SO.......I was in the ER again over the weekend. For 7 months my now, my life stopped to a screeching holt virtually due to a sudden inability to properly exhale. My exhalation levels are less than 40% of what's normal & since then, nobody has really seemed to figure out why. I have NO history of breathing problems, but this did come on me suddenly after taking 2 rounds of the antibiotic, Amoxicillin for an apparent sinus infection last Feb.
Only two things since this nightmare began has seemed to dent this severe problem.
1.) 40MG's of prednisone for a 5 day run. By the 3-5th days it was a total game changer, to the point that I honestly thought I was getting my life back and getting back to work. Then....after the 5th day of the prescription running out, full remission to all the hardcore breathing problems. The hard cut, no taper didn't help matters either.
2.) A prescription for pharm grade anti fungal, Nystatin. First couple days, didn't notice anything. Then, in the 3rd, 4th & 5th days....REALLY noticed some great strides and breathing opening up for the first time in 6 months. After those first few days of big improvement, I slide back to the usual bs of tough breathing. Lost all progress on this med.
Since then, I circled back the pulmonary doc i've been working with and his theory yesterday now was as follows, and would love to know your thoughts:
He thinks that my initial sinus infection over the summer f*cked up and inflammed my bronchial tree....and that's it's a matter of getting them to all calm down enough so they can heal and breathing begin to resume normal. He speculates that for whatever reason, my irritated bronchial tree has never calmed down enough since this all began. He doesn't think it's classic asthma or a serious lung disease.
I asked him why the Nystatin worked for a few days, he said because anti fungals have an anti inflammatory property to it and that was that.
Previously, because the Nystatin seemed to be working, he speculated that I had a serious fungal/mold infection in my lungs....now since it's not working he's back peddled and changed his theory to the above.
I don't know what to believe honestly. The pulmonary doc seems to think this....he's passing me onto the braintrust of a well respected pulmonary group to try to further brainstorm this.....to see what the next action is to take.
He told me the best thing to do is stay calm and not do anything until i see this pulmonary braintrust in 2.5 weeks. He told me that even though it feels like i'm dying many times, i'm not. Re-assuring, sorta not really.
He says once lungs get provoked and irratated...it's hard to get them to calm down, which is what the next step in experts are for i guess, which seems to be out of his scope of what to do at this stage.
My thought has always been, let's get the Bronchoscopy (camera stuck down into chest to take a look around and lavage/culture samples) and invasive lung biopsies so we can take the guess work outta of this whole affair and treat it accordingly. For whatever reason, primarily because nothing shows up on my xrays, i've been having a hell of time trying to get this kind of procedure enacted.
I've been networking with people in the mold toxicity arenas, who concluded that i more than likely am a victim of black mold toxicity from my last apartment. In all fairness, the air quality in my last partment for 5 years was very damp, musty and poor...and there was some visible mold.
Which means, ZERO fruit or anything else that can be turned into sugar to feed yeast, fungals or molds in my body according to that whole community. Many people who've been exposed to mold toxicity have even started living in tents....and that there are literally like 3 doctors in the entire US who have the knowledge and experience to legit diagnose and treat these matters.
When i'm laying in bed, I can hear a constricted, noise every time i exhale before it stops me from exhaling fully and properly.
I know all drugs are bad, i never took them really...even medications before this nightmare began. But when you literally can't breath and your organs are really getting enough oxygen, you kinda freak out and don't care what it takes to get back on track. I literally have been unable to do anything for 7 months.
I'm so depressed, distraught & confused as what to do, how to eat or what's wrong with me!
My whole day is literally watching tv and not moving until i go to bed. The shortness of breath 24/7 is literally that bad. My whole life as i know it gotten taken away from me virtually overnight. Before this, i was mostly raw and hardly ever became ill.
If ANY of you have any thoughts, ideas or know of anyone that would be good to consult with about this, I would hugely appreciate it. Apparently, what i'm going through is extremely uncommon
Literally folks, I don't know where to turn anymore, i'm like running so low on hope at this point. I can't live like this and frankly, losing the will to. Please don't give up on me...I know it must be annoying to read all this.
Like I said any thoughts, suggestions, speculations, theories are highly appreciated. Love you all.
warmest regards,
-Steven
"My name is Jayna and I wanted to take this opportunity to say how much MDJunction has meant to me. I always felt so alone before I joined in April of 2012. I felt like there wasn't anyone that really cared about me and what I was going through. I felt like there was no one that would truly listen to me in what I was feeling. Nobody was there for me. That is before I found MDJ! 
