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Rachel--24

Omg...i Might Be On To Something

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Be careful with the Tindamax .... it goes after the Lyme. It was the one that really knocked me on my butt.

Uh oh! Donna I hope that works for you and doesn't put you in a tailspin.


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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Donna, what's the other med you will be taking?

Be careful with the Tindamax .... it goes after the Lyme. It was the one that really knocked me on my butt.

I don't know...they kept the paper with the name on it, lol. I thought it was written down on the sheet I have, but when I got home I noticed it wasn't.

The pharmacist here talked to me a little about the Tindamax...she said to take it with food because it can make me sick, lol, and to take it away from my supplements and stuff. Not really sure how I'm going to work all this out...may be time for another spreadsheet! I only have to take it for 14 days though.

I'm going to call Dr. S as soon as I get the other med to see if this will interefere with the challenge next week. I can probably wait until after the test if he thinks it will, but on the other hand he may not want me to do it at all if he thinks I have a parasite, lol.

I saw your update too! Hope the switch works and hope Chloe doesn't have to go back on meds.

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Donna,

About the B12, mine was the highest it could be according to my lab work. I freaked out and called my LLMD's office...he said unless I felt "zippy" that I should continue the shots. It's up to you...but I just thought I'd let you know what he said.

Good luck with the Tindamax. I have been on flagyl for over a week now, and it's not as bad as I thought it would be. I might regret those words soon, lol, but for now it's not that bad.

Babs herxes were WAY worse!

Carla,

Good luck back on mepron!


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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Thanks, Kassandra. Since I've been on Malarone and Lariam for so long, I'm not thinking it will be that bad. I'll be on the same dosage as last time though so that a significant amount more than the Malarone.

Sadie liked seeing you say hi the other night in chat. :)

Donna, the Tindamax goes after the cystic form of the Lyme. I was taking it for 7 days per month for 4 months. It wasn't that it upset my stomach, it was that it activated the Lyme. I didn't want to be the bearer of bad news .... I just wanted you to be aware that it can definitely cause a herx.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi Sherry, this seems so off topic, earthquake and everything, but they recently changed how they posted DQ genes. You are DQ2,5 , DQ2,5 now. (your siggie)

http://en.wikipedia.org/wiki/HLA-DQ

We have seen it changed now in the answers from enterolab that are posted nowadays too.

nora

Thanks, I need to understand what that means now!

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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Guest LittleMissAllergy

Ugh. Has anyone ever gotten this horrible burning sensation in their chest, that travels up to their throat? Maybe it's acid...maybe the doxycycline caused it. Whatever it is, it's not very fun.

Anyone know if warm lemon water helps or hurts the situation? I know it's supposed to help detox the liver. I'm just wondering if it'd overtax my liver right now or help it...and if it would help this terrible sensation in my chest or if it'd make it worse.

Ugh.

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It sounds like acid reflux. Doxy can be very hard on the stomach. I take something like Prilosec or Prevacid with some antibiotics to help with that.

Also, don't lie down within an hour after taking the doxy.

If it continues to cause problems after a couple weeks, then maybe you should ask for Dorxy, it's the same med but easier on the stomach.

I think it would be fine to try the lemon water.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Candice,

My LLMD prescribed Dorxy for me just because of that. (I have a history of GERD and EE... and even with Prolosec and Reglan I'm experiencing it. Hopefully the Carafate in addition to all that will help me heal.) Definitely something to look into. :)

Donna,

I hope that all works out, and that you don't herx too badly from the tindamax.

Carla,

Glad things are going well for you meds-wise.

Birdy

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Guest LittleMissAllergy

Ohhhh okay, thanks you two...

So this isn't something I should be super concerned about? It's a side effect of Doxy? I've just never felt acid reflux before so burning and pain in my chest felt kind of scary.

Thanks for the dorxy advice, I'll look into that :)

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Yep, normal side effect. Still undesirable.

Thanks Birdy ..... we'll see if the new meds go well. :P I'm kind of disappointed that it's the Lyme getting worse again, but I knew it was there still because I reacted so much to the Tindamax even when I was symptom-free otherwise. The tini stirs up the dormant stuff.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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thanks for that help rachel...i had a question for you but your box is full, tell me if that changes...sorry if i'm being annoying or anything, you don't have to :lol:

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Candice,

I live in Southern CA... in LA to be exact. :)

I have a Lyme friend who is 18 who lives in Northern CA. She's really sweet. You guys might live close to each other.

Carla,

I liked saying HI to Sadie! :P She's so cute! I didn't get her text until way after she sent it. I was in bed, my phone was downstairs.

Everyone,

Is it possible to snap a tendon in your pelvic area? I went to the gym for about 20 minutes yesterday, and I was on the treadmill and heard a pop. Ever since I can barely walk because my silly leg connector joint thing is KILLING me. Is that even possible?


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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thanks for that help rachel...i had a question for you but your box is full, tell me if that changes...sorry if i'm being annoying or anything, you don't have to :lol:

I cleared out my inbox.

Dont worry...nobody here is annoying. Questions are always welcome. :)


Rachel

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Is it possible to snap a tendon in your pelvic area? I went to the gym for about 20 minutes yesterday, and I was on the treadmill and heard a pop. Ever since I can barely walk because my silly leg connector joint thing is KILLING me. Is that even possible?

Is it in the front of the leg/thigh...could also be a hip flexor...mine was out for a LONGGGG time.

