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Rachel--24

Omg...i Might Be On To Something

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Quick drive-by to say hello! I was REALLY busy at work yesterday, so I couldn't get online...not really caught up yet either, but did see that Paula and Nyxie aren't feeling well...hope you are feeling better soon. Hope Paula didn't have to go to the hospital!

I'm feeling MUCH better this week...still really exhausted but at least no cold symptoms!

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Nyxie,

I'm sorry your help wasn't much help. Hope the meds work well for you and you don't have any reactions. Get some rest!

Sherry,

9 hours! Is that one way? Hope everything goes well for your renewal as well.

Donna,

Yay for feeling better! Hope you can keep us with everything and not get too worn out.


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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Nyxie,

Hold on for your Mepron herx if you end up taking it. They're really rough! I'm on a really low dose and I still herx pretty hard! <_<

I'm glad your appt went well though.


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, hopefully, Nyxie won't herx too bad on Mepron since she's taking Malarone first!

I had my phone consult today. No surprises ... she thinks it's both Lyme and bart, so I'm on the meds I was on before.

I took one med today already .... feel a little like I've been drinking LOL, if only all herxes were only this bad! Okay, no martinis for me, but pass the minocycline! LOL

I'm on my way to Bloomington to take Morgan to Riverdance. Talk with you later.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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So I am not caught up but I am back. :)

I had an aha moment with dairy yesterday, I had eaten some cheese the night before and had no reactions and then almost 24 hours later I was suddenly very cranky and bloated. So, I failed my monthly cheese test but this time I got the very precise experience of it hitting me. <_<

I love cheese. It wasn't even great cheese that I indulged in. Next month my favourite goat cheese. :lol:

I had a wonderful time away but it is good to be home. :)


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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Welcome back Rinne. :)

Sorry about the dairy. :( We've had Stoneyfield ice cream lately. Num!


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 the girls and I are feeling better today. But my youngest son had to come home from school cause he was sick. So we are thinking it is just an virus and not salmonella, thank goodness.

Update on the bio mom. We went to court today. She is in jail for 30 days. If i hadnt let her know about court today tho she would of not shown up. How can a woman not pay child support but come to court in a nice outfit and hair and nails done. i cant stand that woman at all.


gluten, casein and soy free

on low carb/low sugar diet

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Paula it does sound like the flu. My brother, sister and their friend they live with had diarrhea and vomiting. They felt real sick for a few days. Glad you are feeling better.

I don't know how much more of this I can take. I have quit sugar, well ice cream and candy completely. I have been glutened, molded and now rusted. :wacko:

Does anyone know what I can do to take this horrible salty, rusty, metal taste out of my mouth? It seem to be getting worse. I can't even eat. Everything taste like foil or blood.

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Guest tamedandfoxed

Random Question:

What does Leaky Gut FEEL like?

My appt with the Naturopath didn't work out-- the idiots on the phone said the first HOUR was free--turns out it was the first FIFTEEN MINUTES! as IF that's helpful?? Since I didn't have 80 bucks on me, I had to reschedule for next week. I'm not sure if my vaginal infection is just starting to effect my stomach now, OR if i bruised my belly at work or sometime and forgot about it.. there seems to be a faint bruise but i can't tell. it's tender. :( I've been bloated lately (which could just be pms OR the fact that i started taking Iron which I HATE--it says non-constipating but it is a lie!!)

Thanks guys! I hope you are all doing well,

I have been busy and haven't had time to catch up!

Katy

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I don't know how much more of this I can take. I have quit sugar, well ice cream and candy completely. I have been glutened, molded and now rusted. :wacko:

Does anyone know what I can do to take this horrible salty, rusty, metal taste out of my mouth? It seem to be getting worse. I can't even eat. Everything taste like foil or blood.

Are you taking charcoal or chlorella? Those both might help. I'm sorry you're going through this.


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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I am so very behind on posts here :blink:

Katy, I don't think I personally FEEL my leaky gut. Others might have a different individual experience, but I just know mine is reflective of all the symptoms I have (i.e. multiple food intolerances). As well as my autoimmune condition, my immune system responding inappropriately by recognizing everything as a foreign object that it must attack.

Lisa, do you still have amalgams in your mouth?

Paula, glad you and the girls are feeling better.

Rinne, good news on your dairy aha moment. Sometimes we aren't aware just how much something is affecting us. I find the longer I stay away from something and then ingest it the reaction is so much more clear and obvious, and that connectionis made.

Carla, I don't know if I missed posts or what, but I didn't know you were having symptoms again. I hope the meds help and that you feel better soon. Have fun with Morgan at Riverdance, lucky you :)

Donna, glad you are feeling better too.

I had the blood draw for the LEAP test today. My plan to do all my bloodwork in one swoop didn't work out, one had to be a fasting draw, the other had to be after 12 noon. She had to stick both arms, my veins weren't cooperating. She told me she wasn't going to put me through the pain of digging around any longer in the first arm, which I appreciated, and moved along to the other one.

