• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Allergy / Mast cell treatments

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I know exactly what you mean about recognizing symptoms as being part of a real diagnosis.

I just saw my hands flushing when standing and feeling faint for the first time about a month ago.

I knew I had orthostatic hypotension because my bp drops after 3 minutes but
Finding out I had pots explains why I feel like crap after being upright for about 10 minutes.

I've had 4 - 3 minute pmttts at drs offices but never a longer ttt that showed my hr races after being
upright 10 mnutes / aka pots. Not only would this have helped explain my disability, it would've helped me relax knowing
I just needed to lay down to stop this. I can't believe a ttt wasn't done in 1992 when I first saw a cfs specialist.
Or that it's not required testing for me/cfs. Not that everyone has it but it should be identified.

Thanks for the well wishes. Tc .. X
 

antherder

Senior Member
Messages
456
Thank you so much! I don't want to come in and be overbearing with tips though. I am happy to answer any questions about mast cells or mast cell conditions, and I love to help people get better much quicker than I did! (It took me 10 years to find the correct diagnosis and preventative treatment for my mast cell disease!) So feel free to toss any related questions at me!

Hi Deborah,

Just wondering if you have any knowledge about the relationship between mast cell degranulation and copper. Is it common for people with mast cell disorders to have lower than normal levels of ceruloplasmin and/or high levels of toxic unbound copper? Are mast cell disorders classified as a malabsorption state, ie, is low iron also common, etc?

I know ceruloplasmin is needed to break down histamine, and that I have some sort of copper problem, and also some sort of systemic mast cell problem too (I am now taking oral sodium cromoglycate which is reducing my GI symptoms) but I haven't been able to find out which is the primary condition. I'm confident I've had both issues since early childhood.

Any thoughts on this would be much appreciated. Thanks.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Fatigue can be an allergy symptom. The point of some medications is to counter mast cell mediators that are released by overactive mast cells and causing a wide variety of symptoms. Other meds are said to work on stopping mast cells directly.

I'm too tired to go over the list of mast cell symptoms but I'm sure it's in this thread. Or if you googled mast cell disorders, you'd find it.

tc ... x
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
http://forums.dinet.org/index.php?/topic/21174-mcas-confirmed/?hl=mast

I do too. But if I read something several times I get it eventually. It took months for this to sink in.

This one might be easier. Actually this is the thread that helped me finally realize I had a mast cell problem. tc ... x

Ps. You may find that taking some of these meds and changing your diet to eliminate your triggers will help you get less frustrated. I'm on 5 mg Wal-zyr several times a day and 1 - 2 tsp of children's dye free Benadryl at night.

A paleo / wahls type of diet works best for me but right now it's too hard for me to keep up with.
Dr. Teri Wahls has a great TED video on this.
 

Questus

Senior Member
Messages
125
I had my last appointment with the Chairman of Oncology at M D Anderson on Thursday for my work up for Mastocytosis.

(Please don't confuse Mastocytosis with MCAS)

This workup was for Mastocytosis.

My result to the 24 hour urine methylhistamine test was 188. A positive test for Mastocytosis is 200.

So I was 12 points under a positive test for Mastocytosis.

http://www.mayomedic...erpretive/83011

I asked him at what point so they consider the test positive for Mastocytosis? (Meaning is it like other blood tests where 'a little bit high or a little bit low is not meaningful?')

He said 200. Eek. Meaning I 'passed' the test my 12 points. About 5%.

That's a very high # by any measure, including theirs. So I'm negative...For now, by a hair. Yeah!

He was 'not satisfied' though with my very high norepinephrine level of over 1400 being just a symptom of hyperadrenergic POTS. I asked why, and he explained that a lot of cancers have a very high norepinephrine level, (not just pheo's)...

He referred me to an endocrinologist at MD Anderson for further testing.

So yes, obviously I have MCAS, but compared to Mastocytosis, that's a good thing.

Mastocytosis is a very, very serious and rare disease caused by the body making too many mast cells, and they clog up internal organs and the disease is associated with very serious illness and cancer.

MCAS is simply 'mast cells behaving badly'. A chronic issue, but not 'deadly', so of zero interest to a cancer center like MD Anderson.

