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Rachel--24

Omg...i Might Be On To Something

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Samento

The information on this site provides lots of reasons to hope for recovery, they are doing studies with Samento and seeing real improvements in late stage Lyme patients.

My Nutramedix Samento is sitting here in front of me, I set the timer so that I would remember to take it before I ate but I ignored the timer :rolleyes: because I thought I wouldn't forget. As Susan says, "harumph". :lol: I am only taking one drop a day at this point but tomorrow I will go to two drops and slowly work up to the maximum dose which is about 17 drops a day for me I think.

I think hope makes an enormous difference, if only because regardless of how we feel if we have hope we have found a source to draw strength from and from there we can fall toward the pillows. I am very serious about pillows you know. :angry: Not angry, but I needed a strong and stern emoticon. :lol:

I spent 50 years throwing myself on the rocks, example: 5 years ago I started a new job and that first night I went out and twisted my ankle so badly I could barely stand the next day. I went to work. I know now that I should have taken to bed for at least a week but I didn't know how to do that. I didn't know that I had a choice, I was such a well trained little citizen that my corporate obligations :lol: were more important than my health. Rocks. I know a lot about rocks.

Pillows, I don't know so much about but I am trying to learn. I think of Rachelville as a Pillow Place. :)

When do you leave Andrea? When is Thanksgiving down there?


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Laura,

I'm sitting here, actually crying while reading your account of the wedding. What a wonderful, thoughtful thing your friends did in honor of you. It is beyond words. And that you thought of us at that moment--that is so touching. :)

I'm so incredibly happy that you were really able to enjoy yourself, and didn't get sick. I prayed for that for you--to have this one weekend free of the worry and discomfort.

Too funny about telling your parent's the wrong time :D Darn good thing they were close by!

Thanks for staying up to tell us all about it--I was headed to bed myself (really bad day) and saw you were posting. I just had to stick around to see how you did!

The picture is lovely--you both look beautiful B)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Laura,

That is the most thoughtful thing....you have the sweetest best friend. I cried as I read your post....very touching. Thanks for sharing the events of the wedding day with us. :)

It sounds like it couldnt have been more perfect. ;)

I'm sooo happy that you had such a perfect and blissfully happy day! You deserve lots of these days with all you've been going through. :)


Rachel

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When do you leave Andrea? When is Thanksgiving down there?

I agree, we are trained to fall on the rocks, get the job done, no matter your health. We all need to learn to fall on pillows when it is needed. :)

We leave on the 23rd, which is Thanksgiving, and come back the 27th. We actually get in about 2 am on the 28th. Don't know what I'll do without this thread for 4-5 days. I'll be behind big time unless I can use Dad's computer.

So glad you had a wonderful time! That's fantastic that they did the donation for the wedding favors! I teared up too.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Laura, that was really sweet of your friend to honor you like that on her wedding day! Thank you for sharing and for thinking of us! :wub::wub::wub:


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Laura, how wonderful, I'm teary too. :)


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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this crazy thing is not letting me do regular reply, have to do fast reply, wha twill I do without emoticons.... :o

Rinne...I have read CAdillac Desert, many years ago, it was wonderful, now somewhat dated (we discussed it last night). There is another well-known best-selling author who stirs up trouble and also writes about California issues (including the murder of his own father), my new friend last night were talking about the fact that this guy had written about some cotton/agriculture issues in central Cal, and that he (my new friend) wanted to get together with that author and write a book on water issues.....just so happens that that author lives here in town, right next door to my best friend.... (big laughing face here).....

I certainly would not turn down a date with Bev either, just to clarify. :)

LAURA - I was overjoyed at yoru first post, of the wedding, and I somehow got chills, good chills, at your followup post. What an incredible friend and a wonderful day for you. How unbelievably thoughtful and special.

Off to dinner at brother's friends' house.....

see you :)

p.s. am wondering if my new friend from the pub is a ROCK or a PILLOW?????


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Guest melannen

Finally caught up :)

Feels like forever since I've been over here...though it was less then 24 hours :lol: I usually check this thread a couple times through the day but was wiped out by a migraine and have been sleeping it off (feeling much better now).

Susan - So glad you had fun! Sounds like a great guy :)

Andrea - Glad to hear you're going to visit your dad, hope you and the fam have a great time

Laura - That is so sweet!! So happy you had fun and didn't get sick!

ummmm...dang, I know there was more...have to go back and skim to see what I forgot :o

*Edit*

Rachel - I hope you work out the perfume problem, I've never gotten perfumed mail but I HATE how some magazines have a million different scented perfume adds....makes the mag smell like a perfume store :P

Rinne - lyme beetle :lol:

Carla - glad you're getting more energy, I hope this trend continues :)

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Rinne...I have read CAdillac Desert, many years ago, it was wonderful, now somewhat dated (we discussed it last night). There is another well-known best-selling author who stirs up trouble and also writes about California issues (including the murder of his own father), my new friend last night were talking about the fact that this guy had written about some cotton/agriculture issues in central Cal, and that he (my new friend) wanted to get together with that author and write a book on water issues.....just so happens that that author lives here in town, right next door to my best friend.... (big laughing face here).....

p.s. am wondering if my new friend from the pub is a ROCK or a PILLOW?????

