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Omg...i Might Be On To Something


Rachel--24

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Rachel--24 Collaborator
I would die I worked in a cafe even after I got sick and giving people all this good food I coulden't eat wasen't the hard part it was that I know they didn;t appreciate how lucky they were to be able to go somewhere and order anything and not have to worry what the exact ingredients were or what had come in contact with it during preperation!!

Exactly!! All these people have no IDEA that something as basic as *food* can just be ripped from our lives :o ...one day we can eat what we want....the next day we are living in a whole other dimension. :unsure:


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AndreaB Contributor
Here's a first, I just made a giant thing of homemade stuffing.....it is baking in the oven.

All right! You're doing good! Onwards and upwards to a nice meal. :)

Rachel--24 Collaborator
Rachel, you must have been out of your mind at the heinosity of it all today.

Yup...the entire day was HEINOUS....from the moment I got there. I seriously wanted to cry.....and this was BEFORE the swarms of people wanting food came in. I ordered sooo much product.....for all of these people to BUY...and then NONE of it is being put on the shelf. :angry: Its sitting in the back...shelves empty...for 3 DAYS NOW!! :blink:

I've never had this happen before.....especially during a holiday week. I think my new boss might suck. :unsure:

I'm not sure how she thinks....shes got my night guys in the checkstand ALL night and then yesterday I checked for HALF of my shift. Does she think this stuff is gonna *magically* find its way to the shelf?? :huh:

After tomorrow....we wont sell through this stuff....it'll go bad....all because it was NEVER on the freakin shelf for people to BUY. :angry:

It was heinous for sure....I voiced my concerns this morning....she kept me out of the checkstand today....so that I could work 4 DAYS worth of product. Its also hard to get ANYTHING done on holiday week...the customers need to ask where EVERYTHING is...none of them can just *look* for something. Its neverending..."Where is the ham??" "Ummmm....its in the MEAT dept." :huh: "Oh...meat dept?? :unsure: ...oh ok...where is that?" HEINOUS....its the best word to describe the past 3 days :rolleyes:

AndreaB Contributor
I ordered sooo much product.....for all of these people to BUY...and then NONE of it is being put on the shelf. :angry: Its sitting in the back...shelves empty...for 3 DAYS NOW!! :blink:

I've never had this happen before.....especially during a holiday week. I think my new boss might suck. :unsure:

I'm not sure how she thinks....shes got my night guys in the checkstand ALL night and then yesterday I checked for HALF of my shift. Does she think this stuff is gonna *magically* find its way to the shelf?? :huh:

UNBELIEVABLE!!!!

:o:o:blink::o:o

I'm beyond shocked!! I wonder if the night guys prefer the checkstand. :ph34r:

DingoGirl Enthusiast
It was heinous for sure....I voiced my concerns this morning....she kept me out of the checkstand today....so that I could work 4 DAYS worth of product. Its also hard to get ANYTHING done on holiday week...the customers need to ask where EVERYTHING is...none of them can just *look* for something. Its neverending..."Where is the ham??" "Ummmm....its in the MEAT dept." :huh: "Oh...meat dept?? :unsure: ...oh ok...where is that?" HEINOUS....its the best word to describe the past 3 days :rolleyes:

oh dear.....it'll all be over soon....and then there's Christmas...but just think, January 2 is right around the corner!! :) And I think your boss DOES suck..... :huh:

Making fresh cranberry sauce. What was I thinking? it comes in a CAN for Pete's sake....surely there is gluten-free cranberry sauce in a can, I didn't even look for it......

WHAT am I goign to do with this turkey breast?????? I had an elaborate plan but it is too HEINOUS (in keeping with the theme of the holiday)......I have no business doing this...... :lol::lol::lol:

OMG. I feel really bad, I am talking about food on this thread. :ph34r: I am so sorry.....but no one needs to be jealous, I suck at this :lol::lol::lol:

CarlaB Enthusiast
Carla....I don't even KNOW how you can get up there and play the flute in front of all those people without practicing. You must have lots of natural talent. ;)

Nah, just a good ear ... if I'm playing a bad note, I switch notes. :P Besides, none of the music is technically challenging. I USED to practice daily (not the church music ... technique). Once you know scales and arpeggios ... the music is easy ... I can play because I have the guts ... not because I'm good ... I think people appreciate that and most don't notice if I make a mistake. It'd be totally different if I got paid for it. :rolleyes: I almost quit playing till I got better, but thanks to Adam I didn't ... he said it was the only thing I enjoy that I haven't given up yet and wouldn't let me.