I 'passed' for now. His last words to be were, 'Call me if you need to, but I hope you don't need to.' Indeed.

It's been a long journey. Am still on it with the ongoing search for why my norepinephrine level is so crazy high, (other than having Hyperadrenergic POTS). Will see the endocrinologist at MD Anderson in the next week.

Best,
Questus
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
the relationship between mast cell degranulation and copper

Have you looked at MTHFR (histadelia) and pyroluria (low zinc = high copper)? There are not infrequently mentioned together, but I haven't yet dug into the purported mechanism.
 

SOC

Senior Member
Messages
7,849
I'm behind the curve in understanding this mast cell disorder stuff -- still doing the research -- so I'll try not to ask too many questions. There's one I'd kinda like to get straightened out right away, though. What kind of dosc do you see to get norepinephrine levels tested and/or whatever else is needed to identify a mast cell disorder? Allergist/immunologist? Endocrinologist? Something-I've-never-heard-of-ologist?
 

camas

Senior Member
Messages
702
Location
Oregon
I'm behind the curve in understanding this mast cell disorder stuff -- still doing the research -- so I'll try not to ask too many questions. There's one I'd kinda like to get straightened out right away, though. What kind of dosc do you see to get norepinephrine levels tested and/or whatever else is needed to identify a mast cell disorder? Allergist/immunologist? Endocrinologist? Something-I've-never-heard-of-ologist?

I hope Questus will see this and can give you an answer. Those with frank Mastocytosis are usually diagnosed and treated by oncologists, but I have seen other masto and MCAS patients talk about being treated by allergists, immunologists, rheumatologists, etc. Unfortunately, like CFS, the specialists in mast cell disorders are kind of few and far between, so you have to do some hunting.

If you have a doctor willing to work with you, s/he might be able to get some help from Dr. Afrin. Here's his latest MCAS Primer for Physicians.
 

SOC

Senior Member
Messages
7,849
I hope Questus will see this and can give you an answer. Those with frank Mastocytosis are usually diagnosed and treated by oncologists, but I have seen other masto and MCAS patients talk about being treated by allergists, immunologists, rheumatologists, etc. Unfortunately, like CFS, the specialists in mast cell disorders are kind of few and far between, so you have to do some hunting.

If you have a doctor willing to work with you, s/he might be able to get some help from Dr. Afrin. Here's his latest MCAS Primer for Physicians.
Thanks, that's a big help. :)
 

antherder

Senior Member
Messages
456
Have you looked at MTHFR (histadelia) and pyroluria (low zinc = high copper)? There are not infrequently mentioned together, but I haven't yet dug into the purported mechanism.

Hi Sherlock,

I did look into those a while ago, but can't remember much of what I read... I just got my SNP results so will have to try and work out if they can explain some of my problems.
 

sandgroper

Senior Member
Messages
104
Location
west australia
Hi camas,

I'm excited about the new treatment avenue and will be trying all kinds of things quickly too. I resisted these meds because of the way they knock me out but I'm sticking with it to see if it helps.

When you say you've worked your way up to an adult dose of zyrtec, did you start with children's
or split the pill ? Since children's benadryl works fir me I was considering trying other children's meds.

I'm going to split the vistaril next time. 25 mg is just too much for me. The upside was that it cleared
my sinuses. The downside is that I'm still feeling groggy 36 hours later. Actually this is how I feel for a few days after iv sedation.

Fwiw, Vistaril is a first generation prescription anti histamine that also helps with insomnia. I asked for it because a family member takes it and said it worked great. This family member is healthy tho.

It's my understanding that klonopin won't work on mast cells since these are from allergies but it can help
other side effects. Adrenaline surges for example. Fwiw, I'd try stopping the klonopin once you get the allergies
under control. Klonopin is an addictive drug so I only take it once in awhile for myoclonous or if my
insomnia is too bad. Theanine is an alternative.

Do you know if zantac is recommended even if digestion is good ? I'm ok as long as I take enzymes (creon)
that my stool tests say I need. Or can mast cells block enzymes so zantac would help ?

