Omg...i Might Be On To Something

[Mtndog]

Just poppping into say hello and happy Memorial Day!

Patti- I hope you get better. You should definitely call your PC's office. They usually have a doc on call or a triage nurse you can talk to. If it gets worse- please go to the ER.

Carla- Can't believe you got to the race! So cool!

Rachel- I think I'm Racheling coffee enemas.

Gin- You are a funny girl.

OMG- Lucky Charms and tri-tip sandwiches. AHHHHHHHHHHHH!!!!!!!!!!!!! First of all, hubby loves Lucky Charms and we both fell in love with tri-tip while living in CA. It's very hard to find here. i am not a big steak fan, but that's a whole different thing! YUMMM!

Susie- What's up with Stinker? How old is she? Poor girl. And you must be worried. My BIL's border collie Cassie has seizures and it breaks my heart. If she has more than 3 in a 24 hour period they have to bring her in and i'm worried one day she's not going to come out. She's so sweet! Give the beautiful girls a pet for me. Angus is concerned.

I've had a pretty good weekend. I felt good on Friday, bad on Saturday, good yesterday and bad today. Bummed- it's beautiful here. was going to have my family over for a BBQ but just not up to it. Kurt's out riding his bike and I'm jealous.

I think I know what's making me sick. Lay's chips. There was awhile when I was convinced they bothered me but then I got this attitude like "well EVERYTHING bothers me" but I've realized, now that I have had a few good (or at least better days) that I am in Lay's denial

Must stop eating them.....shared lines and all that stuff. :angry:

[DingoGirl]

Dear Rachel,

Oops! Sorry, that is what I meant! Warm, not hot! Sorry Lisa! I did not want you to cook your colon or burn your butt! In my defense, I could have Lyme Brain.

Sincerely,

Jin

she said - burned butt and cooked colon in the same sentence. Jin is now part of the comedic relief team!

jin, yes juicing is a really good way of getting concentrated nutrition into your body, maybe I should go back to it. My problem with it really is finances, I like to juice green things and it get's really pricey, perhaps when I have my country place with a garden. I think it can also really help to do it just for a few weeks at a time, perhaps borrow a juicer. I bet there are a lot of idle juicers out there.

In fact there is one fabulous juicer hiding itself, idle for months, in the cupboard here. Thanks for reminding me - got to pull her out!

But, the bright side is -- I caught a cold!!! How many of us couldn't do that when we were sicker?

This confuses me.......I have always had so many colds and sore throats - - in the last five or so yeasr before Celiac dx I was quite sick, quite frequently. The colds would turn into strep, or even bronchitis - something I'd never had in my life. I must have had a sore throat at least every two months....and then got this very mysterious kidney infection in Dec. of '05 (I was diagnosed Jan. '06) and ended up in the ER with the most excruciating pain I"ve ever known.....thought I was dying - 103 fever for five days.....pure misery.

And so what confuses me is that since removing gluten, I have had ONE sore throat (everyone at work was quite sick) that lasted for one day, and virtually nothing else! the only discomfort or sickness has been gluten contamination. I have not been sick - in the classic way I get sick - - for almost 16 months! I guess we all react differently - - but I"m confused as to why you would suddenly start catching colds and such, when in your extreme illness and weakness - - you never really got sick.....

Rinne - - my (former) boss is with Kaiser, and for six weeks, she had a fever, a constant fever (of course came to work every day). Her doctor seemed thorough, and did every single test, including infectious diseases. So I asked my boss if she'd researched her condition - - no, not a bit, she said, and they diagnosed her illness as "Fevers of Unknown Origin," and she was totally okay with that. Can you imagine?

