Gynecological diagnosis III

Continued from Gynecological Diagnosis II

The gynecologist I saw in 2002 specialized more in ob than gyn. After the lap, she told me she had left several sites of endo during the procedure. She told me she did not feel confident attempting removing them, particularly the one on my right ureter. She put me on birthcontrol pills, said to come in for a follow up a few months later.

A month later I called to talk about trying a new pill since the ones she prescribed were giving me morning sickness (no really). I was told she had left her practice.

Soon after that, I caught Lyme Disease. Bad luck and geography conspired against me I suppose - I had just moved to a county with the highest per capita Lyme rate of my state. I had the big old bull's eye rash and all. I mention it because it becomes relevant.

I eventually found another gynecologist through word of mouth and MUCH internet research. He does not do obstetrics, which was what initially interested me in him. I saw him in late January of 2003.

We tried progesterone, but to everyone's immense surprise, it gave me breathing trouble. At the time we didn't know it was the progesterone doing it. No. I had no idea it was even a possible effect of the medication, although I recall thinking once or twice "hm, that started in February, and I started the progesterone not long before that". But the breathing problem had not started suddenly. It came on gradually and worked its way up to where I could not talk or walk more than a few feet without feeling like I couldn't breath. I felt like I was drowning, like I could take breaths but wasn't getting enough air anyhow.

The chest X-rays showed "mild hyperventilation" and that was it. The new PCP I had dismissed it. I use that word a lot in this, I know. But it is an accurate word. Dismissed is what I felt, and dismissive is how he was. He knew I had had Lyme Disease, and I think - even though I showed him the picture of my rash and the western blot results - he approached me with caution because I continued to complain of fatigue, headaches, and strange pains in my hands and feet. It never crossed my mind these were symptoms of Lyme. I had in fact asked him to check my thyroid level since all three of my paternal aunts had thyroid disease. I figured fatigue, you know, could be thyroid. What I certainly wasn't thinking was refractory Lyme, or post Lyme, or chronic Lyme, or anything Lyme. However, it seems he thought I might have been simply by having "LYME" in my history and the temerity to not be feeling well in his office (it was my first appointment...shoulda known then and there). This made me someone to approach as if I were an idiot or crazy. Or a crazy idiot.

The breathing problem got to the point where I would have to break up lecturing to catch my breath (one of my jobs as a grad student is to teach undergraduate classes, discussion sections, and labs). I was in the midst of talking to some fellow grad students at school one day when the usual breathing issue started catching me up. I stopped and took a few breaths, deep ones as usual. Then a gulp. I didn't feel right. Then I felt like something kicked me in the chest, a hard sudden jerk and a sucking feeling. According to my friends, I blanched and then fell over. I only remember the feeling, disorientation, and then being on the ground. The whole thing happened really fast with all of the parts coming in rapid sequence.

I called the doctor and he said to come down to his office.

When he came into the exam room, he was in a mood. He was gruff and dare I say, cranky. We spoke about the breathing and he reminded me he had already done a chest film and it was clear. He brought up the issue of "somaticizing". I said "so you think I'm a hypochondriac?" He said, with irritation, "that's a lay person's term". I got pretty pissed off at this point. "Well I'm a lay person, so that's the word I use. They're roughly equivalent though, right?"

We went on like this for a while. At one point, he actually raised his voice. I raised mine back. He told me he "didn't believe in chronic lyme disease". I had never mentioned the words "chronic lyme disease". I had never even heard the phrase "chronic lyme disease" until he said it.

He ordered an EKG and stormed out of the room. While the tech applied the electrode patches, I started sobbing.

Prolonged QT interval. Nothing much.

On the way home, I was in an extremely dark mood. I was never certain if this was the progesterone or the "not chronic Lyme" (which turned out to be neurolyme, confirmed by a spinal tap - sometimes the oral antibiotics don't work, but that's another issue) but during that time period, I would get extremely angry. We all get angry, I'm sure no exception. This was different. It felt like I couldn't come down out of it. I was an experienced angry person and I had spent a good deal of time and money in therapy working on how to deal with that. By the age of 30, while I still got pissed off, I also could usually get myself out of it. During this time, I couldn't. I could only wait.

I was enraged on the ride home. When it finally dissolved hours later, it left me depressed and cold feeling. It's a simplification to say I "got over" how the primary care had treated me. I got over it enough. Sometimes I still think about mailing him an envelope full of ticks and then calling him and yelling "hey, what's that about chronic lyme now you a**hole!?"

I think what helped pull me up out of the emotional hole I was in was that I honestly wanted to be well, I had an extremely strong urge to be better. The fatigue was not ok. The developing other stuff like joint pain and headaches were not ok. I took these as being signs of stress (not neurolyme) which would improve when I had addressed the more pressing issue of the breathing. I can't do much if I can't walk and talk, right? So I went to a cardiologist, a pulmonologist, and I did research on my own.

In the end, I'm the one who came up with the answer. It turns out this hormone is used as a respiratory stimulant. As I understood it, it works at the central nervous system level, so you wouldn't see any changes in the tests my doctors did - except perhaps evidence that I was breathing too deeply, too much. Essentially I was hyperventilating all the damned time because my brain was stuck sending out signals there wasn't enough oxygen.

When I first saw a few articles (peer reviewed articles) about this use of progesterone, I asked the pulmonologist, a very nice fellow, about it. "Could that have any effect on what's going on here?" I asked. He assured me that it is used for sleep apnea to stimulate breathing, but not at my dose. I'm still not sure he knew what my dose was. It wouldn't be the first time a doctor misread a chart.

I felt certain it was the progesterone only after October. In early October, it was like the progesterone stopped working all at once. I had been on IV antbiotic for a month over the summer for the Lyme. During that time, I kept on taking the progesterone. I took it faithfully since it wasn't for birth control but for pain and endo control. I had no periods and very little pelvic pain during that time. But then BLAM. I was out in Michigan, where I had lived for some time, visiting friends. And I got a period - the first one in over 6 months. The flow was heavy and the pain was unbelievable. I had to leave a restaurant in the middle of a meal after nearly passing out. I spent the evening in my hotel room in searing super strong ugly pain.

I came home and told my gynecologist. And we stopped the med. Within about a month, I was breathing free and clear. I take this as empiric evidence that the hormone was the cause of the breathing problems. I wanted to send all my doctors a bill.

By December of 2003, I started to have GI problems again. Intermittent at first. I thought it was stress. I saw a GI doctor who recommended more fiber. In Spring 2004, I had another poop/puke/pass out, this time at dinner at a faculty member's house. That definitely topped boyfriend's parents' bathroom for most horrible place for this to happen. I started having diarrhea frequently. That GI doctor left for California. I saw another one in his practice, who said to stop the fiber.

As it turns out, and I'm skipping ahead here a bit, I had done something very, extremely dumb which may have had something to do with this return of the GI issues. I don't like to admit it, but it's part of the story so here it is. After stopping the first progesterone therapy in mid October of 2003, I had started a different progesterone type medication at my doctor's order. I was on it for less than a week when I started bleeding and bleeding and bleeding. This was not spotting. This was a torrent. So we stopped that too.

And then I avoided the Gynecologist.

That's the stupid part.

(to be continued...)