAO limitation but I have made only positive experiences with NAC, even in high doses. In one of my first tests done, cysteine levels were about a tenth of the minimum reference. But this is just my case and it might be different for you.

I've also made strange experiences with hot and cold baths. I also had a short phase some years ago when I thought that hot baths might help me long-term. From today's perspective, I'd say that lukewarm baths allow me to wake up earlier and more recovered the next day. Hot baths can help me relax and sleep deeper but also disrupt my gastrointestinal system. Unfortunately, deep sleep doesn't translate into better sleep in my case, rather the opposite, which I notice the next morning. My skin doesn't like hot water either and eventually gets irritated from it. Cold baths are the worst, but this might just be due to my PTSD - cold water triggers it.

There are many explanations for why bathing temperature might be relevant. Parasympathetic activation might be one of the obvious ones. But I'm particularly interested in transient receptor potential melastatin (TRPMs). They link the immune system, NK function for example, and the endothelial pathology that Wirth, Scheibenbogen, and others have associated with ME. Temperature awareness and control might be more important than anticipated. But this is all I can say for now.

Back to your problem. "Real" histamine intolerance doesn't develop just like that because it's genetic. NAC could only enhance a HIT that is "pushed to the surface" by an infection or food intoxication that bring the immune system or metabolism completely out of balance. Mast cell activation syndrome (MCAS) can develop just like that and NAC most likely won't be the trigger for it either. If histamine really is the issue, antihistamines would quickly provide relief. If it's MCAS, only a few antihistamines might help in the long-term, or cause more trouble by their sedative side effect. I knew a person with HIT and she'd use Vitamin C a lot during histamine episodes. Certain deficiencies, like ones that affect methylation, can also cause HIT-like issues.

I hope you can identify what causes your issues. I've also been in the situation speculating that HIT or MCAS might be the only issue I have and that my loss of consciousness would be anaphylaxis. Later, it turned out false. But I have an atypical mite allergy. So I might be biased by this experience. But I feel your struggle going through this. I hope you can find the patience and resilience for seeing it through.
 
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Azayliah

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The itching arises immediately after consuming food — ALL food. I have tried, individually, organic potato, sweet potato, yellow squash, butternut squash, white rice, brown rice, chicken, cantaloupe, apple, cucumber, etc. Every single one of these foods makes me itch, congest, and my throat has even started to narrow somewhat, which is terrifying.
It seems unlikely to be this, but have you made sure it's not something that the foods are all coming in contact with? For example, a specific set of seasonings or salt, a countertop (bacteria, cleaners) or the air in your home (dust, mold), the bag(s) used when picking up groceries (personal bags or those from the grocery store). Your hands or those of the person preparing your food (lotions, soaps). Utensils and plates (dishwasher soap). Is it just food--do drinks cause this too? Water?
 
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lenora

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Hello......Welcome to PR.
Allergies are an odd thing. It seems that you start with one, and before you know it, your allergic to everything around you. This happened to me after I had outbreaks of shingles (miserable). I was bedridden for almost a year and couldn't even wash my hair unless it was with a very mild soap like Ivory....and I used that for months on every part of my body. Clean towels each day, my husband did my laundry in Ivory and little by little I did recover. Throw away the dryer sheets...they often make things even worse.

Even though I had no appetite, I did make myself eat the bone broth and drink electrolyte fluids...or for some calories, a vanilla/choc. drink or the like. I started this off with a l/4 bottle at a time and worked up from there.
Antihistamines may help, I couldn't say....I can't even tell you if I found them helpful in my case. I do have to use epi-pens so always have them on hand. Sometimes at least 2, if not 3 are taken before swelling goes down and I can breathe again. I've never figured out what the exact allergen is. I think my body was, like yours, just on overload.

Start things slowly, good idea about tea if you're able to keep it down. An herbal one may be best, but you'll find out what is best for your body. Just make sure to watch your electrolytes. You could also try a bite or two of a banana, I hope you recover some of your health soon. Yours, Lenora.
 
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godlovesatrier

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Just wanted to say I take 3g NAC per day without any issue. Is it worth checking what brand you bought to see if there was something dodgy in it?

As for the allergies you probably did have a reaction to something which set them off. For example I took some lumbroniskase a few weeks ago and I had a red burn (allergy) patch blow up on my lip. Strangely only in one spot. Anyway I had other symptoms which correlated with allergies. So it's not impossible but I just don't see how the NAC would do it, could be a bad source maybe.
 
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I had a VERY, VERY negative experience with NAC. I took it before I started methylation work. Even the tiniest dose (splitting the capsule open and dipping my finger in) caused a huge reaction. The only way I can describe it is it felt like I was dying. The same month I took it I also experienced an excruciating menstrual cramp on the first day of my period that I had to be taken to hospital. Interestingly I do not have any sort of reaction to glutathione I've tried it multiple times from the most expensive brands and I don't feel anything good or bad.

