Dont know what to do next after lot of treatments - every opinion is welcome! CFS/Inflammation

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@MartinK just out of curiosity. Which BVT protocol did you follow? Mine says maximum of 10 stings, 3 times a week. Not more. Also it mentions that you might herx quite heavily or have mast cell activation (histamin overload) as a part of the healing process. Perhaps your PEM was caused by these things?
 

pattismith

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I think trypotophan is a problem for me because my ME is converting too much of it to the neurotoxic kynurenines, such as quinolinic acid. Your test results show an excess of KYNA, which is the good kynurenine (antiinflammatory I think).
wishful, you often wrote about your elevated kynurenine. I just read this paper that may be of interest for you.

"The presence of differential levels of anthranilate between our two study groups suggests potential dysregulation of kynurenine (KYN) metabolism. KYN, a central metabolite of the kynurenine pathway (KP), is catabolized to generate the metabolite anthranilic acid. The KP is understood as the primary route in the metabolism of tryptophan (Trp), an essential amino acid known to be a precursor to both serotonin and melatonin. Altered metabolism along the KP has been associated with psychiatric disorders such as depression40 and neurological disorders such as mild cognitive impairment and dementia.26, 41 For example, in a sample of 2,067 dementia‐free Framingham Offspring Cohort participants, Chouraki et al.26 reported an association between higher plasma anthranilic acid and a greater risk of dementia. Other studies have reported elevated levels of KYN8 or lower levels of Trp37 in persons with FM. Together, these studies suggest that disruption of KP metabolic homeostasis may have potential clinical consequences in persons with FM, the symptomatology of which has been reported to include cognitive impairment described as “fibrofog”39 and distressed mood such as depression and anxiety"

https://ascpt.onlinelibrary.wiley.com/doi/full/10.1111/cts.12679

Metabolomic Differentials in Women With and Without Fibromyalgia
 

Wishful

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It does support the ability of KP alterations to cause symptoms consistent with ME. Of course it also said that that area of study is challenging, meaning there's not much known. I'm pretty sure that my symptoms aren't along the serotonin pathway. It's the kynurenine pathway where something is likely wrong. That's tricky to study partly because the problems could be localized to limited areas of the brain. What if, for example, the ratios of the kynurenines were abnormal in just the pineal gland? I expect that the experts can't say absolutely for sure that such limited abnormality isn't possible. A simple spinal tap wouldn't reveal the localized problem.
 

MartinK

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Hi all, last month has been terrible, I don't know what to do to tell the truth :-/

2 months ago, I was on Disulfram (testing this drug for possible active Lyme) and trying Nalcrom (oral cromolyn).
Some of it improved me and I was really happy! My PEMs was low, I did more activity...amazing!

But then everything went away...
I got huge diarrhea from Disulfram (3 months without any problem!!!) and I had to stop it. Also Nalcrom was with problem - manufacturer stopped supplying it to the Czech Republic.

The improvement went still slowly gone...

I decided to peptides treatment (Thymosines and Semax) after some great news here on the forum. I also got a new supply of Nalcrom from Germany and NasalCrom (nasal cromolyn). I also started Huperzine A because my CellTrend results (I did Huperzine A in past without side effects).

As I began this, everything became strange. When I came out of the house I crashed with massive PEM for 4 days. It was different than before. Next week next PEM, harder and harder. I felt like completely burning inside. It was a crazy 14 days...completely bedridden, exhausted, inflammed...

That's why I stopped everything!!! I'm stupid that I started everything at once...
Now I don't know what caused it all and I can only speculate. I was trying to find out if anyone here had PEMs on peptide therapy, but forum was silent.
I dont know, which specialist to contact for peptides...

Few days ago, I did some treatment with NasalCrom, because a lot of pollen in the air...
And it made me a lot worse again.

Therefore, do I suspect that this deterioration can cause pollen? Or NasalCrom?

Im allergic to pollen for many years, but always without PEM. Is it possible that cromolyn can make it worse?

I never have a classic MCAS symptoms, I just react to everything with hard PEM and inflammation, and sure, my OI is also worse and worse.
Any MCAS experienced kindly people here? @debored13 @Hd-x @leela ?

In fact, now I don't know what to do next completely...
I was really mentally strong, but this broke me a lot.

I'm still looking for answers...
- can peptides worsen some patients? what types of patients?
- could one drug work before and now make me sick? - Nalcrom
- can pollen cause hard PEM? Even though I'm on Nalcrom and Aerius?


