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Omg...i Might Be On To Something

Rachel--24

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happygirl Collaborator
happygirl
Posted

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Rachel--24 Collaborator
Rachel--24
Posted
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Here is something else that some believe is an essential part of Lyme treatment. I've seen it mentioned lots of times on the Lyme board and also Scott (the better health guy) has talked about it as a necessary part of treatment. Hypercoagulation.

Open Original Shared Link

CarlaB Enthusiast
CarlaB
Posted

Nothing in the mail today either, except a Christmas card from our plumber.

AndreaB Contributor
AndreaB
Posted

Carla,

I was originally thinking you'd get your results the week of the 4th. Hopefully real soon!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Carla,

Have you called the doctor and checked if the results have come in over there yet?

CarlaB Enthusiast
CarlaB
Posted
Carla,

Have you called the doctor and checked if the results have come in over there yet?

No, I haven't. I don't like the phone <_<:lol:

It will be three weeks on Monday, but I know the doc was going to send it on Tues., which means the lab got it on Wed. The bill they sent said Thursday. With Thanksgiving, I think Andrea's right .... I should get it next week, but it may even be late in the week.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Carla,

I was just worried if Igenix didnt have your correct address. I forgot about you getting the billing info and ripping it open in a frenzied moment of anticipation! :lol:

Ok...I went to Bioset and #2 tested the water. The water in the living room showed nothing bothersome. The water in my room showed a STRONG recation. There is something in the room I sleep in that bothers me.

I already know what it is....its the heater. The vent in the living room barely has anything coming out of it and the air is much cooler in that room. My room is the warmest of all and feels stuffy to me...especially when the heater comes on.

This morning I work up *because* the heater came on and was causing me to react.

For some reason the vent in this room wont close so my mom and her hubby bought some type of cover that seals it off. :)

I think we will maybe test the water again later on.

The only other thing I can think of that would cause me to react in this room would be the computer. Chemically sensitive people can sometimes react to electronic devices. There was a time when I was really really sick that I was afected by the computer....but not really anymore.

However, there is a TV in the living room that is almost always on....and the water in that room was fine. I'm thinking it cant be anything other than the heater. Also the Bioset computer was showing that I was reacting to an inhalent.

The computer was showing all kinds of problems that arent ususally as bad. Even my brain...which normally tests great every week...was slipping. She had to do some stuff in order for me to be able to handle the treatment load this week. The purpose of the brain testing is to see if your body can handle the treatment. This week was not so good....even though there was only like 4 things in my glass. :(

Anyways, she said that bioset lady #1 will be back for my Tuesday appt. I guess #1 already knows whats going on with me this last couple weeks so she'll be looking further into it when I see her.

I guess #1 has been in Canada...working at a clinic they have over there.

I'm off to a 2 year olds b-day party now. Hope I dont get "chemicaled". B)

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miamia Rookie
miamia
Posted
No, I haven't. I don't like the phone <_<:lol:

It will be three weeks on Monday, but I know the doc was going to send it on Tues., which means the lab got it on Wed. The bill they sent said Thursday. With Thanksgiving, I think Andrea's right .... I should get it next week, but it may even be late in the week.

CArla-

you are so patient. I already called quest about my lab results and monday am calling igenix to see when my results will be in. I always call sometimes its pointless but sometimes it gets things to move faster and they will fax the results instead of sending them if thats what they were planning to do. That can save a few days.

Miamia

happygirl Collaborator
happygirl
Posted

x

jerseyangel Proficient
jerseyangel
Posted

Yea--the whole board seems quiet. Hope all is well with you, Laura. I'm just stopping by on my way to bed. My life used to be a lot more exciting :lol:

AndreaB Contributor
AndreaB
Posted

Hi all. It has been quiet in here. :huh:

I've been revamping the school schedule. We are stretching 1st grade over 1 1/2 years instead of 1. The curriculum we use is advanced and by the time they finish 10th grade it's like 12th grade in the public school system. Talitha has a 4 month break before we pick up again. Should give her plenty of time to get over her burnout.

