Omg...i Might Be On To Something

[AndreaB]

I would love to get down to see him. Just don't know that he wants us down there, especially since he hasn't told us how sick he is. I told both him and Joyce to let me know if I needed to come down, neither has said anything. Dad is usually up here this time of year to visit.

[rinne]

By the way, I hope I am not pushing this eos thing .... heck, I don't even know if I have it. But its worth a shot.

back to work. sick this morning again...

thinking of you all!

Push away Happy Girl, you might just have joined the pushy women club. I'm sorry you're feeling sick, I hope it doesn't last too long. I'm already having sympathy nausea pains just reading about what you will have to do to get tested.

OMG LYME GREEN LAUGHING LUNATIC HAT LADIES.......

Just a drive-by but that was TOO funny!

No, Laughing Lyme Ladies Lunching becoming the Lyme Green Laughing Lunatic Hat Ladies is too funny. I am seriously going to work on this, I know there are other Lyme women in my city and I will just have to find them. There could be variations on the shade of green but some lime would be a must I think. And yes Carla, totally like the Red Hat Ladies. Blue would be nice for Celiacs, I agree that the color of wheat tends to wash out most people and besides it is just too boring.

"My brother said it was a hat,

And so I put it on

Til Daddy asked, "Where the heck's

The toiler plunger gone?"

Alison.....

Ok, for some seriousness. Just talked to my mom who got back from vacation this weekend. She talked to a friend down in Arizona who just happened to be over visiting my dad and his wife. My mom learned that dad has a tumor on his kidney. He's in a lot of pain, hence the meds. He's not coherant, sleeps a lot. His wife is upset that he hasn't told my brother and I what's going on. I'm upset too. I would really like to go see him if his time is going to be so short. Moms going to see if she can get any more info or not since he won't talk to us about it. I guess that answers my question as to why he said he wasn't going to be around long.

I'm sad now......Seth is over here laughing away......can't stay sad with a smiling, laughing baby can I?

Andrea, I hope you are able to have some good conversations with your father and yes it is so true that when a baby is laughing it is hard to be sad and sometimes the feeling seems more bittersweet to me, grief and joy all tangled together - life.

I did sleep for a little while but had a dentist's appointment so I roused myself for that. I had made this appointment three weeks ago for a consult for bridge work. I had been in three weeks ago to have my teeth cleaned and they had taken x-rays and discovered I have a cavity, under an old filling and had scheduled me to have the filling done today. Nobody told me about this and I was definitely not up for it and then the dentist took off to take care of someone else, I waited 20 minutes for him to come back and left. Not happy about it, it is snowing and wretched out and my sweetie took two hours off work to do this and I left not knowing some of the things I wanted to know. I don't even feel like going back to him but he is one of the few dentists in the city who take care of fillings properly. Fortunately I was wearing my pearls and they are my ladylike leash.

[jerseyangel]

Carla--

Celiac.com blue is perfect! I mean, come on--it's the very antithesis of wheat--genius

And we'll look really good in it

[happygirl]

x

[AndreaB]

Laura, I haven't said anything to the kids. They aren't that close to their grandpa. He's not real comfortable around young children and they only saw him once or twice a year for a very brief visit. They'll probably hear when I talk to Mitch about it. I'm going to hang tight and see if my mom can drum up any info. I do know that my dad can't be left alone.

I will be watching for your posts on eos as I am curious about this. How you go about getting tested, etc. I would definately like to let my allergy/intolerance doctor know about it. My main doctor probably wouldn't know anything about it, but who knows.

My mom wants a list of what we can't eat......I need to email her the main groups and let her know the ones we are going to test.

Off to run outside for a few minutes before the sun disappears behind the trees. It's cold, but nice.

Any thoughts on your bilirubin level? I'll be curious to see what they say about that as well.

[happygirl]

x

[Green12]

Elevated liver enzymes go hand and hand with celiac, correct??

Laura, best of luck with your appt tomorrow Keep us posted.

Fiddle Faddle, I recognize that poem from my childhood....is it Shel Silverstein??

