Omg...i Might Be On To Something

[Rachel--24]

I keep thinking MCS is my biggest problem....the one main factor that keeps me from living life the way I want. I've looked into MCS alot and had never seen it linked with Lyme. The first I heard it was from my doctors mouth when he said he wanted me tested for Lyme because of the chemical sensitivities. It wasnt a shock to be hearing about Lyme but I was definately shocked to hear the two conditions are linked.

I keep wondering about this....the Dr. explained why the MCS would occur with Lyme but I just dont find alot of info. about it.....so I keep wondering. Is the Lyme the underlying factor? Dont know why I didnt do it sooner but I did a search for MCS on the Lyme board. There were alot of threads about this.

So now I think I may be convinced....my mind can rest. I've only read one thread and it was good enough for me. I'm a Lymie.

I tried to post the link but its a "lame advertisement"...of course.

[Rachel--24]

Ok....here is what some Lymies had to say....

I do feel lyme and multiple chemical sensitivity are related in many individuals. It makes since to me since lyme is attacking the liver and liver pathways that the body uses to clear the nasties from the body that it could lead to mcs in many.

Like I said mcs got better for me when I went on antibiotic therapy.

I have both Lyme and MCS as lots of people do.

Check out Planetthrive.com lots of mcs and lymies there.

Lyme messes up the immune system bigtime. Then the immune system cannot handle chemicals.

I also can't be nesr cigarette smoke, perfume, cleaning fluids, new paint, new carpet, etc.

Being on abx has helped diminish a little of these sensitivities.

Before my diagnosis and subsequent abx treatment I was definitely heading down the road of Multiple Chemical Sensitivity.

At this point I think MCS is a product of recirculation of lyme junk whether it is dead or alive, and a real sluggish lymph system.

Try to eat as well as you can. If you eat a lot of prepackaged and prepared foods (doubt you do) then start reading labels and stay away from artificial stuff.

Interesting stuff ....there is definately a link...my Doc knew what he was taking about.

I've decided that my obssesive *need* to verify everything from one end to the next....must come from 3 horrid years of dealing with incompetant Dr.'s who would likely not have ANY knowledge about anything thats been discussed in this entire thread. None of it....this stuff would be completely foreign to them. Even Celiac was foreign to them. I think if I hadnt taken charge of my health I wouldnt be here right now.

I remember the night I thought I wouldnt live through.... In the middle of the night I was calling people to say goodbye....I didnt have any idea of what was happening but I thought it was over for me. The next morning I was calling people at my HMO....begging for help.....crying my eyes out. I couldnt take care of myself anymore....I wanted to be somewhere where I could sleep and people would take care of me and if anything happened maybe they could help me. Maybe they could finally SEE that something was wrong. They wouldnt put me in the hospital...my mom had tried but they said no...because I was still able to drink water. Nothing was happening...they just didnt seem to care.

That morning I called a naturopath I'd seen for candida......left her a message. She called back immediately. She said she could hear it in my vioce....that things were really bad. She talked to me for like an hour.....told me how to deal with my HMO....to not allow them to not take me seriously....to get them to take action.

I think shes really the one who saved me....one day I will tell her and I will thank her for it. I had no strength left and she was so caring and so concerned and so determined to not see this happen to me. She guided me in the right direction. She told me to only eat some organic vegetables.....nothing else. Only one thing every 4 hours. At that time I couldnt even eat half of an apple without gagging...I couldnt hold food down very well. My mom hadnt realized how sick I was until that day...she came to my house and got me.

I stayed really weak for a few days...and more chemically sensitive than I've ever been before.... but I was doing exactly what the lady (who was my angel) had told me to do...I was eating a few organic foods. About a week later I was back at home....I started doing things around the house...another few days go by and I'm organizing and PAINTING my garage and doing major landscaping projects in the yard. It was like a miracle. Things turned around just like that. I thought I was dying and then 2 weeks later I was a different person.