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Carla,

I liked saying HI to Sadie! :P She's so cute! I didn't get her text until way after she sent it. I was in bed, my phone was downstairs.

I figured you were in bed when you didn't answer. I told her if she wanted to text she had to ask you if it was a good time. :)

You haven't mentioned schooling at your uncle's, are you still doing that?

Sorry about the hip. Don't stress it .... take it easy. One time I pulled some mystery thing in my tricep ... I couldn't do tricep exercises for three weeks, but it was okay otherwise and healed up fine.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Sherry

About which kind of DQ2, the 2,2 or 2,5, the labs have started to report them and to list upp the cchances of getting celiac on a list.

read this thread here:

http://www.glutenfreeforum.com/index.php?showtopic=46507

so to make clear that you do not have double 2,2 it might be more clear to post that you have two copies of 0201 just like you did, or to write 2,5 and 2,5, or whatever what the labs and researchers will end up with. This is all new now and see how this list confuses people when they do not write 2,2 for the low risk DQ2 and 2,5 for the high risk 2,5.

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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Hello everyone,

Im slowly coming out of my weird place lol. I found more mold in my house the other day, thanks to my kids. They threw water in the bag of dog food and I had no idea. I picked up the bag and it ripped open and all the moldy dog food went all over my kitchen. I was so mad.

I hope to have my hair test back on saturday, monday at the latest. So be prepared for lots of questions, unless it all comes back normal lol.

paula


gluten, casein and soy free

on low carb/low sugar diet

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I picked up the bag and it ripped open and all the moldy dog food went all over my kitchen. I was so mad.

I'd be a tad bit mad too. :angry:

I'll be waiting for your results.....not that I necessarily know any answers but I like to know test results. :)


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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Is it in the front of the leg/thigh...could also be a hip flexor...mine was out for a LONGGGG time.

It actually is fine now! :P I don't know what it was, but it sure was painful.

You haven't mentioned schooling at your uncle's, are you still doing that?

I haven't been going for the past week or two. Last week I couldn't get out of bed, and earlier this week my tutor canceled. I still can't really get out of bed, but I have to go today. I'm a month behind the date I scheduled. :ph34r::(

It's really hard to force myself to get through the work, when I don't have the energy to care about it, let alone the energy to *do* it.


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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Kassandra, I have had that leg pain thing, for awhile then it is totally gone. I think it is a lyme symptom because it seldom happens anymore.

I am sorry about the school struggles. As I look back on many many years of chronic illness, I think one positive thing that I have learned is persistence. Not that I mean you have to do everything when you are not up to it. I just mean that I have learned more to do what I can when I can and then keep at it.

I think the quality of patience and perseverance is learned under circumstances such as what we are all facing. Seeing the "treasure" in the trial is one way to make meaning out of all of this.

Not that I wouldn't love to not have to deal with it at all! ;)


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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Nora I really appreciate that you pointed that out about the DQ2. It took me awhile but I figured it out, of course I already knew I was in the highest risk group possible!

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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Dear Everyone,

I decided to just jump on in here, since I have not had the opportunity to catch up with everyone lately. :) What a relief to see Sherry is alright! When I heard of the earthquake in China, I immediately worried about her. :unsure: Thank goodness she is posting! We had numerous earthquakes following the April 18th seismic episode. They say we could have had over 30 different ones! :o

You all are probably wondering what I have been up to. Cleaning and organizing the house is finally happening. The medicine cabinet, kitchen table, dining room table, and countertops are finally looking better. Mom and Dad have been warned that fingers are going to be cut off if they mess up anything! :angry::lol: How could I get anything new done if I have to spend what little energy I have redoing everything I just cleaned? :blink:

Another endeavor is spiritual growth and understanding. Reading books about angels and communicating with God by Dr. Doreen Virtue are due back at the library next Monday. I have to hurry up and read them all by then! Since I am taking notes, it takes a little bit longer. So far, I read the first book in two days, and I am on page 45 of the next one already.

Nothing new is in the health department at the moment. This is due to lack of money and Mom and Dad having to borrow my money to float us. You all know what that is like. I feel like I will never get my Lyme testing done! Dad ran into someone that went to a doctor here in town that helped her with digestive issues. He was telling her about my having Celiac and being on PPIs and not being able to go off of them.

The woman told Dad there is a chiropractor who gave her some supplements and enzymes that got her off of those terrible pills. I have been on Prilosec or some other PPI for nearly nine years now. Since these medications can cause alkalosis, difficulty absorbing nutrients, and increase the risk of stomach cancer, staying on them is more detrimental than helpful. Dad thinks it may be causing my GI symptoms.

Considering you need stomach acid to absorb nutrients and digest food, that would explain why nothing sets well most of the time.

I know Lyme could be causing it, too. However, vitamin deficiencies can cause terrible GI symptoms as well. Feeling like passing out all of the time is also an issue for me. Blood sugar lows are part of that, but research revealed that nutritional deficiencies caused by alkalosis can cause low glucose levels. Everything is connected. It is all about balance.

I was excited to see how many new members we have! :D Welcome everyone! Rachelville is the best place to be! All are true friends, and are here to share information. This is an awesome location to figure out your body! So many good suggestions come from the members here. If one does not think of something, someone else will.

Sincerely,

Jin


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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Good to see you Jin. :D

I've been wondering where you were.


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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Everything is connected. It is all about balance.

I think you're right about this Jin. ;)

Thanks for the update...I hope the house stays clean after all your efforts. :)


Rachel

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