I am very emotional today, crying at the drop of a pin. Whenever I have reactions to anything I am eating and then try to go without this is what happens, it's like weepy withdrawal or somthing......does this happen to anyone else??

Question, I would like to get your perspective on this sice I value all of your opinions . Edward & Sons Rice Crackers, to eat or not to eat?? I know they don't have any added wheat, and claim to be made in a non-dedicated facility, but so our lots of other products. I remember Rachel that you questioned them, but then again that was during a stretch you were reacting to quite a lot of things. Anybody have any thoughts on this?? I would greatly appreciate it

[AndreaB]

Laura,

Talitha had HSP (Henoch-Scholein Purpura) in February and had elevated white blood count (pretty high I think). She has been fine since about April I think. She goes back to the kidney doctor in February to see if her numbers are still normal. We all suspect they will be.

Can you still have eos if you don't have elevated blood count?

Julie,

Hugs I'm sorry you've been down.

Don't have any info on the crackers.

[Rachel--24]

OMGosh...so many pages to catch up on. So much I wanna reply to but cant possibly remember it all. I've been cracking up reading todays posts!

Hmmmm....I'm wondering what colors I'll wear with gluten intolerance, Lyme, and Mercury. I'll be the freakin Rainbow Girl!

I am glad for everyone's voice on this thread and am baffled by the idea that certain criteria must apply to make one really part of it, Dingo Girl I am thinking of you. You and your fabulous wit have brought laughter to this thread and in doing so you helped to give Rachelville a heart. The thread is changing but the warmth and kindness have been laid down so firmly and so well, by you and others I will not name, that I feel confident that the support offered and received here will continue regardless of what form the thread takes.

Well said Rinne....as always.

OMG LYME GREEN LAUGHING LUNATIC HAT LADIES.......

ROFL...Yeah....Rinne is on a roll today!!

That is hysterical! Green is my favorite color but I actually dont *wear* anything green....especially not Lyme Green!! I guess I'll hafta get used to it since I'm one of the Lymies.

I'm glad you ahve your baaby with you when I am reallly down I spend time with my niece and nephew they are like a drug- I spent the whole day with them yesturday and left a completly different person.

miamia

Miamia, I know what you mean. Kids have that affect...I'm glad you had a good day.

Patti, wheat would wash me out, too.

Yeah.....Puleeeeze...NO WHEAT....its soooo drab.

Seth's nickname is Sunshine. Although he's getting more Stormy as he gets older and copies his older siblings.....he's still more sunshine than storm at this point though.

Andrea,

Me too....my nickname is Sunshine....originally started by Michelle but many others call me Sunshine still.

I've probably become quite stormy these past few years...dunno if I'm still Sunshiney.

Push away Happy Girl, you might just have joined the pushy women club.

Yeah we are all pushing our diagnoses on everyone...

Its just cuz we're so bonded here....we wanna share *everything*.

Celiac.com blue is perfect! I mean, come on--it's the very antithesis of wheat--genius

And we'll look really good in it

I wanna wear blue.

Andrea,

I'm sorry about your Dad.

Are you gonna be able to make a trip over there? I think you should try to see him if at all possible. I'll be thinking of you. Of course if you wanna talk you can pm me or call.

Rinne...I dont know how much of what I read in that article I actually *believe*. 1 out of 15 people infected by Lyme?? It seems too high but then again we dont know everything. Also I'm not sure I believe it can be spread from touching...I'm doubting it can be passed so easily. I'm thinking more along the lines of AIDS...where its possible to transmit sexually or during pregnancy....although I think if it were commonly spread sexually this would be more well known. I think it CAN occur....but probably in rare cases. The Bioset lady discussed this with me. I told her its not known to be spread this way. She said the info. isnt "out there" but she believes it can be spread....the partner is more susceptible when they have weakened immunity though. I would need to know more about this to come to any definate conclusions though.

In the case of 4 out of 5 kids being infected....is it possible they were infected while in the womb? I also dont think its entirely "far out there" to imagine that they were all bitten by infected ticks....especially if they are in a high risk area. I'm assuming the kids would play together and could easily all get infected by ticks.

