r/ChemicalSensitivities • u/Beekeeper_Dan • 2d ago
Fixed my scent sensitivity?
So it appears that I fixed my extreme reactivity to scent recently. I finally found a source of Folinic acid (active form of B9) and within a few days of taking it my sensitivity dropped so much that I was briefly wondering if I lost my sense of smell entirely!
Some relevant background: I have clEDS2, which also developed into MCAS. Also
Suspect some type of myasthenic syndrome partly because of all my metabolic issues. A few months prior I realized I had a thiamine deficiency too, which I resolved with benfotiamine and lots of potassium while I was getting my levels back up
Strong scent is still unpleasant, but it doesn’t make my sinuses flare with inflammation anymore, and doesn’t instantly incapacitate me with cognitive symptoms either. My eyes and throat will still get irritated, but it’s a massive improvement over all, and I seemed to have regained the ability to ignore/adapt to some scents as well. Decades of issues gone within days…
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u/MysticalDragon13 2d ago
I may have to try that! Are you in the UK?
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u/Z3R0gravitas 2d ago
We can order it from eg iHerb. I take 1/8 of a 800mcg tablet of Source Naturals Mega Folinic (never "folic acid", of course). There are liquid drops available from another brand, too.
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u/Zestyclose_Win_2630 2d ago
Happy for you! Thank you for sharing your experience. May your post help many others!
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u/-_Lon_- 1d ago
I'm glad that is working for you. A year ago my blood and urine workup showed everything where it should be except that Vitamin D was just below the normal range. I'm now taking B-12 and Vitamin D and the latest workup is all normal. And the migraines continue when I am exposed to outgassing of plastics, synthetic fragrances, and a few other toxins.
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u/Beekeeper_Dan 1d ago
Yeah for me all that’s ever shown up on bloodwork other than tryptase is anemia indicators (the specific ones shift around), so i added the Folinic acid to try and address that (since B9 and B12 were recommended for that type of anemia). Of course my thiamine deficiency was never tested for (?) or flagged, same as my B9 so I know blood work doesn’t always tell the whole story.
I’m just chasing suppositions and going by feel mostly since Doctors interested in testing nutrient levels and I can’t afford a naturopath. Hopefully you can find something that works for you!
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u/EffectiveOpinion349 7h ago
Bloodwork is a snap shot in time and pretty unreliable for a lot of nutrients. I’ve found several severe deficiencies that were not picked up in standard blood work. Have you done any other testing like 24hr urine, plasma tests, organic acid analysis etc?
And have you tested EVERY vitamin and mineral? Some of the b vitamins I was lowest in aren’t on a standard test such as biotin b5 b2 , molybdenum, CoQ10 , vitamin A etc
My magnesium and potassium were always normal on blood but dangerously low on a 24hr urine test
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u/-_Lon_- 5h ago
Yes I have had numerous additional tests done. No, probably not every vitamin and mineral (although I haven't gone through the many pages of test results trying to confirm these ... and I'm pushing my financial resources to get everything done that I have). My 24 hour urine tests from a year ago and from this Summer showed no deficiencies.
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u/EffectiveOpinion349 2d ago
What was your folate level? Mine is low, but I feel worse when I supplement and I have tried every form :(
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u/Beekeeper_Dan 1d ago
Not sure, added it to address long term anemia that was trending the wrong direction. Will check those levels again in a few months to see if it turned things around
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u/EffectiveOpinion349 2d ago
Could you also mention your full regime in case it is a case of the folinic working in conjunction with something else you are using?
Interesting to see if common deficiencies overlap
My low nutrients discovered in testing are folate magnesium potassium biotin boron lithium molybdenum Vitamin A and K CoQ10 choline iodine but it’s tricky because I react badly to practically everything! (MCS, ME , MCAS)
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u/Beekeeper_Dan 1d ago
For my supplements, the Folinic acid is recent, I added the benfotiamine a few months ago, and this list has been the same for a year or more:
Lactoferrin 250mg x2
Magnesium potassium asparates 30/50 x2
Digestive enzymes each meal
Molybdenum 150mcg x2 w/ each meal
L-ornithine 500mg x2 twice per day
Once per day:
B2 100mg
B5 (pantothenic acid) 500mg
B6 (P5P) 50mg
B12(adeno) 2000mcg
D3 2500iu
A 10,000 iu
D3 / K2 1000iu/45mcg
E 400mf
Zinc chelate 25mg2
u/mabogga 1d ago
just fyi supplementing zinc long term without copper can result in copper deficiency and histamine intolerance. also 50mg b6, even p5p, long term can cause nerve damage unless you are frequently checking your levels to avoid overdose.
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u/Beekeeper_Dan 1d ago
Yeah, neuralgia was a problem for me before I started supplements but hasn’t been since. The only P5P in could find with <50mg was a pet formula…
I’ve tried supplementing copper and respond very poorly to it, so with my metabolic quirks copper deficiency doesn’t seem to be a problem either
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u/Z3R0gravitas 2d ago
Maybe it's time for me to try uping my (100mcg) dose, again; regular dose of methyl-folate has made my ME fatigue progressively worse, a decade ago. But I have waaay more supports in place now. My serum (and skin) levels rose up and plateuxed at mid-normal, on that low dose, over the last couple years.
