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Waydarer t1_ix47dyi wrote

I’m pretty sure I have something like this going on. 6+ months of chronic asthma, spitting up mucus, fatigue etc.

I’ve been to the hospital 3 times, and a stand-alone pulmonologist - no one can find anything wrong, meanwhile I feel like I’m dying.

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Skud_NZ t1_ix4r7sd wrote

I heard a story about a guy who had been feeling like crap for a while. eventually started coughing blood. Doctors found a tumor and did a biopsy and found a fir tree seed had germinated in his lung. He was a botanist and made a full recovery

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Waydarer t1_ix54ych wrote

This could be it.

I totally have a cactus in my chest right now.

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scootunit t1_ix5lenm wrote

Realistically that's probably unrequited love festering.

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Lovat69 t1_ix61pos wrote

A fir tree was literally growing in his lung? Yikes. I didn't realize trees were carnivorous.

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muffinslinger t1_ix5uzp4 wrote

Dude, this is me! I caught covid in February 2022 and then all of a sudden had a cough that went on for 5+ months, constant feeling of cactus/irritated feeling bronchial tubes, little to no sleep due to waking up choking. Finally went to doc, and they diagnosed me with asthma (mind you, I was perfectly healthy before that February, never had asthma before) I saw a pulmonary doc as well. Nothing. Its slowly driving me nuts. I'm not the same person that I was beginning of this year.

I've bought mold tests and plan to test around my apartment as it is very old and poorly sealed/insulated. I see random dark spots appear in my shower so I already swabbed them. 2 more days until I find out if it's black mold!

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Waydarer t1_ix5wsdq wrote

Yep, I wake up choking every night. I get about 2 hours of sleep in between fits.

Let me know how you make out with the mold testing. I know my place has flooded before - there could be mold behind/under things.

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puterTDI t1_ix6t7wn wrote

You might want to look into gerd or sleep apnea

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muckpucker t1_ix65ftr wrote

I had the same thing and it turns out that I was having an allergic response to amlodipine, a blood pressure medication

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grumble11 t1_ix7rlkk wrote

Asthma is kind of a cop out for a lot of doctors. Oh, irritated respiratory tract? It must just be sensitive, too bad, here are some puffers. Meanwhile you’ve got a fungus trees growing in your lungs they don’t care to look for

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WhiskeySpaceBear t1_ix4dgu3 wrote

Maybe you developed a food intolerance. One's immune system can change as they get older (or you are just older so it's hard to shrug off symptoms) and consider that something your eating could be triggering a low grade chronic immune response. It happened to me with wheat (surprisingly it's not gluten as I can eat barley she rye).

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terrytapeworm t1_ix4z5yl wrote

I had this happen with gluten and then, suddenly, a bunch of other foods (sodium phosphates, grapes/apples, natural flavors, almonds, etc.) and my symptoms got worse and worse. Eventually I had extreme high and low blood pressure swings, difficulty breathing, kidney problems, chronic dehydration, my eyes started getting worse, my skin was bright red and painful, every cell in my body was in constant pain, cluster headaches (aka suicide headaches), edema, my teeth essentially disintegrated, I couldn't leave the house if the sun was out or the temp was above 78 degrees without almost passing out and dying, I would also get an enlarged spleen? Or something in that area? Every few days. So basically just any symptom, I had it. Could barely stomach water and definitely shouldn't have been working a physical job.

Turns out, it wasn't actually autoimmune per se. It was MCAS, which means I was actually experiencing anaphylaxis and other serious symptoms any time I came into contact with a trigger (and I was developing new triggers every day).

So aaanyway, and I hope you don't mind me using your comment to spread awareness: If anyone here is being plagued by constant, seemingly-autoimmune symptoms and getting nowhere with endless blood tests and referrals, consider that it may be MCAS. I wouldn't have known that's what I have if someone hadn't commented and said "Hey, that sounds like the disease my sister has," and I was looking up my symptoms every day for 2 years without ever hearing about MCAS, despite having just about every symptom. There's no definitive test for it and doctors constantly use the wrong information (for a similar disease called mastocytosis) to try and test for it, but if you're, like, dying like I was, you could try taking an H1 and H2 over the counter antihistamine and see if it helps with your symptoms, and then use that information to work with your doctor.

Anyway, thanks for giving me a chance to piggyback off of your comment!

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nomellamesprincesa t1_ix6y5fy wrote

I had considered that, because I do in fact constantly have autoimmune-like symptoms that they can never find a cause for. But my doctor seemed to think MCAS was not a thing? Also anyhistamines don't seem to go much of anything for me, but maybe they're the wrong ones?

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terrytapeworm t1_ix8qd7s wrote

A lot of doctors don't think it's real because there isn't a definitive test for it. IIRC, there are possibly thousands of places on the KIT gene that can have a mutation resulting in MCAS, but they can only test for like 8 of those locations so far. Doctors also don't always consider symptoms a criteria for diagnosis, despite how severe the symptoms are.