I have been on the other message boards....telling everyone about Lyme...saying to GET TESTED! Telling everyone I believe a great number of those who are struggling may have Lyme. I'm spreading the word...its infectious.

I just want people to get better.

Have more to say but must surrender the computer...be back soon.

[miamia]

Andrea, My heart dropped when I read your post about your Dad. I know you knew he wasn't doing well, but this is a big shock. What are you going to do next....bring it up or not? I am really sorry that his health has declined so dramatically. PM anytime if you need to talk. Have you told your kids anything yet? Hugs to you, Andrea.

Rinne, thanks for reassuring me. I feel all weird being like, have YOU (points finger like Uncle Sam in those old posters) been tested for eos! It just seems like one of those things we SHOULD know about it...so why haven't any of us! Considering it involves food mediated reactions...and that is what we all have... I just would hate to have learned something and not share it, and wonder if it could have helped someone, esp our group here. And, I too, am already getting sick at the thought of eating this food.

Well, lets see. I'll wear blue (for Celiac) and I think eos should be white because it has to do with white blood cells. Wait...those are Penn State colors....hmmm....its a conspiracy. But, I don't even know if I have eos, so who knows. Sigh.

By the way, the results of my CT scan are not in. And I double checked with my mom, and my blood work was normal except for for elevated bilirubin (liver) levels.

Miamia---owe you a PM. xoxo

Laura-

I look forwrd to the pm. I finally had time this morning and a clear enough head to read up on eos- it does sound very interesting - I will definitly be looking into it. I think the biggest thing for me is that I know I can't be "allergic" to all the foods I react to - I react to almost everything and on any given day one thing might be ok and the next wham- it sets off a major reaction-It sounds like this can happen for those with eos.

[happygirl]

x

[miamia]

Elevated liver enzymes go hand and hand with celiac, correct??

Laura, best of luck with your appt tomorrow Keep us posted.

Fiddle Faddle, I recognize that poem from my childhood....is it Shel Silverstein??

I am very emotional today, crying at the drop of a pin. Whenever I have reactions to anything I am eating and then try to go without this is what happens, it's like weepy withdrawal or somthing......does this happen to anyone else??

Question, I would like to get your perspective on this sice I value all of your opinions . Edward & Sons Rice Crackers, to eat or not to eat?? I know they don't have any added wheat, and claim to be made in a non-dedicated facility, but so our lots of other products. I remember Rachel that you questioned them, but then again that was during a stretch you were reacting to quite a lot of things. Anybody have any thoughts on this?? I would greatly appreciate it

Julie-

I am sorry your not feeling well/ I know what you mean when I ahve a bad reaction to food I get really down. I think for me it still- even after all this time is so hard to except the idea of how sick fod can make me. (especially when its nothing crazy).

I have had mixed reactions with these crazkers I used to be able to eat them and then I started reacting to them. But I really liked the tamari and the vegetable ones-yum.

Miamia

[Rachel--24]

Question, I would like to get your perspective on this sice I value all of your opinions . Edward & Sons Rice Crackers, to eat or not to eat?? I know they don't have any added wheat, and claim to be made in a non-dedicated facility, but so our lots of other products. I remember Rachel that you questioned them, but then again that was during a stretch you were reacting to quite a lot of things. Anybody have any thoughts on this?? I would greatly appreciate it

Noooooo...I definately have problems with the crackers. Every single time I tried them. I cant say if it was gluten or something else but definately NOT good for me. BAD Edward & Sons crackers.

I wish I could have a warm bagel with cream cheese.

Laura...I will pm you my email address.

About the grapes....one of the worst for me. I havent had grapes in about a year I think. So many possibilities with grapes....as Donna metioned there is the Auxigro factor, then there is mold, also sulfites are sprayed on grapes. Could be any of these things.

I feel all weird being like, have YOU (points finger like Uncle Sam in those old posters) been tested for eos!

Thats so me! I was like bursting to tell *everyone* to get tested for Celiac last year. I somehow managed to contain myself but it wasnt easy. Now there is Lyme and mercury....God help those who are around me every day.

I have "outdone" myself ....I've eaten TWO pints of ice cream today!

