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Rachel--24

Omg...i Might Be On To Something

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Rachel, I just got off the phone with Becky ( I think it was about 2 hours) She started feeling sick about 10 years ago(96). Went to about 25 expert doctors who told her it was not Lyme. It affected everything- neurological, sinusis, bowels,etc. She is dealing with arthritis now.

She did a spectra cell analysis, went to various places for testing, went through all kinds of antibotic treatments for candita(which she said she wouldn't ever do again), does the vit. c. cleanse, compounds her vitamins, works on her osteoporis issues-absolutely no hormones-says fosomax causes or can cause jawbone decay(worse than TmJ) , She basically believes if testing hasn't been done on a drug for 4 years-do not take(she is not an advocate of drugs anyway);

She has to stay off soy, milk, ice cream,eggs, flour and sugar.

She did say Igenix is good.

The Dr. that she said is the best is Joseph P. Burrascano - he has a site and to go to guidelines for lyme disease there. She said if you go to a dr. who does not know him to run. She said he is the leading a

uthority and has had it as well as half his family.

Susan Fortenberry wrote a book she read and after so long of not being diagnosed, she began to quit saying ---this isn't me to ---this is me. Like others the doctors she was going to were pushing her out the door and saying she didn't have it. But, everything in the book was coming true for her and then she found Dr. Burrascano.

We were trying to figure out if lyme is transfered by donating blood. Don't know. But she did say it is sexually transmitted. She had a band of 5 0r 6 and her husband has a 2.

She even had the blood cleaning treatment (iv) - she now does the vitamins and minerals and cleanse as well as the compounding/has the reverse ossmosis system and exercises regularly. She also drinks aloe, which I don't know about.

She said what she liked about the site is that is tells what the people went thru(like us celiacs here) :)

I hope this will help. I plan to check out this info myself. Take care, LindaLee

Andrea, sorry to hear about your dad, that has got to be tough to go through.

I love cilantro, I guess I am in the minority here :lol: . I make a lime cilantro rice that is so yummy, one of my favorite things to eat. And it tastes great with chicken too.

Hi Juliem,

Would love the recipe. :)


Lee

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Me too Julie, I love cilantro and often eat it with rice but would love to try your recipe.

Thanks for the Joseph P. Burrascano tip, I'm off to check out his web site.


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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Me too Julie, I love cilantro and often eat it with rice but would love to try your recipe.

Hi rinne and Lee, it's very simple.

I have tried many recipes that I have found on the internet that start with uncooked rice and you add lime juice to the cooking water (most of them use white rice btw), but I found that it tastes just as good if you take a batch already cooked rice ( I use brown rice cooked in a rice cooker) and then I just squeeze the juice of about 1/2 lime (more or less according to taste) and then I coarsely chop a handful of cilantro (again put in the amount according to personal taste) sprinkle in some sea salt and then fluff it with a fork.

With chicken a lot of times I will rub a little olive oil and sprinkle some sea salt on both sides of bonelss chicken breasts, and then put them in a pan, sprinkle some chopped cilantro over the top and then bake as usual.

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Hi rinne and Lee, it's very simple.

I have tried many recipes that I have found on the internet that start with uncooked rice and you add lime juice to the cooking water (most of them use white rice btw), but I found that it tastes just as good if you take a batch already cooked rice ( I use brown rice cooked in a rice cooker) and then I just squeeze the juice of about 1/2 lime (more or less according to taste) and then I coarsely chop a handful of cilantro (again put in the amount according to personal taste) sprinkle in some sea salt and then fluff it with a fork.

With chicken a lot of times I will rub a little olive oil and sprinkle some sea salt on both sides of bonelss chicken breasts, and then put them in a pan, sprinkle some chopped cilantro over the top and then bake as usual.

thanks,sounds yummy! :D


Lee

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Lee,

Thanks for getting ahold of your friend...lots of good info. I'm gonna check out the Dr.'s site too. :)

By the way...Julie you're not in the minority....I love cilantro too. ;)


Rachel

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Sounds delicious and I just bought some cilantro, thanks Julie.


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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The recipes sound wonderful. I cant have rice for some reason but I'll definately try out the chicken. I'll pretty much put cilantro on anything....today I cooked it with my hamburger patties for lunch. :)


Rachel

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Rachel,

At least you like cilantro. That's good that you can use it in with your meats. I'm sure it gives them more flavor. I'd eat it if I had to but never liked the taste....too strong for me.


