Yes, Mayo was yesterday. And today I’m so incredibly thankful that it’s over now. I’m drained, physically and emotionally. I woke up at 5 AM, to get to the hospital by 8:15, only then to have a day of one thing after another, after another. We left around 3:30, still without having had lunch. Yes. You did the math correctly. That’s 7 straight hours of doctors. And not just regular doctors. No. These were the kind that don’t believe in chronic Lyme. Lovely… right?

 

But I’m getting ahead of myself.

 

My first appointment was the best of the three. I met with an ophthalmologist who had been in contact with my eye specialist about me. Turns out that he and my dad worked on the street around the same time in the 80’s at the hospital. It’s a small, small world! So in-between their exchanging of stories he took a look at my eyes. Long story short: He thinks my eyes are almost 100% better! The inflammation is barely discernable! What a miracle. Something went right. He is of the opinion that all of my intracranial pressure problems and optic nerve swelling is solely because of the Doxycycline I took for a little over a month in January/February which is from the family of Tetracycline antibiotics that is actually known to cause this reaction in some people. We knew this had been a possibility, but because so much time had passed since then most people we had seen weren’t comfortable with it. This is GREAT news however! It means I won’t have to have any kind of surgery to get a shunt placed. I keep reminding myself how GOOD this is! Thank God!

 

So, with that, onto my second appointment. It was with a Nurse Practitioner who was an Infectious Disease specialist in the Pediatrics and Adolescent Medicine department. I just had a bad feeling going into this one. Long-standing Lyme Disease and Infectious Disease Doctors don’t mix well. At all. But I took a few deep breaths, and tried to hold out for a positive experience. By this time I was starting to lose what energy I had managed to sum up for the first appointment. I was so tired. My head hurt, and my eyes hurt from when the last doctor had kept pushing on them to prove a point {inflammation}. Yeah, you read that correctly too.

 

As soon as she began talking to us however I knew this wouldn’t be a positive experience. She knew next to nothing about Lyme as a persistent infection. My friends know more about Lyme than she did! She asked me if I had pain in my knees, had ever had a rash, and insisted that she had never heard of Lyme being passed congenitally. She worked hard to get a timeline from us. And she wanted to know my symptoms. Well, I was prepared! Remember my symptom list that took me so long the night before the appointment? I pulled it out, and groaned internally as I saw the look on her face. My opinion: She didn’t believe it. Or me. She wanted “a current” list. So I insisted that I written that list just the night before. She breezily moved on.

 

I did feel bad for her. She wasn’t in a pleasant situation with her 17 year old patient and my mom throwing out our own research, facts, and small statistics. As a practitioner it can’t be easy when your patients have the upper hand when it comes to information about a disease, whether you believe them or not. She couldn’t understand how I was being treated with the Lyme test results I had. {I’m only positive on one band.} She hit a sore point with me too by bringing up school. I don’t care what she says, I do go to school even if it is in my own home. Don’t tell me I don’t. I’m sorry.

 

She went to talk with her doctor about my “situation”, and came back a short time later. They had decided that in their opinion it would be best if I could be retested for Lyme, Bartonella {I had showed her my rash and had said I was being treated for it.} and another infection called Ehrlichia. That way I could rule out Lyme and prevent unnecessary treatment if they came back negative. Where, at this point, my mom and I once again talked about the high chances of negative test results since I had been infected so long. I’m sure she thinks we’re all crazy. She was much more in favor of treating my fibromyalgia. That she knew about. But, I digress. Because of our own concerns, we chose to skip the Lyme blood test. If we redo it, I’d much rather do it through a lab my LLMD trusts. We did agree to do the two other tests though, and we should hear their results in a few days.

 

By this time I was just done. I didn’t want to deal with her anymore. I didn’t have it in me. I was glad to be done with that appointment. Only one more to go. Last but not least, on to my Neurology appointment. The doctor was nice enough. She too was very interested in my timeline, took extensive notes, and even examined me. She didn’t like the Lyme diagnosis either. But she took notice of my symptoms. She tested my muscle strengths, my reflexes, and my balance. And I assume they all came back pretty normal because she didn’t say a word about them. I felt as if I were shaking like a leaf the entire time she was testing me, but she said she didn’t feel it. I felt as if I teetered and tottered when I walked one foot in front of the other, but she didn’t seem to notice. Many of my symptoms like that are subjective.

 

She agreed with the first doctor, saying that she too was comfortable with the Doxy being the cause of my problems that sent me to Mayo in the first place. And she took the time to explain how this happened. Which we greatly appreciated! But she was concerned about all my other symptoms still not being resolved. Her recommendations? She wished I would retest all of my neurological and inner ear dizzy, balance, and sound issues. Perhaps they’ve gone away? Or gotten better? Or worse? She didn’t know. But she wanted them to be checked out again, just in case. I don’t really want to deal with that right now. What I went through six years ago when we found out I had a 50% deficit in my left inner ear was enough for me. I blocked most of it out and don’t remember it. So I don’t know if we’ll do that or not, but it was what she recommended. She also felt {like so many countless doctors before her…} that this could be a physical expression of depression and I could benefit from some counseling. Something may be wrong in my life that my body is trying to draw my attention towards, she said. But again, she didn’t know. And I almost cried. I say almost because I held it together enough until after we’d left her office.

 

I’m sick of people telling me I’ve got to be depressed because of what’s happening to me. I’m tired of nobody believing me when I describe my symptoms. Instead doctors have accused me of lying, of cheating test results, of making up symptoms, all to get out of school or to get attention. I swear that half of my pent up emotions are from doctors thinking these things. I almost cry just thinking about it. I know that I’m sick. Why can’t these doctors see it too? My family does. My friends do. My LLMD does, and I’m thanking God. I’m so blessed, so lucky to have doctors at home that believe me, that trust me, and that I trust to treat me. I need them right now. I need to continue healing, and to get better. Just as the Neurologist said, I don’t want to be stuck in a rut of ill health all my life. Those that think I would want that are the crazy ones, the insane ones. Who would choose this? Not me. I don’t choose it. I just make the best of it.

 

And so, I’m concentrating on the good news. This means I shouldn’t be put back on any of the Tetracycline antibiotics, but there are plenty more to choose from I think. We’ll keep an eye on my eyes, and if I feel my pressure going up again we’ll re-access. It may be another medication reaction, since we now how sensitive I am to them. But for now, I’m tired, I’m beat down, I’m sore, but I’m happy. I’m thankful that at least some good came out of yesterday’s ordeal.

 

Peace and healing, molly

 

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” – Author Unknown
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