So that one is done and I'm anxious to get the results.

I'm going to have to get all caught up with all the other posts tomorrow.

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I am so very behind on posts here :blink:

You and me both! :o

I have to catch up. I had my appointment with Dr. S. this afternoon. Its all good. :)

I will post about it tomorrow. :)

Lisa...sorry about the rustiness. :(

I agree with kassandra...maybe a toxin binder will help. Hope it improves soon!

Kassandra...I didnt get your update. I'll pm you my email tomorrow because I definately want to read about your latest appt. :)


Rachel

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Random Question:

What does Leaky Gut FEEL like?

Oh Katy Katy Katy .. . . .a Random Question would be "What's your favorite balloon animal?" or "Did anyone use Numerology to choose their major in college?" or "Does the dirt near work taste different than that at home?" :lol:

Annnnnnnyway .. . .I also don't think Leaky Gut feels like anything. That's probably part of the problem.

Alba Therapeutics has a couple hundred million dollars riding on, from what I gather, ALL affected celiacs having leaky-gut. The company was started by the well-respected U of Maryland celiac doc, (grrrrr can't remember his name .. . Fasano?) The AT-1001 pill is supposed to, temporarily I believe, close or cover the "tight junctions", whose malfunction defines leaky-gut.

I remember when I became sure mine was healing, because constipation no longer led to literally feeling very crappy - yuck - besides partially digested food, fecal matter also gets into the bloodstream.

I associated a certain type of crappy mindstate w/ it, and it correspondingly got worse w/ each additional constipated day & left once the C ended.

And, of course, there's all the leaky-gut-induced food intolerances.


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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Kassandra...I didnt get your update. I'll pm you my email tomorrow because I definately want to read about your latest appt. :)

I sent it to you, just now. Let me know if you didn't get it. :)

Everyone,

I am going to the muscle testing lady tomorrow morning. I am just wondering...what if I test poorly for something like Mepron which is such a huge part of my treatment protocol? I guess I will just have to see how I test for things.

I will probably send out another update if anyone wants it. :) I would post it here, but I don't want to talk in too much detail about the doses of things, etc. :rolleyes:


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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I always like whatever updates anyone has......and I think email is a great idea!


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 sent it to you, just now. Let me know if you didn't get it. :)

Everyone,

I am going to the muscle testing lady tomorrow morning. I am just wondering...what if I test poorly for something like Mepron which is such a huge part of my treatment protocol? I guess I will just have to see how I test for things.

I will probably send out another update if anyone wants it. :) I would post it here, but I don't want to talk in too much detail about the doses of things, etc. :rolleyes:

I would like the updates, do u still have my email addy, if not let me know.

paula


gluten, casein and soy free

on low carb/low sugar diet

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Kassandra I got your email....thanks. :)

I was wondering about where to order the test strips for sulfur in the urine? Last week I found a link for this but then I couldnt access the page. :(

I want to have this checked because its one of the things I've been looking into. If you could pm me the info that would be great! :)


Rachel

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Carla, I don't know if I missed posts or what, but I didn't know you were having symptoms again. I hope the meds help and that you feel better soon. Have fun with Morgan at Riverdance, lucky you :)

Well, I don't know that I've talked a a lot about it here. I have a thread on LN (do you know that's a Lame Advertisement now?) about it, so I might not have talked about it here.

A couple months ago, I felt fine but had air hunger. I started on Malarone and never felt good after that. At first I thought it was just a herx from the Malarone. Then I started having GI symptoms and did another round of Humaworm thinking maybe it would help. I was still battling some fatigue through all this.

Then we went on spring break, and I did fine .... felt good. Right before that, I thought I had the flu then when we got home I felt fluish again, and it didn't let up. So, Monday I called the LLMD, and they wanted me to have a phone consultation to talk about it, so we did that Tues. With the flu symptoms and the GI stuff, I was thinking it was the bart ... but she said we should treat the Lyme, too. So, I'm back on meds.

I wasn't going to send an email .... there's just not much news. :) If you want to know the meds, email me and I'll tell you.

I am just wondering...what if I test poorly for something like Mepron which is such a huge part of my treatment protocol?

Then I would try to figure out why. That would mean it's not doing well for you right then ... is it a detox issue, or what? Obviously you need Mepron and it's helping, so I am guessing this won't be the case.

Riverdance was phenomenal!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Kassandra I got your email....thanks. :)

I was wondering about where to order the test strips for sulfur in the urine? Last week I found a link for this but then I couldnt access the page. :(

I want to have this checked because its one of the things I've been looking into. If you could pm me the info that would be great! :)

Here is the link. :)

Paula, I don't think I still have your email, can you PM it to me? Thanks!


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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April, are you doing any better with the Nattokinase? If I remember correctly you started out ok but now you aren't sure since you are having gall bladder pain? I think Sherry was the one doing fine with it.