The only positive thing that keeps me afloat is that my first book about our land comes out :)

The last thing I attach my last results of EBV, Mycoplasma and Lyme. I also have relatively high antibodies to Varicella Zoster (VZV).

EBV-VCA IgM <10.00 arb.j. (0.00 - 20.00)
EBV-VCA IgG 455.00 >> arb.j. (0.00 - 20.00)
EBV-EA IgG 5.07 arb.j. (0.00 - 40.00)
EBV-EBNA IgG 125.00 >> arb.j. (0.00 - 5.00)

Mycoplasma pneum.IgM 0.36 arb.j. (0.00 - 1.10)
Mycoplasma pneum.IgA 0.51 arb.j. (0.00 - 1.10)
Mycoplasma pneum.IgG 126.71 >> kU/l (0.00 - 16.00)


Borrelia b.s.l. IgM WB positive
p41 -
p39 -
OspC +
Osp17 +/-
VlsE -
Borrelia b.s.l. IgG WB positive
p83 -
p58 -
p43 -
p39 -
p30 ++
OspC ++
p21 -
Osp17 -
DbpA -
p14 -
VlsE +
(I was on lot of Lyme treatments in past)

Cheers and thanks a lot for all support and opinions.
Martin
 

Wishful

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- could one drug work before and now make me sick? - Nalcrom
I'd say yes. My experience is that some drugs or other treatments can stop working. It seems quite possible that some treatments have negative effects that are masked by an initial positive effect. When the positive effects stops, you just have the negative effect. Furthermore, our bodies change with treatments, so it's a changing target. For treatments that do affect me, I retest them (stop taking them and then restarting) occasionally to see if they're still working. I've had several treatments work well for years, and then the symptom they were treating simply went away.

- can pollen cause hard PEM?
I'm just guessing 'yes'. I think anything that activates or alters the immune system can trigger PEM; it depends on the individual. We have several separate immune systems, but they do interact, so I expect that an IgA response can trigger t-cells or glial cells or alter some chemical pathways that eventually results in PEM.

My ME started out with a type IV (t-cell mediated) sensitivity. T-cell activation triggered my ME symptoms. I eventually stopped the type IV response, but still had the same symptoms triggered by other inputs. ME isn't simple.
 

leela

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- can peptides worsen some patients? what types of patients?
Yes. Some people react badly to certain peptides. This is why it's good to titrate one at a time.
A friend of mine tanked horribly on Epitalon. For me, Epitalon is great.

- could one drug work before and now make me sick? - Nalcrom
It's entirely possible the synergistic effect with something else could be bad for your genetics, or that the load caught up with you. Backing off to a place where you don't get symptoms is a possible strategy.

- can pollen cause hard PEM? Even though I'm on Nalcrom and Aerius?
Pollen allergy can cause terrible mental and physical exhaustion which is hard to distinguish from PEM.
Allergies and MCAS often go hand in hand.

I would as always recommend TITRATING EVERYTHING. Including and especially Disulfuram, but it sounds like you're done with that. I cannot stress enough the importance of this. Besides starting at a small fraction of a dose, titrating can even look like adding a fraction of your fraction every other day, or every three days or what have you.

I will add that MCAS can cause diarrhea and the burning feeling. If ketotifen is available in your country, consider looking into that. I titrated from 1 mg of that per day to my current dose of 4mg 3X/day over a long time. Cromolyn in my experience can cause gastrointestinal distress unless you also titrate that.

Apparently I'm all about titration :nerd:
Also I am not a doctor.
 

Hd-x

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@MartinK
Heavy metals - lot of amalgams from my mouth are out! Now only 3 amalgams inside, I was on big surgery with wisdom teeths, infection under one is treated - all without effects.
Getting rid off amalgam is a good idea - the question is still how to get ridd off it.
Chelators like DMSA, DMPS are only indicated in cases off acute heavy metal toxicity, because the chelators can only bind to metals as so long they are circulating free --> what the chelators cant do to break it out off any complex.
Since I am not that convinced from so called "mercury-detox" (naturopath) protocolls - so, what I was doing spending some money in genetic tests to check out if my gluthation transferase & the bodys own detoxification pathway works, and it works; the only thing then needed (after amalgam replacement) was just S-Acethyl-Glutathione, SE, B12 injections. Getting rid off the mercury improved few neurological problems, but not more - so dont expect a cure.