I dont know why I'm thinking of all this now but I really need to tell that lady how much she helped me on what might have been the worst day of my life. I must have had angels all along cuz every time I reached rock bottom and lost all hope...something turned it around. Like the angels *gave* me something to guide me...to give me something to focus on....to give me a little bit of hope and strength back.

I think because of the fact that this kept happening and because it felt like I wasnt doing it all on my own....like I was being carried through those worst times...because of that I always knew I would get an answer and that one day I would get better....because it was meant to be that way. I still feel that way. My struggles arent over but I'm still not alone....so I know I'll get better.

[Judyin Philly]

HI RACHEL

YOUR LAST POST WAS AMAZING.

I'VE BEEN READING THE OMG THREAD EACH NITE AS DON'T WANT TO HAVE 300 PAGES TO GO THROUG EVER AGAIN.

WHAT A JOURNEY YOU'VE HAD.

WAS TALKING WITH FOLKS OVER IN DAILY STRENGTH AND WE ARE ALL SO WORRIED ABOUT EVIE..HAS ANYONE HEARD ANYTHING FROM HER?

DOES ANYONE KNOW HER WELL ENOUGH TO CALL HER IF THEY HAVE HER PHONE #?

MISS ALL YOU GUYS OVER HERE TOO.

HUGS

JUDY

[Rachel--24]

nobody is here tonight....'cept me.

I wonder if Susan is at the pub...torturing that man.

hehe....cant wait to hear about it.

I'm feeling better now that I've "confirmed" that Lymies get MCS and now that I've released some pent up emotions. Dont know where it all came from...but there were tears and I think they are good tears.

I will sleep peacefully tonight.....but without lavendar-misted ironed pillowcases. Mine are flannel.

Hi Judy,

I thought I was all alone here....I'm glad you're keeping up now.

We dont want you getting lost hundreds of pages back ....Susan isnt lending out the dingos (she's been glutened and needs them right now) so dont know who will find you and bring you back.

Does Evie go to DailyStrength?? I dont know if anyone has her number....I'm thinking noone does because noone seems to know where she is right now. I'm not sure if she went into the hospital?? It sounded like she might....I'm very very worried because she has C-diff and her last post said she was feeling weak. I wish someone could find out something.

G'nite my friend....hope all is well with you.

[Judyin Philly]

well i'm here... what am i chopped liver...????

Judy

so you went to bed did you???

Evie has a posted thread on daily strength but haven't gone today to see her last post. just sent her a PM tonight and will on d/s too.

I knew she had c-diff from reading on here. don't remember her addressing that on d/s though.

thought Susan was going to the pub to 'AVOID' the jerk????

sorry she was glutened..missed that one..except know she called out sick on day and new bosses were cool with it.

j

[Rachel--24]

well i'm here... what am i chopped liver...????

Judy

I didnt know you were here! See my last post.

'Course you are not chopped liver...

[Judyin Philly]

ANDREA, HOW ARE YOU HOLDING UP?

I WAS GOING ON THE THREAD TO SEE IF YOU WERE GETTING SOME TIPS FOR THE KIDS RE: YOUR VISIT TO SEE YOUR DAD.

HAVE YOU HEARD ANY MORE NEWS?

JUDY

[Rachel--24]

Andreas thread?? I will have to go read now.....

[AndreaB]

Rachel,

Thank you for sharing. That was a very poignant post. It brings tears to my eyes.

Yes, you have angels that watch over you and one of them was that naturopath doctor. Wow, I think she'd be both pleased and surprised and touched that you remembered her.

I'm also worried about Evie. I don't have her number or I would have called by now.

Hi Judy. Good to see you over here.

[Rachel--24]

Rachel,

Thank you for sharing. That was a very poignant post. It brings tears to my eyes.

I got emotional out of nowhere. Maybe I am healing. I found your thread....I'm gonna call you tomorrow k?

[AndreaB]

HAVE YOU HEARD ANY MORE NEWS?