EDIT: Very soon I will have to take a HOT bath becuz I'm going numb from the cold.

Ok...now I am replying to random stuff that I recall reading but not sure who posted what.

Someone mentioned massages....for my lymphatic system. YES...massages are the best thing for me. I get them almost daily...from whomever is willing to give them to me.

Seriously, I've been sooo lucky to have almost nightly massages since almost the beginning of my illness. It helps alot. Because of all my Dr. expenses I cant really afford professional massages but the ones I get are pretty darn good.

Rinne....was it you that said I wanted to "Rachel" my treatments??

Yeah...I seriously want to be at the Dr.'s every single day!!

Whenever I have reactions to anything I am eating and then try to go without this is what happens, it's like weepy withdrawal or somthing......does this happen to anyone else??

Julie,

I get weepy during reactions....mostly reactions from chemicals...like perfumes. I never get weepy withdrawl though. Well....I dunno what would happen if someone took all my ice cream away.

[miamia]

Noooooo...I definately have problems with the crackers. Every single time I tried them. I cant say if it was gluten or something else but definately NOT good for me. BAD Edward & Sons crackers.

I wish I could have a warm bagel with cream cheese.

Laura...I will pm you my email address.

About the grapes....one of the worst for me. I havent had grapes in about a year I think. So many possibilities with grapes....as Donna metioned there is the Auxigro factor, then there is mold, also sulfites are sprayed on grapes. Could be any of these things.

Thats so me! I was like bursting to tell *everyone* to get tested for Celiac last year. I somehow managed to contain myself but it wasnt easy. Now there is Lyme and mercury....God help those who are around me every day.

I have "outdone" myself ....I've eaten TWO pints of ice cream today!

EDIT: Very soon I will have to take a HOT bath becuz I'm going numb from the cold.

Ok...now I am replying to random stuff that I recall reading but not sure who posted what.

Someone mentioned massages....for my lymphatic system. YES...massages are the best thing for me. I get them almost daily...from whomever is willing to give them to me.

Seriously, I've been sooo lucky to have almost nightly massages since almost the beginning of my illness. It helps alot. Because of all my Dr. expenses I cant really afford professional massages but the ones I get are pretty darn good.

Rinne....was it you that said I wanted to "Rachel" my treatments??

Yeah...I seriously want to be at the Dr.'s every single day!!

Julie,

I get weepy during reactions....mostly reactions from chemicals...like perfumes. I never get weepy withdrawl though. Well....I dunno what would happen if someone took all my ice cream away.

rachel-

the lymphatic drainage massage is different than an ordianry one I had looked into it before.

The person has to be specially trained. I have more info on it I should look for it . It is supposed to be very beneficial.

Elevated liver enzymes go hand and hand with celiac, correct??

Laura, best of luck with your appt tomorrow Keep us posted.

Fiddle Faddle, I recognize that poem from my childhood....is it Shel Silverstein??

I am very emotional today, crying at the drop of a pin. Whenever I have reactions to anything I am eating and then try to go without this is what happens, it's like weepy withdrawal or somthing......does this happen to anyone else??

Question, I would like to get your perspective on this sice I value all of your opinions . Edward & Sons Rice Crackers, to eat or not to eat?? I know they don't have any added wheat, and claim to be made in a non-dedicated facility, but so our lots of other products. I remember Rachel that you questioned them, but then again that was during a stretch you were reacting to quite a lot of things. Anybody have any thoughts on this?? I would greatly appreciate it

Julie-

what is is that you reacted to and realized you couldn't have?

[Rachel--24]

Carla,

It cant hurt to get tested for Lyme. Its better to know for sure. Its not one of those things that you wanna find out later on down the road. If you had it you would want to start treating it before it got worse.

I'm never afraid to jump the gun when it comes to finding out whats going on. I've asked for sooooo many tests...I was seriously driving the Dr.'s crazy. I was scheduling appt.s about once a week just so I could tell them what I wanted to be tested for. Ironically, I'm pretty sure I got tested for almost everything I requested.....except Lyme....which was REFUSED!

