u/Aggressive-Mood-50

I’ve had dysautonomia, GI issues resembling IBS, and constant fatigue since I was a teenager. I was told it was anxiety. I was told I was on the NCAS spectrum and given an epi pen “just incase” but my reactions are normally high HR and diarrhea and I usually wait them out and have never needed epi.

Recently I’ve had lower back pain that has now turned into pain in the back of my pelvis that wraps around to my front and goes all the way down my upper thighs to my femurs. It’s like I’m aching all day. I sleep 12+hr a day.

I got stung by 10 bees last weekend and started feeling chills and tired and thought it was just my issues acting up so I went to bed (my fatigue has been bad lately along with joint pain. Working with rheum). I woke up sweaty and cold with a fever of 101.5 and took my regular antihistamines, hydrated aggressively and went back to bed.

I woke up at 10am with a vague feeling something was wrong had a hot flash took off all my clothes and ran to the toilet. I now KNEW something was wrong got an intense feeling of impending doom started to projectile vomit yelled for husband to grab epi pen and called 911.

Medics said I was safe to go to urgent care by car. Urgent care freaked out said I looked like shit my BP was low HR 150 and transferred me by ambulance to hospital ER. ER did nothing but swab me for Covid and RSV (negative) and condescendingly tell me not to use my epi because I still had an airway.

Went home and slept for hours.

It’s now 3 days later and I’m only just now getting back to baseline. And my baseline seems to get worse and worse- I rarely leave the house.

I have an urgent referral set up with allergy and my appointment is June 17th. My functional med doctor is hopefully going to write me a referral for hematology this Friday but I called today and they’re booking 8-10 weeks out.

I am miserable I just sleep and work. I rarely leave the house. My pelvis feels heavy and achy and I occasionally get a nice stab of bone pain on either side that lasts less than 30 seconds but jolts me.

Meds are currently 100mg sertraline 1x daily, 20mg Zyrtec 20mg Pepcid 1mg Ketoficen 2x daily. I have sodium cromlyn but my fatigue has been so bad that I’m not good at mixing it up daily and drinking it but it did help when I started it.

Any suggestions to be less miserable? I mostly sit under a heated blanket and sleep 12+ hours a day.

So after a really shitty weekend where I thought I was going to die I decided to cancel work trip and focus on my health because eating is a a struggle right now and I can’t travel/sustain a socially acceptable appearance outside my home with current energy levels.

In between sleeping and coordinating my impromptu PTO and coordinating with work I was researching, following up with my PCP, and getting follow ups with specialists sorted out. First off- kudos to my rheumatologist who listens and is amazing and within 15min of the practice opening had set me up with an allergists referral in his practice. Follow up is scheduled for 6/17 and I’m excited.

PCP follow up was meh- she didn’t renew my epi prescription because she said it didn’t sound like anaphylaxis because no airway loss. But she did listen and send in a script for a shitload of blood tests for bee venom allergy ect and make sure I had already coordinated an allergist referral. She’s always been kind and listened to me but she is a general practice NP so not super specialized but great for ear infections, bronchitis and upper respiratory, ect. And always willing to listen and learn from my crazy ideas so 2/3 ain’t bad.

But while I was researching I came across something. Apparently severe delayed bee venom reactions can be caused be people with autoimmune issues- I’m already barking up that tree with my rheumatologist with an MRI for suspected spondylitis/AS on Monday. That could cause it. But in my conversations and research I kept circling back to mastocytosis.

Specifically, Indolent Systemic Mastocytosis or MMAS (milder form, less criteria). Basically, my mast cells may quite possibly be ruining my life and I had no idea. My functional med doctor and I thought we ruled this out because my serum tryptase was in normal range for the past 2 years. But it turns out you can have ISM or MMAS AND STILL HAVE NORMAL TRYPTASE.

And one of the hallmarks of ISM/MMAS? SEVERE ALLERGIC REACTIONS TO BEE VENOM. WTF!?!