Rachel,

That's interesting about your environment. Can't wait to see what #1 has to say on Tuesday.

Have fun and I hope you don't get sick.

Mia,

Hope you get some answers when you call. Can't wait for your results either. :)

Mango04 Enthusiast
Mango04
Posted
Mango....have you seen any koalas at all??

Here's one I found in the wild. You can't see him too well since the pic is so small. I have a close-up as well LOL but I haven't uploaded it yet.

Thanks for all the friendly hellos everyone. I think I'm the most random person on this thread right now. You're all having these meaningful, scientific, life changing discussions and I'm like woohoo check out the koala. haha Oh well, I did say I'd find one for Rachelville...so there you have it. :)

I gotta go, but I'll be back soon. Bye :)

happygirl Collaborator
happygirl
Posted

x

AndreaB Contributor
AndreaB
Posted

Looking forward to you coming home and being more of a regular on here again Meredith. :)

Hang in there L. You are on the road to finding your answer. :)

miamia Rookie
miamia
Posted
So, after fully realizing that my most recent doc didn't order the Lyme test this fall, I went back to my old records, from when I was in Auburn (this was pre-Celiac diagnosis, when I didn't have a diagnosis other than IBS and fibromyalgia...imagine that ;))

When I was seeing my GP (after seeing another GP, an infectious disease -bc of mono- and a GI who all told me I had nothing wrong with me but IBS, fibro, and post viral/mono fatigue)---we were exploring other options. One of the first things that my mom asked for me to be tested for was Lyme. First things---this was even before she figured out it was Celiac.

Back then, I didn't know I had to be so proactive, etc. I talked to him and among other things, he said he'd test for it. (And I loved this doctor--he at least knew "something" was wrong, he believed me, etc) I never had anything come back positive (until my celiac antibodies, done by my rheumatologist)....and there wasn't any reason (oh, have I learned) to check my records....

but there is no record that I was ever tested for Lyme. So here all this time, I've at least thought I had one negative test (although, I know the validity/reliability of the test is less than desirable)....and now I realize that I don't. So I have never been tested, at all, in all three years of all of this h$ll!

I honestly don't know if this is what I have, obviously! But, still! How frustrating!

I'm mad!!!!!

Laura-

This is frustrating. Doctors see so many patients and it seems like no matter how good the doctor is sometimes they forget they are not jsut seeing "patients" but "people" and they look over something that can be critical. To them it is another test to you it could be an answer. I guess your story just another example of why we need to be so proactive with our health and have to stay on top of everything!!! ( even though it gets exhausting). Well hopefully you will get some answers soon!!

Hang in there- hope the gluten reaction has ebbed!!!

Miamia

Hi all. It has been quiet in here. :huh:

I've been revamping the school schedule. We are stretching 1st grade over 1 1/2 years instead of 1. The curriculum we use is advanced and by the time they finish 10th grade it's like 12th grade in the public school system. Talitha has a 4 month break before we pick up again. Should give her plenty of time to get over her burnout.

Rachel,

That's interesting about your environment. Can't wait to see what #1 has to say on Tuesday.

Have fun and I hope you don't get sick.

Mia,

Hope you get some answers when you call. Can't wait for your results either. :)

Andrea-

Not just talitha (love that name!!!) but I'm sure you need a break too. God knows you deserve one. You ahve to take care of your kids- their allergies, their education, your allergies and all of us!!! (we are alot to handle!!!!)