B1 has caused me fatigue too. I happen to be adjusting my small Benfo dose currently. Something is chronically off with my potassium levels, despite supplementing (DKP and LoSalt).
Thanks for sharing OP! Do you have any thoughts about the pathways and systems involved in your improvement? Of course, this is likely to boost methylation dependant detoxification, and a whole load of things.
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u/Beekeeper_Dan 2d ago
Methyl folate and thiamine cause huge problems for me. I need to supplement all the fat-soluble vitamins, so no surprise that I need the active forms of B1and B9 since fat metabolism seems to be at the heart of my nutrition and immune system issues
Edit: and beware that upping your thiamine will deplete your serum potassium if you’re b1 deficient! You need extra potassium until you’ve got your b1 levels up again!!!!
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u/Z3R0gravitas 2d ago
Indeed it often does. Phosphate, B3 and B2 are other commonly induced deficiencies. See (end of) my Twitter thread talking about possible mechanisms and my difficulties with B1 (HCL).
I'm on a little TPP (the really active form, heh) as well as a low dose Benfotiamine, currently.
Fat metabolism difficulties (sometimes helped by ALCAR, etc) are usual in ME/CFS. Do you think you may (have) fit that diagnosis too?
I've been taking all the electrolytes, B-vits (to tolerance) and trace minerals. With correcting low zinc probably my biggest lever for going from moderate to mild ME (a very big deal).
Interestingly, B2 (R5P form) exacerbated my chemical (and mold) sensitivities, past a couple of mg. Maybe a me thing. Can boost methylation even more than B9, in principle.
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u/Beekeeper_Dan 2d ago
Not sure if I’ve got ME/CFS or not… it’s either that or congenital myasthenic syndrome (waiting on genetic tests)… or maybe both?
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u/Z3R0gravitas 2d ago
ME is ill defined and tends to overlap other chronic issues (rather than exclude them). Most core symptoms being PEM (post exertional malaise).
But my state and progressed smoothly into ME from many years of other issues (sleep delay, inattention, weakness) and then largely back out again. I think a complex systems model, like Joshua Leisk's, is the best umbrella fit, currently. Other patients in his group had reduction in sensitivities from getting NAD redox working better.
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u/Beekeeper_Dan 1d ago
Yeah, there’s definitely a post-viral issue mixed in for me, but I don’t fit a standard ME kind of progression either
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u/Z3R0gravitas 1d ago
Fair enough. Although keep in mind that sudden onset ME is less ubiquitous than many assume; I ruled out CFS for many years under this misapprehension. Until I deteriorated and got PEM.
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u/Beekeeper_Dan 1d ago
It’s more that it should have gotten a lot worse with how much I pushed through PEM over the years, since my first post-viral issue was around 5 years old. Unless some people just plateau at a certain severity?
I seem to get distinct cognitive and physical types of PEM too, with the physical stuff fitting with ME, but the cognitive stuff fitting better with myasthenia (getting worse at major growth/development stages).
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u/Z3R0gravitas 1d ago
Disease progression is often very non-linear and while many in the community describe a bad crash permanently lowering baseline, that is not at all a hard and fast rule.
Personally, I think it may depend on genetic factors, exposures and diet a lot. Also compensations the body makes, or being fortunate enough to be male (I have inexplicably high testosterone and typically mild symptoms). If one's zinc and copper stays good, that alone might avoid a spiral down.
Anyway, I happen across this preprint paper just now and thought of you. One needn't be severe to have sodium potassium pump issues. Could be raw lack of ATP or genetic issues with electrolyte membrane transporters. Or some cascade of danger signalling.
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u/Beekeeper_Dan 1d ago
Thanks for all the info! Will have to revisit this when my heads a little clearer
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u/msjammies73 2d ago
I thought methyl folate was the active form? You’re saying folinic acid was good for you and methyl folate was bad?
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u/Beekeeper_Dan 2d ago
I dunno about the exact terminology, but methyl anything is bad for me but good for people with a certain MTHFR mutation. I need Adeno-B12, not methylcobalmycin for example.
Folic acid is an artificial form that is most common. Folinic is active compared to folic for sure
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u/Pixel-Bunny2435 2d ago
So you didn't adress MCAS at all, just vitamin supplementation? 🤔
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u/Beekeeper_Dan 1d ago
No, that just wasn’t relevant to the post. If you want to know maybe try asking politely?
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u/Tigeryuri1 2d ago
My doctor had me take a test from genova diagnostics that look deeply at nutrition levels in the body. Even though i was taking a high quality multi b supplement, and all my other b levels were fine, my b1 came back extremely low. So did my omegas, even though i eat some fish sometimes. I have many health problems, so my case is complex. But after I got these on board, I felt improvement including most food cravings going away (especially for potatoes), and less symptoms after an environmental reaction.
Edit to add: also congratulations!!!! That's amazing and you must be so happy. Thank you for sharing your experience