MCAS - Mast Cell Activation Syndrome Hi poiscenter community,
I've been on this forum for some time and like many of you, I was desperately looking for answers to this such debilitating disease so called POIS. Today I'm happy to report back my findings how I fixed my POIS after many years of trial and error of supplements and poured so much money and time visiting variety of doctors because I knew if I can't rectify POIS I will forever be subdue to this illness. I would feel it would be a disservice if I don't bring back this report because I know some members here are much more academically verse or researchers studying on this topic who might find this information invaluable and potentially connect the dots. So just a disclaimer, this is based on my own experience and just a guy that found what works for me.
MCAS is not a new topic. Quantum has list of supplements that helps with MCAS. There is a user caveeater who takes cromolyn which seems to help him/her. Cromolyn Sodium oral is generally prescribed to people with MCAS and reported mostly with positive results.
Ok on to me. I seen several allergist and I'm going tell you right now that MCAS is out of their knowledge scope. Although my last allergist was really cool and willing to work with me and she was also younger than other previous allergist I saw. I think MCAS is becoming more prevalent since its rare disease mentioned at
https://rarediseases.org/rare-diseases/mastocytosis/ so therefore she has some inkling knowledge. But at this point I was already contemplating seeing an MCAS specialist because my time was limited and didn't want to spend anymore time messing with trial and error and rescheduling every 6 week follow up. I was so close on giving up, it's either this or never. Thank you for trying to help me Dr. R.
So now I have to find a MCAS specialist. I found my MCAS specialist through
https://tmsforacure.org/physician-database/. Some of them don't take insurance so it can be stupid expensive. I called around to check the pricing for their services. 400$, 800$, and $2000! *cough*afrin*cough* So I'm like
****... but
**** language, please it if I'm going this route I better do research which doctor is recommended on the MCAS community. I went on
reddit.com/r/mastcelldisease community to ask around and ask questions about their diagnostics and symptoms. The word
histamine keeps coming up and this is the same word that comes up repeatedly in this forum. Do you see the connection?
Alright, so this guy recommend this specialist who doesn't beat around the bush and reasonably priced based on the severity of the symptom. This doctor resides in NY which I'm very lucky cause I live on the east coast so that I can make the initial mandatory visit with ease.
Believe or not, I did not mentioned about POIS. I knew for the fact throughout my life, what was affecting my POIS was also causing other symptoms but I will speak to him soon regarding POIS since the treatment has helped me immensely.
Brain fog without O
Nasal congestion
Histamine reaction to certain foods, more prominently fermented food aka yogurt, milk kefir, sauerkraut, etc
Histamine reaction during exercise, even just walking
Sensitive to heat therefore increased sweating
FatigueThe specialist was a awesome guy and can tell that he revolves around helping people with MCAS. Since the specialist doesn't take my insurance but the cost was actually lower than I thought because I think MCAS has other categories of symptoms involving severe skin disorders. He ordered the test I needed and most of the results I got back are normal except for high
Immunoglobulin E but he mentioned people with allergy is normal. The test that can* confirm MCAS are,
1. Tryptase - Normal
2. N-methylhistamine - Normal
3. 11B -Prostaglandin F2? (11B-PGF2?) - could not be measured in this sample due to the presence of an unidentified interfering substance. SMH.
I suspect that I might have high prostaglandins.
I put
can* cause there is no standard test for MCAS, which means you can still have MCAS symptoms even if these test comes out negative.
His first line of treatment was
anti histamine such as cetirizine or allegra, another form of treatment commonly used here for POIS. Now I starting to see the pattern here... I took cetirizine, fexofenadine, pepcid and montelukast for few weeks but not much improvement except extreme tiredness from waking up from sleep. I can barely move from the bed and my arrival to work is getting late so I spoke with the Dr that I can't take this everyday, especially there isn't any improvements although I still taking cetirizine but I'm confident I don't need this anymore so I will mention this on my next appointment. I also take palmitoylethanolamide and quercetin, same one Quantum is using but I think quercetin also doesn't give any improvements which I consider also ditching.
