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Rachel--24

Omg...i Might Be On To Something

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You guys, I am totally crazy :lol:

I just read through the first 100 pages of this thread :o I was getting a little nostalgic I guess with Rachel mentioning it was near the 2 year anniversary of the thread, and then Rinne's recent posts.

It seems like a life time ago, yet I remember all of that like it was yesterday.

Has anyone kept in touch with Evie?

I don't think you're crazy.

I haven't been in touch with Evie since Christmas. I do have her email though so if you want it I'll see if I can get a response from her. She has a hard time getting on the forums and hasn't been on D/S either.


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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I was looking for somthing in Medline and searched pubmed.com and then I tried autism methylation and there are some hits. One of them is in the ajcn (interesting site, I found a lot on vitamin D there before) http://www.ajcn.org/cgi/content/abstract/80/6/1611

I have not gotten as far as PST yet.....but ajcn is indexed in medline (lots of publications are not, like anything orthomolecular and other stuff)

mercola mentions houses and cleaning chemicals now......http://articles.mercola.com/sites/articles/archive/2008/02/26/how-to-keep-your-home-clean-naturally.aspx and ozone generators not good http://articles.mercola.com/sites/articles...your-lungs.aspx further down that page.

Today I pulled out the cast iron frying pan instead of the non-stick pan--I keep reading on mercola's site that non-stick is not so good. (nothing got stuck on the cast-iron pan today...)

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Rachel-

you know me I cannot handle anything!!!! but i have been able to tolerate the MSM thats why i suggested it.

Rinne-

it is so nice to hear from you !!!!!!!!!!!!!1

Julie -

I am so sorry about the outbreak i had pm'd you and not heard back and figured you had had an outbreak alothough i was hoping that was not the case. I really hope you are doing better.

Nyxie-

that sounds like an awful doc appt. I don't blame you for being angry.

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You definitely aren't the only one Andrea, I miss Rinne too!

QUOTE (AndreaB @ Mar 19 2008, 02:31 PM)

Rinne,

I'm not posting as much but I'm always reading and keeping up with everyone, as well as keeping everyone in my thoughts.

Patti------Me too

ME 7.................miss you all

Hi Rinne............

I emailed Evie about 3 weeks ago-- the flu got she and hubby. know she can't get on to post here like Andrea said.

love

Judy


Judy in Southern CA

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which resembles an icecream sandwich and it is made with vegetables.

Something so veeeerrrrryyyyy wrong about that statement!!! :lol: Glad you're back Rinne!!!

I really need feedback on my GI appt this afternoon. I'm feeling very unsatisfied. Wondering if I'm right to feel this way or if I'm blowing things out of proportion.

...

Do you think I'm justified in wanting to find a new GI?

Yeah, probably justified. It's hard enough to cope with all that we've got going on without having our doctors dismiss us. I hate when they give up! :angry:

I just read through the first 100 pages of this thread :o I was getting a little nostalgic I guess with Rachel mentioning it was near the 2 year anniversary of the thread, and then Rinne's recent posts.

It seems like a life time ago, yet I remember all of that like it was yesterday.

Has anyone kept in touch with Evie?

Good times, lol! I haven't seen Evie in a while now...she came on a few months ago to say she was okay, but nothing since then.

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I saw Evie on the on-line list recently (maybe a couple weeks ago or so). I don't believe she posted, though.


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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ROFL Patti! Is that actually your cat? Isn't Allo too old for that kind of dancing?

Nyxie, I don't know what the best thing to do about doctors is. When I found Dr. H, I gave up on the rest of them and let Dr. H handle it all. I don't know if that's the best thing for you, but a lot of Lymies have gut problems, if yours are from the Lyme, a regular GI won't know what to do.

A team of docs like Rachel and Donna have is not a bad idea, but that's not what you're talking about.

Maybe the best thing to do is ask L. about it at your next consut and see what she thinks. I gave up completely on GI docs .... they didn't find my bacterial overgrowth, lack of good bacteria, or my tapeworm. Totally useless to me!

You guys, I am totally crazy :lol:

I just read through the first 100 pages of this thread :o I was getting a little nostalgic I guess with Rachel mentioning it was near the 2 year anniversary of the thread, and then Rinne's recent posts.

It seems like a life time ago, yet I remember all of that like it was yesterday.

Yeah, that's a little crazy!!! Was I in the first 100 pages? I know I was here early, but don't know if it was that early.