Miamia

dlp252 Apprentice
dlp252
Posted

Hi everyone....haven't gone back to read up, but just wanted to say hi from somewhere in the Caribbean! It's a sea day today, our first stop is tomorrow at Montego Bay, Jamaica. So far today, I've eaten twice, lost $18 in the casino and just went shopping, and it's only 11:00 a.m. here. :lol: I think we'll eat again in a couple of minutes. :lol: Bye for now.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Good morning :)

I had a great time time at the birthday party yesterday....and I didnt get sick. :D

On my way home last night I realized that a whole 8 hours had passed at the party and not even ONCE did I think about my Igenix results or any of this stuff that is usually forefront in my mind. I didnt get home till 1:30 this morning and I *could* have stopped at the mailbox to look for the test results but I just didnt even want to wreck my night thinking about all this. I figured it could wait until today. :)

Hi everyone....haven't gone back to read up, but just wanted to say hi from somewhere in the Caribbean! It's a sea day today, our first stop is tomorrow at Montego Bay, Jamaica. So far today, I've eaten twice, lost $18 in the casino and just went shopping, and it's only 11:00 a.m. here. :lol: I think we'll eat again in a couple of minutes. :lol: Bye for now.

:lol::lol:

Donna...sounds like you're having a great time!! Obviously food isnt getting in the way. :lol: Woohoo!! Donna is in the Carribean!! :)

I think I'm the most random person on this thread right now. You're all having these meaningful, scientific, life changing discussions and I'm like woohoo check out the koala. haha Oh well, I did say I'd find one for Rachelville...so there you have it. :)

WOAH...Mango....this is sooooo COOL! :o

I cant believe you really got to see a koala in the wild!!! I would probably still be under that tree staring at it. :lol: Thanks for coming through and bringing some of Australia to Rachelville :D

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I'm mad!!!!!

I dont blame you Laura. How frusterating. :angry:

I'm not surprised though. I dont know if the Dr.'s just "forget" or if they sometimes just say things to appease us....especially if they feel we wont double check. I think sometimes they really have no intention of following through but just say what we want to hear.

This same thing has happened to me lots of times.....but by then I was already checking and rechecking everything. They hated me....I was like their worst nightmare. :lol:

I actually havent had any problems like this whatsoever since I stopped seeing those doctors.

That sucks that all this time later you're finding out the test was never ordered. Even though you werent relying on those results as being a definitive answer....you still believed they had done what you requested.

I would be mad too. :angry:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I walked to the mailbox...no Igenix results. I'm sure my Dr. must have them....so I'll find out the results tomorrow anyway. I wonder why they didnt send them to me though. :huh:

CarlaB Enthusiast
CarlaB
Posted

Mia, I don't know that I'm patient, I think it's more that I hate the phone even more than I hate waiting!!! I don't really know WHY I hate the phone so much .... I seldom talk on it, and I do have a cell phone, but seldom use it. I'd prefer to see people in person ... set up something via emial, then meet in person. I thought about having them fax the results to Adam's office, but I don't want them badly enough to call.

Mango, very cool koala. I still have the stuffed Koala that my grandparents brought back from Australia for me when I was VERY little. It's made from kangaroo fur. The music box that was in it is long gone, the claws, too, but it's "on display" in my room. My dad named him when I was little -- Tuffy.

Andrea, take it easy with the homeschooling. It's not worth all the hassle of having the kids be so far ahead ... I always thought it was, but in the end, it really doesn't matter. It's more important to be a good mom and teach them a love of reading ... my kids, even the older ones, still talk about how we did history -- we skipped using a book and would read about a certain time period, the little kids would draw pictures of it, the bigger ones would also write a report. We didn't cover as much information as the textbooks do, but the kids remember EVERYTHING! Morgan and Luke say that it's the ONLY history they remember of any they've taken. It's all from reading books and skipping textbooks. Math and grammar need a text, but history and science can be done in a much more fun way. Definately not worth getting burnt out in 1st grade! Take it easy. (End of free advice B) ). I ended up ditching the curriculum and making my own.

We went to see Casino Royale last night ... the James Bond movie. It was pretty good -- told the story about how he became 007.

AndreaB Contributor
AndreaB
Posted
You ahve to take care of your kids- their allergies, their education, your allergies and all of us!!! (we are alot to handle!!!!)

