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Posted 3/29/2019 10:29 PM (GMT 0)
Hello All,

At the end of January I had my first sinus infection in a long time. It was nasty. Needed doxycycline and Augmentin (didn’t touch it) for 14 days. Right after that, and stress was involved too, I suffered a Mast Cell reaction that hasn’t gone away.

I have had to stop my herbal antibiotics for Lyme disease and most of the natural supplements my doctor wants me on, because they really do worsen the huge histamine reactions I have daily. Has anyone else had trouble with natural supplements or treatments while having a Mast Cell reaction?

My doctor told me to stay off those that make the reaction worse and not to exercise. I’m also wondering if this is ever going to stop. I have done trial and error with foods and supplements during all of this time. Basically, red meat, chicken, vegetables and fruit good, everything else is very very bad.

Is there anyone else who has suffered long term Histamine release from Mast Cell Activation? What has worked for you? Rarely there is a day I’m not suffering with it. Basically 3 different questions here in this post.

(I’ve tried Amy Myers DAO and it doesn’t work, and to my knowledge, quercetin only works if there are no mast cells in your blood stream. I am taking Allegra and Prilosec. That’s the best combination of H1 and H2 inhibitors I’ve found).

Thank you in advance for your thoughtful answers! 🙂
Posted 3/29/2019 10:38 PM (GMT 0)
My girlfriend has a lot of problems with histamine.
Have you tried a low histamine diet?
She got better when doing that. Now she eats carnivore, so only meat and salt.
The meat cant be to old so we only buy on days when its very fresh. She has to freeze cooked food directly, as histamine increases when its in the fridge.

I just read about mast cell activation in the book Toxic by Neil Nathan and it says that mold can cause it. I strongly recommend to read that book.
She recently started mold and parasite treatment and her histamine problems seems to have decreased some.
Posted 3/29/2019 10:44 PM (GMT 0)
I'm very interested in the "high cost psychotic medical experiment"!

For me, when mast cells are misbehaving, most things I put into my body create some sort of reaction, including herbs. MCAS also makes die-off reactions stronger when I am doing anti-microbial treatment of any kind (herbs, homeopathy, resonant frequency machine, etc.).

I have not heard that about quercetin only working when you have no mast cells in the bloodstream. I have found it very helpful, including in stopping a histamine reaction. For example, a few weeks ago when my partner put a fermented ingredient in my food by mistake, I started feeling the brain fog take over, asked about the food ingredients, and then took quercetin, which interrupted the reaction effectively. I took curcurmin and vitamin C at the same time, which also might have helped. I will look into what you mentioned, though, as it would be good to know quercetin's limitations. In general I have found a low-histamine diet helpful.

Currently I'm working with the Dynamic Neural Retraining System, which has helped a lot of people with CIRS, Lyme, multiple chemical sensitivities, etc. reduce their reactivity and symptoms. I will post more about it if it helps!
Posted 3/29/2019 10:59 PM (GMT 0)
I use Quercetin and it does seem to work - I do usually feel better an hour or so after taking it.

I read that it should be taken daily on a schedule and not wait til I have symptoms. But I’m concerned if I use it all the time then my body will build up a resistance to if... so I take it on an as needed basis.

I also haven’t heard that Quercetin will only work if you have mast cells in the blood stream?
Posted 3/29/2019 11:00 PM (GMT 0)
Yes, on a low histamine diet, and have many food sensitivities and some food allergies.

I follow the same food prep your gf does.

I have mold, but my TGF-Beta is almost down to where my doctor wants it. First step of many, I’m sure in detoxing from mold. I am still taking the treatment for mold.

Thanks

Deep_sleep said...
My girlfriend has a lot of problems with histamine.
Have you tried a low histamine diet?
She got better when doing that. Now she eats carnivore, so only meat and salt.
The meat cant be to old so we only buy on days when its very fresh. She has to freeze cooked food directly, as histamine increases when its in the fridge.

