MCAS diagnosis

[Hd-x]

Is high Leukrotrine and tryptase enough evidence for MCAS?
The doctor want to put me under fexofenadin (my gut dont like it)
Pentatop (Cromolyn) and Daosin.
This stuff is expensive in Germany, are there any more affordable things around?

I know the Afrin sheet,
so what about Ceterizin, Benzos, Quercitin, phosphadylserin, curcumin?

Pizotifen is Ketotifen predecessor.
Did Pizotifen have the same mast cell stabilty features like Ketotifen?

 

[wigglethemouse]

Has your doctor ruled out mastocytosis which normally has high tryptase? Mastocytosis results in excess mast cells which can be detected on skin or GI biopsies with special staining.

High Leukotrienes can be associated with mast cells. Montelukast is an anti-leukotriene medication used in the US.

Usually people start with H1 and H2 antihistamines and then work up the list adding one thing at a time. There are three main types of 2nd gen H1 anti-histamines (Zyrtec, Allegra, Claritin in the US), so if fexofenadin doesn't work for you try one of the others . You can even start at half a tablet at night to check for reactions before increasing or adding another type at night or in the morning.

Prof Theoharides has some interesting talks on mast cells. There is a transcript with this one
https://forums.phoenixrising.me/thr...-researcher-dr-theoharides.62443/post-1016799

And last year at IIMEC13 ME conference in England he gave a good talk

 

[ebethc]

ketotifen put me to sleep

the OTC stuff works best for me... non-corn vitamin c, l rhamnosus, xyzal, quercetin, DHA (for neuro inflammation) plus Singulair (rx in the u.s.) ... Here's my Histamine cheatsheet:


=TYPES OF HISTAMINE RECEPTORS
There are four types of histamine receptors in the body, and activating each receptor performs a different task.

1. http://www.scielo.br/pdf/abd/v85n2/en_10.pdf

• H1 – blood vessel dilation, smooth muscle contraction of the bronchi and GI tract, stimulation of vagus nerve, increases histamine and arachidonic acid release, decreased AV node conduction of the heart, helps form nitric oxide, improves eosinophil function.
• H2 – stimulates nasal and intestinal mucosa, relaxes the LES, increases vascular permeability, stimulation of suppressor T cells, increases stomach acid production, reduces neutrophil and basophil function, increases lymphocytes, increases activity of NK cells.
• H3 – increases histamine in the brain as a neurotransmitter, suppresses norepinephrine release at parasympathetic nerve endings, stimulates nasal mucus, reduces bronchoconstriction and gastric acid.
• H4 – enhances the function of eosinophils (disease fighting white blood cells), mast cells, and neutrophils.

• Histamine H1 receptors: Smooth muscle and endothelial cells affecting skin; blood vessels
  • effects: vascular permeability, bronchoconstriction, platelet aggregation
  • counter effect agents: Benadryl, Claritin, Xyzal (levocetirizine) block activity of these receptors
• Histamine H2 receptors: Cells in the intestines control acid secretion, abdominal pain, and nausea; heart rate
  • effects: heart rate & cardiac output; gastric secretion
  • counter effect agents: Pepcid, Tagamet, Zantac
• Histamine H3 receptors: Central nervous system controlling nerves, sleep, appetite and behavior
  • effects: neurotransmission
  • counter effect agents: TBD
• Histamine H4 receptors: Thymus, small intestine, spleen, colon, bone marrow and white blood cells; inflammatory response
  • effects: immunomodulation; chemotaxis; implicated in rheumatoid arthritis;
  • counter effect agents: culturelle (downregulates receptor, and, therefore inflammation) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3042653/
    • The Role of Histamine H4 Receptor in immune and Inflammatory disorders: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2697784/
    • (l rhamnosus, l gasseri) substantially inhibited the release of inflammatory mediators such as TNF-α, IL-6, IL-1β, and IL-10 stimulated the treatment of RAW 264.7 macrophages with LPS. ...This means that Lactobacillus rhamnosus may be working at the very deep and fundamental level of gene activity and transcription,inhibiting the NF-Kappa B signaling pathway
      • https://www.ncbi.nlm.nih.gov/pubmed/29444150
      • https://www.clinicaleducation.org/r...immune-regulator-effective-in-many-disorders/
      • https://www.sciencedirect.com/topics/neuroscience/histamine-h4-receptor

Multiple Receptors Effects

• Histamine H1/H2/H4 receptors:
  • effects: chemokine & cytokine production (up AND down)
• Histamine H1/H2 receptors:
  • effects: reduces blood brain barrier ( https://www.ncbi.nlm.nih.gov/pubmed/20956310 ; https://www.ncbi.nlm.nih.gov/pubmed/11450085 )

EDIT: "culturelle" listed under H4 counter effect agent is brand-name of an OTC probiotic containing l rhamnosus gg.... fyi for peeps outside u.s. the "gg" version of l rhamnosus has a patent owned by whoever makes culturelle; not sure if other variations of l rhamnosus also have the same effects, but I'm guessing the answer is "probably"... if culturelle is not available where you live, or if you don't want to take something that include maltodextrin (ie, corn), then try other variations of l rhamnosus..