Rachel reminded me in another post about the other things that are given to treat fibrin (Rachel, hope you don't mind me mentioning it here also)

I thought it was Nattokinase I was going to be put on, but it's Rechts Regulat. I tested really strongly for it through ART. It's a richly fermented product, which my body seems to love.

Rachel, it probably will not be the thing for you :lol:

Well, I don't know that I've talked a a lot about it here. I have a thread on LN (do you know that's a Lame Advertisement now?) about it, so I might not have talked about it here.

Right before that, I thought I had the flu then when we got home I felt fluish again, and it didn't let up. So, Monday I called the LLMD, and they wanted me to have a phone consultation to talk about it, so we did that Tues. With the flu symptoms and the GI stuff, I was thinking it was the bart ... but she said we should treat the Lyme, too. So, I'm back on meds.

Riverdance was phenomenal!

Well at least I know I am not crazy, I was going back trying to find your original post to comment on. I thought I had missed it and felt bad.

So it wasn't the flu afterall? I hope you feel better soon :)

Glad you enjoyed Riverdance, it's something I want to see in my lifetime :D

Kassandra, did you find out if it is ART she is doing or another form of muscle testing?

Sherry might have some good advice because she was dealing with this not too long ago when she first went to ART, what if all the things she was on tested poorly?? This was just one of the questions she was struggling with.

I would love to hear how it goes so you can send an email along to me too :)

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Happy Birthday Carla!!!


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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:D:D Happy Birthday Carla! :D:D

Does that make you older than me now? ;):lol:

<--- quick exit, stage right


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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Getting caught up on some of the othet posts I missed:

Im pretty sure its EDEN- But be careful they make one that is bucleheat and wheat mix and the other is pure buckwheat- of course that one is more expensive!!

But I loke it its a little weird but once I add all my stuff to it it tastes good. It would be good for ou becasue besides millet it is the onl alkalizing grain and I know you ahve had a problem with reflux.

I did not know you had had esophageal spasms. I used to haevt his . I had all these tests done and actually had 2 esophogeal dilations done to stretch my esophogeus!! Of course this was when i was telling them my throat felt like it was closing up when I ate certain foods and they never thought to test me for food allergies. Those smart doctors!!!!!!!!!

Hi Mia :wub: I've been waiting for your pm updating me on how you have been doing.

Thanks for the info about the buckwheat pasta. I found the Eden brand you mentioned and the one store I checked only carries the buckwheat/wheat mix. I need to check a few other stores, otherwise I will probably have to order it on-line.

Yeah, I think we talked about the esophageal spasms a while ago. I remember you talking about your dilations, YIKES.

I haven't had one spasm, or anything heartburn or reflux related since I have been on the charcoal, even when eating my main trigger foods, it's a miracle!

how is your edema doing? have they figured out what is causing it or how you can treat it?

do you every take diruetics?

Im going to the university to get tested for endometriosis, of whatever, ive had a cyst in the top of my cervix near uterus and pain on and off for about a year. I have my first appt this friday, ill let you guys know how it goes.

Might as well take advantage of all the health insurace I get through my school...

Ill be requesting 800$ hormone pannels. Its funny tho, it does seem like the most help I have gotten, or answers at least has been at the gyno. weird,,,I want to get my adreanals tested too, for atch, and cortisol, as well.

I take adderall, and that stimutales the adrenals big time,,, whoa

Hi Christine. My edema, lymphedema, and angioedema (and all things inflammation related) are my most pressing issues at this time. I had taken a natural type of diuretic years ago when the edema started for me but it really was only throwing something at the symptom rather than getting to the root of it all. It's also hard on the kidneys, which mine are so overly burdened as it is.

To summarize, my Dr thinks the MMR I had caused a big burden for my body, the virus embedded itself into my gut which caused gut/brain issues, as well as other toxic exposure (antibiotics over the years, heavy metals, lyme) and my immune system is not responding properly.

I hope all goes well with your upcoming testing.

Well! Wasn't that interesting? Hmmmm.....

Got all my test results back. Still trying to figure out what to make of them. Been googling various tests to find out what exactly they mean.

Got a script for monthly bloodwork. Have to figure out where to get it done now.

Hi Nyxie, thanks for the update on your appt.

Glad you survived the trip, sounds like your traveling companion wasn't much help though (and annoying to boot :rolleyes: )

How is the pain and fatigue today? I hope it is better.

These particular tests I can't offer much insight as to ranges and such, I hope someone else will know, or that you found some explanations on google.

For the bloodwork do you have Labcorp labs in your area? I think they are nation wide and they have multiple locations in the cities. I have been using them for all my blood draws, but there are many other walk in lab services available.

I'm doing okay, busy with guests for 3 days, out of town and 9 hours of travel tomorrow. This is a must due to govt regulations for renewing my visa. Just hoping to keep my meds straight and not get too worn out.

More later and hi to all.

Hope you are doing ok with keeping your meds straight and that you energy levels are hanging in there Sherry.

Post when you are able :)

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Happy Birthday Carla!!!

Hope you have an enjoyable and relaxing day. :)


Rachel

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