Tc .. X
I am interested in your use of CREON as I have been prescribed it. Have been a bit wary of taking it. Did you have many digestive symptoms and were you told to add probiotics as well?
 

sandgroper

Senior Member
Messages
104
Location
west australia
I did not know that about glutem. i just had a big gluten and wheat challenge. It went on longer than i expected and now ihave mouth ulcers and cold sores. It was so easy to have bread again but that also meant adding back some dairy...so not sure if its the wheat the gluten or the dairy.
 

sandgroper

Senior Member
Messages
104
Location
west australia
I am interested in your use of CREON as I have been prescribed it. Have been a bit wary of taking it. Did you have many digestive symptoms and were you told to add probiotics as well?
I have also been prescribed creon..and probiotics.....i just can't seem to manage the creon and not sure i want to do the probiotics as they can make some more ill.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I have also been prescribed creon..and probiotics.....i just can't seem to manage the creon and not sure i want to do the probiotics as they can make some more ill.

sorry I didn't see this till now. I'm still using creon but I find I still need to take
either virastop or candidase or both if i eat significant amount of meat. It
just sits in my digestive tract otherwise.

I haven't noticed it making me feel any worse ... but, I just went through an
episode of ruq pain that only resolved by going on a soft or liquid diet.
I'm getting a little pain back if I try eating too many solid foods in a day.

I wanted to update my status on mast cell treatments. Due to the ruq pain I
stopped taking the Walzyr and Benadryl. I have no idea if the pain was connected
but I had to stop these to see.

My allergies didn't revert back to how bad they were prior to this treatment but
I just had a systemic allergic reaction to Bactroban that probably wouldn't have
been as severe if I'd been on allergy meds.

The plan is to re-introduce wal-zyr slowly and take as little as possible. The Benadryl
is slowing my thinking down too much so unless I'm having a severe allergic
reaction I'm going to avoid it.

tc ... x
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
Ok, so after 7 years of modifying my diet (wahls now) and experimenting with energy and detox supplements, I realize now that allergies / mast cells are still a problem for me despite avoiding all my known food
intolerances. I thought I had my allergies under control because the constant runny nose, itchy watery eyes, constant phlegm, etc were
eliminated when I removed the SAD garbage from my diet. Recent throat swelling should've been a clue for me but my cfs brain doesn't get clues anymore. Lol

I figured out several years ago that if I tried adding bacon or tomatoes back into my gfcfsf diet
that my fibro pain returned with a vengence. I wasn't sure why until I started reading about mast cells.
Cort has a great article here.

I've been on a low oxalate diet since 2008 due to kidney stones and not too long after eliminating
high ox foods my pelvic pain disappeared. I attrubuted this to eating high ox foods since that's what I'd read
on the trying low oxalate diet board and the vulvodynia site.

I've been experimenting with high ox foods for the last year
and discovered that I don't always react to high ox foods which makes me think mast cells are involved.
I've read that certain bacteria degrade oxalates but if there's a connection I haven't made it yet. I've been eating
Kefir or taking probiotics most days since 2005. The connection could be there tho and I just haven't
found it.

I passed 1 kidney stone in the last year while experimenting with high ox foods but I'm pretty sure
that was from not drinking enough water. I was on a veggie juicing and orange kick at the time so I didn't feel thirsty.

Back to my allergies .. According to a skin prick test years ago, I'm allergic to most everything on the planet.

I'm extremely allergic to dust (huge welt on back during testing) and I know I can never keep my place dust free because
I'm allergic to dust so dusting makes me feel sick. Lol . I'm working in this tho. I put away all knick knacks.

I've been using Target brand children's dye free benadryl and it works for the throat swelling but it wipes me out. I tried 25 mg of Vistaril
for the first time the night before last and slept all day yesterday. It was a new and interesting feeling in my
brain so I'm going to try it again. I think. I'm not sure how to define the feeling just yet. Drugged yes but not like
Loratab or klonopin.

I was wondering if others here experienced the "funky" brain feeling from Vistaril. I skipped it last night because I was afraid to take it. I had ataxia 24/7 from 1990 - 2006 and I get myoclonus and petite mals easily so my brain isn't what it should be.

Meanwhile if I can stay awake today I want to go get some stinging nettle, quercitin, claritin and zantac.