My best friend - - same thing - - - won't EVER take an herb, because one doctor once told her that "echinacea is for the worms" - - she has never been even slightly proactive, never researched a single thing for herself, children, or friends......and she has the beginning signs of MS - - - she won't even let me TELL her if I've found something in my research (talk about DENIAL) - - - we have had very heated arguments over this - - - her son is wildly depressed adn can't eat - - WHAT TEENAGED BOY CAN"T EAT?????????????????? - - and she refuses to take any active rold in finding out what is wrong with him - - - (BTW he is 5' 11" and weighs 125 pounds....)

holy Loooooooooooooord - - - -I get furious when I think of these things, and how people blindly and passively accept what their doctors tell them - - - -

[CarlaB]

Susan, I think it's different for me and for you. My immune system was so burdened that it didn't even know I was exposed to an illness, so it didn't fight it at all. At my sickest, I never got "sick". Celiac Disease is an autoimmune illness though ... so your immune system would be hypersensitive.

I had many years before that where I caught everything that went around, just not the past few.

Rachel is probably better able to explain *why* than I can ... I've never really researched why, it's just that I've observed on the Lyme board that most people there talk about never getting sick. Sometimes when they do for the first time they actually get excited!

ROFL, My youngest just ran through the house singing, in a singing voice, "I've got to go number 2, Oh, Oh, Oh, Oh!" Can you imgaine doing that as an adult?

I think it might be the high dose amoxy contributing to my feeling so bad still ... for those coffee enemas, do you use regular strength coffee? I wonder if that would help ... I know saunas sometimes do. Right now I'm too nauseous for a sauna though.

[rinne]

Dear Rachel,

Oops! Sorry, that is what I meant! Warm, not hot! Sorry Lisa! I did not want you to cook your colon or burn your butt! In my defense, I could have Lyme Brain.

Sincerely,

Jin

I think I know what's making me sick. Lay's chips. There was awhile when I was convinced they bothered me but then I got this attitude like "well EVERYTHING bothers me" but I've realized, now that I have had a few good (or at least better days) that I am in Lay's denial

Must stop eating them.....shared lines and all that stuff. :angry:

Been there, done....

.....

Rinne - - my (former) boss is with Kaiser, and for six weeks, she had a fever, a constant fever (of course came to work every day). Her doctor seemed thorough, and did every single test, including infectious diseases. So I asked my boss if she'd researched her condition - - no, not a bit, she said, and they diagnosed her illness as "Fevers of Unknown Origin," and she was totally okay with that. Can you imagine?

......

Nope.

I can imagine something more dreadful than fever the next time though.

I had a friend, more of an acquaintance, turn yellow twice in two years and each time they ran their tests on him and found nothing and each year he went back to a life of a drink or two after work and a conventional diet. The third year he got sick they found pancreatic cancer and treated him for it but it wasn't pancreatic cancer after all. He died.

Last winter when I was at my most ill I made my sweetie promise me that we would go winter camping rather than the hospital. The idea being that I could go to sleep and not wake up, I've heard freezing to death is not a bad way to go.

That is how determined I am that they will NEVER get to mess with me again.

I suffered for three months after the CT scan even though I didn't drink the iodine and I am convinced they burned me. I felt so much worse after it and I kept telling myself that it couldn't be related and then after a month or so my sister told me she had heard of one young woman who died from a CT scan, she was already very ill with cancer and very thin and they over-radiated her. Apparently there is a problem with them under-radiating large men and over-radiating small women.

I am not saying that all doctors are bad or that I would never have any hospital procedures done but I would make sure that I was more informed than I was for that one.

Carla, sorry you are feeling so nauseous and I do remember you laying on the couch in between your adventures.

[Murph]

...there early, you leave with 500,000 other people, etc.

You have to see the 500 in person to believe it ... the stadium SEATS a half-million people!!!

The stadium seats 257,325, according to the Indy paper, w/ another 50-100,000 in the infield, tho probably not so many in the infield while it rains.

[CarlaB]

The stadium seats 257,325, according to the Indy paper, w/ another 50-100,000 in the infield, tho probably not so many in the infield while it rains.

I stand corrected. In the old days, before all the changes to the track, the infield was more like a Woodstock event ... no law type thing! Back then the infield held a lot more. Someone told me yesterday it seated 500,000 ... next time I'll check my source.

It was much easier to get out this year than last time I went.

[CarlaB]

Murph, this is from USA Today and explains why a long time Indiana resident, though I no longer live there, wouldn't know how many it seated. Until yesterday, I thought the attendance was 500,000, then a "know-it-all" improperly corrected me and said it "seated" that many. Ha! Wish I had known this yesterday!