I've been preparing green beans, sweet potatoes, and pumpkin blondies with Morgan. Now it's time to get some rest so we can cook the rest of it tomorrow! I've enjoyed catching up .... Mia, sounds like you had a good appt .... Rachel, this WILL be your last sick holiday! Sorry about the crummy time at work, maybe your boss will learn a lesson here. I hated my grocery shopping today -- all the amateurs were totally in my way!!! All those people who don't know where anything is! What, do they ALWAYS eat out normally? How can they be so lost? I had to ask where the turkey bags were, I mean, WHY aren't they kept near the turkey pans? They were clear on the other side of the store! <_<

Have a happy Thanksgiving everyone!!!

Rachel--24 Collaborator

So I've been getting upset with some customers. Its when I'm in the checkstand and someone (usually an elderly person) starts telling me their health problems. It starts out with me saying "How are you today?" (unlike the heinous owners of Susans art store...our company believes in customer service. Be friendly but dont put out product for the customers to buy :rolleyes: ) Then they will tell me something like "When you get as old as I am...things just don't work the same."

So I say...."I'm already there....believe me...I can relate to a body that doesnt work right." Then they get ANGRY with me for saying this. :blink: They will tell me I dont know what I'm talking about....that I'm young and my health is fine. I say "No...actually its not...I have alot of health problems." Then I get "You're working here arent you??" Then they totally DISMISS me and anything else I have to say. :angry:

The other day it was a woman...she said all she wanted was to have her health back. I told her I felt the same way...that I also had serious health problems and just wanted to get my health back. She ROLLED her eyes at me. :angry: I told her I AM sick....that I DO know what its like to have major health problems. She said "No you dont....wait till you get to be my age....then you can tell me about it." I told her I can only eat 5 foods and I'm allergic to every chemical there is on top of alot of other problems and aches and pains. I told her I have Lyme Disease. She said "Well do you have to go for dyalisis 3 times a week?" Then she ROLLED her eyes at me AGAIN. :(

All I was trying to do was tell these people that I can RELATE to them....that I have health problems too and know what its like to struggle. Heck...I'm probably far WORSE off then half of these elderly customers. Not to mention that I'm less than HALF their age.

I was upset because its happened quite a few times. I told my friend about it. She told me to stop fighting with the elderly customers about who is "sicker".....that its not a contest...and that the customer is always right. :rolleyes:

So I went and told another friend. She said "You should be happy that you dont *look* sick."

HARUMPH :angry:

I wonder if the night guys prefer the checkstand. :ph34r:

No they dont....nobody really "prefers" the checkstand. The checkstand is a heinosity in itself.

I can pretty much tell when my guys have been in the checkstand all night by how it looks when I get there in the morning. I told my boss today that I know they're in the checkstand all night. She told me that they are NOT....that they are in the dairy dept. I didnt believe her. <_<

Sure enough...I saw one of the guys today and he came up and asked me why he's in the checkstand all night now.....whats going on?? He said he cant get anything done because they are making him check all night. I went back to my boss and talked to her AGAIN. :angry:


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AndreaB Contributor
She told me that they are NOT....that they are in the dairy dept. I didnt believe her. <_<

Sure enough...I saw one of the guys today and he came up and asked me why he's in the checkstand all night now.....whats going on?? He said he cant get anything done because they are making him check all night. I went back to my boss and talked to her AGAIN. :angry:

That's incredible! So can you go to the next level if she doesn't listen?

Sounds like you've been talking to some hard core older customers. :(

Rachel--24 Collaborator
That's incredible! So can you go to the next level if she doesn't listen?

I told Michelle. :D

The new boss doesnt know how to write a schedule. There should be a checker for every checkstand during a holiday week....there should be no ROOM for the dairy person to check...unless someone needed a break or something like that.

Michelle is coming in to look at the schedule next week...to see what shes doing wrong.

Sounds like you've been talking to some hard core older customers. :(

Apparantly. <_<

I just think that elderly people should give us younger people respect too...people can suffer ill health or hardships at ANY age.

CarlaB Enthusiast
I just think that elderly people should give us younger people respect too...people can suffer ill health or hardships at ANY age.