Im allergic to pollen for many years, but always without PEM. Is it possible that cromolyn can make it worse?
I'm still looking for answers...
- can peptides worsen some patients? what types of patients?
- could one drug work before and now make me sick? - Nalcrom
- can pollen cause hard PEM?
If someone has MCAS = allergies can "switch" and MCAS sufferers can (in the worst case) get allergic reactions off all kind to nearly everything, even against water, humans (their "smell", no joke), heat, cold, exercising.
There are some MCAS patient guidelines out there & what they should do if fatigue + pain occurs, these guidelines have a lot off overlappings with "ME/CFS-Pacing guidelines".

Ketogenic diet for possible mast cell activation and inflammation - massive ketogenic flu and no more for me.
I cant see much sense in ketogenic diet, but this is just my personal opinion from a view as former weight lifter. (such folks usually can not see any sense in any diet)
Histamine diet makes sense from medical view -if- MCAS is primary Histamine related, but in many cases it isnt. Doing bloodwork that measures mastcellmediators like Histamine, Leukotriene, Heparin, Chromogranin A, Prostaglandin (D2), Serotonine,
TGF-ß + all the other relevant Cytokine/Interleucine may give the necessary answer(s).

MCAS diagnosis
Before starting any expensive cytokine bloodwork,
you can as first fill out a mastcellmediator syndrom questionnaire, if you are over 14points there is serious suspicion for MCA and you should in such a case do bloodwork to check out if mastcellmediators + Cytokine are out off range, if they are out off range a CD117 stomach/colon biopsy is needed.
If a stomach/colon biopsy shows high CD117 cluster counts or the bloodwork any Tryptase levels over 20, it could also be Systemic Mastocystosis , in such a case ppl should undergo bone biopsy to rule out KiT mutations.
If Tryptase is still moderate increased and the stomach/colon biopsy didnt show any dangerous things, having a systemic Mastocystosis is very rare and usually in such a case a bone biopsy is not required.

There is no cure for primary, enviroment or ideopathic MCA and it can still be treated symptomatic based,
just in case off a secondary MCA there is cure. So if ppl. have MCAS it is wise to subtype it, the catch:
There are still very very few experts able to do this.

In the event of a MCAS diagnosis
besides the Afrin Pdf (you will find it at the PR-MCAS subforum)
the attached pdf about urticaria may be an additional starting point, it lists few common antihistaminika and what Cytokine the drugs can block. The other (image) attachment contains a list off some Cytokine remodelling herbs, but keep in mind not all listed herbs are good for MCAS. Exspecially herbs (also drugs) that boost the immune system should be avoided.
Generally speaking as more + harder a herb/drug pushes the immune system as more worster it is usually for (most) MCAS sufferers.

cytokine modulating herbs.jpg
 

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MartinK

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Hi all, thanks a lot for all help and support!
really hard days here, but I try to stand it...

@Wishful
That's what I was afraid of! But the fact is, I did many, many drugs in the past for Lyme and viruses without bad reactions of hard PEMs like now. But maybe it was too much...

For which drugs, for example, have you observed these cases with a disappearing effect? In my case its HBOT - first time it was a miracle and my all symptoms was almost gone and I could walk and work, and the second time, only minimal effects.

I definitely want to try again Nalcrom (cromolyn), whether it was him or not, who makes me worse...or peptides...
But will start slowly with a smaller dose...

The last time I did 3x 300mg/day and 20mg with nasal version.

For me, every deterioration makes PEM and more inflammation - nothing more symptoms! I think PEM and inflammation are very related in my cause... and interact with each other - more inflammation = worse and longer PEM.
In 6 years I have not figured out how to influence it!

@leela ...hi there! :) check your inbox...last week I wrote you a long message about our similar problems ;-)

I have given up on everything now! Just relax, finding some energy, but from lying on the mattress my whole back burns... my inflammation is extremely high right now I think.
Never the whole dose again! I was impatient, longing to improve before summer...

Allergy was always a problem to me - from birth lactose intolerance (discovered by KDM in 2016!) from my age 14 -15 allergies to pollen and some foods... but no doctor dealt with it much, and I was a young guy who trusted healthcare. It's just a question of how much all allergies have affected me over the years...

