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Rachel--24

Omg...i Might Be On To Something

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Carla...we miss you in Lyme chat!!! Where have you been? :)


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Candace, I reacted to an IV that I think was glutathione, but I need to confirm that. Whatever it was, it had tiny amounts of soy in it. So I am not sure if that was the issue. In ART, I tested okay for IV glutathione, but not oral or cream. My LLMD said, "No IV glutathione" but was giving me other IV's so I think it was because I reacted to it when he tried it.

I did IV chelation, and B vitamins. They tried a tiny amount of IV cysteine, but that did NOT go well. I am not sure if they tried minerals. Stupid lyme brain, I don't remember. I need to keep better track.

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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The iodine test Dr K suggests, where it is supposed to last 24 hours on the skin? Well on my palms it lasts about 4 hours. I wonder if he puts it in a specific area of skin?

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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Carla...we miss you in Lyme chat!!! Where have you been? :)

I've been there every night .... where the heck have YOU been? :lol: Obviously, we've been there different times! I'm watching Ugly Betty and Grey's tonight. :P


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Rachel- just got back from my IV, didn't go to well...broke out in a rash and got dizzy for about 15 minutes. But now I'm okay. Have you ever tried glutathione cream?

I dont tolerate glutathione in any form. I recently tried transdermal DMPS which contains glutathione. Its 4 parts glutathione to one part DMPS. Both of my Dr.'s wanted me on the transdermal DMPS but they werent sure whether I'd be able to tolerate the glutathione.

I didnt tolerate it but I do great with IV DMPS....its nothing but the DMPS....no glutathione.

I think it was the choline though...isnt it a fat?

I'm not familiar with choline?? This is the first I've seen it mentioned anywhere so I'm not sure what it is.


Rachel

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I've been there every night .... where the heck have YOU been? :lol: Obviously, we've been there different times! I'm watching Ugly Betty and Grey's tonight. :P

Oh, lol. I guess we must have been missing each other. Last night I was out to dinner with my mom for her b-day. And I don't know where I've been the past few nights. <_< Can't remember. :lol:

I TOTALLY forgot Grey's was on tonight...


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Back from my exam. I lost my mind and let her give me a TETINUS SHOT!!! I can't believe I did that. My arm is very sore at the moment to constantly remind me of my stupidity! :angry::lol:

She also x-rayed my foot to see why my toe hurts so much.

She's running lot of bloodwork, but mostly it'll all be the conventional stuff conventional docs usually run, but she is testing for uric acid to rule out gout. She'll also be checking a couple of other things not usually done.

:o

That's all I have to say. :lol:


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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Yeah I take Waiora Zeolite because they clean the cages from metals and toxins first. If you want more info you can pm me.

So anyways does anyone tolerate tequila? :P

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So anyways does anyone tolerate tequila? :P

:lol::lol:

I dont think I wanna test this one out!! :P


Rachel

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I just want to say hello to everyone. I think i finally caught up. I ahve been in this weird sort of experimentational stage. Trying out new foods etc. Some days have been ok some really abd I am trying really hard to find a balance. It is very hard. Hopefully soon I will be able to.

I hope everyone is doing ok

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Hi Mia. :)

Well, so far so good with my oral minerals. Yay!

This is the only brand I've been able to tolerate...high quality and totally hypoallergenic. I'm taking zinc, molybdenum, folinic acid W/ B12 and the purest form of selenium available.

I think since I'm doing ok I'll go ahead and order the other minerals as well. I still need chromium and should probably get some mag. and calcium.

I've eaten normal food for lunch everday this week since I've been unable to come home for lunch. :o

I've been eating mac and cheese!!! :o

Also eating lots of hot dogs and bologna....sandwhich rolls and bagels too.

I forgot my digestive enzymes the other day and got pretty bloated...other than that I've been doing ok. :)


Rachel

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Miamia, it's good to see you. :)

Rachel, I'm glad you've been able to eat "normally" and still feel okay ... I put "normally" in quotations because I'm not sure that mac and cheese and hot dogs are "normal" lunches! :lol:

Oh, lol. I guess we must have been missing each other. Last night I was out to dinner with my mom for her b-day. And I don't know where I've been the past few nights. <_< Can't remember. :lol:

I TOTALLY forgot Grey's was on tonight...

I completely know what you mean about not remembering where you've been! I was kind of wondering where you were in chat, too. :D

So anyways does anyone tolerate tequila? :P

I don't drink any alcohol right now, but tequila has always been a safe one for me. I've always had the potential to get a wicked hangover after only a couple drinks, but it never happened with tequila. So, a few months ago when I was off meds and had a drink, it was a margarita. :P I did fine with it. I haven't had one since because I don't think my liver needs the extra stress now that I'm back on meds.

Wine and vodka were always the alcohols with the highest potential to make me sick the next day.