Yes, they should, but they won't. It's probably best just to say you can't imagine .... then leave it at that. They will never believe you! Just say to them the things that you would like people to say to you ... then at least one of you gets sympathy for your health problems!! ;)

Green12 Enthusiast
HEINOUS!!!!!!!!!!

:lol::lol: I love when you say that. That has to be the best Rachelville word by far. Well, all of them are good, but heinous, that just cracks me up every time!! Susie Q, what would we do with out you and all your humour?!?!?!

Idea for your turkey breast-- make a paste with a little olive oil, coarse salt, garlic and whatever herbs you have on hand marjoram, oregano, thyme, tarragon and then rub it all over the turkey and roast in the oven. Yum!

Mia Mia, I'm very happy to hear you were pleased with your appt today :) That is very encouraging. I'm glad you will be surrounded by your loving family tomorrow :)

Rachel, I had a thought, I should have thought of it earlier though, we could have looked for a turkey mold to cook your beef in :lol: And did you say you can eat apples? Shoot I am so tired I can't go back, but have you tried slicing them and putting them in a pan with a little water, and cooking them until they get really really tender? The sugars in the apple really come out that way and might make you feel like you are eating apple pie filling. Don't know if you can have cinnamon but if you can that is good on the apples too. Just trying to think of a way you can prepare the few foods you can eat in a different/special way.....

Hugs to Judy, you are always so sweet :)

Andrea, safe travels tomorrow :)

Carla, tell Morgan hi! And have a great day with your family :)

Everybody I am wiped, going to bed, but for everyone here tonight I just want to say have a Happy Thanksgiving and I'll be thinking of you all :)

humour?!?!?!

omg, I am replying to my own post :lol: Am I Canadian when I am tired? I think I spelled humor like dear rinne. Or maybe I don't know what I am talking about.

I will not remember this in the morning so I apologize in advance for my half asleep brain :lol:

AndreaB Contributor
I told Michelle. :D

Michelle is coming in to look at the schedule next week...to see what shes doing wrong.

I'm glad you did. :D I wasn't sure if she was next in command but I thought she was.

I'm sure someone won't be happy with all the wasted product either. :blink::ph34r:

Carla, tell Morgan hi! And have a great day with your family :)

I will not remember this in the morning so I apologize in advance for my half asleep brain :lol:

Yah Carla.....tell Morgan hi from me too.

Julie :lol::lol: That's ok, we forgive you for replying to your own post.

Rachel--24 Collaborator
I wasn't sure if she was next in command but I thought she was.

In her *mind* she is... :lol::lol:

Whatever works though. ;)

Yes, they should, but they won't. It's probably best just to say you can't imagine .... then leave it at that. They will never believe you! Just say to them the things that you would like people to say to you ... then at least one of you gets sympathy for your health problems!! ;)

Yeah...you're right. I'm not gonna bring it up again...if I was 30 or 40 years older they would probably have a real discussion with me and there would be no doubt that what I'm saying is true. Its not gonna happen that way now though....they probably think I'm a hypochondriach who doesnt know a thing about chronic pain. <_<

:lol::lol: I love when you say that. That has to be the best Rachelville word by far. Well, all of them are good, but heinous, that just cracks me up every time!! Susie Q, what would we do with out you and all your humour?!?!?!

Heinous is my favorite R-ville word too! :D

Wish it didnt apply to my life so much though. <_<

I crack up everytime Susan uses it though. :lol::lol:

Thanks for the tips about "spicing" up my foods. :)

I actually dont care that much that I cant eat a normal dinner...I'm just gonna eat like its any other day. I'm more sad about the fact that I'm still sick through 4 TG's now and the fact that life is passing me by. There are no memories or pictures or anything to look back on. 4 years are just "missing". Before that...my life was full and fun. Not so much anymore. :(

DingoGirl Enthusiast

Julie.....am utterly charmed by your sleepy post. :lol::P and THRILLED wtih the turkey idea!!! Yes, this is what I will do! You're my fourth suggestion and YOURS is the one I am taking!! :rolleyes:

This is unprecedented. I have made cranberry sauce, stuffing (um, it's really mushy with EnerG brown rice tapioca bread :huh::huh::huh: but good flavor), am making chicken broth with the chicken remains, and some weird Indian corn/pumpkin pudding.