I already have a recipe to Ketotifen ;-) How long did it take you to get to 4 mg?
I rarely have gastrointestinal problems. but the last time was after disulfram, which I stopped tolerating...
your approach is exemplary! Thanks! :)

@Hd-x
thanks a lot for lot of great information!
I did many tests available in Europe, mostly in Belgium with dr. KDM. You are from EU country? What laboratories do you use?

As far as I know about inflammation, this makes me problems:
IL-8
PGE2 (related with LPS)
Zonulin
Kynurenic Acid

EPX/EDN (eosinophil protein x / eosinophil derived neurotoxin)

TGF-ß and other cytokines are fine, in normal. And I have borderline diamineoxidase. What do you think about it? Lot of this things may show leaky gut / SIBO, but I did a treatment for it for 2 years, and mainly I never had any major intestinal problems that would indicate a problem.

Did you consult MCAS with someone good, educated?? Or...best sites to follow?

The fact is, my feeling is my inflammation is overwhelming! And I do a lot of things to stop it at least a little...without success. Lot of Curcumin/Turmeric, Quercetin, diet, and now also N-acetyl-glucosamine (thanks @Hip !)

I've never done a biopsy, it's hard for me to get the test here.

I'll look at all those documents, thank you a lot, great!

And...anyone for MCAS tried NeuroProtek or Luteolin in other form?

Thanks a lot!
Martin
 

Hd-x

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@MartinK
They are MCAS criteria out there and you dont fullfill them with just IL8.
However so, under some circumstandings MCAS can also be diagnosted if there is a profen (or strong suspicion) for a so called "Mastcellmediator-Syndrome" + promptly relief under H1/H2 antihistaminika,
but such kind off MCAS diagnosis without doing any biopsy/bloodwork as proof,
will usually not be accepted by any Dr. nor Specialists, because it could also be any kind off autoimmunological allergy diseases like hay or whatever so, if there is relief under Antihistaminika.

What laboratories do you use?
https://www.imd-berlin.de/en/laboratory.html
Did you consult MCAS with someone good, educated??
I privatly visited in past a Dip. Ing. laboratory medicine immunologistan for special Immune Systemediagnostik.
It wasnt a practicing doctor and cant be hired, it was an Immunologistan that give lectures about illnesses like MCAS at doctor congresses - so yes, I would say she had knowledge.
I just only got the contact, because someone I know had private connections to her.
I am in the meantime registered on a "Centre for Rare Diseases" and hope that they are able to run the necessary test kits to subtype my MCAS.

I would advice to visit such a centre, if ppl. want to rule out MCAS.
If such centres are also later able to subtype MCAS, I can currently not say for sure and have even waiting for results.

And...anyone for MCAS tried NeuroProtek or Luteolin in other form?
https://forums.phoenixrising.me/thr...vailability-and-different-formulations.78979/

Or...best sites to follow?
There is mastattack.org & mastzellaktivierung.info with some good basic informations, but those websites dont go deeper into some MCAS details/treatment options. Most information I have is handwritten material from the Immunologistan, there is also some German language CME-certificated MCAS material availible.
 
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Wishful

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For which drugs, for example, have you observed these cases with a disappearing effect?
Three treatments that gave me temporary remission the first couple of times: prednisone,l cumin, and T2 (3-5 diiodothyronine), then stopped having that effect.

LDN worked well for blocking neuropathic pain for a year or two, then I no longer had the pain.

I became sensitive to meats (actually the fatty acids) for a year or two. Then I discovered that adding some carnitine allowed me to eat meats without problems. After some months of supplemental carnitine with meals, I no longer needed the extra carnitine.

Cumin worked very well as a PEM blocker for about two years. A couple of months ago I tried going without it, and found that physical exertion no longer triggered PEM.

T2 provided a different benefit after the initial remission: without it my baseline symptoms dropped to a worse level. Taking one dose every 21 days prevented that worsening. I tried going without that a couple of months ago and found that the expected worsening didn't occur. This change seems to have occurred around the same time that cumin stopped being needed. Coincidence?

Apigenin gave me a small but noticeable reduction in brainfog...for a few months, then stopped working.

Something in lettuce (I assume lactucin) gave me a slight improvement in how I felt. I think that effect only lasted a few weeks.

I had my ME symptoms flare up 20 minutes after eating quickly-digested carbs. Taking BCAAs would block that, or at least delay and spread out the increased symptoms. I haven't noticed that flare-up for years, but I mostly still avoid highly-processed carbs. I haven't tested my reaction to those recently.