I just read about mast cell activation in the book Toxic by Neil Nathan and it says that mold can cause it. I strongly recommend to read that book.
She recently started mold and parasite treatment and her histamine problems seems to have decreased some.

Posted 3/29/2019 11:04 PM (GMT 0)
freeze dried nettles helps, but be sure its freeze dried

have you used essential oils at all?

If you have nose/nasal problems EO's work great
Posted 3/29/2019 11:07 PM (GMT 0)
I went psychotic, almost on a daily basis, at a high cost Lyme “clinic.” I left early.

Quercetin has never worked for me. No matter when or what brand I try.

The low histamine diet isn’t working either.

I think this might be one to hang around for awhile. I’m extremely sensitive to everything. My body probably can’t take anymore. 19 years of toxic mold, and 17 years of Lyme, Bartonella and c. Pneumoniae, plus EBV, leaky gut, endometriosis, severe fibrocystic breasts, hypothyroidism, moderate brain damage found on 3D MRI, and so on and so on.

Thanks!

saraeli said...
I'm very interested in the "high cost psychotic medical experiment"!

For me, when mast cells are misbehaving, most things I put into my body create some sort of reaction, including herbs. MCAS also makes die-off reactions stronger when I am doing anti-microbial treatment of any kind (herbs, homeopathy, resonant frequency machine, etc.).

I have not heard that about quercetin only working when you have no mast cells in the bloodstream. I have found it very helpful, including in stopping a histamine reaction. For example, a few weeks ago when my partner put a fermented ingredient in my food by mistake, I started feeling the brain fog take over, asked about the food ingredients, and then took quercetin, which interrupted the reaction effectively. I took curcurmin and vitamin C at the same time, which also might have helped. I will look into what you mentioned, though, as it would be good to know quercetin's limitations. In general I have found a low-histamine diet helpful.

Currently I'm working with the Dynamic Neural Retraining System, which has helped a lot of people with CIRS, Lyme, multiple chemical sensitivities, etc. reduce their reactivity and symptoms. I will post more about it if it helps!

Posted 3/29/2019 11:11 PM (GMT 0)
See above for how poorly Quercetin has done for me.

I read an article about it not working well with mast cells in the already in the bloodstream. Of course I don’t remember which article, because of the damage done to my brain by toxins and several concussions.

Thanks!

Girlie said...
I use Quercetin and it does seem to work - I do usually feel better an hour or so after taking it.

I read that it should be taken daily on a schedule and not wait til I have symptoms. But I’m concerned if I use it all the time then my body will build up a resistance to if... so I take it on an as needed basis.

I also haven’t heard that Quercetin will only work if you have mast cells in the blood stream?

Posted 3/29/2019 11:30 PM (GMT 0)
Thank you! I will try them.

I have a lot of EOs, and I’m so sensitive that I can’t even stand them anymore. I’ve had to go with all unscented products. MCS...

Lapis_29 said...
freeze dried nettles helps, but be sure its freeze dried

have you used essential oils at all?

If you have nose/nasal problems EO's work great

Posted 3/29/2019 11:39 PM (GMT 0)
So I did order freeze dried nettle with and without Quercetin, just to keep my bases covered. I keep everyone apprised.
Posted 3/29/2019 11:43 PM (GMT 0)
Oh gosh - re: going psychotic at a lyme clinic. Hmmm...now you've got me wondering which one.


Psychosis is no picnic. My Dad went psychotic when they weaned him off of Effexor antidepressant (after over 15 years on it) in 3 days!!! (yes 3 days - they called that weaning)....and cold turkeyed him off Ativan at the same time (he was taking ativan 4 X day - smaller doses for several weeks)

He NEVER recovered.....as the antipsychotic medications hit him really hard.
Posted 3/29/2019 11:59 PM (GMT 0)
I’m so sorry to hear about your Dad. That is terrible! Inexcusable as well!