Today I pulled out the cast iron frying pan instead of the non-stick pan--I keep reading on mercola's site that non-stick is not so good. (nothing got stuck on the cast-iron pan today...)

nora

A properly seasoned cast iron skillet is so much better than non-stick!! I just rinse mine and dry it with a paper towel! It doesn't even need washing!

Non-stick is horrible for you .... the fumes will kill a bird!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Julie -

I am so sorry about the outbreak i had pm'd you and not heard back and figured you had had an outbreak alothough i was hoping that was not the case. I really hope you are doing better.

Thanks Mia, I am doing better today :) I know I owe you a pm :lol:

How are you feeling, any results back from all the tests you had recently?

I also took a lot of MSM, I am not sure if it made any difference or not :huh:

ME 7.................miss you all

Hi Rinne............

I emailed Evie about 3 weeks ago-- the flu got she and hubby. know she can't get on to post here like Andrea said.

love

Judy

GOOD TO SEE YOU JUDY!

HOW HAVE YOU BEEN DOING?

THANKS FOR THE UPDATE ON EVIE :)

Good times, lol! I haven't seen Evie in a while now...she came on a few months ago to say she was okay, but nothing since then.

It was fun to go back :lol: There's a lot of good information actually, it should be documented, or spreadsheeted or something!

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I actually think that would be a good idea Nyxie.

You could post either in the Coping, Post Diagnosis, or Doctors categories, you might get some good feed back from others who have experienced what you did with your Dr.

Thanks! I posted it on Coping and over at LN. Don't know what to expect but, hopefully, someone can help me muddle through all this. :)

I don't know either, seems like what Rachel mentioned about researching everything thoroughly for herself--sometimes is our only option.

Like Julie said to me awhile back, it's especially hard when our doctors that we do have trust in don't agree. How much worse when we don't know if we can trust or not.

I've had doubts about this guy from the beginning, but was hoping he could give me some answers anway. I mean, what GI has never heard the term "bazooka barf" before? :lol:<_<

that sounds like an awful doc appt. I don't blame you for being angry.

Thanks. I really need the affirmation right now. Don't trust my perceptions these days.

Yeah, probably justified. It's hard enough to cope with all that we've got going on without having our doctors dismiss us. I hate when they give up! :angry:

When he told me he wanted to see me again in 6 months, I asked "Why? Out of idle curiosity?". :lol:


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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Thanks for those links Nora :)

Yeah, that's a little crazy!!! Was I in the first 100 pages? I know I was here early, but don't know if it was that early.

I think I saw you pop in once in the first 100 pages.

It was mostly Rachel, Patti, Donna, Calicat, Christine, Celia/Cecile, Mia, Andrea, Mango, and myself....and pop ins from Chelse, Evie, Vincent, Mouse, Judy.....and I am probably forgetting a few people....

Nyxie, glad you posted in another category, hopefully you will get some responses soon.

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A properly seasoned cast iron skillet is so much better than non-stick!! I just rinse mine and dry it with a paper towel! It doesn't even need washing!

I can't get mine like that, lol. I don't use soap, I just rinse and use a scrubby pad because bits of food stick, then dry it with a towel...I put oil on it immediately while it's still hot/warm and let that sit, then wipe it out. I have to do that every single time I use it, lol. What the heck am I doing wrong?! :ph34r:

There's a lot of good information actually, it should be documented, or spreadsheeted or something!

Probably won't be me for a while, lol. I actually TRIED this once, but gave up because my lymie brain couldn't deal with it all. :P

When he told me he wanted to see me again in 6 months, I asked "Why? Out of idle curiosity?". :lol:

:lol: OMGosh, that is a GREAT answer!!!!!! I LOVE it!!!

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I saw Evie on the on-line list recently (maybe a couple weeks ago or so). I don't believe she posted, though.

I DON'T THINK SHE CAN GO ON.........JUST CAN READ

THINK THIS IS STILL THE CASE.

JUDY

QUOTE (miamia @ Mar 20 2008, 06:31 AM)

Julie -

I am so sorry about the outbreak i had pm'd you and not heard back and figured you had had an outbreak alothough i was hoping that was not the case. I really hope you are doing better.

ME TOO JUST HEARD ABOUT YOU.

TAKE CARE.

I'M OK.