Evening Primrose Oil reduced my insomnia (not sure if that's ME related). I think that's stopped working, but I'm still in the 'avoid it to see if my insomnia returns' phase of testing.

I think that's all of the things that have worked for me, even if briefly. I presently have no treatments that work. :grumpy:

The treatments that did work, were wonderful when they did work. :):):)

Some of them may have stopped working because they caused permanent cures! :thumbsup::thumbsup::thumbsup:
 

MartinK

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@Hd-x again, thanks a lot! I'll probably call Berlin lab, because looks like they are able to consult results and specify the diagnosis better (and it's near, I'm from Czech Republic)
Dr. rer. nat. Brit Kieselbach may be the way it seems...
You consult yours results with someone from lab? I know I need some new professional insight into my situation.

Sure, I'm KDM patient, but he still see only Lyme, this can be very dangerous because false positivity is not impossible. My root of problem is probably somewhere else, because none of the treatments for Lyme brought results, but mainly also no herx-reactions that indicate its burden and positivity!

I want to go mainly on MCAS and autoimmune ways...

Centre for Rare Diseases...Birmingham? This looks very good! They do remote consultations for bedridden patients? Do you know any other patients from here with experience from Rare Diseases Centre? Thanks!

This is interesting, @Wishful !!!
Prednisone - any side effects? I read here some interesting post about this drug. For you - do you personally put it among the safer or dangerous ones in terms of side effects? I know side effects for Prednisone, but CFS patients are others...

I did LND for one year, when I fell down to CFS. It was from one Lyme specialist here in Czech. No effects for me. You did how big dose? For me, 5mg I think.

Please, what is T2? Tylenol?

Great inspiration... cumin effect for you is amazing. You know more people from forum, who benefit from this like you?

By the way, what level are you at now? ;-)
 

Hd-x

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Centre for Rare Diseases...Birmingham? This looks very good! They do remote consultations for bedridden patients? Do you know any other patients from here with experience from Rare Diseases Centre?
I unfortunatly dont know personaly any other ppl. from DE with MCAS that have undergo the full MCAS diagnostic tools. What I still know there were some clips posted on YT where MCAS sufferers
complained that they still got diagnosed MCAS, but were leaving the clinics without getting any therapy planning nor prescribed medication.
I was not in the same, but in a somewhat similar situation that local Dr had no clue about MCAS & how to subtype it, so I decided to go to a centre off rare diseases.
If I could afford the travel, I would visit the clinics in Erlangen (Prof. Raithel) if it seems he is obvisiosuly one off the best avaibible MCAS specialists out there. University Bonn did also have with Prof. Molderings a great MCAS scientist from the Mastozystocis research group, but patients usually don´t get access to members off the Mastozystocis research group.
It may be possible that they may make in few rare cases an exception, but this is are usually real worst MCAS cases that cant eat anymore anything, weighting around 35kg or so and are in urgent need to get a Stage IV Chemo therapy because off MCAS if it cant anymore controlled by stock mastcell damping therapy.
 
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Wishful

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Prednisone - any side effects?
I think it has horrible side effects if taken for long. I only got a second prescription because my doctor was away and I convinced his replacement to write a renewal. Prednisone gave me full remission both times, which faded quickly after tapering off. Some time later I convinced my doctor to give me another try, and it didn't work. A couple of years later I tried it again, double dosage: no effect. I don't see prednisone as a practical long-term treatment. It was wonderful for proving that I could switch back to the healthy state.

You did how big dose?
For me, LDN worked best at 2.5 mg taken sublingually (needs only ~60% of the swallowed dosage). It blocked the neuropathic pain, but didn't do anything else.

Please, what is T2? Tylenol?
T2 is a thyroid hormone: 3-5 diiodothyronine. T4 and T3 had no effect on me, but T2 was very effective. I just needed one dose (100 mcg) every 21 days. Taking more didn't help, and taking it for longer made it stop working.

Great inspiration... cumin effect for you is amazing. You know more people from forum, who benefit from this like you?
Nope. I posted a thread about it, and no one has reported a similar benefit from it. :(

By the way, what level are you at now? ;-)
Mild, as I have been since it started. I don't have any physical limitations from ME; it's mostly mental lethargy preventing me from doing more. I've been doing a lot of digging lately because it's mindless activity with satisfying results (can see accomplishments).
 