I kept looking into symptoms and it all lines up. The years of fatigue, GI and IBS like symptoms, dysautonomia, tachycardia and adrenaline surges, histamine sensitivity, flushing- it’s all me! It all paints a picture!

I was shocked.

Anyways there’s 4 criterion to determine if it’s ISM or MMAS. MMAS is basically you have some but not all and ISM is 1 major and 1 minor criterion.

The only downside is tryptase is the easiest one to test. I’m going to have to get a bone marrow biopsy to figure it out. But I’ve had a spinal tap before and it wasn’t pleasant but it didn’t traumatize me or anything it was like whacking your funnybone in your spine. I’m going to ask my functional med doctor to order the one easy genetic test and then follow up with the allergist in my health system who isn’t telehealth to ask for the bone marrow biopsy on June.

I’m just blown away that after 5+ years of searching for a diagnosis it happens like this. All because I made a stupid decision to try to become a beekeeper and then almost died because I bought a crappy bee suit on ebay and the bees got in.

I thought I was signing up for a friendly symbiotic relationship with the bees and fresh honey, but those little bugs may have solved a nearly decade long medical mystery!

Also another update- my husband has ordered a proper bee suit and insists on taking over all beekeeping duties until I figure this out and has been checking in constantly while at work to make sure I’m good and my mom called me twice and my MIL and SIL are around the corner and would come if I called.

I haven’t even processed the fact that there’s drugs and treatment for this yet- I’m just blown away that I may have a diagnosis. I guess God really does use your stupidity in good ways.

Well that was infuriating.

I got stung by 10 bees yesterday and was meh. I already have suspected autoimmune issues and was having chills/coldness last night and thought it was from that.

Today I woke up with HR jumping to 150s and cold and hot flashes- temp would be 101.5 and then drop and leave me freezing. I thought I was fine until I was sitting on the toilet and started to get hot. The kind of hot that makes you strip off all your clothes and feel like you’re boiling in my skin.

I stripped off all my clothes and was violently sick into a bucket between my legs. I yelled for my husband and my epi pen and he came in and i dialed 911 and handed it to my husband while I continued to be sick. I thought I was going to lose my airway and came very close to using epi pen.

Paramedics came and said I was stable- HR and O2 good, blood pressure high but stable. They told us to go to urgent care. We go to urgent care and are brushed off by everyone until a frantic PA runs into the room and says we shouldn’t have been brushed off, my BP is low and my HR is 150s when I’m standing and she wants me to use epi and go to the ER.

We compromise that I will use epi at the ER but she won’t let me have my husband drive me so I’m transferred by ambulance.

ER checks me in and ignores me for hours because vital had stabilized and tested me for RSV and Covid. It’s like they didn’t know what anaphylaxis is outside of throat closing.

They refused to draw tryptase when I requested it and instead said I needed to see an immunologist to get an order on hand.

Meantime I haven’t had a reaction this severe in years.

Anyways I went to the bathroom stood up and my vision blacked out. I feel exhausted and miserable I’m still supposed to leave for a work trip today (now looking like tomorrow) and idk what to do or say.

ER said NOT to use epi if it happens again and refused to write me a prescription for new epi (mine is expired).

I hate everything and want to go home and sleep for a year.

Got stung by 10 bees yesterday and I was cold with chills but no airway symptoms for me which is normal. I wake up drenched in sweat and alternating between hot and cold flashes and had a fever of 101.5. HR jumping all around but I figured it was just histamine dumping and took my regular meds and antihistamines and had some Powerade to try and flush it out.

Flash forward to 10am- I have the WORST hot flash and yell for my husband. I was trying to poop but I grab a bucket and puke violently. My head is about to explode HR 170s so warm and sweaty feel like I’m dying.

He gets me a wet cloth and at this point I think I’m about to lose my airway so I tell husband to grab my EpiPen and dial 911. They come I don’t lose airway or slam epinephrine so they let me sign myself off if we promise to go to urgent care. We’re headed there now and I’m starting to feel shitty and warm again.

I’m just gonna give a play by play of the issues, what the judge says, and the opinions of both sides and my opinions.