JUDY


Judy in Southern CA

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Nyxie, I don't know what the best thing to do about doctors is. When I found Dr. H, I gave up on the rest of them and let Dr. H handle it all. I don't know if that's the best thing for you, but a lot of Lymies have gut problems, if yours are from the Lyme, a regular GI won't know what to do.

A team of docs like Rachel and Donna have is not a bad idea, but that's not what you're talking about.

Maybe the best thing to do is ask L. about it at your next consut and see what she thinks. I gave up completely on GI docs .... they didn't find my bacterial overgrowth, lack of good bacteria, or my tapeworm. Totally useless to me!

I think you're right. Will let L and Dr H take care of it. They'll refer me to a GI if they think I need something like that. This guy has given up and, for at least right now, is more or less useless.


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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I think you're right. Will let L and Dr H take care of it. They'll refer me to a GI if they think I need something like that. This guy has given up and, for at least right now, is more or less useless.

I would take comfort that you ruled out everything. :)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I would take comfort that you ruled out everything. :)

Sort of, I guess. He never did run liver or pancreas panels. Those were done when I ended up in the ER, and those weren't even complete panels.

Still, feel better just letting it go and handing it over to L and Dr H. One less doc on my list, one less thing to worry about.

Also thinking about dumping the holistic MD and letting them deal with my endocrine issues. Trying to simplify, and all that.


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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I can't get mine like that, lol. I don't use soap, I just rinse and use a scrubby pad because bits of food stick, then dry it with a towel...I put oil on it immediately while it's still hot/warm and let that sit, then wipe it out. I have to do that every single time I use it, lol. What the heck am I doing wrong?! :ph34r:

Well, I have two .... one is vegetarian! :lol:

If I brown meats, I use that skillet .... I scrape it with the spatula the best I can, and scrub as little as I can. It generally needs a little more cleaning.

The other skillet, I never need to do more than scrape with a spatula and rinse. If that doesn't get it clean, I wipe it with a paper towel to see if that will ... the scrubby messes it up and it takes a couple times of cooking and oiling to get it back.

When I cook, I warm the skillet to allow the oil to penetrate before I start cooking.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Also thinking about dumping the holistic MD and letting them deal with my endocrine issues. Trying to simplify, and all that.
I probably would. Dr. H is holistic and knows about all that stuff. :D

gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I can't get mine like that, lol. I don't use soap, I just rinse and use a scrubby pad because bits of food stick, then dry it with a towel...I put oil on it immediately while it's still hot/warm and let that sit, then wipe it out. I have to do that every single time I use it, lol. What the heck am I doing wrong?! :ph34r:

Donna, you could try reseasoning in the oven. You can google for lots of suggestions on that.

I use spectrum shortening for seasoning. You get it warm, then rub on the shortening, then put in the oven (I forget the temperature) for awhile. 30 min to an hour is what I remember. Since you are having trouble, you might do that twice and see what happens.

Sherry


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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That sounds good. I wrestle with this too because my LLMD doesn't necessarily cover the basics that a good GP should do, but finding one to trust is an issue. I hate having to educate them and then be viewed as hypochondriac. It seems like it comes down to educating yourself and then going in to ask for what you think you need.

Sherry


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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......

For your second act, you should appear before we think of you :P:lol:

Good luck with your Rinne bars, I hope you figure all the distribution stuff so you can get them out there for all to enjoy!!

ROTFLMAO

Thanks Julie. :)

.....

Do you think I'm justified in wanting to find a new GI?

Hi, more important than what I think, though since you don't know me you probably weren't thinking of me, :) is what do you think? It sounded to me like you didn't feel that you were being heard and the fact that he called it Lymes! Obviously he is not a LLMD.

.....

You guys, I am totally crazy :lol:

I just read through the first 100 pages of this thread. :o

I've done the same thing though not lately :ph34r::lol: so if we are crazy I know I am in good company.

Something so veeeerrrrryyyyy wrong about that statement!!! :lol: Glad you're back Rinne!!!

.....

:P We have to get our vegetables someway, why not with chocolate? :lol:

I've served these and watched peoples' faces change from a reluctant willingness to taste them to astonishment at how delicious they are. I love to blow peoples' tiny little minds, mine snapped years ago. :rolleyes::lol:


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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Patti,

Yes, please do tell us about your avatar.

Judy,

GOOD TO SEE YOU!

Nyxie,

I'll be watching for updates an what your doctor tells you or what others suggest.

