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Old 12-20-2012, 10:15 PM   #21 (permalink)
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Hey Tori,

Sorry to hear that. You will get better as long as you go to the treatments and believe in yourself!! You can do it!
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Old 12-21-2012, 09:21 PM   #22 (permalink)
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Hi Tori!! Sorry to hear about the treatments.....those things are the pits!!! Hope you get to feeling better soon. Dr. started my new one and in about a week I had sores on the corners of my mouth and in my mouth. I'm now off of it until all the sores go away. We will try again!
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Old 12-21-2012, 09:47 PM   #23 (permalink)
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Tori, thinking about you and hope your feeling okay. Hugs!
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Old 12-21-2012, 11:02 PM   #24 (permalink)
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Quote:
Originally Posted by munchkn8835 View Post
Hi Tori!! Sorry to hear about the treatments.....those things are the pits!!! Hope you get to feeling better soon. Dr. started my new one and in about a week I had sores on the corners of my mouth and in my mouth. I'm now off of it until all the sores go away. We will try again!

Ugh! I know how that goes.... I have 4 in my mouth now. They will subside in a week or two. But it's no fun.

I hope yours heal quick....


Thanks everyone
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Old 12-22-2012, 12:15 AM   #25 (permalink)
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Tori - I'm sorry the new treatment's making you feel horrible. Hope things calm down and your body responds. Age 4?
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Old 12-22-2012, 09:03 AM   #26 (permalink)
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Yes... between age 3 1/2 and 4 years was when the first tick bite happened. I was rebitten around age 10, and I believe again as an adult. Ticks aren't uncommon, so multiple bites in one life time is more realistic than just one bite.

We went back through old photos and found evidence of a mild Bell's Palsy in most of my photos starting at age 4 years. It's common in children with Lyme, and like mine - is often missed. In fact, my own mother said, "That's just your face!" LOL Thanks mom .... Until I showed her the photos where it wasn't present. There were none before age 4 years, and during certain seasons my face was even, others it had the Bell's Palsy. It goes along with Lyme - Lyme cycles and so symptoms cycle.

That's also when I started getting sick all the time. I was sick about 3 times as often as the average child. My sister would get 1-2 colds a year. I'd get 5-6... every year.

Then there were behaviors. I would have been put on the Autism Spectrum if I was a child today. I had odd repetitive behaviors like rocking. I had poor eye contact, lacked a lot of basic socialization skills, was a loner most of the time. I had problems with clothing - textures, and with touching certain things. I often kept my hands in fists - I didn't know why, just that they "felt funny" if I didn't.

Children with Lyme are often given an ASD, ADHD, ADD, or another psych or behavior health diagnosis.

Back in the 80s those things weren't as easily given out. I was just labeled an "odd duck". But the behaviors all fit a child with Lyme, and were all attempts to cope with the symptoms.

The lack of socialization was because the other children were too loud, too fast, and too colorful. I was also picked on because I'd forget things. I'd forget words, or if reading allowed I'd replace a word with a similar sounding one. I'd forget how to do things in gym class like how to skip, jumping jacks, catching or throwing a ball. And I'd be labeled a trouble maker, instead of anyone really trying to figure out what was going on. But it would have seemed odd... How can a 7 year old who could skip the entire week before "forget" a week later?

There were other behaviors and "quirks".

I always refused to eat red meat - started at age 5. I'd cry if my mother tried to make me eat it. I'd eat chicken or fish if I had to. They just thought I was born vegetarian. I felt sick when I ate meat. I felt sick and got rashes when I ate any kind of dairy. Come to find out there is a strain of Lyme that causes allergic reactions to mammalian meat.

As time went on these just became part of me. I was "weird" and "sickly".

A child doesn't have the words or know how to describe things like Lyme pain. They don't say "my joints hurt". They say "My foot hurts," or "my leg hurts" or "my hand is itchy". Most of my complaints were put into "growing pains" category.

It took me 3 years to tell my current doctor that my joints always hurt. I thought it was normal. I thought being exhausted every day was normal. I thought my muscles feeling like they were tearing off my bones was normal. Because I have lived it for as long as I can remember.

The soles of my feet burned off and on for most of my life - I always thought it was my shoes. I'd get new shoes! But that is a symptom of Bartonella - a tick, flea, and biting fly illness ("cat scratch fever").

I got rashes and a high fever every time I went onto a Penicillin antibiotic. Thought I was allergic to it. So had it written in my medical file - Penicillin allergy. Come to find out all those times I was having die off reactions (herx reactions) all those years.

When I started telling my doctor all these symptoms she asked me when they started...and I couldn't answer her. I just told her I never thought to bring it up before.

There needs to be more awareness and information out there about the real face of Lyme Disease. It isn't as simple or as unheard of as people think. And that saddens me.

I went through a life time of Lyme....undiagnosed. And I grew up in an area where Lyme was not unheard of.... but not one doctor ever tested or asked my parents about Lyme.

Sorry this was long... ramblish.

I'm up with a fever

Thank you all for the kind thoughts and support. I do appreciate it...
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Old 12-22-2012, 12:48 PM   #27 (permalink)
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oh my gosh Tori this is an awful thing to go through all those years. I hope that this new treatment will work for you. For the sores in your mouth have you tried to put a drop of tea tree oil on them ? Try it on one and see what happens.
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Old 12-22-2012, 08:06 PM   #28 (permalink)
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Sweet Tori, first of all, you inspire me. You are such a wonderful fluff Mommy and I can feel how much you love Gus and Grace with every post you write. I'm so sorry you have this horrible disease. I pray this new treatment will bring you relief and healing.
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