Indiana National Bank asked Tony Hulman to share Indianapolis 500 attendance figures when he borrowed an estimated $700,000 to purchase Indianapolis Motor Speedway in 1945.The bank never got the figures. Hulman paid off the loan.

Although Hulman died in 1977, his secret has lived on. No one connected with the Speedway has confirmed the size of any race-day crowd, and the limited number of people who know show no indication of breaking Hulman's unwritten rule.

Last fall, The Star decided to solve the mystery.

A six-month inspection of each grandstand resulted in a count of 257,325 permanent seats, which includes the five types of suites scattered around the Speedway. It is believed to be the only formal count of the seats in the facility's modern era.

Estimates had been left to journalists, many of whom have admitted to being influenced by the vastness of the Speedway and the enthusiasm surrounding the 500. Some have guessed as many as 500,000 fans on race day.

[AndreaB]

But, the bright side is -- I caught a cold!!! How many of us couldn't do that when we were sicker?

If I remember Rachel's posts on this I think it means your immune system is slowing down. I think she relates hers to being very active that nothing can get by.

I also take it to mean you're getting better.

Today I bought some bubble bath which I will add just a little to my epsom salt bath tomorrow after my massage! Then I will put on my jammies and maybe paint my toes green. Bought two shades of green polish...one sort of lime green and the other more of a seafoam.

Sounds nice and relaxing. Green polish....

Must stop eating them.....shared lines and all that stuff. :angry:

Sounds like you realize the problem. Don't know if the desire for it has lessened though.

And so what confuses me is that since removing gluten, I have had ONE sore throat (everyone at work was quite sick) that lasted for one day, and virtually nothing else! the only discomfort or sickness has been gluten contamination. I have not been sick - in the classic way I get sick - - for almost 16 months! I guess we all react differently - - but I"m confused as to why you would suddenly start catching colds and such, when in your extreme illness and weakness - - you never really got sick.....

I think I've briefly covered this above, but Rachel needs to post all her scientificness on it.

I still think it wouldn't hurt for you to get lyme testing done after you get another job and have the funds lined up for it.

[dlp252]

I still think it wouldn't hurt for you to get lyme testing done after you get another job and have the funds lined up for it.

Yes, and you can see the LLMD that Rachel and I go to...and don't feel bad if he shakes his head with you. With Rachel he had to put his head down on the desk I think...with me it was just hard head shaking and the head got halfway between where it was and the desk...bet you'd just get the head shake!

He likes my sense of humor...bet he'd LOVE you!!!

[AndreaB]

Yes, and you can see the LLMD that Rachel and I go to...and don't feel bad if he shakes his head with you. With Rachel he had to put his head down on the desk I think...with me it was just hard head shaking and the head got halfway between where it was and the desk...bet you'd just get the head shake!

He likes my sense of humor...bet he'd LOVE you!!!

I can totally see that. Ok Susan, we've got you a good doctor.........

[dlp252]

Oh, and Susan said something that stuck with me on Saturday at BioSET. We were talking about the lyme not showing up in BioSET again and she said something to the affect, your body isn't producing antibodies to it, that's why we can't find it...your immune system has to be healthy enough to produce antibodies!

I can't explain the cold thing, but I know that I haven't had a true cold in a long time. My good friend gets them all the time, but I don't seem to catch them. I thought at first that she wasn't getting colds, but maybe was going through what I had for those 3 years with the sinus infections, but she said they were colds.

[AndreaB]

Nikki was so kind to give me a link with DH pictures. One of them definately looks like what my brother has. I've already called him and told him it's gluten free for life, as long as he can live without a piece of paper telling him he can't eat gluten then to go gluten free and never look back.

I've also got to get my mom to understand the seriousness of cc. My brother is more sensitive than we are. She's pretty good though. We haven't gotten sick since the time she used white flour to coat the pot roast. She keeps an immaculate house (so did her mother......I lost it somewhere ).

[Rachel--24]

But, the bright side is -- I caught a cold!!! How many of us couldn't do that when we were sicker?

