Omg...i Might Be On To Something

[Rachel--24]

  AndreaB said:

I would think you'd be able to go next year......but I'm not a doctor.

Yeah...but you're a good friend who says the right things.

I really want to go to Disneyland....and also on a cruise somewhere. I've been talking about going to DL since I thought I only needed to be gluten-free. I read posts about DL resorts serving gluten free pancakes shaped like mickey....and ever since then I've really wanted to go.

I keep saying "when I get better I'm going to Disneyland".

But maybe I will keep saying this year after year...

[AndreaB]

  Rachel--24 said:

Yeah...but you're a good friend who says the right things.

But maybe I will keep saying this year after year...

I try.

I believe you will be able to go. Bioset #1 is going to be working with you.

[Rachel--24]

Oh yeah...I forgot to tell you guys...

a couple days ago at work I was sitting in the break room and people were talking about taking care of your body cuz it can break down (dont I know ) and then one lady (that I've known for like 17 years now) said something about having really bad reflux and burning in her throat.

She said she gets it from everything she eats and it gets worse when she tries to quit smoking....so she doesnt quit because she has less acid reflux.

I remembered that smoking can *protect* people from getting Celiac so I asked her what foods bother her....she said all foods and she said that she doesnt eat junk or fast food or greasy food. I said "What about bread?" She said "Oh yeah....especially WHEAT....maybe I'm allergic to wheat?" She said she is going back to the Dr.

I wrote down celiac disease on a piece of paper and told her to ask to be tested. I told her a little bit about it.

I dont have much faith in the Dr.'s though.

[happygirl]

x

[happygirl]

x

[AndreaB]

x

[happygirl]

x

[Rachel--24]

  happygirl said:

rachel, im not sure i understand your question about lyme net. are there numerous places to read it? i've been reading it on Lame Advertisement

Laura,

I was asking if its the LymeNET message board that you've been on. There are quite a few Lyme boards....was just wondering. I havent found a "favorite" yet. I wonder which board is the best and most informative? So far I find myself spending alot of time on LymeNET.

  happygirl said:

rachel or rinne,

I have a copy of my regular lab work from JH---I asked to be tested for Lyme and I can't figure out which one it was...I don't see one that looks like a western blot test. I'm confused. (I was trying to get my records together to send to my new doc). Could I sent them to one of you to look at?

What does the "normal test" say? Western Blot?

You can send me the results if you want....I'll *try* to figure it out. They may not have ordered a Western Blot....they might have just did ELISA testing.

[happygirl]

x

[Rachel--24]

  happygirl said:

also-of interest. I had an elevated lymphocyte level....any opinions? I've read that it can be linked to viruses, including EBV and CMV.

Not really sure.

All of my bloodwork was pretty normal. I had elevated liver enzymes only once...interestingly after I'd just been on 2 weeks of antibiotics (one of the ones used to treat Lyme).

Hmmm...I wonder if that means anything.

[happygirl]

x

[rinne]

  Rachel--24 said:

Oh...I'm proud of you too....for keeping up with all the research and being so proactive in trying to get answers for yourself. I knew you were a fighter since your very first post here.

Me too.

  missusg said:

oh your story sounds so familiar to me. I was diagnosed with celiac in feb. 06 and I thougth "there my answer to my pain' I was so very excited.

Welcome, we're always glad to meet new people. Post away.

  CarlaB said:

So it can always be men's fault???? It's probably only in male ticks, too!

LMAO

###

[happygirl]

x

[Rachel--24]

  happygirl said:

my liver enzymes are almost always elevated.

the head research nurse at NIH (for the doc I was seeing there) told me that if you haven't fasted before your bloodwork, there is a documented phenomenon about elevated bilirubin levels. Something about them rising after eating, but they don't know why, but it is normal. (she was the nurse that I loved, and actually knew a lot)

Laura,

I dont think its normal to always have elevated liver enzymes. I've never heard that.

My liver enzymes have always been normal....and my livers been tested numerous times over the past 4 years. I never fasted before the bloodwork. When they came back high that one time...they asked if I'd been on any medications. I told them I'd been on the antibiotics and they said that was probably why they were elevated but they retested to be sure....and they were normal again.

Its common for Celiacs to have elevated liver enzymes but I wouldnt say its "normal" or that everyone has them after eating. I would think that if that were true and research has shown this....then this would be taken into consideration as far as what the normal ranges are.

When the liver enzymes are elevated....it ususally means something isnt right.

[happygirl]

x

[Rachel--24]

Laura,

Did you email me? I'm on my moms AOL account but I can sign off and check my mail.

  happygirl said:

sorry, rach, I should have clarified. I was talking specifically about the bilirubin. It is usually the only one of mine which is elevated, although mildly. I mentioned it to the head research nurse, and she said it is commonly seen even in healthy patients for the above mentioned reason. my other liver enzymes are all ok

oh...ok.

Laura...I didnt get any mail??

[happygirl]

x

[Rachel--24]

Somebody sent me a BIG newbie package on the Lyme board. I'll be busy with this for awhile.

[happygirl]

.

[Rachel--24]

OMG....I'm wanting to pull all my hair out right now....I'm soooo frusterated!!

My mom just says to me..."OMG...you should have seen my dance instructor tonight.....he was SOOOO congested and I asked him if he was sick and he said "NO...its ALLERGIES." She's very dramatic as she's telling me about her poor dance instructor and how he's ALLERGIC to wood and now that its winter people are BURNING WOOD and he has to LIVE with this!! So she says..."BUT...he's doing it....he's just DEALING WITH IT...and living his life.

OMG...She always bursts out with stuff like this and THEN doesnt understand why I get upset.

HELLO...I'm allergic to freakin EVERYTHING!!

She doesnt get it at all...she's just never gonna understand. OMG...If only I JUST had a freakin stuffy nose around WOOD. Am I suppossed to lead by this guy's example?? As if we even *remotely* have the same kind of stuff going on!!

The last time it was about my Godmother and how when she drinks redwine she gets stuffed up and cant breathe well...."Rachel...lots of people have allergies and they just DEAL WITH IT."

Obviously HER problem isnt quite as severe and OBVIOUSLY its not bad enough to make her STOP drinking the red wine!!

ok...thats my rant for tonight.

I'm gonna send you that package now Laura.

Ok...I sent it...

Prepare to be overwhelmed.

[AndreaB]

Rachel,

I'm sorry.

I'll be waiting for all your new info when you have time to read and digest everything.

[miamia]

  Rachel--24 said:

Somebody sent me a BIG newbie package on the Lyme board. I'll be busy with this for awhile.

What does the package include-I'm curious

[happygirl]

x

[Rachel--24]

  AndreaB said:

Rachel,

I'm sorry.

Andrea....its ok...my mom just doesnt get it. She doesnt get how I could "smell" stuff long after its gone and if she cant smell it. Thats why she's going to my Dr. appt. on Monday....so she could ask the Dr.

He knows all about chemical sensitivities so maybe she'll "get it" when the Dr. explains it.

  miamia said:

What does the package include-I'm curious

miamia...its like 21 pages of links

lots of Lyme scientificness

  happygirl said:

Rachel, Yeah, I didn't think there was a Lyme test on there! He told me he was going to run it, but apparently he didn't. Good to know that I am not crazy!

Nope you're not crazy! No worries though...even if they'd ordered it...it would have been one of those tests with only like 60% sensitivity. You'll get tested soon enough....is it Wednesday??

[AndreaB]

Laura,

Why am I not too surprised that the doctor didn't run a lyme test?

Can't wait until you see the new doctor.

Rachel

I'll be interested to see if mom gets it after your appointment on Monday.