JUDY

I'll be calling tomorrow probably. I did call my church today to put in a prayer request. My pastor told me we are the fourth family going through a death or impending death recently. I'm just hoping he can hold on until I get down there. I'm a little mad that the doctors didn't catch this. He's had ct scans, one a year since he had his other kidney removed 5 years ago due to the prostate cancer (which was discovered then). I'm so thankful to have Mitch. He's a rock through this and I know I'll need him big time when we are down in Arizona.

I got emotional out of nowhere. Maybe I am healing. I found your thread....I'm gonna call you tomorrow k?

I think you are healing.

I'll be home. I'm fine most of the times. Emotional at times too. School's be kinda sidelined and I need to back up and cover some phonics that didn't get cemented before we go further. Talitha knows Grandpa is dying. We've told her everyone is dying (a little each day), it's just that Grandpa's death is imminent. I still need to talk to the kids about how different he will look. I want to try and talk to Joyce (his wife) and see what she can tell me to help prepare the kids. I'll also be seeing him by myself first.

[Anne AMP]

My MCS where brought on by toxic mold exposure. My condo had mold growing in the wall which was discovered when the slow leaking pipe broke all the way. I lived there a year with the mold. My blood test for Celiac disease came back negative and I did not have a biopsy. I am only able to eat beef, chicken, butternut squash, and cooked pears at this time. Everything else gives me a migraine and bad nausea. Beware of the mold, it is deadly!

Anne

[Judyin Philly]

well i was scared Rachel cause i know Liver is good for you and was afraid you might want to 'gobble me up'

yep, your post got me too so cover it with a joke, you know me..

Andrea, i'm going to catch your thread now and bow out and then ck on evie in d/s. and see when she last posted at it was the 6th on here.

nite friends.

judy

[rinne]

Welcome Anne.

I'm sorry to hear about that mold has made you ill. What kind of treatments are available to you?

Rachel, thank you for your post. I am so glad that in the midst of being so ill that you knew somehow to reach out for life.

I remember the day I decided not to die. I had returned from a doctor's appointment that didn't happen, I had waited an hour and a half and was in so much pain I couldn't sit, I had paced the whole time and had had to move my car once. I told the receptionist to forget it, I was in too much pain to wait and I came home, laid on the bed and cried. My sweetie came home and found me saying I was just going to lie there and die cause there was no help to be found. The phone rang and it was a neigbour of a friend, I had called her the week before because my friend said she knew alternative care providers and really paid attention to her health. She gave me the name of an acupuncturist and that is how I met Dr.Y. (so mysterious) created the space for me to read my body through the pain and to trust what I knew. This allowed me to truly take charge of my own health. I will call him my Rocks and Pillows Doctor.

From that moment, one door after another has opened that has helped me to heal and along the way I have met and am meeting the most extraordinary people.

[Green12]

I dont know why I'm thinking of all this now but I really need to tell that lady how much she helped me on what might have been the worst day of my life. I must have had angels all along cuz every time I reached rock bottom and lost all hope...something turned it around. Like the angels *gave* me something to guide me...to give me something to focus on....to give me a little bit of hope and strength back.

I think because of the fact that this kept happening and because it felt like I wasnt doing it all on my own....like I was being carried through those worst times...because of that I always knew I would get an answer and that one day I would get better....because it was meant to be that way. I still feel that way. My struggles arent over but I'm still not alone....so I know I'll get better.

Wow Rachel, what a post, totally made me tear up....... I'm glad that lady was there for you in your darkest hour. So much to be thankful for.

I can so relate. There have been some awful awful days, so much suffering, no help, no support...but then some small little bit of strength rises up above all the doubt and everything else, and we get through it.

Keep fighting

Hi Judy! Please let us know if you hear anything about Evie, we have all been so worried...

I'm so anxious to hear from Susan how it went at the pub

Welcome Anne I'm so sorry about the mold exposure. I have been hearing more and more about that lately, nasty stuff for sure.

