MCAS/Histamine ideas/knowledge

Naturodao is the best DAO brand but it will only reduce oral histamine from food. If I was you I would do this:

1 MG ketotifen at night
DAO b4 meals
Luteolin / Rutin (Neuroprotek great but pricey)
Quercetin / stinging nettle

1.5mg mirtazapine if there is insomnia

Cromolyn Changed my Life. 2x a day before a big meal 200-300mg

Dao helps me as well as a number of other things others have listed.

saraeli said...
I wrote a book in response to this post yesterday, but the forum told me my login was invalid and deleted it. So I'm trying again, more briefly!
.

that's happened to me several times before also - its v frustrating!

now - if i know i am going to write War and Peace - i tend to write it in a word document on the PC - and copy and paste into a post here when done

for topics that come up often - its useful to have a saved copy on file

One other thing I wanted to add, in reading about histamine intolerance, MCAS, etc I learned that a common antioxidant used in Lyme patients, NAC, reduces DAO. DAO is a digestive enzyme used in your body to break down histamine in foods. I was taking NAC twice for a really long time!

pinkblossom said...
Hey Lymie, would you be able to share where it says about NAC reducing DAO, I tried to find it online but couldn't so not sure what to search for! thanks

glad that you have a good plan!

I meant to type that I was taking NAC twice a day for a long time.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc8308327

Go to table 2

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4127955/

Garzie said...
good luck with the Disulfiram Lymie

i would say some worsening of symptoms is normal if doubling the dose from 100 to 200mg - especially in anyone who is sensitive of has MCAS issues

i was just going to add to be v careful of aerobic exercise if you have chronic lyme and fatigue

strength based training is known to help strengthen and balance the immune system more than aerobic exercise ( aerobic exercise actually lowers immunity for around 24 hrs even in fit individuals - sick people with much less homeostatic reserve may be much more sensitive to this effect ) and many people with fatigue are very sensitive to aerobic exercise worsening symptoms or triggering PEM

walking is usually fine - even brisk walking is usually OK - but beyond that it seems to be very easy to trigger PEM

i used to be super active - mountain biking - squash - gym etc - so i would really like to get back to doing a full range of activities -
but while i found i could walk without triggering PEM as long as i didn't do anything to extreme - even a short run of 100 yards would trigger PEM the next day
and i was able to work up to doing over 30mins of fairly respectable weights workouts without any PEM

most LLMDs recommend avoiding aerobic exercise like running - until they are very near fully recovered for this reason

its odd that there is such a fine line between what does and doesnt trigger PEM
i believe its due to free radicals accumulation from continuous elevated energy usage in the mitochondria overwhelming the anti-oxidant system and causing inflammatory damage that causes the PEM

strength based training with its exertions interspersed with breaks - typically with more breaks than exertion allows recovery of the antioxidants in the rest periods

at least that is my hypothesis

ref MCAS - there was a special issue of the Lyme Time's magazine that did a deep dive into MCAS posted here in the forum in the last month or so - may be worth a look if you can find it in the search - or maybe some one can repost it ( i did have a quick look but didn't spot it )

all the best !

Thanks Garzie!

Yeah, going from 100mg a day to 200mg is a big jump in the Disulfiram world. I have bee building up slow since Feburary. Started at 25mg every third day, then 25mg every other day, then 25mg a day, 50mg a day, 100mg, and then of course to my current 200mg. I didn't really start to feel like I was improving a bit or herxing until 50mg. 200mg is a big jump. Over my many years of illness I've learned not to attribute every flare up to herxing, but, in this case, the timeline fits and based on my nearly eight and half years of experience it "feels" like a herx.

There is something about Disulfiram that works for me. I've read there are many potential uses for it that need to be stuided more. Anti-bacterial, anti-fungal, anti-viral, anti-inflammation. I don't know why exactly it helps me but it seems to do so.

Re: Exercise

I have def induced PEM/flare due to running before in the past. I haven't jogged in years. I have jogged 6 times in the last three or so weeks. They have been relatively easy jogs of 1.5 to 3 miles. Mile times have been around 9:45 to 10:00. In my 20s when I was running quite a bit as a hobby even long slow jogs were around 9:00 minute miles. To be fair, I'm older now, 37, so I might just be slower lol. So the effort is not intense though I am not well conditioned in jogging so it's still not an easy jog, but, I'm not pushing it.

I do resistance train. I resistance train far more than cardio. In fact, until jogging the last couple weeks the only "cardio" I had done for years was walking. There is something about jogging that feels great especially now that it is a bit warmer. It's like a sauna detox in exercise. When tolerated it does wonders for my mental health. It's even felt good psychically in the days after. I wonder if it is improving my metabolic state. Coming up on nearly 9 years since the tick bite that led to chronic illness I am trying to be more open, and perhaps a bit more risky, about what improves my mental state.

Luckily, even when exercise seems to induced a flare/PEM for me I don't seem to experience the permanent worsening that I see CFS/ME people talk about. In fact, last time I took Disulfiram my capacity for exercise seemed to increase as the medicine worked over time, I was able to exercise more consistently, and my exercise capacity seemed to progress linearly. That's my hope again. I'm going to try not to push it too hard. If I do, I'll back off and rest. I"ve accepted that I'll never be able to be as active as I was pre-illness or simply as active as a fit person my own age, but I hope I can make some progress in the future. I'm not a person who does well sitting all day.

Re: MCAS

I'll take a look at the Lyme Time's article. Appreciate it !

Post Edited (Lymie24) : 5/23/2024 9:03:50 AM (GMT-8)

I get the same symptom of bad migraines complete with throwing up, and in response to anything I inhale that my sinuses don't like. It could be from cleaning the litterbox or from somebody spraying Lysol.

After I started taking Baicalin twice a day I no longer developed those down-for-the-count type terrible migraines anymore. Baicalin has mast cell stabilizing effects, too.

I already take Allegra daily.

This spring allergy season has been so awful that I've added one more thing: spraying Nasalcrom into my nose three times daily. That wasn't for migraines, which were still gone. That was to do whatever extra I needed to do for fatigue and brain fog, my new allergy symptoms.

For me my sinuses are my weak link. I think for my son his whole GI tract is extremely sensitive. You might find one part of your body is the gateway to increasing mast cell mediated inflammation that has systemic effects. (It's possible but not necessarily true.)

Don't overlook the sinuses, since they are located so close to the brain. There is such a thing as sinus-brain immune cross-talk. Dr. Shoemaker found some of his CIRS patients couldn't get well until he dealt with their sinuses having been colonized by MarCons. I've always wondered about it, because the medical literature shows that bacteria in the sinuses gain better entry to the cells when the cells are damaged by mold allergy immune responses. For me, my migraines always start with sinus pain, sometimes resembling a sinus infection.

Nasalcrom contains Cromolyn Sodium, a mast cell stabilizer. You need a prescription for oral Cromolyn Sodium, but you can buy Nasalcrom over the counter.