I never caught colds when I was healthy either.

I was always the least likely to get sick....I guess thats still true as far as colds and such....not so much for poisonings though.

I guess I was the most likely to become toxic...I just didnt know it.

[Rachel--24]

Now that I FINELY have a grandbaby I also go by Grandpa Grump, lol........

So cute.

Well, I went out for a little shopping today...I am now all prepared for my day of luxury tomorrow!

WOO-HOO

Donna, you've inspired me...tonight I will bathe in epsom salts.

I'm not consistent but I wanted to do about 2 a week.

Oh Susie...I looked at candles today too. Decided against it though because the last time I burned one I had some sort of reaction. I wanted to light candles in the bathroom whilst I had my bubble/epsom salt bath. I have a couple left around here somewhere that I may try, but didn't want to buy new ones if I react to it.

I miss candles.

Maybe some candles are ok...like unscented and chemical free??

Just poppping into say hello and happy Memorial Day!

Hi Bev....happy Memorial Day to you too!!

I actually entered this crazy world on Memorial Day....lots of years ago.

Rachel- I think I'm Racheling coffee enemas.

No Racheling the coffee enemas! Be careful and dont overdue it.

Are you finding it to be helpful?? Well...I know it cleans you out and all ....but do you feel any better??

and we both fell in love with tri-tip while living in CA. It's very hard to find here. i am not a big steak fan, but that's a whole different thing! YUMMM!

I thought tri-tip was everywhere??

I thought it was kinda strange that Rinne didnt know what tri-tip was ....chalked it up to her being way more sophisticated than me.

When I think of tri-tip I think of the CA State Fair...they have AWESOME tri-tip sandwiches there.

Also the grocery store by my house sells some really good tri-tip...its already cooked...just ready to be eaten. They have it in the deli with all the ready to eat roasted chickens. YUMMY!

How do some places NOT have tri-tip??!!

[Rachel--24]

I think I know what's making me sick. Lay's chips. There was awhile when I was convinced they bothered me but then I got this attitude like "well EVERYTHING bothers me" but I've realized, now that I have had a few good (or at least better days) that I am in Lay's denial

Yeah...the potato chips are not a good choice for alot of reasons.

I saw a list of the top 5 WORST foods to eat....potato chips was on that list. Donuts were #1 but when I get better...I wont let that deter me.

I'm for sure gonna be having me some donuts...all different kinds...definately a jelly filled and one with sprinkles and a glazed cinnamon twist and a maple bar and a chocolate bar...OMG....somebody stop me!!

In fact there is one fabulous juicer hiding itself, idle for months, in the cupboard here. Thanks for reminding me - got to pull her out!

I have a juicer too...I just dont have enough foods (which I can eat) that I can actually juice right now.

So I asked my boss if she'd researched her condition - - no, not a bit, she said, and they diagnosed her illness as "Fevers of Unknown Origin," and she was totally okay with that. Can you imagine?

Honestly....I CANT imagine.

I know there are a gazzilion people who just "accept" their illness and do nothing to try to understand it or to change it. It totally boggles my mind...its beyond my comprehension I think.

I just dont think I'm "wired" that way....my brain is always wanting to seek answers....my entire being wants to be well again...there is absolutely no way I could be OK with any kind of "unknown origin" diagnosis.

ROFL, My youngest just ran through the house singing, in a singing voice, "I've got to go number 2, Oh, Oh, Oh, Oh!" Can you imgaine doing that as an adult?

I'm sure I've run through the house singing crazy stuff even as an adult....I have no shame.

I think it might be the high dose amoxy contributing to my feeling so bad still ... for those coffee enemas, do you use regular strength coffee?

For the coffee enemas you would need to use oragnic caffienated coffee...I had read that light roast is preferable...but not sure if it really matters.

3. The coffee must be regular, non-instant, non-decaffeinated coffee. It must be prepared in enamelware, Corning Ware

[CarlaB]

I thought tri-tip was everywhere??

I thought it was kinda strange that Rinne didnt know what tri-tip was ....chalked it up to her being way more sophisticated than me.