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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HI everyone! It's a voice from your past!! I miss you guys so much. Can't keep up, just read a couple of pages and check in occasionally but do not post....I can't let this thread take as much time as it did before, that's for sure!!

But, from what I have gathered, Rachel is being tested for Lyme? wow! I also have been following another post where Tailz was banned....interesting stuff.

I dont' have time to catch up, could someone write a short re-cap for me? :P How is everyone doing?

I am supposed to head to the Celiac conference at Stanford this weekend, we will see. If I can just get myself to San Jose tomorrow, I can wake up Saturday morning adn see how I feel....kind of dragging bottom a little bit lately. But, the dingos have had their baths so will smell better for our friends. :)

I ate a whole bag of Nuggets in two days :lol: hadn't had any for about a month.....NOT a good day today. Maybe that's why I wandered in to this thead now? I NEED HELP....I can't moderate my nuggett intake, but I CAN moderate the wine (have had a glass two or three different times, and not a problem or issue at all for me....quite a relief!).

I will check back in later. Hope you are all well, friends, I have missed all the information I've learned here.


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Hi Susan!!!

So glad to see you...I read your post on the other thread as well. I've missed you on the board....hope you're doing good aside from the overindulgence of nuggets! Everytime I'm stocking those at work I think of you. :lol:

One day a bag was ripped open (not by me :P ) and I could SMELL them and I WANTED one....sooo bad. I had one in my hand but I thought of you and said "Man, if these things can mess up Susan....what on earth would happen to me???." :blink:

It worked...I put the nugget down. :D

Yeah...I got tested for Lyme Disease. I got sent to a new Dr. cuz my old ones suspected mercury toxicity and wanted me to see someone more knowledgeable. The new Doc was thinking possibly Lymes so ordered that test first. I dont *want* to have it but at least I'd have an answer and can then start treatment and hopefully start feeling better. We'll see what happens. I have some of the big symptoms of Lyme but never had a rash (that I know of). Heck...I dont even know what a tic looks like...cept for the pics I've seen online. I never had to pluck one out of me....who knows though??? Its definately possible. I was big on camping and OMG last time I went I was surrounded by deer. I thought it was the coolest thing ever...I was feeding them bread...I have pics of me surrounded by all these deer. Maybe it was the dumbest thing ever?? :huh:

I got sick shortly after but had some bad dental work done the same week I went camping...its gotta be one of these things. I couldve been bit in Tahoe back in 2000. After that trip I had suffered a high fever and flu-like symptoms but then was fine for 2 years till after the camping trip. Maybe I got bit again???

Wonder if that can happen?? :unsure:

Maybe if I have Lyme I'll put up the picture of me feeding all these deer...a warning of what NOT to do while camping. Probably most people would be smart enough to know that already though.

Me....not so smart. :ph34r:

I hope you can make it to the conference...I wanna hear all about it. Maybe next year I'll be doing better and I can go myself. :)


Rachel

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The Dr. that she said is the best is Joseph P. Burrascano - he has a site and to go to guidelines for lyme disease there. She said if you go to a dr. who does not know him to run. She said he is the leading a

uthority and has had it as well as half his family.

DR B is closing his practice to do research and to educate other doctors about Lyme and its coinfections!

We were trying to figure out if lyme is transfered by donating blood. Don't know.

I would say yes. Go to the Red Cross site. Lyme is listed as something you can't have if you donate blood.

Maybe I got bit again???

Wonder if that can happen?? :unsure:

I've been bitten hundreds of times as a child. That was 20 yrs before anyone knew ticks carried diseases. You can get at least 13 diseases from one tick bite. Nice, huh? I have/had at least two....lyme and babesia. I hope you will get checked for babesia too, rachel.


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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DR B is closing his practice to do research and to educate other doctors about Lyme and its coinfections!

I would say yes. Go to the Red Cross site. Lyme is listed as something you can't have if you donate blood.

I've been bitten hundreds of times as a child. That was 20 yrs before anyone knew ticks carried diseases. You can get at least 13 diseases from one tick bite. Nice, huh? I have/had at least two....lyme and babesia. I hope you will get checked for babesia too, rachel.

Lymetoo, If I go to give blood and don't know I have Lyme what happens? Do they tell me I have it? I've heard of people going to give blood and them telling them they have something. :rolleyes:


Lee

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Lymetoo, If I go to give blood and don't know I have Lyme what happens? Do they tell me I have it? I've heard of people going to give blood and them telling them they have something. :rolleyes:

NOPE! Lyme is difficult to "capture" in the blood. The bacterial "spirochetes" hang out in the tissues. They are corkscrew shaped and can travel best in tissue. That's why the lyme tests are so rotten and miss MANY cases.