:lol: You guys are far easier than my daughter to handle. Maybe because you are older and don't live with me. :P

Hi everyone....

Hi Donna! Glad you're having fun and enjoying your food. :D

I had a great time time at the birthday party yesterday....and I didnt get sick. :D

Yay for not getting sick!!!! :D

I ended up ditching the curriculum and making my own.

Washington state requires 11 subjects to be covered and the kids have to take a test every year to see if they are up to par with the public school system. We haven't got into science and history yet, thankfully. I'll keep your idea in mind. It seems others have done that too.

CarlaB Enthusiast
CarlaB
Posted
:lol: You guys are far easier than my daughter to handle. Maybe because you are older and don't live with me. :P

ROFL!!!

Washington state requires 11 subjects to be covered and the kids have to take a test every year to see if they are up to par with the public school system. We haven't got into science and history yet, thankfully. I'll keep your idea in mind. It seems others have done that too.

I had it easy. Indiana is a private school state, so you needed to do nothing! No notification or anything! I DID teach all the subjects, and they DID learn all they needed to, but we could be VERY flexible so that it fit the kid's learning style and needs.

What's not fair about testing the home schooled kids is that HALF the school kids fall into the bottom 50 percentiles, by definition!! So, they shouldn't demand that your kids be held to a higher standard, but I know it happens. I would have been in trouble with that as Chloe has learning difficulties, she gets special treatment now that she's in school, but she can't pass the standardized tests ... even though home schooling worked better for her, if she had been giving testing, I couldn't have continued on ... and she can't pass the tests going to the public schools either. I was getting support from a local dyslexic school in teaching her. The ironic thing is that she tests a couple grades above her grade in her reading ability ... :blink:

Have a good time with it ... I miss home schooling.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
Good morning :)

I had a great time time at the birthday party yesterday....and I didnt get sick. :D

On my way home last night I realized that a whole 8 hours had passed at the party...

Rachel, is there something AT HOME that's making you sick? Mold, maybe?

(Sorry for parachuting in, I've been lurking, trying to keep up...)

DingoGirl Enthusiast
DingoGirl
Posted
Yea--the whole board seems quiet. Hope all is well with you, Laura. I'm just stopping by on my way to bed. My life used to be a lot more exciting :lol:

um, yeah, mine too! WAY more exciting, in fact! :huh: Patti, how is your BIL doing, and your sister? praying for you.

Here's one I found in the wild. You can't see him too well since the pic is so small. I have a close-up as well LOL but I haven't uploaded it yet.

Thanks for all the friendly hellos everyone. I think I'm the most random person on this thread right now. You're all having these meaningful, scientific, life changing discussions and I'm like woohoo check out the koala. haha Oh well, I did say I'd find one for Rachelville...so there you have it. :)

HI MANGO! the "check out the koala" post is my favorite one of today! random, yes, no scientificness, yes - - - having nothign to do with anything - you know that' s the kind I like best :lol::lol::lol:

HI DONNA! nice to see you. :)

Washington state requires 11 subjects to be covered and the kids have to take a test every year to see if they are up to par with the public school system.

Andrea.....heinous (for the home-schooling mommy). :lol:

morning eveyrone......am sick today.....and SORE THROAT sick! am staying in bed with one dingo, the TV on, reading, just drank hot chocolate (might have my mom bring me some Bailey's :lol: - it IS gluten-free, right?) Used to get sore throats ALL the time....haven't had one in over ayear. am kind of shocked.

tired, back to bed, just got caught up and saying hi....that's it! Dingo'd everything else. :huh:

xoxo

jerseyangel Proficient
jerseyangel
Posted

Hi Susie :D Sorry to hear of your sickness and sore throat :( Truly heinous :angry: (first tme I've used that word--it's funny! Kinda like heinie :P ) Glad to hear you're going back to bed--rest is the best thing for you right now. Remember--lots of liquids and try gargling with some warm salt water. :)

Thanks for asking about my BIL--no news, they're still seeing doctors and all that.

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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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