Allergy / Mast cell treatments

[dannybex]

Quercitin and Nettles cools me also. You get very hot with POTS. I can sleep better also, not so hot. Even with the house very cool, I used to be so hot.

That's because nettle is an astringent "yin" type herb, as opposed to a hot or "yang" type herb or food. Here's a list of the benefits of nettle:

http://aprilcrowell.com/blogs/nourishing-with-stinging-nettles

 

[dannybex]

Hi sally,

My problem is that I get cold easily. I carry jackets with me everywhere. I'm assuming it's from my
Hashimoto's.

Hi X,

I was just reading the other day that some docs/researchers think that Hashi's might be connected to elevated estrogen levels. Of course now I can't remember where I read that...!

 

[xchocoholic]

Hi danny,

That ship has sailed for me. My estrogen is so low that my labs come back questioning if I'm still a female. ; )

My body temp runs low too. I'm a pita ...

Btw, are you trying this protocal ?

Hi camas,

Love the flask idea. Let me know if you find one small enough. I've got liquid dye free zyrtec on my grocery list now.
I want to see if taking less but more often makes me less groggy.

Speeking of feeling groggy tho, I think the 500 mg solgar niacinamide (inositol hexa something actually)
and 500 mg jarrow nac (twice a day) are helping. I was getting a popcorn popping feeling in my head from the b3 at
first but it's gone now. Not that I'm a rocket scientist yet but I feel less groggy.

I've been mostly out of it since going to a seminar on mercury wed night. I ate "gf" junk food to stay awake.
It worked but I got glutenned of course. Which means seizure meds, yada yada. Great seminar tho.

Tc .. X

 

[camas]

My body temp runs low too. I'm a pita ...

Speeking of feeling groggy tho, I think the 500 mg solgar niacinamide (inositol hexa something actually) and 500 mg jarrow nac (twice a day) are helping. I was getting a popcorn popping feeling in my head from the b3 at
first but it's gone now. Not that I'm a rocket scientist yet but I feel less groggy.

X,

Glad to hear you made it through your seminar and got something out of it.

I tend to have a low body temperature, too -- even when I'm flushing. It's listed as a mast cell issue (see symptoms link in my signature). The Quercetone is putting a quick stop to my flushing to the point that I feel almost chilled.

I used to take NAC for my liver, but have never tried B3. I didn't realize they would help with grogginess.

I started Holy Basil yesterday because it's a natural H2 blocker and is supposed to help with mast cell stabilization. Glad I didn't go too overboard with the amount, because I discovered the hard way that it has antifungal properties. Will try again tomorrow, but tread more lightly...

 

[xchocoholic]

Hi camas,

I was told to take nac for mercury detoxing too. My labs have shown thst I have a mercury problem. I can't
remember now what kind of test it was tho. I've had a lot of tests in the last 4 years .. Serum, urine, stool and
saliva.
Twice a day is working better than once.

I got the b3 / nadh idea from you, right ? Only I didn't find nadh that day. I only found the no flush inositol hexa
something. The guy at vit shoppe recommended it. I took niacinamide before but didn't notice
anything. That was several years ago tho so I'm sure my body has changed and it wasn't this
type.

I don't think I've had a normal body temp since 1990. I always thought it was from my body fighting
viruses all the time since I'm positive for several. I live in fl so staying warm isn't usually a problem.

Why is holy basil / antifungal a problem ?

 

[dannybex]

Hi danny,

That ship has sailed for me. My estrogen is so low that my labs come back questioning if I'm still a female. ; )

My body temp runs low too. I'm a pita ...

Btw, are you trying this protocal ?

Uh, no. I can't remember how I stumbled across this thread, but was probably searching for some other term and arrived here.

I don't seem to have histamine/allergy problems, at least the 'classic' kind. I do have a salicylate intolerance, which interferes with methylation, so am trying to work on both of those. Also just found out my vitamin D is too low, so trying to address that w/o interfering with methylation! Aaaauguughghgh!!! So complicated...

Re low body temp: Are you drinking a lot of water? Again, there are some folks out there suggesting that higher water intake dilutes electrolytes too much, especially sodium, and are finding that reducing water and other fluids can raise body temps. I'd mention this one guy's name, but he's pretty out there...controversial...(he advocates eating more sugar for example) but is getting results.