Scary, huh?


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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Lee,

Thanks for getting ahold of your friend...lots of good info. I'm gonna check out the Dr.'s site too. :)

By the way...Julie you're not in the minority....I love cilantro too. ;)

Rachel, You look just like a dear friend of mine in this photo. She is a caterer in Conneticut. Going to see her soon and we are going to meet first in Cape May.

Haven't been on the dr's site yet-hope it is good and you get to the bottom to all of this. :)


Lee

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Haven't been on the dr's site yet-hope it is good and you get to the bottom to all of this. :)

have you been to lymenet??? "flash.Lame Advertisement" ... no www in front of it just the http

Look for "flash discussion"


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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NOPE! Lyme is difficult to "capture" in the blood. The bacterial "spirochetes" hang out in the tissues. They are corkscrew shaped and can travel best in tissue. That's why the lyme tests are so rotten and miss MANY cases.

Scary, huh?

Yes :ph34r:


Lee

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I dont know why but I dont feel scared anymore. Who knows...it could change tomorrow and I could be in tears and all stressed out...but I really think I'm ok with all of this now.

Maybe its because I've been in the dark all this time...not knowing what I'm fighting...but fighting anyway. It might just be a relief for me if my test is positive...is that totally crazy?? :unsure:


Rachel

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It might just be a relief for me if my test is positive...is that totally crazy?? :unsure:

No, it's not crazy. It will be a relief to be able to start treatment and start mending. Whether it be lyme or mercury. You will have a treatment protocol and start on the road to better health again. :)


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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Guest Robbin
Maybe its because I've been in the dark all this time...not knowing what I'm fighting...but fighting anyway. It might just be a relief for me if my test is positive...is that totally crazy?? :unsure:

We could all be totally crazy, and that would be yet another thing we have to deal with, lol :P

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Yesterday I learned that my two friends in Colorado with Lyme were not diagnosed through tests but through a lab technician actually looking at the slide and seeing the spirochetes in the blood. I also found a site with how to see the spirochetes with a microscope, apparently it is possible although I suppose it depends on whether they are active. It is interesting to note that my friends were ill and yet the tests that were sent away and done through some computerized process showed no Lyme.

What I am reading is that there are over 200 infections possible with Lyme and that the importance is having a Lyme Literate doctor who knows how to test and read the results.

Today I had a cyst removed from my breast and when I found out that the surgeon was having it biopsied and she said the lab technicians were "detectives" I talked to her about the Lyme, that I was very ill, that I had lived where there was diagnosed Lyme and about the lab tech seeing the spirochetes in the blood. I asked her to talk to them. It is hard to say whether she will pass it on but I am thinking I may call the lab this morning and email them the Lyme Photos.

It might just be a relief for me if my test is positive...is that totally crazy??

No, I feel the same way, it would explain so much. I hope you don't have it Rachel but at least it will be good to know.

Hello Dingo Girl. :)


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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We could all be totally crazy, and that would be yet another thing we have to deal with, lol :P

:lol::lol:

Robbin...thanks for the early morning giggle....my friends would say I've always been crazy so nothing new there. :P


Rachel

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I dont know why but I dont feel scared anymore. Who knows...it could change tomorrow and I could be in tears and all stressed out...but I really think I'm ok with all of this now.

Maybe its because I've been in the dark all this time...not knowing what I'm fighting...but fighting anyway. It might just be a relief for me if my test is positive...is that totally crazy?? :unsure:

I had Lyme for at least 42 yrs before being diagnosed, so I was RELIEVED when I got my diagnosis! At least it could be TREATED, whereas my "fibromyalgia" couldn't. With FM they just treat the symptoms, not the cause....in my case LYME.

I also found a site with how to see the spirochetes with a microscope, apparently it is possible although I suppose it depends on whether they are active. .....................

What I am reading is that there are over 200 infections possible with Lyme and that the importance is having a Lyme Literate doctor who knows how to test and read the results.

The microscope would have to be EXTREMELY powerful to see them....and they would have to be in the blood....a place they prefer not to be.

YES>>> Find a Lyme Literate MD....LLMD!!


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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Thanks for the update, Rachel. I do hope you find relief...you too, Rinne! Lyme is really scary, had a friend who had it in Carmel adn she got SO sick, but they did diagnose it almost immediately and she was cured with no lingering symptoms.

But....42 years is such a long time to have an undiagnosed condition. That is awful. :(

Just a drive-by.....see you all later!


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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