Blah!!!!! I am sweating from all this cooking. This never happens here, all this cooking, the dogs were staring at me, transfixed and confused. :lol::lol::lol:

but you know something, I am kind of excited to report this, I have not really used too many recipes (once, I think) since going gluten-free 10 months ago.....and guess what, they are SLIGHTLY easier for me to follow! This is progress...... :rolleyes:

Rachel.....you probably still look too good for anyone to believe you're sick, esp. the elderly customers. Yup, the customer's always right, let them talk about their sickness....you just smile and say, I"m so sorry. And say HARUMPH inside yourself.

:lol::lol::lol: Rachel said HARUMPH and HEINOSITY :lol: more than once....... :lol:

back to the kitchen.....dishwasher's broken, must do all dishes by hand.......

Andrea, safe travels tomorrow! Gosh, what are you going to do without us for all these days, and we without you????? :o

:wub: wub you guys.....

new topic, no segue here....

did you guys read this, on another thread? does anyone know anything about this?

i had a long discussion with the woman over the study about genes and testing. they do not feel that dr. fine's tests are accurate since they have never been reproduced by a third party. she said that they cannot accept anyone into the study that has been diagnosed by enterolab. she said that besides DQ2 and DQ8, they feel that there is a third gene involved with celiac which would probably account for biopsy-proven celiacs with out the 2 main genes. she said they have about 8 people involved in the study that fall into that category. they don't recognize gluten intolerant genes----does anyone know how dr. fine has come to the conclusion that so many genes are gluten intolerant genes----especially since no one else in the world recognizes these? also, i only questioned the validity of fecal testing, and she knew exactly what i was referring to---she was the first to mention dr. fine.

Rachel--24 Collaborator
did you guys read this, on another thread? does anyone know anything about this?

i had a long discussion with the woman over the study about genes and testing. they do not feel that dr. fine's tests are accurate since they have never been reproduced by a third party. she said that they cannot accept anyone into the study that has been diagnosed by enterolab. she said that besides DQ2 and DQ8, they feel that there is a third gene involved with celiac which would probably account for biopsy-proven celiacs with out the 2 main genes. she said they have about 8 people involved in the study that fall into that category. they don't recognize gluten intolerant genes----does anyone know how dr. fine has come to the conclusion that so many genes are gluten intolerant genes----especially since no one else in the world recognizes these? also, i only questioned the validity of fecal testing, and she knew exactly what i was referring to---she was the first to mention dr. fine.

:o:o

Susan...what thread is this on??

This is EXACTLY what I was talking about on the "gene thread". How can we be so *certain* that Dr. Fine's test are worthy of anything??? Why do we put soooooo much weight into his tests results??? I believe its because we WANT an answer....something to turn toward and to get excited about. I'm really having my doubts about Enterolab now. <_< Most people who are diagnosed with gluten intolerance through Enterolab are *STILL* sick. They dont get "cured" because they went gluten-free. <_<

Also I think the gluten intolerant genes dont tell us *anything*.....hello....EVERYONE has them. :huh:

Dr. Fine hasnt published anything....so why should I believe his test??

I will have to find this post tomorrow....but right now its lights out.

G'nite :wub:

DingoGirl Enthusiast

OMG Rachel....I haven't even been following the gene thread because I wasn't tested through Enterolab and don't know what the heck genes I have. Okay, another topic to follow now..... :blink:

'night everyone! :)

rinne Apprentice
Making fresh cranberry sauce. What was I thinking? it comes in a CAN for Pete's sake....surely there is gluten-free cranberry sauce in a can, I didn't even look for it......

WHAT am I goign to do with this turkey breast?????? I had an elaborate plan but it is too HEINOUS (in keeping with the theme of the holiday)......I have no business doing this...... :lol:

OMG. I feel really bad, I am talking about food on this thread. :ph34r: I am so sorry.....but no one needs to be jealous, I suck at this :lol:

:lol: I love heinous too. :lol:

I've been preparing green beans, sweet potatoes, and pumpkin blondies with Morgan. Now it's time to get some rest so we can cook the rest of it tomorrow!

So great that Morgan is home, hi Morgan. :) Pumpkin blondies sound great.

Then they will tell me something like "When you get as old as I am...things just don't work the same.

Stupid old people. :ph34r::lol: Oops I am getting there myself.

Rachel, people just don't get it, best to avoid a "sick war".

I feel like part of Hoffman's doubt comes from the fact that he "feels" like I am healthy, I have another friend who is an Infectious Disease doctor, she was over for tea the other night and I know she doesn't "feel" like I am ill.