Anyways, I never felt bad about it because *someone* needed to be doing this and ruling things out. If the Dr.'s werent gonna take the time then I had no choice but to take matters into my own hands. I wanted every disease which had symptoms similar to my own ruled out. Eventually I ran out of stuff to ask for though.

rachel-

the lymphatic drainage massage is different than an ordianry one I had looked into it before.

The person has to be specially trained. I have more info on it I should look for it . It is supposed to be very beneficial.

Wow...I didnt know this.

I'm gonna look into this. It might be something I could try....at least once to see if it makes a difference.

Thanks miamia.

I'm seriously FREEZING now....must get into the tub.

[CarlaB]

Carla,

It cant hurt to get tested for Lyme. Its better to know for sure. Its not one of those things that you wanna find out later on down the road. If you had it you would want to start treating it before it got worse.

I'm never afraid to jump the gun when it comes to finding out whats going on. I've asked for sooooo many tests...I was seriously driving the Dr.'s crazy. I was scheduling appt.s about once a week just so I could tell them what I wanted to be tested for. Ironically, I'm pretty sure I got tested for almost everything I requested.....except Lyme....which was REFUSED!

Anyways, I never felt bad about it because *someone* needed to be doing this and ruling things out. If the Dr.'s werent gonna take the time then I had no choice but to take matters into my own hands. I wanted every disease which had symptoms similar to my own ruled out. Eventually I ran out of stuff to ask for though.

Good point. The thing is, it is "later down the road" if I have it ... I've had food issues and allergies since I was a kid. I was always "sick". The one thing that really stands out in my mind about high school was how TIRED I was all the time. College was my first "mystery er visit" -- my roommate took me because I wouldn't get out of bed except to go to class. It COULD all be gluten intolerance ... but if it is, why aren't I BETTER!? At least a little better? My digestive symptoms are under control, except for this detoxing (but it's not the same as glutening or casein-ing). I guess it COULD be adrenals, but even with that, I don't feel like I'm getting better, and it's been almost three months on this diet. I sometimes feel okay, and maybe I'm cycling and getting better, but after a week like this last one, it's hard to tell. I honestly never even considered Lyme until I read about the vitamin C and salt (for the hundredth time!!) and realized how much more of both of those I was getting when this d started. Then I thought back to all those ticks I had as a kid ... I couldn't begin to count them all ... we spent a lot of time out in the country and they were deer ticks -- all in my hair, so I wouldn't have noticed the rash. I tried to call my doctor today, but she never called me back. I don't want to waste my time with her if she won't use the right lab ... I'll try again tomorrow.

[Rachel--24]

Ok...I was at Curezone reading the Lyme forum and one poster was asking about the best treatment for her 5 year old...who had the rash and was symptomatic. THEN she posts this later on....

Okay! We just noticed the rash starting on my 9 yo tonight. He has 5 rings so far. Is this normal for more than one family member to get it at the same time like this? I guess we'll be taking him in now in the morning. What are the chances my daughter will have it also? The three of them stick together like glue...they all explore together.

Thanks!

Seee....this is what I'm saying. Kids play together so if several kids in one family end up with Lyme I'm thinking its not from contact but from actual *tick bites*. This is WAY more logical to me. Also if Lyme were so easily spread it would happen much more often that other people are getting infected in the home, workplace, etc....but it just doesnt seem to happen that way.

Rinne...on the Lyme forum there are alot of posts about Samento/cats claw....I'm gonna have to read up on what they are saying... but not until after my bath.

I tried to call my doctor today, but she never called me back. I don't want to waste my time with her if she won't use the right lab ... I'll try again tomorrow.

Good idea.

There are ALOT of people who've had Lyme for decades and didnt know it. I think Lymetoo had it since childhood and was just "sick" most of the time. It *can* get worse though...if something else happened to put your body under even more stess....it could get worse. Thats a good reason to know for sure. You could prevent things that havent yet occurred from ever occurring if you have Lyme and get treated for it now.

I dunno....maybe I'm gung-ho but I know when its me I just need to know ASAP. Whenever a Dr. suggests a test and asks when I'd like to do it....my answer is always the same "RIGHT NOW".