Methylation did cause huge detox reactions in me when I later started so I wondered if it was connected to being severely undermethylated and the NAC caused the mother of all detox reactions. Now I have my methylation on track I have thought about trying it again but im cautious of the side effects.

Worth noting I have a CBS mutation (-/+) but its the lesser one which isn't really thought to cause a problem in the same way as the other one.
 

lenora

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Hello @ezma24...Yes, that's often the problem with us, we're definitely not a one size fits all type of illness. Just take things at your own pace, if you feel that it's not helping, stop (as you did) and restart at lower dose. If that doesn't work....then it goes elsewhere. (Like the trash, with the pills emptied.)

Like so many groups before us, a lot of experimentation is done. I admire those of you who do it (I'm way past it now), but only hope that you're wise in what your body is telling you to do. Personally, I wish you well and would love to see you make some progress with your health's status. Yours, Lenora. .
 

Critterina

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NAC and glutathione are very problematic for me - lots of symptoms including 7-9 lbs weight gain (inflammation) that resolves when I stop. Teh glutathione may have led to pitting edema that lasted several weeks.
My diagnoses include histamine intolerance and mast cell activation syndrome, which I have a hard time distinguishing most of the time. After 6 years of avoiding dietary histamine and taking normal doses of H1 blockers, to no avail, I was diagnosed with MCAS.
My mast cell protocol includes H1 and H2 blockers and mast cell stabilizers, along with digestive enzymes and inflammation reducers. What works for each individual varies greatly, but know that the doses are sometimes greater for MCAS than the normal doses.
I have a good response to Xyzal 5 mg, breakfast & bed, Pepcid, 20 mg, breakfast & bed, Rx:ZenPep (extended release digestive enzymes) with each meal, Rx:Ketotifen 2 mg with each meal, Palmitoylethanolamide 400 mg with each meal. I used cromolyn sodium (aq) before each mean and bed for a while, but I don't seem to need it (or to use it correctly) most of the time. I am on a low histamine diet - for 9 years now - but most 'low-histamine' recipes have WAY TOO MUCH histamine for me to tolerate. The only way to get your list is by an elimination diet.

With the skin itching, you might want to get checked for mastocytosis. Check out The Mastocytosis Society.

Good luck. This is a socially-limiting condition for sure, plus you feel yucky for a long time until you get stuff under control - and even then, you make mistakes, or ingredients change in your safe foods, or your sensitivities change.
 

Pyrrhus

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I had a VERY, VERY negative experience with NAC.
It's quite common to get these intolerable start-up symptoms when starting NAC. For me, these horrible symptoms lasted about 8-12 weeks after starting NAC. For more, see:

Glutathione causing anxiety/irritability
https://forums.phoenixrising.me/threads/glutathione-causing-anxiety-irritability.81246/

Now I have my methylation on track I have thought about trying it again but im cautious of the side effects.
Here's how I personally dealt with the start-up effects of NAC:
The first dose I took caused symptoms lasting a week. When the symptoms started to subside, I took the next dose. I had to gradually increase the dose by taking only one dose in the first week (on Monday), two doses in the second week (Monday and Friday), three doses in the third week, etc. Even after I was able to tolerate it daily, it took a couple more weeks for the symptoms to subside and to start seeing the real benefits.

Hope this helps!
 
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It's quite common to get these intolerable start-up symptoms when starting NAC. For me, these horrible symptoms lasted about 8-12 weeks after starting NAC. For more, see:

Glutathione causing anxiety/irritability
https://forums.phoenixrising.me/threads/glutathione-causing-anxiety-irritability.81246/



Here's how I personally dealt with the start-up effects of NAC:



Hope this helps!
Any thoughts as to why I can tolerate glutathione no problem and seem to have okay levels when testing? I assumed if I had a problem with NAC I would also not be able to tolerate glutathione.

How you handled your NAC detox reaction was similar to how I went about the reaction I was getting from folate and b12.
 

Pyrrhus

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Any thoughts as to why I can tolerate glutathione no problem and seem to have okay levels when testing?
There has been very little research into liposomal glutathione. We still can't say for sure whether it actually succeeds in raising intracellular glutathione levels, so I couldn't speculate about your reaction to glutathione.

As for testing intracellular glutathione, I wasn't aware that there were any reliable tests, apart from Magnetic Resonance Spectroscopy (MRS) of the brain:
https://forums.phoenixrising.me/thr...-study-at-7-tesla-godlewska-et-al-2021.85779/

Hope this helps.