Nope. We don't have it, but you guys had already told Rinne what it was so I didn't have to ask. It CAN'T be as good as Cincinnati chili no matter how good it is!

Rachel, do you think the coffee can be made in a french press? I don't have a drip coffee maker. So, the coffee would be weaker than you make it to drink?

[Rachel--24]

Oh, and Susan said something that stuck with me on Saturday at BioSET. We were talking about the lyme not showing up in BioSET again and she said something to the affect, your body isn't producing antibodies to it, that's why we can't find it...your immune system has to be healthy enough to produce antibodies!

Donna...your body IS producing antibodies...thats why you tested positive on your Western Blot. So next time you can tell Susan that you ARE producing antibodies.

What Denise said makes alot more sense. BioSET isnt looking for immune system attacks (antibodies)....its looking for sensitivities.

Its totally different from ART. Its totally different from antibody testing.

Your immune system can be fighting something and yet its not actually sensitive to what its fighting...in an allergic type way.

My body is reactive to EVERYTHING...every toxin that gets stirred up, the metals, the Lyme, candida, food, chemicals, mold...the whole she-bang. Your immune system might not have become sensitized to the lyme...but this has nothing to do with antibody production.

Your immune system could be producing plenty of antibodies and putting up a good fight...its just not "reacting" to Lyme in an "allergic" way...which is what BioSET identifies and treats. They de-sensitize you to the stuff that your reactive to. You're obviously not at the point that you react to the Lyme in that way...which is good.

If you were sensitive to it...it would just cause more stress on your immune system.

This is what I think Denise was explaining and as far as I know BioSET cant identify antibodies...whether your immune system is producing them or not. Its a totally different type of testing...its more of an allergy test. '

If you had showed up as "sensitive" to all the Lyme panel...then it would have been a good clue that the Lyme was there....cuz why else would you be sensitive to it...unless it was there.

Thats what Anna had explained to me...she did feel I had Lyme because I definately was reactive to all these Lyme antigens....but she did say it didnt mean that Lyme was my main issue...or that the Lyme was an active infection.

She said it could be inactive but its presence still caused my "freaked out" immune sytem to become sensitized to it.

Hope this makes sense.

[Rachel--24]

Rachel, do you think the coffee can be made in a french press? I don't have a drip coffee maker. So, the coffee would be weaker than you make it to drink?

OMG...you are sooooo asking the wrong person.

I never made coffee (to drink) in my life. French Press??

I never drank coffee...except right before I got sick I broke down and tried Starbucks Caramel Frappacino (couldnt resist the whip cream, caramel and sprinkles ). I fell in LOVE.

But really...I'm very clueless about coffee ....hate it when customers ask me about coffee....how to make it etc. I tell them I dont know a thing about coffee....I never drank it.

I think the customers feel I should know about every product on the shelf...how to make it, what it tastes like, which brand is best, which flavor is best..etc.

WTH?? Even if I could eat whatever I wanted...would it really be possible to eat everything in the entire grocery store??

[rinne]

I thought tri-tip was everywhere??

I thought it was kinda strange that Rinne didnt know what tri-tip was ....chalked it up to her being way more sophisticated than me.

Nope, just Canadian.

[Rachel--24]

If I remember Rachel's posts on this I think it means your immune system is slowing down. I think she relates hers to being very active that nothing can get by.

Andrea...yup...thats the "theory".

I dont think there is any "scientificness" behind it...and not every person with Lyme experiences this. Some people catch everything that comes their way...some people dont.

It just depends on the persons immune system. Even without Lyme some people never get sick and others catch everything.

A person that catches things has a weaker immune system...or its busy with other stuff. Or its just not in a really heightened state.

A person that doesnt catch things could have an overactive immune system which is ready to attack every little thing. I would say my immune system is definately in overdrive.

So some people have speculated that when a person with Lyme isnt getting "sick"...even though they are SICK...its because the immune system is on "heightened alert". Because Lyme hides...comes out...changes form...etc...the immune system is really challenged and is just constantly in a heightened state....so nothing gets by.

On the other hand some peoples immune systems are really burdened and not even putting up a strong fight against the Lyme...let alone other "unwanted" guests.

