Readers write about Lyme brain
11/21/09 08:55 Filed in: Lyme Disease Story
"Kmart" sent these comments in response to last week's post:
1 - I once lost my truck key on the job (gardener). I had three people (customers), for thirty five minutes, looking all over their house and property for it. I must have checked my pockets thirty times and even flipped out my front pockets like a rabbit. Yes (you all have done this) while just standing in confusion & embarrassment my stomach fluttered & face grew red as I had to suddenly admit that I found my key in my right front pocket while casually just standing there. Oops, my bad. There is still no way to explain lyme brain to others.
2 - Having read through the protocol, how in the heck is someone with stage 3 suppose to remember all that? I believe any attempt (at a protocol) is a good one for fighting Lyme. Seriously, there is no way I could stay on this as I am still looking for my keys!
***
Success stories usually, if not always, follow failure. The classic example is learning to ride a bike. If it took falling over nine or ten times before you finally got the balance thing down, than those nine or ten times were more about succeeding than failing.
Healing from Lyme has been sort of like that for me. Starting with getting a diagnosis, which doctors kept getting wrong. I've talked to people for the success stories who said that they went to more than 30, or in some cases more than 40 different doctors before getting a correct diagnosis!
It still makes me shiver to think about the dermatologist who wouldn't even look me in the eye while he was examining my skin rash. I'd brought in a notebook with questions I had jotted down, because I knew I wouldn't be able to remember them unless I wrote them down. The minute I opened it and read my first question, he stopped making eye contact with me! It felt as though he saw me as some sort of weirdo to protect himself against. I absolutely did not feel like I was in the supportive hands of a healer. Of course, it didn't help that I stuttered terribly whenever I tried to talk. He was one of the docs who had prescribed prednisone for my "excema." He was sure he was right. I was sure I was getting worse, not better. At that time I had no clue that the medicine itself was making my disease spread inside my body and brain, quickly rendering me unable to think, talk or keep my balance while walking.
Lyme brain can definitely be funny in retrospect, but I know it's absolutely terrifying when you've got it.
Whether your stories are humorous or scary (or both!), I invite you to share one of yours here. You can either email me directly: [email protected] or put it in the comments.
All good wishes for healing to every one of you,
Suzanne
P.S. Kmart, I know what you mean about remembering the protocol. I kept notebooks full of schedules for when to take which antibiotic or supplement, to take it before meals, between, whether to take it with water or juice, or put it under my tongue, and how many drops of this and that, when to increase or decrease...It got to where I was either taking a medicine or writing about having taken it. Having Lyme is hard -- but healing from Lyme can be just as tough!
1 - I once lost my truck key on the job (gardener). I had three people (customers), for thirty five minutes, looking all over their house and property for it. I must have checked my pockets thirty times and even flipped out my front pockets like a rabbit. Yes (you all have done this) while just standing in confusion & embarrassment my stomach fluttered & face grew red as I had to suddenly admit that I found my key in my right front pocket while casually just standing there. Oops, my bad. There is still no way to explain lyme brain to others.
2 - Having read through the protocol, how in the heck is someone with stage 3 suppose to remember all that? I believe any attempt (at a protocol) is a good one for fighting Lyme. Seriously, there is no way I could stay on this as I am still looking for my keys!
***
Success stories usually, if not always, follow failure. The classic example is learning to ride a bike. If it took falling over nine or ten times before you finally got the balance thing down, than those nine or ten times were more about succeeding than failing.
Healing from Lyme has been sort of like that for me. Starting with getting a diagnosis, which doctors kept getting wrong. I've talked to people for the success stories who said that they went to more than 30, or in some cases more than 40 different doctors before getting a correct diagnosis!
It still makes me shiver to think about the dermatologist who wouldn't even look me in the eye while he was examining my skin rash. I'd brought in a notebook with questions I had jotted down, because I knew I wouldn't be able to remember them unless I wrote them down. The minute I opened it and read my first question, he stopped making eye contact with me! It felt as though he saw me as some sort of weirdo to protect himself against. I absolutely did not feel like I was in the supportive hands of a healer. Of course, it didn't help that I stuttered terribly whenever I tried to talk. He was one of the docs who had prescribed prednisone for my "excema." He was sure he was right. I was sure I was getting worse, not better. At that time I had no clue that the medicine itself was making my disease spread inside my body and brain, quickly rendering me unable to think, talk or keep my balance while walking.
Lyme brain can definitely be funny in retrospect, but I know it's absolutely terrifying when you've got it.
Whether your stories are humorous or scary (or both!), I invite you to share one of yours here. You can either email me directly: [email protected] or put it in the comments.
All good wishes for healing to every one of you,
Suzanne
P.S. Kmart, I know what you mean about remembering the protocol. I kept notebooks full of schedules for when to take which antibiotic or supplement, to take it before meals, between, whether to take it with water or juice, or put it under my tongue, and how many drops of this and that, when to increase or decrease...It got to where I was either taking a medicine or writing about having taken it. Having Lyme is hard -- but healing from Lyme can be just as tough!
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