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Rachel--24

Omg...i Might Be On To Something

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Dr's got me on caprylic acid, more probiotics, a candida diet, and chia seeds.

Yup. Ch-ch-ch-chia like on the ads.

Just what I need... relaxed intestines.

:lol:

Thanks for the update Nyxie.

What do the chia seeds do exactly?? Dr Oz was talking about them on Oprah, they were included in his "superfoods", but I missed what he said about them.

Rinne sends a Rachelvillian hi and that she's thinking of everyone.

Hi to rinne!!! I wish she would come back and post, I miss her contributions, her info, insight, and scientificness :)

I heard from Dr. H tonight. He's starting me back on 1 Malarone per day because of the air hunger. I've also had night sweats .... started out as just thinking I was hot, but last night it was drenching. No other symptoms though, I generally feel normal, or what is "normal" to me, LOL.

I hope the Malarone helps Carla :)

OMGosh Donna, I had my first Bumble Bar :lol::lol: It only took me like a year and a half to try one!

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:D :D :D Carla! I booked my flight!!!!! :D :D :D I'm so excited! :wub::):P

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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Nyxie,

How are you feeling? Are you having major die off symptoms from the Candida?


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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OMGosh Donna, I had my first Bumble Bar :lol::lol: It only took me like a year and a half to try one!

Aren't those good! We like the almond ones. :)

We don't have the chocolate ones since they have peanuts in them. :(


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, it's been a GI tract kinda week. Got back the results of the stool testing on Monday.

I've got "many yeast". No kidding, that's what the report says and is exactly how the dr told me. Also have a rather large amount of Pseudomonas aeruginosa. Other than that, everything was fine. Dr's got me on caprylic acid, more probiotics, a candida diet, and chia seeds.

Yup. Ch-ch-ch-chia like on the ads. I think this is going to be my new vice. I've been "Racheling" them since yesterday. :P Oddly enough, when I was running errands today, I was craving the darned chia seeds instead of ciggies. Now THAT's something!

Saw the GI today too. Gave him a piece of my mind and it felt really good. He wants me to get a Hida scan done (finally) and wants to see me again once that's done. Also scheduled another abdominal u/s in a couple of months. He wrote an rx for something that's supposed to help with the pain, but don't think I'm going to take it. He said its a smooth muscle relaxant. Just what I need... relaxed intestines.

Nyxie-

I bought chia seeds a while ago and have not tried them yet-they are so good for you. I really want to try them . How do you eat them?: do you just chew on them?

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:D :D :D Carla! I booked my flight!!!!! :D :D :D I'm so excited! :wub::):P

:D :D :D YAY!!!! :D :D :D Hey, everyone, Kassandra's coming to visit! :wub:

I can't wait to pick up my Malarone today! He will have me do a loading dose of 4 per day for three days, then I'll drop down to one. I hope my expectations aren't too high, but I'm thinking I'll feel better and I have these delusions I won't have a babs herx, LOL.

It's just I feel SO good right now, it's hard to believe I still have babs .... but these are my two symptoms I had five years ago right before I declined.

The Cowden protocol gets everything except babs ..... so it must be working for the Lyme. I really feel that Lyme is a "non-issue" right now.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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What do the chia seeds do exactly?? Dr Oz was talking about them on Oprah, they were included in his "superfoods", but I missed what he said about them.

I didn't see that show either. Hadn't heard about consuming them until my doc brought it up.

Dr Oz/Oprah article is here: http://www2.oprah.com/health/oz/slide/2008...5_350_108.jhtml

Nutritional info on chia is here: http://www.eatchia.com/chiasourceeng.htm

Sorry about the links... stil haven't figured out how to do one of those tiny url things.

I bought chia seeds a while ago and have not tried them yet-they are so good for you. I really want to try them . How do you eat them?: do you just chew on them?

I drink them. I soak them in water to make a gel... and they take a lot of water. 1/3cup of seeds to 2 cups of water. This makes a kind of concentrate that'll keep in the fridge for awhile. When I want a cup, I take 2-3 heaping spoonfuls of the concentrate and add water. Stir, let sit for a little bit, stir, and drink.

And I've finally realized what the appeal is for me. Its like liquid bubblewrap. Fun to play with! Kinda hard to describe tho. You'll just have to try it for yourself. ;)

There are recipes online, but I haven't really looked much into them yet.

How are you feeling? Are you having major die off symptoms from the Candida?