I think people who never got sick while they had Lyme feel like once they are rid of Lyme and start catching colds...its because their immune system is no longer in that "heightened state" that it was in when it was stressed by the Lyme.

[Mtndog]

Words of encouragement: Just got off the phone with my SIL's older sister. She had Lyme from 2001-2004. Saw an LLMD in NYC and was tested through Igenix. You know the routine.

She told me what she felt like before she was diagnosed (VERY bad case of neuro Lyme- thought she was having a nervous breakdown, brian tumor etc Tons of food intolerances.)

She is now clear and pregnant with her first baby and SHE HAD HER FIRST PIZZA last week!!!!!!!!!!! See THERE is a light at the end of the tunnel!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[AndreaB]

She is now clear and pregnant with her first baby and SHE HAD HER FIRST PIZZA last week!!!!!!!!!!! See THERE is a light at the end of the tunnel!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sounds very promising Bev.

[Judyin Philly]

Dear Judy,

Hugs to you too! Severe weather sure is something we have in common! We get it all of the time! Evansville is right in Tornado Alley! I am used to it, though. The new people in town are so obvious. They freak when the weather gets bad.

Sincerely,

Jin

jin...thanks kido.

i was looking on line for you for the toaster bags on QVC and another site...but they were'nt there. I know your finances are limited so when i got the toast bags i also got the sheet you put on a cookie sheet or pizza pan and you'll always be protected from gluten.

you can wash up to 100 times.

If Patti sees this maybe she can find the link again.

mine was old but didn't come up in a new search either.

they saved me while traveling b/c you just put on any counter etc and your safe.

the toaster bags you put bread etc in or do a grilled cheese..( I can't b/casue of lactose and casein. NOt sure of your issues ..........

anyway.........have you been through a tornada?

We had one that was 15 miles away and the debris from it came clear over to us..like pictures etc...the Easter Tornado in Zenia Ohio.

I'm not scared fro myself in stores.......just don't wnat my computer to get zapped.

i've never done the fast reply so have no idea where this will show up

i am 3 pages behind.

wish i could answer all of you.

will in time.

let's see where this goes...hopefully at the end of the thread???

judy

oh good it's on the end of thread

bev see you

read you have not had a good weekend health wise and hubby went out on the bike.

we'll get better i know

so far the SIBO meds are agreeing with me BUT...........BOTH ANKLES ARE SO SWOLLEN.

EVEN THE SMALL 'R' ONE...

TIME WILL TELL

THE PT FOR MLD IS TO CALL ME TOMORROW AS HAVE A NEW REFURAL JUST IN TIME I GUESS.

HOPE YOUR OK.

HAVE SO MUCH TO CATCH UP ON.

WAS HOPING PATTI HAD POSTED ABOUT TODAY...

I SURE HOPE SHE'S BETTER.

HUGS

TO ALL i GET TO EVERYONE SOMEDAY.

NOW HAVE TO GO AND READ.

JUDY

[Judyin Philly]

She is now clear and pregnant with her first baby and SHE HAD HER FIRST PIZZA last week!!!!!!!!!!! See THERE is a light at the end of the tunnel!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

THIS IS SO INCOURAGING...THANKS FOR THE POST BEV.

SO PATTI HASN'T BEEN ON TODAY.

GOD HOPE SHE'S OK

CALRA...YOU SURE PAID BIG TIME FOR YOU NYC AND RACE DAYS...POOR LADY

SUSAN...POOR STINKER...IS SHE BETTER TODAY

ANDREA..GLAD THE SITE HELPED WITH YOUR BROTHERS ISSUE.

RACHEL..LORD..READ ABOUT THE LOST CELL PHONE..THE OATS...WILL IT EVER END ...SURE ONE DAY...ONE DAY...IF WE LIFE LONG ENOUGH RIGHT.

HAS ANYONE HEARD FROM PATTI

PRAYERS FOR HER APT TOMORROW.

HUGS

J

[Judyin Philly]

RINNE. HOW ARE THOSE BARS COMING ALONG.

I SURE COULD USE ON RIGHT ABOUT NOW.