K now if you spend enough time around the MCAS community,
Cromolyn Sodium comes up frequently as the holy grail solution to MCAS. There are 2 forms, oral and nose spray. Oral is prescribed and super expensive, like $600-$1000 for a month supply if your insurance doesn't cover it. Holy f*ck. Again it's either me going all in or live like this forever. Alright so I checked the cromolyn nasal spray version that is OTC which cost like 10 bucks so might as well try it. On the second week of daily usage, my nasal congestion cleared up and my mind became clear. Bingo. My brain fog disappeared, like there is no more clutter or felt I just cleaned up a dirty living room and now I got all this space to work with. Ready to think and ready to learn. That's my metaphor so I'm not expecting you to understand it lol. But this effect was temporarily and had to re apply every few hours. By this point I knew the oral version is the one I needed but do I need to pay out of pocket?
On the next appointment I told him about the positive results I got from the cromolyn nasal spray and requested for the oral version. I looked this up if this medication was covered by my insurance and it was not so he has to write a letter to the insurance to get it covered. Eager for the response from the doctor, I unfortunately was declined. Sigh* I emailed the doctor. Look, I didn't come all this way suffering throughout all of my life and not try oral cromolyn since the nasal spray was literally the only medication that yielded the best result. Prescribe me anyway even if it cost me $1000. Like I said, I'm going all in. After that I was already thinking how to change insurance which I know it's going to cost me a pretty penny since I don't have a good health benefit from my job. Great... I might even need to change jobs... Nice...
Then later I received a reply from the doctor and he bust out a trump card! Coupon for oral cromolyn sodium for month supply for
$160. My mind exploded. The coupon is from
goodrx.com. I've been scouring the MCAS community and no one, at least from my search mention this website. I don't know exactly how it works but its only accepted at major pharmacy chain stores like Rite Aid or CVS. Don't get me wrong $160 is still expensive but chump change compared how much I was willing to pay.
This oral cromolyn sodium comes in ampoules, a solution you mix with water during an empty stomach therefore its best to take in the morning and some hours after eating before bed. You take 1 ampoule on the first week, 2 ampoules on the second week up to 4 ampoules. I notice an instant relief on the second day. You know the feeling when your limb falls asleep and when it comes back with tingling/pinning sensation? I felt that on the right side frontal lobe, it's really subtle but it's there and that's the last time I felt that.
It's been 3 weeks. Major improvement on every aspect. My brain fog is literally gone. My brain is lock n loaded on standby ready to work. I actually feel bored if my brain is not active and have taken the opportunity to learn many new materials. Now for the grand finale you've been waiting for, what about POIS? On the first weekend, 3 O. Nothing. Third weekend, 3 O. Nothing. No symptoms at all. Where do I go from here? I was locked down most of my life due to the crappy POIS where my choices in life were severely limited. College life experience... potential significant other... potential job prospects... they all have been deviant by POIS. For all the POIS suffers out there, I understand how doctor don't take it seriously (not their fault), I understand its traumatizing and I understand your pain and its draining but I'm letting you know there is a treatment.
I wanted to give up. so. many. times. failure after failure. At the current POIS research rate, you're going to have to do all the leg work cause I read somewhere that a member was waiting so far for 10 years for a POIS remedy and that's why we have this community, a unification to fight an common cause.
The chain's on my ankles are broken and now it's up to me to make up all the time I lost. But where do I go? It's like you've been in jail for 20 years and suddenly you're free. Wherever that may be, it's a new beginning. Due to the positive results of the oral cromolyn, my doctor is in process of sending the letter to try to get the insurance to have it covered again. Hopefully it pulls through.
Information regarding to MCAS,
https://www.aaaai.org/conditions-and-treatments/related-conditions/mcashttps://arupconsult.com/content/mast-cell-disordershttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