Am I Canadian when I am tired?

You may be Canadian any time you want. :)

This is EXACTLY what I was talking about on the "gene thread". How can we be so *certain* that Dr. Fine's test are worthy of anything???

This is interesting.

OMG Rachel....I haven't even been following the gene thread because I wasn't tested through Enterolab and don't know what the heck genes I have. Okay, another topic to follow now..... :blink:

Me too, <_< I've mostly been here lately. I find it frustrating to see new people, with my symptoms, just hear their suspicions of Celiac confirmed when I am thinking this just doesn't sound right. It does not make sense to me that if you are a Celiac and you quit consuming gluten that you would not get well, it seems to me that your body would be happy with you but instead whatever is going wrong is like a trigger has been turned on that can't be turned off and then it is corn and then soy and then....I think that one of the underlying problems for many people is Lyme. :( Oh and my mother knows two women who were Celiac and are fine off gluten.

Hoffman wants me to take Vitamin D3, 4000 units daily for six weeks, :( and he said some of the pain I have could be related to how low these levels are in my body. My Lyme friend today was talking about iodine and she said most people are deficient in it and that she had begun to take a certain brand with good success. Iodine can be dangerous I think. I wonder if we are all malnourished by a lifetime of consuming food grown with artificial fertilizers.

Speaking of artificial fertilizers I have a mushroom question. I found last year that I couldn't buy conventionally grown mushrooms because when I cooked them the smell of amonia was overwhelming to me, has anyone else noticed this?

Rachel, I keep thinking about what you said about getting to the point of death and then changing your diet and what you regained just through doing that. <_< My brother has eaten a conventional diet, highly processed, lots of restaurant fried food, was just diagnosed a Celiac and is obviously having to change his life drastically but he seems to be doing okay. I haven't thanked him for helping me in my research project. :lol: I am very curious to see if he gets well just through doing that, I really hope so for his sake but if he doesn't he just might be part of the Lyme Clan. :P

I was reading a thread about humor on another site I visit, a Canadian Lyme site, and the importance of endorphins and I was thinking they could really use some "funny" around there. They are mostly taking antibiotics and they are suffering. I am so grateful I to have Rachelville to come to and laugh, and many days the theme to Cheers describes the feeling perfectly. :) I can't remember and I will not go back :lol: who posted the lyrics but yes, just that, thank you.

Rachel--24 Collaborator

Happy Thanksgiving everyone!! :)

Rachel--24 Collaborator

A year and a half ago I was on a candida message board....a guy there had Lyme Disease. He sent me an email telling me he felt I could have Lyme...that I should get tested. Thats when I really tried to get myself tested....because I had already wondered about Lyme myself. I couldnt find much info about if Lyme in CA....then the rashes in the pics looked nothing like anything I'd ever had...then the infectious disease specialist...well we already know that story...he wouldnt test me. :angry: '

This morning I was on the Lyme board....saw a post from that same guy....he is still there. He wrote this:

There is a Candida site like LymeNet

-Candida Connection- I think?

You will be supprised how many folks

on this site Have Lyme and have not

figured it out yet--

Many of these folks end up on LN

sooner or later-

:(

miamia Rookie
In her *mind* she is... :lol::lol:

Whatever works though. ;)

Yeah...you're right. I'm not gonna bring it up again...if I was 30 or 40 years older they would probably have a real discussion with me and there would be no doubt that what I'm saying is true. Its not gonna happen that way now though....they probably think I'm a hypochondriach who doesnt know a thing about chronic pain. <_<

Heinous is my favorite R-ville word too! :D

Wish it didnt apply to my life so much though. <_<

I crack up everytime Susan uses it though. :lol::lol:

Thanks for the tips about "spicing" up my foods. :)

I actually dont care that much that I cant eat a normal dinner...I'm just gonna eat like its any other day. I'm more sad about the fact that I'm still sick through 4 TG's now and the fact that life is passing me by. There are no memories or pictures or anything to look back on. 4 years are just "missing". Before that...my life was full and fun. Not so much anymore. :(

Rachel-

I completly relate to this. Yesturday I had alittle break down becasue I wasen't feeling well I was talking to my mom and I rememembered 2 Thanksgivings ago my sister said oh you'll be better by thanksgiving now its 3 later and I am sicker!!! I've always been a holiday person- not for the gifts- I don't like shopping but I love a day dedicated to relaxing, eating, and being with family now it seems like every holiday is like a marker- "one more year passed and you were sick" It makes holidays really hard and really negative. I find it hard tro look at old pictures- ITs like a different person is in them- not me- but a me that lived in a past life. Its almost torterous. Ok now I am depressing myself I have to stop.