As for the clinic, it’s in Arizona. My extremely fair Google review has 18 likes as of a few days ago. Google sends me notifications when I get new likes for some reason.

Girlie said...
Oh gosh - re: going psychotic at a lyme clinic. Hmmm...now you've got me wondering which one.


Psychosis is no picnic. My Dad went psychotic when they weaned him off of Effexor antidepressant (after over 15 years on it) in 3 days!!! (yes 3 days - they called that weaning)....and cold turkeyed him off Ativan at the same time (he was taking ativan 4 X day - smaller doses for several weeks)

He NEVER recovered.....as the antipsychotic medications hit him really hard.

Posted 3/30/2019 1:22 AM (GMT 0)
have you tried chlorophyl for mold toxin binder?

or cholestryramine?
Posted 3/30/2019 1:33 AM (GMT 0)
No to chlorophyll, but yes to pharmacy grade CSM. My doctor won’t put me on compounded CSM. He thinks his stuff is doing the trick, which my TGF- Beta was cut in half in 5 months, but who’s to say it simply wasn’t moving to a mold free environment? I asked him. He can be stubborn.

Lapis_29 said...
have you tried chlorophyl for mold toxin binder?

or cholestryramine?

Posted 3/30/2019 2:21 AM (GMT 0)
I have serious histamine issues too and of course food tolerance is just abysmal because of it. I also can't tolerate a lot of supplements. There's no pattern, it's just kind of guess and test. But for histamine I take quercetin which was mentioned, Cal-Mag-Zinc, vitamin C, and eat what I can tolerate. I recently had to cut out beans too cuz apparently they're high in histamine...and they were making me itchy I think :/ So yeah mostly it's just fish and rice for me now. Some people have histamine reactions to stuff others don't though so those lists aren't always accurate. Like I can eat peanut butter til the cows come home. I wouldn't recommend a carnivore diet in this case.
Posted 3/30/2019 2:32 AM (GMT 0)
I’m sorry you’re suffering too. I react to fish. The only thing left for me to eat is meat, fruit, and vegetables. My food sensitivities , histamine reactions to food, and food allergies are ridiculously extensive. Yep. Trial and error! I’m losing weight like crazy. I’m kind of glad your experience validates what I’ve been experiencing, but I certainly don’t want to wish this on anyone.

jb1994 said...
I have serious histamine issues too and of course food tolerance is just abysmal because of it. I also can't tolerate a lot of supplements. There's no pattern, it's just kind of guess and test. But for histamine I take quercetin which was mentioned, Cal-Mag-Zinc, vitamin C, and eat what I can tolerate. I recently had to cut out beans too cuz apparently they're high in histamine...and they were making me itchy I think :/ So yeah mostly it's just fish and rice for me now. Some people have histamine reactions to stuff others don't though so those lists aren't always accurate. Like I can eat peanut butter til the cows come home. I wouldn't recommend a carnivore diet in this case.

Posted 3/30/2019 10:31 AM (GMT 0)
Chinese medicine and acupuncture have helped both my TBD’s and the accompanying histamine sensitivity.
I followed a low-histamine diet and methods, took quercetin, nettles, bromelain, and vitamin C. It stopped most of my reflux, but I had to do everything perfectly to stop reactions. Since going Chinese medicine, I have been able to loosen up considerably.
At first, I reacted to everything, even acupuncture, but stuck with it under close guidance by my DOM. It is definitely helping everything.
Posted 3/30/2019 12:27 PM (GMT 0)
I’m so glad that worked for you. There’s a reason Chinese medicine has been around so long. It’s a long hard road ahead with these diseases, isn’t it? You have to do everything just right and at the perfect time. Thank you for more suggestions!


BabsBunny said...
Chinese medicine and acupuncture have helped both my TBD’s and the accompanying histamine sensitivity.
I followed a low-histamine diet and methods, took quercetin, nettles, bromelain, and vitamin C. It stopped most of my reflux, but I had to do everything perfectly to stop reactions. Since going Chinese medicine, I have been able to loosen up considerably.
At first, I reacted to everything, even acupuncture, but stuck with it under close guidance by my DOM. It is definitely helping everything.

