SO, due to the nature of online communities and my tremendous desire for privacy….i’ve been struggling whether or not to share this with you guys. I ask that anyone commenting on this PLEASE be compassionate and considerate as this is REALLY hard for me to share. To a certain extent, i’ve reached a point of helplessness and hopelessness regarding my mysterious health issues that begat me seemingly out of nowhere 1.5 years ago and have been a living nightmare ever since. I need thoughtful council, advice & suggestions. If this thread goes poorly I’ll promptly edit and erase everything. Please be mindful as i’m normally such a strong, independent person whose been hit by this life altering, disabling disease that no one can figure out…so, this is hard for me to share in public to put things mildly.
It was the start of March in 2011, I had just released a new album & was getting ready to tour the US, Canada & the EU…things were hectic but going quite well…then I started feeling certain bizzare heart symptoms. I noticed the more active I became the more it would make my heart skip, palpitate and race. My chest was tight, breathing slightly constricted…I forced myself through my record release concert and that night, laid in bed, feeling my heart jump all over the place, race up, slow down, skip everywhere & beat extra beats.
I just attributed it to exhaustion and pushed through it. About a week later I was in the recording studio and noticed an increased inability to breath, along with severe dizziness and disorientation. I had a hard time exhaling and it felt like I was going to die! I rushed myself to the ER where they did all the usual work ups, including a chest xray and could find anything except for a potassium deficiency. They said I was probably working too hard and not enough and left it at that.
From this day forward my breathing continued to get worse to the point where I felt like I was suffocating, the ability to exhale became next to nothing. Again back to the ER, this time with some breathing test and sure enough, my ability to exhale was half of the normal range.
I was given steroids, I took them….I was scared, desperate and needed help. They worked great, for a couple days….my breathing and heart seemed to normalize. I went back to work, and then it all hit me again….breathing got worse, heart skipping all over the place, THEN this was new…my stomach and what felt like my heart (now know it was my upper esophagus) started spazming, making me feel like I was literally having the most messed up, discombobulated heart attack/indescribable feeling ever. Again, rushing back to an ER who had no idea what was going on other than making me lay there until my heart rate normalized.
I became too scared to move much out of bed or leave my apartment, I started getting MAJOR acid reflux and food regurgitation. My breathing continued to get worse, heart rates still all over the place, my stomach now started to increasingly burn. A nurse friend of mine whom I began trouble shooting with after talking to me for like 2 hours finally concluded that my mystery condition was rooted in the GI (gastrointestinal) department and suggested I get an endoscopy ASAP. I had already had a echocardiogram which showed my heart to be fine….the cardiologist just gave me a bunch of anti depressants and called it a day.
Excited about my new find with my nurse friend, I promptly scheduled an appointment with a “top” GI specialist in my area and scheduled an endoscopy. An endoscopy is where they stick a camera down into your stomach and esophagus and take a look around. When I awoke from the procedure the doctor told me that there was no h pylori present but, that I had gastritis and a peptic ulcer. He went onto tell me that these things would have NOTHING to do with my breathing difficulties and other symptoms and that I should take high doses of Nexium for 6 months.
I was defeated, if this wasn’t GI related then what was it? So then I started looking into pulmonary specialists. This venture prolonged matters for a long time. Lung specialist after lung specialist, steroid inhalers, asthma inhalers etc…i was told I had ‘lung disease’ ‘chronic asthma’ and that there was nothing they could do about it. It didn’t make any sense to me, I never had any trouble breathing and now bam i can’t even walk down the block overnight?
I then researched the best pulmonary hospital in the US, National Jewish Health Center. I applied for charities, grants since i’ve been uninsured this whole time. I went there with a girl friend to help me for a week of work ups including a bronchoscopy which is a procedure in which a camera goes down into the chest to culture and check things out. During this visit I learned that I was very short of breath, but it had nothing to do with asthma or lung disease. The bronchoscopy was the most revealing procedure thus far, the specialist that performed it said that my entire trachea, esophagus were totally inflamed and that there was a bunch of aspiration in my lungs. Basically i’ve had stomach acids constantly shooting up into my esophogus so much that they were falling back down into my windpipe and consequentially into my lungs. This blew my mind because at it’s core THIS HAS BEEN A GI PROBLEM ALL ALONG.
The problem with National Jewish is, although their pulmonary science is the best around, their GI doctors suck big time. They had no idea what to suggest, diagnose or how to treat me. The GI doc there gave me MUSCLE RELAXERS and said, “the body’s a mysterious thing” ummm WOW thanks!
Upon my return I got another endoscopy done by a different doctor. The results were quite interesting. There was no peptic ulcer visible anymore but, my stomach was severely inflamed, discolored and full of gastritis. When I came to from that procedure my dad woke me with tears in his eyes saying, ‘I spoke with the doctor, I think we finally found what’s going on with you’….
This GI doc’s nurse called me up a week later to tell me that no again h pylori could be found in the cultures and that they didn’t know what had my stomach in such chaos and “good luck” again, ummm wow thanks.
SO, there’s the extent of what I know so far and where knowledge about my condition has stalled out. Since then I’ve researched acute gastritis and h pylori extensively….because whenever I google my array of symptoms, h pylori keeps coming up. Even though i’ve tested negative for it several times, I strongly suspect it, though I could be wrong. I also had a stool test done a few months ago that showed yeast overgrowth in my stomach as well. The integrative doc that ordered it, said to try two different anti fungal drugs for 2 weeks along with a basically anti candida diet for 6 months. She said if that didn’t work, she’d suspect a strain of h pylori that isn’t showing up in tests. Again, I haven’t tried these anti fungal drugs yet cause i’m afriad of making things worse….but, I can’t live my life this way either..thus, the rock and hard place. The traditional treatment for h pylori is triple therapy, two different antibiotics and a PPI. I’m nervous about trying it for fear that the antibiotics could make everything worse. I am much better than I was a year ago in the sense that since knowing this was rooted in my stomach, i started spending the least amount of time on my back, always standing, sleeping while sitting up and downing tons of ice water all of which has opened my breathing up to somewhat functional levels. It used to be so bad I couldn’t walk or talk…now I can at least dj 2 nights a week and weight train & do some yoga. But any extensive cardio activity is out of the question.
I used to live in a really damp, musty apartment (that I moved out of a year ago) with really bad carpeting. For awhile I thought I had contracted black mold toxicity. After researching that a ton and speaking with a few “specialists” …it seemed to be a rabbit hole with about as much credibility as a Doug Graham book….I could be wrong though, just my impression and experiences.
SO, i’m stalled out y’all….I pretty much lost my life 1.5 years ago and hardly recognize what my life has become now. If you’ve read this far then, I sincerely thank you for your time. Any insight, suggestions, advice, recommendations, guesses whatever would be much appreciated. I honestly, don’t even know what to do anymore. It seems no matter what I eat, it doesn’t seem to matter much.
My symptoms are as follows:
Burning/gnawing/raw feeling of my stomach
Shortness of breath
Heart skips/racing heart at times
Burning feeling and wheezing sounds during exhalation
So there you have it, thanks again for your time everyone.