Same with the Bioset...he talked to me about it.....saying he wanted another test to confirm Lyme. Either conventional or Bioset....he told me to think about it...if I wanted to do Bioset he would give me the # to call. I was like...."I dont wanna waste time...I'll take the # now...I just wanna get started." I'm sooooo impatient sometimes!

[CarlaB]

if something else happened to put your body under even more stess....it could get worse. Thats a good reason to know for sure. You could prevent things that havent yet occurred from ever occurring if you have Lyme and get treated for it now.

This is another thing ... my symptoms have always appeared after periods of great stress. Every single time. I lived under constant stress when I lived with my mom and step-father (as a child), so I never felt good then.

I know Lyme has a link to stress, but I wonder if gluten intolerance does, too. I do carry the gluten intolerance genes, and my granfather on one side I would guess had it -- it's pretty obvious actually.

[Rachel--24]

I dunno Carla,

All I can say is that I have the gluten intolerance genes too and yet it wasnt the answer for me....I was still sick. I didnt think I should *still* be sick even after being fanatically gluten-free for over a year. In my case I wasnt sick all my life though...I was healthy. I was under alot of stress when I got sick. I had thought maybe the stress had triggered gluten intolerance, or the dental work....or the fact that I quit smoking that same month. I'd read that some people develop Celiac after quitting smoking....so I thought maybe that was it.

Now I just think I have Lyme Disease and everything else is secondary to that.

Andrea,

Forgot to answer the question about my appt.'s. I go to Bioset on Thursday and then next Monday I see my Dr. again. He should have all the results from the Bioset test (which confirmed Lyme) so I'm curious to see how he's gonna want to proceed. I've tested positive for Lyme twice now and then a weak positive for the third so it should be a guarantee now. I'm wondering how hes gonna wanna treat this. He mentioned Cats Claw at my last appt. We'll see what happens Monday though.

[CarlaB]

Rachel, it sounds like with you it was a lot of things at once -- the mercury, the gluten, and the Lyme. It will be interesting to see whether you tolerate gluten after you get the Lyme under control.

[happygirl]

x

[AndreaB]

Rachel,

Thanks for the appointment schedule.

Carla,

Keep us posted on the progress of getting ahold of your doctor for lyme testing.

Gotta turn over the computer for just a little bit.....

[Rachel--24]

Rachel, it sounds like with you it was a lot of things at once -- the mercury, the gluten, and the Lyme. It will be interesting to see whether you tolerate gluten after you get the Lyme under control.

Carla....I've thought about this alot. I'm betting that I *can* tolerate it but dont know that I'll start eating it. I never had reactions to gluten or any other food prior to getting sick...I could eat anything. The thing is.....I react to *everything* so who's to say gluten is really any diferent from all the other stuff I'm reacting to right now?

Heck....I react to the MOLDS found in all grains...including wheat. Its not like I've been able to test my reaction to gluten and say "Oh yeah...gluten is definately the problem". I wont be able to test this until I'm well and able to eat stuff again. Then I can see if its truelly affecting me...right now its impossible.

Then...if I DONT react...I wont know if its still putting a strain on my immune system....which I wouldnt want considering I have Lyme. I'm thinking it might be best to stay gluten-free because a healthy diet is another way to keep the immune system strong.

All I really have indicating gluten are my Enterolab results. I dont know when Dr. Fine will ever publish his findings but until he does a part of me will question this. Thats just the way my mind works....I need proof. If I dont have a noticeable reaction to gluten what proof will I have that any reaction is really occurring??

[Rachel--24]

Rinne....I found this. Its a person's treatment plan. It includes the rife machine.

Open Original Shared Link

Here's more....but I'm thinking you may have already seen this stuff??

Open Original Shared Link

I'm going to bed now....getting sleepy. Night everyone.

[AndreaB]

Just got off the phone with Dad about 1/2 hour ago.

He sounds much better than last time I talked to him. He doesn't want me to come down right now. He wants to find out more first. I told him I'd call this weekend.

Rachel, I'll probably call Sunday after pictures to let you know how they went and find out about your appointments.