Anyone else with me/cfs treating these ? Tx .. X

Eta. I recognized this groggy / post Vistaril feeling. It's the same way I feel for a few days after iv sedation.
I have read in multiple places that CITRATE inhibits stones. I admit I do not eat spinach very often as it is a known oxalate, but I do not in any other way deliberately avoid oxalates. In fact - aren't they high in tea? I have drunk tea like a fish for long periods of time (like a year) with no problem. I have taken high dose cal/mag supplements lifelong with no stones. I've had stone-formers warn me and scoffed, telling them I seem to be a sieve for cal/mag and the miracle would be if I ever get enough to make a stone. Whatever the reason, I've never had one.

Rand56 told me it was citrate and I have ALWAYS favored the citrate form of cal/mag (I can in some subtle way feel the difference).

So for instance you can find studies like this:
J Urol. 1985 Jul;134(1):20-3.
Prevention of recurrent calcium stone formation with potassium citrate therapy in patients with distal renal tubular acidosis.

Preminger GM, Sakhaee K, Skurla C, Pak CY.
Abstract

Distal renal tubular acidosis is a common cause of intractable calcium nephrolithiasis. We examined the effect of oral potassium citrate therapy in 9 patients with incomplete distal renal tubular acidosis diagnosed on the basis of an abnormal response to an oral ammonium chloride load. Patients were studied during a control phase and after 3 months of potassium citrate treatment (60 to 80 mEq. daily). Potassium citrate caused a significant increase in urinary pH and urinary citrate, and a decrease in urinary calcium. The urinary relative saturation ratio of calcium oxalate significantly decreased during treatment, while that of brushite did not change. Potassium citrate also was shown to inhibit new stone formation. During a mean treatment period of 34 months none of the 9 patients had new stones, although 39.3 plus or minus 79.7 (standard deviation) stones per patient formed during the 3 years preceding treatment. The results support the potential clinical advantage of potassium citrate therapy in patients with distal renal tubular acidosis and recurrent calcium nephrolithiasis.

Cell Biology – Immunology – Pathology

Kidney International (2004) 65, 1724–1730; doi:10.1111/j.1523-1755.2004.00566.x
Citrate inhibits growth of residual fragments in an in vitro model of calcium oxalate renal stones

Karyee Chow, James Dixon, Sally Gilpin, John P Kavanagh and Popduri N Rao
Department of Urology, South Manchester University Hospital, Manchester, United Kingdom
Correspondence: Dr John P. Kavanagh, Department of Urology, Education and Research Centre, South Manchester University Hospital, Wythenshawe, Southmoor Road, Manchester, M23 9LT, UK. E-mail: Johnk@fs1.with.man.ac.uk
Received 20 August 2003; Revised 28 October 2003; Accepted 3 December 2003.
Top of page
Abstract

Citrate inhibits growth of residual fragments in an in vitro model of calcium oxalate renal stones.
Background


Alkaline citrate is thought to be helpful in reducing recurrences of calcium oxalate stones. The evidence for this is incomplete, there have been few good trials, all with their own limitations, and not all reported any significant benefit. In vitro studies are usually cited to support the clinical studies but these too have their drawbacks, in particular they relate to crystals and microscopic aggregates and not to actual stone growth. Here we test citrate in vitro using a model of macroscopic calcium oxalate stone enlargement.
Methods


Twelve calcium oxalate stones were grown at a time in a stone farm. Six were grown with 2 mmol/L citrate and six with 6 mmol/L citrate. Three protocols were tested; artificial urine, artificial urine with urinary macromolecules (UMM) from male controls and artificial urine with UMM from male stone formers. The stones were grown continuously for at least 24 days.
Results


In all three experiments the higher citrate concentration significantly reduced the growth rate of stones by more than 50% (P < 0.001). There was a small decrease in ionised calcium in the stone growth media (P < 0.001) and significant (P < 0.001) but small increase in pH (about 0.07 pH units). The inclusion of UMM also brought about a decrease in stone growth, particularly at 2 mmol/L citrate.
Conclusion


Citrate inhibited stone growth in this laboratory model. This was true both in defined media and with addition of UMM. This adds to evidence justifying the use of alkaline citrate in calcium oxalate nephrolithiasis.

-------

http://www.cmaj.ca/content/174/10/1407.short#T1
This is a really good paper that goes over all factors in oxalate stone formation