I'm actually feeling pretty good. Very minorly headachy, but not bad at all. The only thing that might be a die-off symptom is that the amount and strength of myclonic jerks before I go to sleep has really increased. Then again, maybe that could be neurolyme. I just dunno anymore.


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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Carla, Have you tried Noni (Nutramedix)??

Thats the one I was taking for babs....its the herb that Dr. K finds to be most effective for babesia. I'm pretty sure theres some threads about it on LN.


Rachel

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Thanks, Rachel, I have that in my cupboard from before I started treatment with Dr. H. I'll take some this morning. I've also been taking Artemesia and Lariam (not an herb). :(

Dr. H said the new Nutramedix herb for babs is supposed to be released this month. He was on vacation last week and said he was going to call and see if it had been released. I told him I didn't think it had, I'd been reading on the internet, and he said that I wouldn't find it on the internet because he was going to be the first to use it. :) So, I'll be adding that soon.

Do you think if I took the noni now it would get rid of the air hunger before the funeral I'm playing my flute for at 11AM? LOL Yesterday's funeral was tough ... it's hard to play when you can't get a full breath. Three funerals this week .... the one Saturday is for a friend of mine's dad, so I'm a little nervous for that one.

Adam said yesterday that I really am in touch with my mortality playing at funerals all the time ... I said, "Yeah, so do the kids, they're sledding at the cemetery!" :lol:


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I've never heard of chia seeds before today, lol! :lol: I will have to check them out though...I need a fiber source other than my modified citrus pectin which is HUGELY expensive, lol.

Rinne sends a Rachelvillian hi and that she's thinking of everyone.

Please tell Rinne hello for me--I hope she's doing well :D

Thanks for the update and ditto what Patti said! :P

I heard from Dr. H tonight. He's starting me back on 1 Malarone per day because of the air hunger. I've also had night sweats .... started out as just thinking I was hot, but last night it was drenching. No other symptoms though, I generally feel normal, or what is "normal" to me, LOL.

I've been having night sweats too, and like you I thought I was just hot. I don't know...maybe it's just menopause for me, lol.

OMGosh Donna, I had my first Bumble Bar :lol::lol: It only took me like a year and a half to try one!

:lol: See, aren't they good?! Which flavor did you try...I didn't find a bad flavor, but chocolate was always my favorite.

:D :D :D YAY!!!! :D :D :D Hey, everyone, Kassandra's coming to visit! :wub:

Now THAT ought to be fun!!! :)

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Now THAT ought to be fun!!! :)

Yep! We are even going to go to the grocery together! :lol: :lol: :lol: Check out this store www.junglejims.com

For a few days, I'll have two 17 year olds in my house sleeping all day! :P Chloe said, "YAY, another Lymie in our house!" :lol: I think she likes knowing there are other "kids" (though Kassandra just seems to mature to fall into that general category, as do the other 17 year olds on this thread, LOL), out there who are battling the same thing.

Don't worry, Kassandra, I told the kids you are where I was a few months ago. ;)

I need to know what you can/can't eat! LOL No dairy, no gluten, anything else I should know?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Kassandra and Carla,

Have fun! That's exciting. :)


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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Holy cow, is that where you shop all the time Carla?! :lol: Um, I don't think we have anything quite like that around here. :P

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No, but if it were closer I probably would! It's almost 30 minutes away. I don't actually think there's anything quite like it anywhere, LOL. It's like an amusement park grocery! They really have everything, even Starbucks, LOL.

I just took my first Malarone ... four times per day for three days. I wonder if it will cause a herx since I've been off it for a few weeks. I certainly hope it doesn't cause my air hunger to flare worse!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Adam said yesterday that I really am in touch with my mortality playing at funerals all the time ... I said, "Yeah, so do the kids, they're sledding at the cemetery!" :lol:

LOL! :lol: :lol:

Yep! We are even going to go to the grocery together! :lol: :lol: :lol: Check out this store www.junglejims.com

For a few days, I'll have two 17 year olds in my house sleeping all day! :P Chloe said, "YAY, another Lymie in our house!" :lol: I think she likes knowing there are other "kids" (though Kassandra just seems to mature to fall into that general category, as do the other 17 year olds on this thread, LOL), out there who are battling the same thing.

Don't worry, Kassandra, I told the kids you are where I was a few months ago. ;)

I need to know what you can/can't eat! LOL No dairy, no gluten, anything else I should know?

