Hitting bottom

A thing happened. I have been processing it, but I think I’m ready to share.

One of my Lyme symptoms is air hunger. Until Monday 4/11, it was intermittent and only with exertion. The exertion didn’t have to be large -- I’d get it if I climbed the stairs from my main floor to my second floor -- but sitting or lying down always made breathing easier again within a few minutes. It has become more noticeable since I went off Lyme antibiotics in January. On Monday, though, the air hunger became constant, and since then every breath has hurt.

On Thursday, I decided that I should call my Lyme doctor, as she only works M-Th. She said that it was very probably either an exacerbation of the Lyme (since we are only treating the Babesia right now) or a rare but known side effect of the Malarone, but there was a tiny chance that it was a pulmonary embolism and I should go to the ER and get it checked out. I told her that I would seriously rather die than go to the ER ever again on my own with a Lyme-related complaint, but that I would call my GP and see if she would meet me there.

My GP agreed that I should not go to the ER. Since I am allergic to IV contrast, she ordered a stat venous perfusion study of my lungs to rule out pulmonary embolism. The only catch was that her hospital is the one at which, the one time I went there seriously ill at the request of a physician, they tried to have me committed. I planned to follow the protocol my therapist and I arranged after that incident, which was to call her on her cell phone so she could come and assist me if necessary. I took Xanax as soon as I got in the cab, but realized halfway to the hospital that I had left my wallet containing my insurance cards, money, and therapist’s number at home. (The number is now in my cell phone.)

My GP met me at the entrance of the physicians’ building with a wheelchair, made copies of the insurance information which she had on file, checked my O2 saturation, and called my therapist (they are friends). Then she wheeled me over to the hospital and got me admitted immediately. She told the admissions person that I had had a very bad experience at that hospital and that no test or treatment was to be given outside of her orders. She stayed for the mandatory chest x-ray, then left me to attend to another emergency patient with a promise to return to get the scan read and take me back.

I was so terrified of being there, even with Xanax on board, but the people who did the test were nice and I got through it. My doctor did come back to get me, and she drew labs to check my SED rate and CRP and electrolytes plus other basic stuff. My inflammatory markers are up again. The VP scan was normal, and my O2 saturation was 99, which ruled out airway issues or emboli. Unfortunately, that hasn’t made it any easier to breathe.

My GP increased my sleeping medication, and Thursday night I was able to sleep for almost 9 hours, which got me from Zombie to just severely exhausted. What is hitting me really hard, though, is that this means that the Lyme is definitely back, and I am not physically strong enough anymore to withstand treating both infections at once. My Bartonella has flared back up again too, and the thrush infection isn’t responding to antifungals.

The current thinking about the constant air hunger is that it was exacerbated by the physiological stress of the painful ultrasound on Monday, and that the chest pain is costochondritis. The pain is on both sides of my upper sternum, about 2 ribs down from the top, just where the ribs and the sternum meet. Air hunger in diseases like Lyme and CFS is thought by some researchers to be caused by nitric oxide induced mitochondrial dysfunction, so I tried to read up on that a little bit over the weekend, but I was too tired for it to sink in. Hopefully soon I'll be able to return to it with a clearer head.