Nora,

Teflon isn't good. I used to use it all the time. I don't like any nonstick but don't have a choice for muffin tins, at least as far as I've seen.


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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Well, I have two .... one is vegetarian! :lol:

If I brown meats, I use that skillet .... I scrape it with the spatula the best I can, and scrub as little as I can. It generally needs a little more cleaning.

The other skillet, I never need to do more than scrape with a spatula and rinse. If that doesn't get it clean, I wipe it with a paper towel to see if that will ... the scrubby messes it up and it takes a couple times of cooking and oiling to get it back.

When I cook, I warm the skillet to allow the oil to penetrate before I start cooking.

Donna, you could try reseasoning in the oven. You can google for lots of suggestions on that.

I use spectrum shortening for seasoning. You get it warm, then rub on the shortening, then put in the oven (I forget the temperature) for awhile. 30 min to an hour is what I remember. Since you are having trouble, you might do that twice and see what happens.

Okay, I'll try all of these suggestions, lol! I use it mostly for frying meat, so maybe that's where I'm going wrong.

:P We have to get our vegetables someway, why not with chocolate? :lol:

I've served these and watched peoples' faces change from a reluctant willingness to taste them to astonishment at how delicious they are. I love to blow peoples' tiny little minds, mine snapped years ago. :rolleyes::lol:

Hum, well I can't wait until THESE are marketed then. :P

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That sounds good. I wrestle with this too because my LLMD doesn't necessarily cover the basics that a good GP should do, but finding one to trust is an issue. I hate having to educate them and then be viewed as hypochondriac. It seems like it comes down to educating yourself and then going in to ask for what you think you need.

Thanks! Confirmation is nice. :)

To be honest, I've had to do all my own trailblazing with every doc I've seen so far, with the exception of the LLMD. I'm ready to let someone else do the driving for a change.

Hi, more important than what I think, though since you don't know me you probably weren't thinking of me, :) is what do you think? It sounded to me like you didn't feel that you were being heard and the fact that he called it Lymes! Obviously he is not a LLMD.

I really didn't know what to think. My perception has been "off" lately and I wasn't sure if I was missing something glaringly obvious or if I was on target this time.

We don't know each other. Perhaps that will change in time. :)

Unbiased opinions are often the best. :)

You're right tho. He really wasn't giving me what I was asking for.

I'll be watching for updates an what your doctor tells you or what others suggest.

Me too! :lol:


2/05 GERD

3/07 Multinodular goiter (suspicious for follicular neoplasm as of 11/07)

5/07 Iron, vit D, and B vit deficiencies (all of them), but particularly B1, B5, B12 and folate

6/07 Elevated mercury, subclinical hypothyroid, adrenal fatigue, CFS

9/07 Endo/Colonoscopy - neg biopsy (only took 2 samples), diverticulosis, benign polyps

10/07 PCOS (cysts in breasts, ovaries and cervix)

10/07 Major reaction to wheat challenge. Minor reactions to corn, dairy, barley, and refined sugar

2/08 Candida (per Doctor's Data)

3/08 Lyme disease (clinical dx), began tx

3/08 Intradermal allergy testing - high for wheat, beef, pork, tuna, and corn - moderate for almonds, chicken, coffee, eggs, garlic, gluten, green peas, milk, rice, soy, sugar, tomatoes, green peppers, celery, sesame, garbanzo, mushroom, cabbage, strawberries, and spinach.

4/08 Began tx for babs and bart

4/08 Slightly elevated titres for EBV and HHV-6. IgG1 deficiency.

"What doesn't kill us makes us stronger... and stranger."

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ROFL Patti! Is that actually your cat? Isn't Allo too old for that kind of dancing?

:D You're right--Allo's dancing days are pretty much over. It's a picture I got in an email that I thought was cute--and he does look a little like Allo at that :) .

It was fun to go back :lol: There's a lot of good information actually, it should be documented, or spreadsheeted or something!

Sounds like a job for Donna :lol:

Hi Andrea! :D

I enjoy these little "reunions" :)


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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Okay, I'll try all of these suggestions, lol! I use it mostly for frying meat, so maybe that's where I'm going wrong.

No, it's not wrong, it's just going to require what you're doing every time .... just don't expect to fry a perfect egg in that pan! That's why I have two separate one. The good thing about cast iron is it's so cheap! (Not as cheap as non-stick, but not as pricey as the other stuff)


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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