 

[taniaaust1]

Has your doctor ruled out mastocytosis which normally has high tryptase? Mastocytosis results in excess mast cells which can be detected on skin or GI biopsies with special staining.

Even severe systemic mastocytosis can be easily missed which happened in my uncle's case thou it nearly killed him several times due to anaphylactic shock causing him to need resuscitation before he was diagnosed. I think it was about 10 years before he finally was diagnosed.. one the FOURTH tryptase test. His first three tests though the disease was almost killing him, were in the normal range.

He' said to me that the best way to diagnose this is via bone marrow biopsies (and I think there is also some gene testing). People with systemic mastocytosis do not necessarily get skin spots. Unfortunately he's now got cancer, this disease is very nasty

 

[Malea]

@Hd-x In case you have GI-biopsies somewhere: it’s pretty easy to get them tested for mastocytosis. You can send them to the pathology of Prof Horny in Munich. Insurance is covering one second opinion for the biopsies. You just need a „Überweisung“ and convince the current pathology to deliver them (that might be the harder part).

 

[Hd-x]

They maked a tryptase test and after that Leukotrine to confirm it.
the blood work is attached, I personally want to avoid any Gi biopsies and so on, because I guess once you start to do so, you have to rule out a lot off other illness, too.

Attached also a datasheet that may be for few interesting.
The list contains illnesses that have somewhat overlapping similar symptoms with MCAS and/or may coexits with MCAS.


@Malea
Do you have any experience with Dr. Bieger?
Is it a good CFS doctor? I ask this because, it seems there are no CFS doctors in Germany , or?

 

[Learner1]

You shouldn't need a biopsy unless you can't get things under control with meds. The other tests my doctor does in the US are prostaglandin D2 and chromogramin A. He also held a test to see if I had the KIT gene associated with some mast cell diseases, but mine seems to be autoimmune.

I have to have all antihistamines compounded, including fexefenadine, as they all contain either cow milk or corn products, which I am allergic to.

Ketotifen works well for me these days, as do quercetin and curcumin. I take phosphatidyl serine, along with other phospholipids, for my mitochondria - I wasn't aware it does anything for mast cells. And I use diphenhydramine (Benadryl) for nausea and emergencies.

Cromolyn sodium has been extremely helpful in calming my intesinal symptoms.

 

[ebethc]

I've had great results this week clearing histamine problems w burdock! I can't believe how good I felt this a.m. after taking burdock the past 2 days... I've really been miserable and have been trying everything this spring (although the histamine flare up I've been experiencing this Spring is due to both pollen and gut problems..)

@Learner1 ... interesting re AH's containing cow or corn... I didn't know that... I do okay w some cow milk, but I limit corn a lot...... Does cromolyn sodium lower stomach acid?

 

[Learner1]

Hmmm... How are you taking the burdock? Eating it? Tea?

All antihistamines contain either milk or corn derivatives, just as all painkillers do, and all steroids contain lactose...

Cromolyn sodium is a mast cell stabilizer.

 

[Malea]

Do you have any experience with Dr. Bieger?
Is it a good CFS doctor? I ask this because, it seems there are no CFS doctors in Germany , or?

No sorry, I don’t know him. There are some private doctors who are working with CFS-patients.
If you’re looking for one, you could ask in the german group on here or on Facebook. You could also look for environmental doctors.

 

[Hd-x]

Attached DAO and Histamine levels.

1.) My Histamine levels are fine
2.) My Diaminooxidase levels are high,
My Diaminooxidase levels are high,
why did the doctor prescribe additional Daosin tabletts ??
Didnt Daosin contain Diaminooxidase, if so - why did I need even more??

 

[ebethc]

Hmmm... How are you taking the burdock? Eating it? Tea?

capsules w dried herbs, no fillers... amazing at "pushing out" whatever was lingering & irritating my system... I've been really struggling ever since the norcal fires last fall..Spring allergies have been making me miserable, but are dissipating and the underlying yuck is going away... burdock seems to help w BOTH. In hindsight, I wish i would have take burdock during the norcal fires ...

also, wish I understood the specific mechanism of action for burdock, ie, WHY is it making me feel better? lowering gut inflammation? clearing out histamines or something else (it's noted as a "blood purifier" which is pretty vague)
https://www.amazon.com/Oregons-Wild-Harvest-Supplements-Packaging/dp/B0006ZWUR0

tea is not a bad idea!