If at all possible, I'd go to an allergist. It definitely took me several "second opinions" because I had some doctors try to tell me that I was dying because of "anxiety" and then attempt to give my treatment for fibromyalgia which obviously didn't work.

And it is possible that you could be allergic to certain antihistamines! Medication is one of the top triggers for MCAS. I myself recently switched to a compounding pharmacy to get my meds hand-made because I am allergic to so many things (and it was surprisingly cheaper than regular pharmacies). Also a lot of OTC antihistamines have dyes and gluten in them, which are top triggers. So I wouldn't totally rule it out yet, it's definitely hard to pin down.

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nomellamesprincesa t1_ix8u0mh wrote

I did get a pretty extensive allergy & asthma test recently which showed nothing wrong, would something like that show any results? I also went to an allergist years ago, he said I had an intolerance for biogenic amines, but then told me to cut out a bunch of foods that definitely aren't triggers for me. I had a bad bout of IBS at the time and there were things that clearly made it worse, but I think it was mostly stress-related, I was in an unhappy relationship and once that ended, so did the IBS. My main symptoms now are near-constant post-nasal drip that I've had since I was 18 (for which the only possible correlating factors I've found were starting birth control, but I've since switched birth control and it's made no difference what so ever, and moving to the town where I still live now), and constant relatively minor inflammation issues, like I've had a bunch of tonsil infections the past few years, some bouts of food poisoning that wouldn't go away on their own, and cold sores that got so bad I'm now on permanent meds because I kept getting eye infections etc.

But yeah, I'm keeping it on my radar just because everything else has been ruled out by now, I think. They've checked my immunology as well and found nothing odd.

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WhiskeySpaceBear t1_ixbwou1 wrote

No worries. I actually thought I had MCAS but I didn't mention it because it's not really easy to diagnose and because it's not really necessary to confirm. I had an "immune system test" by everlywell and it said a few things but said, interestingly, wheat but not gluten. I tested it. Wheat makes me sick, primarily asthma and GI stuff, barley and rye do not. I used to think I was gluten intolerant but I'm not technically. I say I am because it's easier to explain to a waiter or acquaintance than the true details. Eat what makes you feel good and avoid processed foods is a good model for health.

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drunkenly_scottish t1_ix4mou6 wrote

Been tested for COPD?

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Waydarer t1_ix554iy wrote

Yeah, all of it. The pulmonologist was thorough.

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PotatoBus t1_ix5al75 wrote

Hmm, sarcoidosis?

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Waydarer t1_ix5kvji wrote

Not that one either. We took (3) sets of X-rays over 6 months, and a CT scan to delve deeper.

Absolutely nothing.

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JJJ_Ranch t1_ix6u37a wrote

Did you have a CT scan? I finally had to have one in the ER because my lung collapsed. They called it an atypical pneumonia. I have been battling this since Nov 2nd.

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ShrubberyDragon t1_ix7lti3 wrote

Same, it's gotten so bad I have to use a rescue inhaler on the regular.

Problem is, when I use my rescue inhaler too much it weakens my esophageal muscles so I end up breathing stomach acid at night from my acid reflux so I end up in the hospital with asthmatic bronchitis...yay.

I have no idea what's going on but I'm pretty sure it's environmental, maybe mold in my house since we went to Nepal for 3 weeks and all of my symptoms went away. Days after getting home and they are back and getting worse every day it seems.

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NthException t1_ix8up9w wrote

If you haven't, check anywhere it could be damp/moist, I do remodeling and find mold in ac vents pretty often, which is bad because it circulates the stuff. Or even around the central unit. Can be tricky to find but sometimes I see it even in the weirdest places like on a tile floor underneath something. Under a sink or inside a window sill that wasn't flashed properly. Even small roof leaks that you don't know about can create black mold on the other side of sheetrock ceilings or walls. Look for slight staining. Black mold can be gnarly, and your description sounds like it could be. Especially if in addition to what you've said it's somewhat recently sprung up and getting progressively worse. I've had repeated exposure and it was aches, pains, fatigue, lower back pain, back stiffness and just a really out of it feeling/miserable mood. When I figured out what it was and took care of it I very rapidly felt 100%. Hopefully you figure out what it is, good luck.

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Ixneigh t1_ix7nga1 wrote

Was the house built on a toxic waste dump?

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Redegghead25 t1_ix8v7fg wrote

This happened to me when I wasn’t sleeping and was very stressed when my kids were very young. I was chest congested and sick for six months. Three specialists, two months of antibiotics, nothing worked.

Then I had a relatively stress-free. For a couple weeks and was able to sleep. I got better after that, and realized I was just dangerous sleep sleep deprived.

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