Miamia

A year and a half ago I was on a candida message board....a guy there had Lyme Disease. He sent me an email telling me he felt I could have Lyme...that I should get tested. Thats when I really tried to get myself tested....because I had already wondered about Lyme myself. I couldnt find much info about if Lyme in CA....then the rashes in the pics looked nothing like anything I'd ever had...then the infectious disease specialist...well we already know that story...he wouldnt test me. :angry: '

This morning I was on the Lyme board....saw a post from that same guy....he is still there. He wrote this:

:(

Rachel-

I was talking to my doc yesturday about the connection between the 2 - its like when you have one infection it just wears your system down and you become suseptible to every other infection- I really think my insides have become like a resort spa for all types of unfriendly critters!!!

dlp252 Apprentice
:huh: Donna....I must say, you are a very cheerful insomniac! I can't believe you are functioning on this little sleep.....I have done it and just cried all the time......

You don't have to work with me! :lol::lol: It can get bad for me too though...the doctor asked me about mood swings yesterday, and I said I was too worn out to have swings...it's mostly just down now. :lol:

Well, have to figure out what to do with this turkey breast now, adn then homemade cranberry sauce.

HEINOUS!!!!!!!!!!

:huh:

Now, the thought of all that makes ME want to cry, lol. :lol: Applegate turkey lunch meat! :lol:

miamia Rookie

.

Me too, <_< I've mostly been here lately. I find it frustrating to see new people, with my symptoms, just hear their suspicions of Celiac confirmed when I am thinking this just doesn't sound right. It does not make sense to me that if you are a Celiac and you quit consuming gluten that you would not get well, it seems to me that your body would be happy with you but instead whatever is going wrong is like a trigger has been turned on that can't be turned off and then it is corn and then soy and then....I think that one of the underlying problems for many people is Lyme. :( Oh and my mother knows two women who were Celiac and are fine off gluten.

Rinne-

I have been so bothered by this!!! I don't know if its lyme for everyone but I kow plenty of people who have celiac stop eating gluten and are fine. Then there is this huge population of people who sut it out and it starts this domino effect of health demise- For a while I felt like even thoug I was sick before cuutting out gluten was the worst thing I did!! I know I may have been damaging my intestines but I felt a whole lot better.

In the end I'm sure it was the better thing to do but it just dosen't make sense that the body dosen't react positivly to it. Instead it rebels and gives you a zillion other problems!!

Donna-

I know the mood swings for me have been mostly down lately. But still within the down there seems to be a lot of room- theres sad and then theres angry, frustrated, and just completly spent and exhausted- I think I am becoming bi polar.

I hope you enjoy your applegate farms tuurkey and cranberry preserves. I am living on th eedge today I wasen't going to but last night I was with my mother helping her sook and I decided I wanted to cook too- So I am having grilled salmon which is safe for me (well relativly) a mix of wild and basmati rice, baked sweetpotatoes and apples and spinach. The only thing I ma nervous about really is the sweet potatoes but we will see I am just gonna have my fingers crossed

Miamia

dlp252 Apprentice
omg, I am replying to my own post :lol: Am I Canadian when I am tired? I think I spelled humor like dear rinne. Or maybe I don't know what I am talking about.

I will not remember this in the morning so I apologize in advance for my half asleep brain :lol:

:lol::lol::lol::lol::lol:

Hi Cecile!!!!!

Happy Thanksgiving to all!!!

Oh, and I got a better night sleep last night...woke up many times, but at least dozed off again...there may be hope for this new supplement.

CarlaB Enthusiast
Yeah...you're right. I'm not gonna bring it up again...if I was 30 or 40 years older they would probably have a real discussion with me and there would be no doubt that what I'm saying is true. Its not gonna happen that way now though....they probably think I'm a hypochondriach who doesnt know a thing about chronic pain. <_<

Same as most of our docs. <_<:lol:

Happy Thanksgiving everyone!!!

rinne Apprentice

This article, actually two, is long but well worth reading to try and understand the Western Blot test for Lyme.