I read Cadillac Desert many years ago and found it a good read in addition to be informative. When we had our organic garden farm I was involved in water issues and was much more informed about the issues. I suspect many of them are the same but only more urgently so now.

I'm hoping he is a PILLOW. :lol:

Jessica, sorry to hear about the migraine. I've had them. :( I hope you feel better soon.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Laura

put some thoughts on your other thread but wanted to tell you have beautiful you both looked.

so happy for you.

nite

judy


Judy in Southern CA

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Apparently, instead of doing wedding favors, Meghan and Brian made a contribution to the Celiac Disease Foundation in honor of me. They had apparently wanted to do something for me since I have been so sick lately, and so instead of spending money on favors that people don't really remember, they wanted to do something meaningful. So on one of the tables in the front, they had a frame with the announcement of the donation to the Celiac Disease Foundation and had a write-up about what Celiac was.

That is just amazingly thoughtful and touching. Thank you for sharing. :)


V

Severe airborne allergies since childhood. Was on constant antihisamines with behavior issues. Digestion issues started noticably around 1985.

1992 IBS diagnosis.

2004 Corn allergy - through diet discovery.

2005 RAST negative to all food allergies. High cholesterol diagnosed as PCOS.

2006 Immunolabs ELISA and IgE assay:

IgE to Corn, Milk, Eggs, & White Bean.

IgG to peppers, blk/wt pepper, beans, almonds, yeasts.

Neg. to Celiac, gluten, etc. High IgA level.

2008 No longer considered as having PCOS, or associated risks.

Currently avoiding corn, eggs, cow & goat milk, all beans (cept some soy derivatives & peanut oil), cruciferous veggies, onions/garlic, carrots/celery, anything bilberry/cranberry/blueberry, peppers, and anything remotely corn derived, corntaminated.

Currently off all allergy medications for airborne allergies and breathing fine.

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I dont get all these people accepting a life of pain due to Fibromyalgia. Am I missing something?? huh.gif

I have a book about TMJ....in the book it says TMJ goes hand in hand with Fibromyalgia. WTH??? unsure.gif

I tried to learn about Fibromyalgia (since I have TMJ) and the whole thing just didnt make sense to me. I *still* dont know what it really is.....or what suppossedly causes it. WHAT IS FIBROMYALGIA?????

Undertreated Thyroid? I notice Rachel that you have Graves. Read http://www.stopthethyroidmadness.com and you may have get inspiration.


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

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Laura-

that is a great story- I think when we are sick alot of people don't know how to act. I know I have experienced alot of weird reactions from friends just becuase they don't know what to do but that is truly an amazing story and shows that she is really a great friend- you are very lucky

Miamia

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Carla,

That's interesting about your dairy.....I'll be watching for updates.

I'm fine today. I am questioning whether my number from Enterolab was so high because I ate so much dairy before and more than likely have a leaky gut. I know Reece's Pieces have casein, and I can only assume the popcorn did, too. I'm not going to test again till next week because we're going to IU to see Morgan this weekend ... haircut/color, and IU game.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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So quiet in here this morning. I'm used to taking quite a bit of time to catch up. :)

Carla,

Maybe you can tolerate smaller doses of dairy.

Miamia,

Hi! Hope you are doing better this week.

Hi Ryan!


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

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Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

Evie, I was wondering how you were doing! I'm sorry that things have not improved :(

Good luck at the doctor--I will say a prayer for you :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Undertreated Thyroid? I notice Rachel that you have Graves. Read http://www.stopthethyroidmadness.com and you may have get inspiration.

Actually Graves Disease is OVERactive thyroid....it means the thyroid is already producing too much hormone all on its own. People with Graves do not take thyroid hormone replacement....that would just worsen the problem.

In my case I had radioactive iodine treatment to treat Graves and shut down my thyroid for good. :(

Now I do need to take thyroid hormone and I'm definately not undertreated.....I already take natural thyroid (Armour) and I'm doing fine with it. :)

My Hypothyroid symptoms consist of dry hair, hairloss, dry skin, carpul tunnel, orange spots on my palms and fatigue. I dont get Fibromyalgia symptoms when I'm not on enough Armour.

I think I am actually on too much Armour right now and will be decreasing my dose after I get test results back.


Rachel

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Evie, I have been wondering how you are, I am so sorry to hear that you are feeling weaker. I hope that you will be feeling better soon. I am keeping you in my prayers, I am so glad you posted.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Sorry to break in here...am going to Dr. soon..still having bad diarrhea, worse. not be surprised if hospitalized..getting very weak..your prayers and concerns have kept me going...thanks so much.

Love to all, evie

Evie,

I was worried about you all weekend. I was hoping to hear back some good news. :( What are they giving you for the C.Diff? I'll continue with the prayers and I'm glad you are gaining some strength from the support and love from the people here. Get well soon ok. :)


Rachel

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