Also, the vata/pitta/kapha thing as I think you know is very important -- and/or the TCM perspective. Some vegetables are very cooling, while others are warming, some are diuretic, so they wouldn't be good for peeps who are already peeing like a racehorse. I'm more of a vata-pitta (emphasis on vata) but definitely notice a difference when I eat certain vegetables. That's why I don't think any one single diet will work for all -- as we all have different body types, and thus different sensitivities and reactions. Being a 'vata', I know I'd do very poorly on the Wahl's diet, so I never pursued that after reading about it...too many raw veggies for this crazy man.

I have the pseudo-raynaud's thing at times too, but that's been a little better as I've been reducing my water intake, and/or adding salt when I do have water. But my adrenals are stressed, so that might not be the case with you or others.

Plus...I haven't been able to go to the acupuncture clinic for about a year and a half, but one of the last times I was there they told me I was "blood deficient". Makes total sense to me, as most of the time my feet are icy cold, yet the rest of me is fine. Like there isn't enough blood to go around. Kind of fits in with the 'low blood volume' situation that many with ME/CFS have...

Okay, I'll shut up.

 

[camas]

Hi camas,

I was told to take nac for mercury detoxing too. My labs have shown that I have a mercury problem.

I got the b3 / nadh idea from you, right?

Why is holy basil / antifungal a problem ?

Sorry to hear about your mercury problem. Hope the NAC is helping. My old doc was really big on it for the liver.

Oh, right. I forgot NADH was a coenzyme from B3. Duh. I've never tried B3 on its own. I'm glad you to hear you think it might be helping.

The only problem with the Holy Basil being an antifungal is that I just took too much and and it really cleaned me out. Hard way to lose weight! I'm assuming it was a die-off reaction since I've never had problems eating any kind of basil. I'll just have to start again with just a tiny dose and see what happens.

 

[camas]

Okay, I'll shut up.

Don't shut up. I'm sure I'm not the only one who enjoys your comments.

 

[xchocoholic]

Hi danny,

No need to shut up. ; ) .. Good to year from you. All of this is just so complicated. Thankfully we've got internet forums and dr google.

Sorry to hear your d is too low. Are you going to need a prescription dose to get it back to normal ?

I don't know how d is related to sals or methylation. I didn't do well on
the methylation supplements after awhile so I just use adb12 from time to time for muscle strength. If I get too
much of the b12s or folate, I feel jittery / pre seizure. I seem ok with sals. Children's aspirin actually makes me feel good
when I take it. I stopped because it's a nsaid tho.

I'm good on water. I need 8 - 10 glasses a day to avoid dark urine. Dark urine translates into kidney stones
Or bladder pain so I'm very careful here.

I'm actually into eating fruits, esp
oranges and tangerines for most of my electrolytes now. I read it was a better source. I'll have about 2 - 3 oranges a day plus other fruit. So far no candida either. : )

I'm not up on tcm .. I started out on the elimination diet and just eat what makes me feel good and avoid foods that I'm intolerant of. I don't eat all the fruits and veggies dr wahls
recommends either. I tried it tho. Lol. It took me a few months to realize that I couldn't possibly eat
all that and juicing wasn't helping me. I still like her plan overall.

My adrenals are stressed too but I don't feel it as much if I avoid stimulants like caffeine
and certain vitamins. I'm hoping if I get my oi / hypoperfusion straightened out that my adrenals
will heal too. I can't imagine my adrenals not freaking out when I have petite mals and sob from
a high heart rate. aka pots episode for me.

Fun, huh ? Tc .. X

 

[dannybex]

Yeah, fun.

Thanks for your (and Camas') kind words. I'll reply more hopefully later today...................klunk.

 

[soulfeast]

Do you all know which store brands have gluten? I am using CVS, Walmart, Wegmans. Thank you!

Just looked at what I have generic from CVS (claritin and pepcid) , contains pregelatinized starch which can be from wheat.. might explain my GI tract being enraged lately..

Equate from walmart (zantac) does not contain this.

Thanks for posting the info on p450. I wonder if that's a cfs thing ? Fwiw tho, I couldn't handle ANY drugs or supplements without feeling poisoned
when I was eating gluten, dairy, soy, etc but after being off these for 1 - 2 years all of the sudden I could handle most.

Gluten and dairy are known for doing insidious things to our bodies and not everyone can tell it's happening.
Heck, I ate gluten successfully for 15 1/2 years after getting gluten ataxia without realizing what it was doing to my brain.