All antihistamines contain either milk or corn derivatives, just as all painkillers do, and all steroids contain lactose...

ugh

Cromolyn sodium is a mast cell stabilizer.

yes, I meant how does it interact w enzymes and stomach acid, if at all.... for example, quercetin can inhibit enzymes

 

[Learner1]

Apparently, burdock root contains multiple types of powerful antioxidants, including quercetin, luteolin, and phenolic acids. It's a liver detoxer, diuretic and helps the lymphatic system which gets rid of the body's trash.

https://draxe.com/burdock-root/

I can't find any info on cromolyn and stomach acid.

 

[wigglethemouse]

quercetin can inhibit enzymes

Prof T in his talks explains that you need high doses of quercetin for absorption, but at high doses it can affect the gut. He came up with his own formulas that allow better absorption at lower doses such as Neuroprotek

Dr. Theoharis Theoharides: Number one, I never give more than one gram a day, flavonoids of any combination for two reasons. Number one, if you actually … The flavonoids are absorbed less than 10% from the gut. Let’s say we prescribed three grams a day quercetin. What will happen is it will basically stay in the gut primarily. It will shut down every enzyme in your gut. You’re literally destroying your bioflora or the microbiota, if you wish. On the one hand, we’ll be giving probiotics. On the other, we’re basically killing all the enzymes. We’re basically just shooting ourselves in the foot.

Source :https://www.drkarafitzgerald.com/2018/11/20/mast-cell-clinical-researcher-dr-theoharides/

 

[Malea]

My Diaminooxidase levels are high,
why did the doctor prescribe additional Daosin tabletts ??
Didnt Daosin contain Diaminooxidase, if so - why did I need even more??

That really makes no sense, since yours is high.

I wanted to clarify a bit further why I suggested to send the biopsies in: If your Tryptase is positive, there’s a bigger chance that you have systemic mastocytosis. In rare cases, mastocytosis can lead to a form of cancer. So you might want to rule that out to know if that is something that needs to be checked regularly. (Mastocytosis patients have bone marrow biopsies every year or two, I think)

 

[ebethc]

Apparently, burdock root contains multiple types of powerful antioxidants, including quercetin, luteolin, and phenolic acids. It's a liver detoxer, diuretic and helps the lymphatic system which gets rid of the body's trash.
/QUOTE]

it seems to work better than quercetin alone.... maybe the other stuff in it helps amplify the effects of quercetin??

thanks

 

[Hd-x]

If your Tryptase is positive, there’s a bigger chance that you have systemic mastocytosis. In rare cases, mastocytosis can lead to a form of cancer.

the only way to be sure seems be a bone biopsie,
But what would this help? In case of MLC (cancerous Mastocystosis) ppl. die soon, it isnt treatable.
I think, I dont really want to know my day where I could die.

So why not look, what blood levels could "perhaps" tell us?


High Leukotriene:
Did Leukotriene rise if the body fights bacteria and fungi/mold?
Did ppl. with allergy not also have high Leukotriene?
(I have several allergies)


Mastocystosis + Tryptase levels:
Systemic Mastocystosis (SM) < 20ng/ml
Smouldering SM < 200ng/ml
Agressive SM (ASM), MC-Leucemia (MLC) - sometimes over 200ng/ml
(MCL sometimes >1000ng/ml)
Certainly there may be cases that fall out off those ranges (thats rare).

Tryptase cut off in blood tests are usually <11,4ng/ml,
but we need to keep in mind this is the above %95% (!).
5% healthy persons have naturally occuring Tryptase levels between 10-15ng/ml (few rare cases even higher) -without having MCAS or any other illness.

If 5% healty persons have naturally higher Tryptase levels = how does it look @ sick ppl?
If CIIRC, heavy metal, toxine, allergy or whatever so, can raise Tryptase levels, too --> are Leukotrine + tryptase enough MCAS evidence?
Allergy triggered MCAS is called "secondary MCA", as far as I understand can in such a case the root case be treaten (not only the symptoms)

 

[Rufous McKinney]

also, wish I understood the specific mechanism of action for burdock

burdock is one of the five herbs in Essiak, a formula developed by a Canadian nurse which cured alot of cancer cases....so there is definatley something Good up with Burdock.

 

[Hd-x]

It seems Petasin also interacts with Leukotriene.
(naturally occurs in Petasites hybridus)

 

[wigglethemouse]

shouldnt any addional blood tests made to be really sure?

@Learner1 listed additional good tests to consider

The other tests my doctor does in the US are prostaglandin D2 and chromogramin A. He also held a test to see if I had the KIT gene associated with some mast cell diseases, but mine seems to be autoimmune.

I listed MCAS tests available in the US here if that helps look for the equivalent where you are.
https://forums.phoenixrising.me/thr...think-mcas-eds-3-gerd-sibo.62187/post-1011907

Table 2 in this paper gives a proposed diagnostic criteria
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/
1. Symptoms that seem to be related to mast cells
2. Response to meds
3. Blood/urine markers of mast cell mediators