When I say sick, it's always been Lyme symptoms. When I first got "sick" with Lyme this go round, I would describe it as being like a hangover, or like when I was pregnant .... both times when my Lyme would flare.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Yeah I take Waiora Zeolite because they clean the cages from metals and toxins first. If you want more info you can pm me.

So anyways does anyone tolerate tequila? :P

I found that I don't tolerate wine but I tolerate beer okay. Guess its from the sulfites in wine???

Miamia, it's good to see you. :)

Rachel, I'm glad you've been able to eat "normally" and still feel okay ... I put "normally" in quotations because I'm not sure that mac and cheese and hot dogs are "normal" lunches! :lol:

I completely know what you mean about not remembering where you've been! I was kind of wondering where you were in chat, too. :D

I don't drink any alcohol right now, but tequila has always been a safe one for me. I've always had the potential to get a wicked hangover after only a couple drinks, but it never happened with tequila. So, a few months ago when I was off meds and had a drink, it was a margarita. :P I did fine with it. I haven't had one since because I don't think my liver needs the extra stress now that I'm back on meds.

Wine and vodka were always the alcohols with the highest potential to make me sick the next day.

When I say sick, it's always been Lyme symptoms. When I first got "sick" with Lyme this go round, I would describe it as being like a hangover, or like when I was pregnant .... both times when my Lyme would flare.

Wonder why tequila is the lesser of the evils? What about beer - have you tried that?

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I hope you guys can help me help my friend. Here is the story.

She has 3 kids - all of them are unwell in different ways.

The oldest (9 years old) has epilepsy, anxiety, constipation (bad, bad C), sleeping problems, bed wetting, nervous bladder.

The middle (5 years old) has asthma, major food allergies, chronic hoarse voice, leaky gut and what I believe to be a yeast problem and sleeping problems.

The youngest (4 years old) has been hospitalized 3-4 times since birth. He has bad food allergies - well he's allergic to EVERYTHING. He is slightly autistic, add, adhd which he is now medicated for. She has finally come around and removed things from his diet like gluten and soy, but she does allow it weekly because the stupid Doctor (allergist) she saw told her to "rotate" the foods. Well, we all know that it sometimes takes us days to get over one incidence with a no no food.

Anyway, the last 6 weeks he has thrown up on either Saturday or Monday and then he's fine. Wierd huh?

I am trying to convince her to have him tested for lyme.

She has done the small intestine biopsy - negative. Food allergy panels (through conventional docs). Now they want him to go to an immunologist. AND he's on prednisone!!!

I told her last night that I am afraid he will get labeled with some kind of "immune disorder" and they won't find the real underlying issue. Many people with lupus and other immune problems have discovered things like lyme, metals, yeast - whatever.

She gives them all melatonin Everynight to go to sleep and has so for years now. I mentioned that it might shrink the pituitary gland, but since the docs have never advised her that it could, she is going to continue.

They are all always sick with some kind of virus, they break out in wierd unexplainable rashes, just lots of wierd symptoms between all of them.

I am hoping to convince her to see Dr. J, which is close to her, but you know how the conventional docs are....they will torture the patient until there is no more tests left, no more medications left to take.

She told me one time that they live near some kind of lead plant??? and have to be regularly checked for lead levels in the blood. Nothing has ever shown, but you know how metals are, they don't stay in the blood for long.

Any ideas of what I can suggest that might convince her to get the youngest tested for lyme? I feel like if he's positive - then she'll check the other kids - but he is by far the worst off.

Is it sounding "lymish" to you ?

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Wonder why tequila is the lesser of the evils? What about beer - have you tried that?

Beer = bad!!! I didn't even drink it much in college!

Maybe with the tequila it's the salt that helps me :lol:

Is it sounding "lymish" to you ?

YES! Especially since they live close to Dr. J .... that means they live in the Lyme capital of the world! :o Explain to her how he won't only test for Lyme, but every underlying condition that might be causing the symptoms. In the end, it will be cheaper to go to him than doctor after doctor .... also it's worth ruling out before paying the thousands it will cost over the years to manage his symptoms.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Guest LittleMissAllergy
I forgot my digestive enzymes the other day and got pretty bloated...other than that I've been doing ok. :)

Rachel...that is SO SO amazing that you don't have to eat beef and peas. You give me hope. You do too, Carla :)

So I'm supposed to be on digestive enzymes, but I'm afraid to take them because I get sensitive to my supplements so fast, and you have to take so many in a day. They really help though? Perhaps I should try just one today. Hmm...

Yesterday I was already re-sensitized to TMG, B-50 and Milk Thistle (after being de-sensitized four days ago!). I could feel it too because my stomach boated out and was soooo painful.