It's late and I can't thnk anymore, but have you seen theglutenfile ? Do you know about the autism gfcf connection ?

G nite .. X

 

[Adster]

Got a letter from my doc saying she wants to see me about my IgE test results, so I assume they weren't within range. Now I have to wait 3 weeks to find out!

 

[Dainty]

I'm so glad things are improving for you Dainty. Could you say a bit more about how you manually bring your nervous system down please?

Jenny

Jenny, sorry it took me a while to see this post.

The short answer is: laying down and using meditation techniques.

The longer answer is a log more complicated. When I first began, it would take 6+ hours straight of attempting, which would sometimes achieve it for a few minutes to an hour and other times did not achieve it at all. That went on for months. Even if I could manage to fall asleep with my nervous system parasympathetic, it wouldn't be long before it was up again, and I'd wake up feeling like i'd been fighting a monster all night.

Once I began cranial osteopathy treatments, the structural problems causing my nervous system to stay wound up began being addressed so it became less difficult. Sometimes it now only takes me half an hour to bring it down. It is still not "easy", and if I neglect to do it for a few days then it becomes a lot harder to achieve. Yesterday I worked at it for 4 hours and only partially got my nervous system to wind down. Some days that's just the way it goes.

The main technique involves mentally "tuning in" to whatever symptom and/or area of your body is most prominently problematic, and then working out how to best relieve it. This can mean oscillating tensing and relaxing a muscle, it can mean deep concentration on relaxing the surrounding tissues, it can mean heating it, it can mean breathing techniques, and even utilixing various mind-body connective stuff. Emphasis throughout is it's important to keep from getting frustrated, and also important to resist the temptation to distract yourself. I've done hours of work at it only to cave to distraction and have to begin all over again. Finding everything that's getting in the way of resting and addressing it.

There are other techniques, but this post would be far too long to list them all. It's a process of finding out what works for you, and persisting with it.

Actually it was a different PR member who taught it to me and helped me through a lot of it, PM me if interested and I could connect you.

 

[Dainty]

Wow, that is quite story! Are you planning on being tested for mast cell activation disorders? If you ask me, you do fit the mastocytosis profile quite nicely!

Have you seen this: Mastocytosis - Fabio's Story?

Good luck!

Thanks, nanonug. I currently do not have plans to test myself for mast cell activation disorders, because my symptoms which indicate mast cell problems are rapidly receding under advanced osteopathic treatment.

 

[Jenny]

Jenny, sorry it took me a while to see this post.

The short answer is: laying down and using meditation techniques.

The longer answer is a log more complicated. When I first began, it would take 6+ hours straight of attempting, which would sometimes achieve it for a few minutes to an hour and other times did not achieve it at all. That went on for months. Even if I could manage to fall asleep with my nervous system parasympathetic, it wouldn't be long before it was up again, and I'd wake up feeling like i'd been fighting a monster all night.

Once I began cranial osteopathy treatments, the structural problems causing my nervous system to stay wound up began being addressed so it became less difficult. Sometimes it now only takes me half an hour to bring it down. It is still not "easy", and if I neglect to do it for a few days then it becomes a lot harder to achieve. Yesterday I worked at it for 4 hours and only partially got my nervous system to wind down. Some days that's just the way it goes.

The main technique involves mentally "tuning in" to whatever symptom and/or area of your body is most prominently problematic, and then working out how to best relieve it. This can mean oscillating tensing and relaxing a muscle, it can mean deep concentration on relaxing the surrounding tissues, it can mean heating it, it can mean breathing techniques, and even utilixing various mind-body connective stuff. Emphasis throughout is it's important to keep from getting frustrated, and also important to resist the temptation to distract yourself. I've done hours of work at it only to cave to distraction and have to begin all over again. Finding everything that's getting in the way of resting and addressing it.

There are other techniques, but this post would be far too long to list them all. It's a process of finding out what works for you, and persisting with it.

Actually it was a different PR member who taught it to me and helped me through a lot of it, PM me if interested and I could connect you.

Thanks Dainty. I also find meditation helpful, but so far it only has short term effects. I know from autonomic function tests that my parasympathetic nervous system is functioning very poorly, so working on this is bound to be helpful to some extent.