I'm so excited to meet all of the kids! :D No dairy, gluten and soy. Those are the main ones. I am going to try and bring my new protein powder so we can have smoothies together! :lol::D:P

Let's see I can give you a day of what my food looks like (assuming I'm NOT nauseous, because then ALL bets are off, lol)

Breakfast: Smoothie/Fudge or these Almond Butter Brown Rice Cereal Balls

Snack: Gluten free bagel (although they are fattening so I try to eat it with Mepron) with lunch meats

Lunch: Salad, some form of Protein

Dinner: Fish, Chicken, Turkey... you know...if things are prepared "naturally" I am good to go. Like, I could have had what you guys had last night, but with no cheese. We use olive oil instead of butter obviously.


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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Well, the soy will be the one I really have to think about ... I was gluten, dairy, and soy free for six months, LOL, but never got the hang of just "knowing" what had soy.

I generally cook everything from scratch, so it's pretty easy ..... I'll have to get some gluten-free stuff again, LOL. Since I'm on Malarone, I need to make some fudge again, I haven't made it since I stopped taking it.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Quick drive by....have to catch up later.

FINALLY some good news. Enterolab fecal fat malabsorption retest (just under 10 months post gluten-free) are normal at <300. I was 1322 last April.

Also Dr. G said he prefers me to be on Zithromax and asked that I switch. So tomorrow I'll start, just picked up my script.

My doctors (allergist and LLMD) both agree that Vit D levels need to be pursued, and I had a blood draw today.

My IVs: I am getting EDTA to chelate the lead, plus something else to help the chelation be more effective. They also did HOT which is where they give you a tiny bit of heparin, and withdraw a large syringe of blood then reinject it. The blood goes through a little machine that is a special light treatment. It activates the blood cells toward viruses and lyme and the activated cells cause other cells to be activated. They did 4 times back and forth into my system today.

Okay all for now, off to shop with my daughter who just got engaged last week. :)

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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Sherry, congratulations on your good news, and congratulations for your daughter!! :)

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:D :D :D YAY!!!! :D :D :D Hey, everyone, Kassandra's coming to visit! :wub:

How fun!!! You guys will have to take lots of pics. Kass, are you taking your laptop?? Then you guys can sit in the same room and post on the forum, like Carla and Morgan used to do :lol::lol:

I didn't see that show either. Hadn't heard about consuming them until my doc brought it up.

Dr Oz/Oprah article is here: http://www2.oprah.com/health/oz/slide/2008...5_350_108.jhtml

Nutritional info on chia is here: http://www.eatchia.com/chiasourceeng.htm

Sorry about the links... stil haven't figured out how to do one of those tiny url things.

Thanks for the info on the chia seeds Nyxie, your links worked great :)

Sounds like they are not only high in fiber, but mineral and fatty acid rich.

:lol: See, aren't they good?! Which flavor did you try...I didn't find a bad flavor, but chocolate was always my favorite.

I tried the chocolate one, pretty tasty.

I must admit thought I expected them to be more candy bar like (like a chocolate coated luna bar perhaps?), they are actualy quite healthy tasting, nutty and seedy, which I like.

Quick drive by....have to catch up later.

FINALLY some good news. Enterolab fecal fat malabsorption retest (just under 10 months post gluten-free) are normal at <300. I was 1322 last April.

Sherry, thanks for the update.

That's good news about the fat malabsorption retest results.

Congrats on your daughter's engagement!

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They also did HOT which is where they give you a tiny bit of heparin, and withdraw a large syringe of blood then reinject it. The blood goes through a little machine that is a special light treatment. It activates the blood cells toward viruses and lyme and the activated cells cause other cells to be activated. They did 4 times back and forth into my system today.

Sherry

My llmd has this. He called it something else. It sounded sort of scary to me! How was it?

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Update on my LLMD appointment today to review my Igenex test. He doesn't think I am positive for lyme. Well, I am sort of confused. I am sort of positive because I had 1 band but sort of not positive because your supposed to have 2 bands at least. So, not sure...

I thought maybe if I was positive it would give me a clue on where to go with my daughters leg/bone pain.

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Good news Sherry! :D

April,

Sorry. I don't know what to think 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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Carla and Kass, What fun!!!!

Sherry, Congrats on your daughter's engagement.

AAAAUUUGGGGHHH! The craving monster has awakened! And it wants donuts!

Seriously, my body wants something sugary and doughy and it wants it NOW!

Why is it that I have no problem not going out to buy cigs but practically have to handcuff myself to the sofa so I don't go out and buy a half dozen french crullers?

HELP!


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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