Open Original Shared Link

Dr. Charles Jones' Approach to Reading Western Blots:

A Wise, Common Sense Position

Dr. Schaller Introduction: Let Me Help You Understand Common Clinical Basics.

One of the happiest days of my recent career was when this 75 y/o veteran doctor, beloved all around the USA for his treatment of over 6,000 Lyme infected children, agreed to treat my children. His reading of Western Blots is not effected by any Big Government agencies. He is not accountable to any lab oversight government entity. And no one at the CDC, FDA or any medical board in the USA has his massive experience in treating Lyme in youth and reading Western Blots. So read below his clear and convincing reasoning on the interpretation of the Western Blot.

Before I offer Dr. Jones's material, let me put in them in context, and share a few basics. First, the Western Blot measures the antibodies your body makes to attack the Lyme infection.

Also, it is important to note that like most progressive Lyme experts, Dr. Jones assumes you have a Western Blot from IgeneX, which is an internationally famous, tick-only lab, with full lab certification. Other massive cheap national labs process hundreds of types of tests, and millions of patients. They rarely find a positive result even in epidemic counties, in people who have profound and advanced Lyme clinical symptoms.

However, if you have had a Western Blot done at a junk lab, please still glance at the result. Why? Because you may find, as I did with one relative, that one of the antibodies or "bands" was positive. In this relative, the band was a "fingerprint" band. Meaning, Lyme is the only organism that makes the human body make this antibody. The child was positive.

Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant–perhaps this is a rhino? This is the 41 band. It is from the flagella, or huge stringy rod that projects from it. Very crudely, the flagellum looks a dash like a sperm tail on the Lyme organism and is most often positive. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.

Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. Jones' point. It you see an 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme—just like a tusk on an elephant.

What Do the Number of Pluses Mean?

IGeneX gives levels of antibodies. One + means you have some antibody of that type, and +++ means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives usually goes up with treatment. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.

Also, many people have +/- findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the +/- usually becomes a clear + or even a ++--which means you now have new and clear antibodies against this part of the Lyme bug.

Currently, IGeneX does not use Dr. Jones' criteria. I have not asked them why. Perhaps because they are accountable to different laboratory regulating agencies, and in general the government is anti-progressive Lyme. They are years behind clinical medicine and following a few Ivy Tower types. Many government agencies are attacking Lyme experts like the FDA and especially state medical boards. These lawyer run groups are attacking the best Lyme doctors in the USA. Generally, after the board takes out some of the best Lyme doctors in their state, patients counter attack the state boards and get laws passed to stop this 1984 Big Brother harassment. But these doctors are gone.

Further, this scares thousands of doctors into avoiding treating Lyme aggressively or makes simple thinking doctors feel these progressive doctors must have been wrong. Some physicians are simple in the politics of power. We have seen the same state board abuse against physicians willing to take on a few desperately suffering chronic pain patients, e.g., the type with rotting joints who are inoperable and need rising doses of narcotics to work fulltime and keep from crying from pain. For example, Pennsylvania and New York are two of the leading anti-pain, anti-Lyme treatment and anti-doctor states in the USA.

Charles Ray Jones, M.D.

Madison Towers

111 Park St. Suite F

New Haven CT 06511

Tel. 203 772 1123 ⇖ Fax 203 772-0682

Addendum Regarding Lyme Serology

There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.

Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.

.....

Miamia, I thought of you when I read this and now I can't remember what page your results are on. :( I had an email this morning from my friend with Lyme and she says that she is positive I am positive for Lyme. I believe her because I know myself what is true for me and I know that I have Lyme. I know it is not my only problem but it is underneath my not getting well, in the past my body has always rebounded from illness or accidents but since the rash it has not.

I think that many people are gluten sensitive and with a highly processed diet now they are exposed to much more gluten than they would have been twenty or thirty years ago. I think this is the reason so many people are moving out of the gluten sensitive range into the gluten intolerant category.

I saw something yesterday about Bell's Palsy of the gut and it struck a chord because that is how my insides have felt at times, like they have just stopped. I had one week last winter where I felt dead, numb from below my rib cage down. Nothing moved. And my sweetie, when I described the pain I had, well one of the pains I have :(:huh::lol: said it sounded like shingles but inside me. <_< That made me think about B vitamins which reminds me I must go and take one. :)

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    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
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    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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