Jenny

 

[Dainty]

Thanks Dainty. I also find meditation helpful, but so far it only has short term effects. I know from autonomic function tests that my parasympathetic nervous system is functioning very poorly, so working on this is bound to be helpful to some extent.

Jenny

For me, the only long term progress has been from the advanced osteopathy treatment addressing the extensive structural problems which are cuasing my body to be so dysfunctional. But the progress cannot happen without winding your body down, because your body doesn't heal while it's in "crisis mode". They are actually literlaly unable to treat you until they bring you parasympathetic by addressing structural problems. Most of the shifting/releasing happens not on the table but rather afterwards, and it continues to happen over the next several weeks. That is why it's essential that a person do the work to bring down their nervous system at home, otherwise they can actually completely undo the effects of treatment.

But, just to clarify, again, I'm not saying medication is the answer. I'm saying that, for me, correcting strucural problems appears to be the answer, and one component of that treatment requires learning to manually bring down your nervous system as part of standard lifestyle management.

 

[xchocoholic]

Do you all know which store brands have gluten? I am using CVS, Walmart, Wegmans. Thank you!

Just looked at what I have generic from CVS (claritin and pepcid) , contains pregelatinized starch which can be from wheat.. might explain my GI tract being enraged lately..

Equate from walmart (zantac) does not contain this.

Hi Soulfeast,

In order to keep up with what has gluten in it you have to google it regularly. Googling gluten free zyrtec will get you the list of all antihihistamines that are gluten free.

I found out that I can't handle lactose in meds either. It makes my paget's of the skull grow. tc .. x

 

[xchocoholic]

Thanks, nanonug. I currently do not have plans to test myself for mast cell activation disorders, because my symptoms which indicate mast cell problems are rapidly receding under advanced osteopathic treatment.

Hi Dainty,

This is interesting but imho would be better suited for it's own thread. I CAN'T possibly respond to osteopathic treatments and I'm sure most people with MCAD can't. I'm allergic to most things on this planet. Many of us have anaphylaxis that has to be treated with medications.

FWIW. My freind who had dystonia from gluten did this in conjunction with a GF diet and she's now undergoing chemo and a stem cell treatment for cancer. I'm taking that to mean she had underlying bio chemcial issues that needed to be addressed.

Thanks. I look forward to reading this on another thread. TC ... x

 

[xchocoholic]

Hi ..

I was thinking that I'd like to start a simple status update thread for those of us on this treatment. That way others who want to try this would have a quick reference point to see how we're progressing or not ...

It can be monthly, weekly or if an important change happens. It should include current meds, symptoms, test updates and doctors visits. Or anything else you can think of. My objective is to keep it simple so those with brain fog can understand it.

Meanwhile, I'm still finding that Wal-zyr takes care of most of my swelling. If I'm having an episode of throat swelling / irritation, 10 mg of Wal-zyr will stop it. I was taking a tsp of children's Benadryl and while that helped 10 mg of Wal-zyr stops it completely. In this case, 5 mg isn't enough.

It would be great if I could find my trigger but I'm at a loss for now.

I was asking about this on the MC forum and it was suggested that I try it. It's great when things work ..

I also stopped taking Allegra at night. I was getting headaches and heard that this was a common side effect of Allegra. For now I'm just on Wal-zyr throughout the day. Brand name Zyrtec at night and 1 tsp of children's Benadryl.

And I've reduced several of my supplements. I don't think I need these since the mast cells are under control. I'm still experimenting tho.
TC ... x

 

[Dainty]

This is interesting but imho would be better suited for it's own thread. I CAN'T possibly respond to osteopathic treatments and I'm sure most people with MDAD can't. I'm allergic to most things on this planet. Many of us have anaphylaxis that has to be treated with medications.

FWIW. My freind who had dystonia grom gluten did this in conjunction with a GF diet and she's now undergoing chemo and a stem cell treatment for cancer. I'm taking that to mean she had underlying bio chemcial issues that needed to be addressed.

Thanks. I look forward to reading this on another thread. TC ... x

I have had anaphylaxis multiple times. It is not fun. I required emergency allergy meds (injections) several times a week for allergic reactions even living in a porcelain environment and eating 5 foods total, somtimes only down to 3.

And yes, that is what is receding. I haven't needed emergency medication for about 7 months, after previously requiring it up to several times a day for years on end.

Bio chemical issues have to come from somewhere...