Wednesday, November 30, 2011

To Thine Own Self Be True

I saw the Ophthalmologist in Boston on Monday. I was grateful to find him as he specializes in Lyme Vision problems. Might I add that 6 people in the waiting room also had Lyme. I had to sit through the rantings of the crazy lady next to me who insisted that Lyme doctors and all the patients with Lyme were "a cult." I wanted to whip out my MRI and show her my lesions. Actually I wanted to shove the MRI down her throat but instead I sat there and shook my head and bit my lip. It wouldn't have done any good to talk to this loon bin. Of course then she went on to say that she once had Lyme and took the IV antibiotics but they made her nauseous so she stopped. Nausea? Really? I would take a round of nausea any day over this. Then she went on to say that she was then diagnosed with Fibromyalgia and not lyme. Uh-huh. Good luck uninformed person-good luck to you.

 For quite a while I've had bad eye pain, blurred vision and horrible floaters. I haven't been able to drive in several weeks. The Lyme specialist suggested I go to Boston so another day off of work for my husband and a field trip.

I wasn't happy with the outcome. I feel like every time I go to the Doctors it's more bad news. After two hours of painful drops, dilated pupils, bright lights and flashes socked into my eyes, pressure measurements and photos of the back of my eyeballs...

His diagnosis was that I have retinal hemorrhages and small vessel disease. All of this is caused by still active brain lesions despite 5 weeks of IV antibiotics. He gave me the pretty pictures with hand written notes to bring back to my doctors. He also warned me that I would need months of antibiotics considering I had 4 tick illnesses. But I knew that.

I wonder how much less suffering I would have to go through had my doctors, maybe even one doctor just treated me appropriately with antibiotics or believed me when I didn't improved. I wonder if I would have brain lesions or would have lost my vision or the hundred other physical complaints I have. I wonder if I'll ever be able to run with my kids again or just take a walk with the dog or not be profoundly exhausted when I fold laundry.

To Thine Own Self Be True. I should have listened to that voice deep inside me who knew something was very wrong. I shouldn't have let doctors talk me into a diagnosis that I knew wasn't correct.  Lesson learned. To Thy Own Self Be True.


jess said...

I'm so sorry you're going through this. It's terrible that the doctors didn't do anything about it initially, terrible that you're having all the problems that you're having now, terrible that you don't know what will happen from here. It really, really sucks. I wish there was something I could do to help. For now I'll be sending hugs from the other end of the state!

Tara said...

After 3 years of antibiotics (with no end in sight) and 17 years of having lyme without anyone diagnosing it, I feel your pain! Hang in there -- it's a struggle and will ultimately require more patience than you thought you were possibly capable of having. I have walked out of many doctors offices crying. It's not fun but I am glad you are getting treatment. Things do get better, but it's a slow process. I'm sending positive thoughts your way!

The Mom said...

Thank you both.The good thoughts are much appreciated.