Posted 3/30/2019 6:48 PM (GMT 0)
Wow I wish weight loss was my symptom. I just put on another 1.5lbs today for absolutely no reason. My body is so out of balance. It's gotta be water but it's still upsetting. I've thought about chinese medicine or acupuncture too...
Posted 3/30/2019 6:59 PM (GMT 0)
I didn’t have time to read all the responses here but wanted to comment. I have not been diagnosed with MCAS or histamine illness. However, I did have runaway cytokine storms after briefly taking (7 days) antibiotics. Happened with minocycline and another time with Augmentin. I also had the same thing occur following a 5-7 day stomach virus (no Rx meds involved).

The first two times, SPM Active saved me. This last time post virus, Quercetin stopped it after a couple of days.
Posted 3/30/2019 7:25 PM (GMT 0)
Try not to get to upset about weight gain. I’ve fluctuated through my late years with these illnesses. I was over 222 pounds before I found the first disease in the cycle: hypothyroidism. I really would like to try acupuncture myself.

jb1994 said...
Wow I wish weight loss was my symptom. I just put on another 1.5lbs today for absolutely no reason. My body is so out of balance. It's gotta be water but it's still upsetting. I've thought about chinese medicine or acupuncture too...

Posted 3/30/2019 7:36 PM (GMT 0)
This is exactly what happened. Illness not related to my chronic illnesses and bam, I’m in histamine hell. I had a huge mast cell reaction while trying BVT too. It stopped a few weeks after I stopped stinging, at the request of a doctor who used it in his practice and knew by looking at all of my labs, that I shouldn’t be doing BVT.

The sinus infection I had in January, plus severe stress, as I had brought a new puppy into my life after having to put my first beloved dog to sleep, and his own medical issues, which thankfully he has outgrown, and the histamine reactions aren’t going away.

I’m excited to try the freeze dried nettle. It’s at least an option I can start on my own right now. I’m definitely skipping all supplements and my herbal antibiotics until I see my doctor in mid April.

I’m glad you were able to stop the cytokine storms!

WalkingbyFaith said...
I didn’t have time to read all the responses here but wanted to comment. I have not been diagnosed with MCAS or histamine illness. However, I did have runaway cytokine storms after briefly taking (7 days) antibiotics. Happened with minocycline and another time with Augmentin. I also had the same thing occur following a 5-7 day stomach virus (no Rx meds involved).

The first two times, SPM Active saved me. This last time post virus, Quercetin stopped it after a couple of days.

Posted 3/30/2019 10:59 PM (GMT 0)
Has anyone with MCAS or histamine issues noticed an uptick in histamine reactions when taking probiotics prescribed by their LLMD? It’s natural bacteria, and I don’t really want to stop taking something that helps my gut, especially since I, and everyone else here, have a Leaky gut.
Posted 3/31/2019 12:05 AM (GMT 0)
Some probiotic strains are high histamine and others are not. A good blend that's all low-histamine is Ortho Biotic probiotics (don't get it from Amazon, as it's vastly more expensive there). Here's a list of low- and high-histamine probiotic strains, if you want to check specific products: https://wholenewmom.com/health-concerns/low-histamine-probiotics/ (There might be a better list out there, but I happened to have this one bookmarked.)
Posted 3/31/2019 12:44 AM (GMT 0)
Thank you so much for this!

saraeli said...
Some probiotic strains are high histamine and others are not. A good blend that's all low-histamine is Ortho Biotic probiotics (don't get it from Amazon, as it's vastly more expensive there). Here's a list of low- and high-histamine probiotic strains, if you want to check specific products: https://wholenewmom.com/health-concerns/low-histamine-probiotics/ (There might be a better list out there, but I happened to have this one bookmarked.)

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