MartinK

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@Hd-x Thanks a lot! I just started Ketotifen and Aerius, I wonder if there will be any noticeable difference from Cromolyn, and especially whether it would help me show if my inflammation is from MCAS.
Maybe I will try also NeuroProtek and TUDCA, but this time I'll start one by one, carefully...:)

And sure, I want to consult with some specialist remotely. I am also interested in opinions if Lyme can run MCAS.
Because there must always be some clear cause I think...

@Wishful I read some really crazy stories with Prednisone. What do you think about the effect of action? I mean, if it can clearly show where the problem comes from....what cause patients CFS.

If I understand this well for this species, it can show quite accurately whether the main problem is:
- autoimmune because immunesuppresion
- inflammation (but from what...)
- insufficient adrenal glands

Did you have any findings in thyroid or adrenal tests?
In my cause, only low cortisol in morning.

Cumin tried!!! :)
But no effect or really small...
But what worked really great for me with the last PEM in Friday-Saturday was to lie in a breathable lounger instead of in bed! Huge, really huge difference!!!
It cooled my back and legs and relieved the inflammation.
But bad fact on this is, my inflammation must be really big! :-/ And for sure, one of main things what cause me this hard CFS...

I'm glad you can handle everything! I was on the same page three years ago before everything started to get worse...
 

Hd-x

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I just started Ketotifen and Aerius, I wonder if there will be any noticeable difference from Cromolyn.Maybe I will try also NeuroProtek and TUDCA, but this time I'll start one by one, careful
Chromolyn pills work primary local in the gut whereas Ketotifen is systemic and able to cross brain/blood barrier. Quercetin needs a carrier to enhance bioavailability - I found NeuroProtek (was it this Que with olive oil, or so?) overprized if there is no data if the combination really works.
 
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Wishful

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I read some really crazy stories with Prednisone. What do you think about the effect of action?
I assumed it was suppressing my immune system. I still think that my ME symptoms are mainly due to incorrect levels of kynurenines, and prednisone likely alters that. I don't believe that immunosuppresion is a factor in ME, since my immune system seems strong. I don't know of any connection with abnormal hormone levels. I do think that the immune system can get stuck in an abnormal activated state. Our immune systems are complex, with lots of feedback loops, interacting with each other. There seems to be lots of potential for those loops to get stuck.

For me, an important aspect is how ME can switch state from fully ill to fully healthy over a matter of hours, and then switch back just as quickly. That rules out a lot of possibilities, such as microbial infections, or permanently damaged cells. Prusty's recently released paper claims that HHV-6 is involved, and that it alters the immune response of mitochondria. If so, that could be biasing the immune system to locking up in one state. Some factors, such as prednisone, might knock the system out of that state, but the bias to moving into the locked-up state remains, and we end up switching back to that state.

If the HHV-6 link is verified, then researchers can test that model with prednisone, cuminaldehyde, or whatever else works for some PWME, to see if that explains how/why they work.
 

MartinK

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@Hd-x I'm starting Ketotifen today! :) I hope it helps! any experience from someone, how fast should it start working?

NeuroProtek is with Quercetin, yes, but the interesting thing is Luteolin. I heard first time about it HERE:
http://simmaronresearch.com/2018/09/brains-mast-cells-causing-chronic-fatigue-syndrome-mecfs/

@Wishful it is in some context with Kynurenic Acid? I have really high this acid from blood tests...and you?
by the way, interesting thoughts...
I'm interested about that article from Prusty...any link? Thanks a lot!

Maybe it's worth considering trying Prednisone for a few days to see what happens! Perhaps it doesn't have much chance of causing side effects in a few days... I've read a few stories here, but most of the problems were really from long-term use or high doses...

But all right, now I'm starting Ketotifen.

Today, I also found out that we have a project in our country (Czech Republic) that works with foreign clinics and centres for rare diseases. Perhaps I could get some good doctors...and some new help for me!
 

Wishful

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Hd-x

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I'm starting Ketotifen today! :) I hope it helps! any experience from someone, how fast should it start working?
Well, a good question one MCAS criteria that under H1/H2 some prompt symptom relief happens,
My personal expirience that at best few scattered hay fever like symptoms quickly improve, but not all the other much more concerning + disturbing symptoms that hinder us at most.
It took several month in my case just to find a drug combination against the nausea & vomitting, again several month to fix somewhat the itching, some other symptoms till today not gone.

So my conclusion, a prompt relief can only happen if you get a 100% working medication,
but finding this is a pretty difficult (in some MCAS cases) nearly impossible task.