Doctors and parents just don't understand how extreme and uncomfortable this bloating can be! I think in their minds they picture the kind of bloating they just take some Beano for :huh:

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Hi Mia. :)

Well, so far so good with my oral minerals. Yay!

This is the only brand I've been able to tolerate...high quality and totally hypoallergenic. I'm taking zinc, molybdenum, folinic acid W/ B12 and the purest form of selenium available.

I think since I'm doing ok I'll go ahead and order the other minerals as well. I still need chromium and should probably get some mag. and calcium.

I've eaten normal food for lunch everday this week since I've been unable to come home for lunch. :o

I've been eating mac and cheese!!! :o

Also eating lots of hot dogs and bologna....sandwhich rolls and bagels too.

I forgot my digestive enzymes the other day and got pretty bloated...other than that I've been doing ok. :)

Rachel-

I ahve been eating mac and cheeses too!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Beer = bad!!! I didn't even drink it much in college!

Maybe with the tequila it's the salt that helps me :lol:

YES! Especially since they live close to Dr. J .... that means they live in the Lyme capital of the world! :o Explain to her how he won't only test for Lyme, but every underlying condition that might be causing the symptoms. In the end, it will be cheaper to go to him than doctor after doctor .... also it's worth ruling out before paying the thousands it will cost over the years to manage his symptoms.

Is SC really the lyme capital!!! OMG! I did grow up not far from the border. Plus, if the kids got it from her through pregnancy, she probably got it in the same place I did. We lived next to each other on the lake.

Rachel...that is SO SO amazing that you don't have to eat beef and peas. You give me hope. You do too, Carla :)

So I'm supposed to be on digestive enzymes, but I'm afraid to take them because I get sensitive to my supplements so fast, and you have to take so many in a day. They really help though? Perhaps I should try just one today. Hmm...

Yesterday I was already re-sensitized to TMG, B-50 and Milk Thistle (after being de-sensitized four days ago!). I could feel it too because my stomach boated out and was soooo painful.

Doctors and parents just don't understand how extreme and uncomfortable this bloating can be! I think in their minds they picture the kind of bloating they just take some Beano for :huh:

I am sensitive to supplements at times and digestive enzymes have always helped me. its hard to research but its worth making sure they are grown from fungal sources.

If you don't feel comfortable with taking a supplement try eat a little pineapple with meals.

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Is SC really the lyme capital!!! OMG! I did grow up not far from the border. Plus, if the kids got it from her through pregnancy, she probably got it in the same place I did. We lived next to each other on the lake.

No, LOL, since you were talking about children, I thought you were talking about the pediatrician Dr. J in CT. Sorry.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Beer = bad!!! I didn't even drink it much in college!

Maybe with the tequila it's the salt that helps me :lol:

YES! Especially since they live close to Dr. J .... that means they live in the Lyme capital of the world! :o Explain to her how he won't only test for Lyme, but every underlying condition that might be causing the symptoms. In the end, it will be cheaper to go to him than doctor after doctor .... also it's worth ruling out before paying the thousands it will cost over the years to manage his symptoms.

Carla,

lost sat signal :angry: last night and missed all but first 5 min of Grey's Anatomy and it looked like a good one!! Got Ugly Betty though what a riot she is!!! So, are Meredith and Derek back?

You have posted "confused" events on this thread how's this....went to Dunkin Donuts yesterday AM for bagel for my daughter, ordered bagel, coffee at drive thru, got coffee, paid and drove OFF!!!! No bagel and no change DUH.. had to stop, get out of car and walk to pick-up window for bagel and change!!! This is why I stay home, am a danger to bagels everywhere :P

I like tequila in small doses must be the lemon LOL


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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Susie, sounds like something I'd do. :D Better forgetting a bagel, than a kid, probably a good idea to just keep the kids in the car and go through the drive-thru!!

You can watch Grey's online at abc.com!! They have them online usually the next day, so you can watch Grey's today. I won't tell anything so you can watch it yourself.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Mia,

It's always good to see you. :D

Rachel,

I have to agree with Carla. That's not really "normal" food but I'm glad you been doing ok with it. :)


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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Carla,

lost sat signal :angry: last night and missed all but first 5 min of Grey's Anatomy and it looked like a good one!! Got Ugly Betty though what a riot she is!!! So, are Meredith and Derek back?

You have posted "confused" events on this thread how's this....went to Dunkin Donuts yesterday AM for bagel for my daughter, ordered bagel, coffee at drive thru, got coffee, paid and drove OFF!!!! No bagel and no change DUH.. had to stop, get out of car and walk to pick-up window for bagel and change!!! This is why I stay home, am a danger to bagels everywhere :P

I like tequila in small doses must be the lemon LOL


Self dx celiac disease

Gluten free since July 2007

Clinical dx celiac disease November 2007

Self-dx Lyme disease May 2008

Lyme confirmed positive Western Blot May 2008

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