Hi to Laura, you have been a stranger lately. Hope you are hanging in there with the food challenges. And thanks for the news about Mia Mia's procedure...

Mia Mia, how did it go? Hope you are well.

Did Richard find his mojo yet??

And Bev had a question....must go back because I forget what it was.

Where is Carla? Is this when she was going to visit Morgan??

[dlp252]

Donna- Have I ever mentioned how much I LOVE your avatar. You look so happy!

Thank you! That was taken in March of this year at a fitness convention...I met up with a group of ladies I met online at a fitness website (we'd met before) and we asked some guy who was passing by to take our picture...just as he was ready to snap the picture he YELLED out "SAY SEX", which just really struck me funny...cuz, well, he just didn't look like the type. So that's why Donna =

[dlp252]

I'm going the saliva testing this month too for hormones. I'm getting used to the drool.

Yep, this was fun, lol. Surprisingly didn't have as much drool as I thought I did.

[happygirl]

x

[CarlaB]

I'm going to adjust the elimination diet just a bit for a little less fruit. Carla, did you say you can only eat 1 or 2 fruits per day? That was for the adrenals wasn't it? My doctor didn't say anything about adjusting the diet except to say that I shouldn't eat more than 1/2 a fruit at a time and never eat it alone.

I'm trying to catch up, so this is a premature post ...

Yes, my directions said to eat no more than one a day, and never alone. My mineral levels indicated too much sugar. Sugar is bad for adrenal fatigue.

The infrared sauna was amazing. I loved the heat and I am not having my usual reaction to heat which is a particular headache that tends to become a migraine. Carla, I am so glad that you talked about your sauna experience, it really helped to know that someone else was doing it and finding it helpful. I did think there was an oily feeling to my skin in addition to the sweat.

I'm glad you liked it. I always get that oily feeling, too.

My hair stylist who has been doing my hair for about 5 years now was commenting yesterday on how good my skin was looking. She seemed amazed ... she then commented on specifically what she meant -- the color, the texture, both color and texture being so even. She really noticed a difference from my last haircut six weeks ago. It must be the sauna. I thought I was noticing a difference, but it's hard to tell since I see myself every day!

[CarlaB]

Where is Carla? Is this when she was going to visit Morgan??

Yes, I finally got a chance to check in and am trying to catch up. The game is later, but Adam and I may skip the game .... it's really icky out.

[AndreaB]

Hi Carla,

Give Morgan a hug for me.

I'm sorry this is so long, but hopefully it will explain why I was out for a bit.

xoxo

Don't apologize for having a long post. You have been through a lot. Is eos something of which you can eat the problem food on occasion? When do you go in for the scope? Was that Wednesday? Hoping for some answers for you.

I hope for answers for everyone.

Miamia, How are you?

[CarlaB]

Hi Carla,

Give Morgan a hug for me.

We're having a tailgate with her today. Her roommate's dad has celiac! What are the chances of that? Anyway, good for him because I have gluten-free egg salad sandwiches and gluten-free brownies!! In fact, the whole tailgate is gluten-free. He'll get to eat today.

I had a great experience at Cheeseburger in Paradise last night ... I'll post about it later, we're off to go get Morgan now. They're sweet potato chips are now gluten-free, and they just had a gluten-free seminar for their employees. The manager was VERY well educated on all of it. He sat down at our table and chatted with me a bit about it.

[rinne]

I'll be home. I'm fine most of the times. Emotional at times too. School's be kinda sidelined and I need to back up and cover some phonics that didn't get cemented before we go further. Talitha knows Grandpa is dying. We've told her everyone is dying (a little each day), it's just that Grandpa's death is imminent. I still need to talk to the kids about how different he will look. I want to try and talk to Joyce (his wife) and see what she can tell me to help prepare the kids. I'll also be seeing him by myself first.

You know sometimes even moms fall apart, mom , and if you need to do that I know you know this is a good place. I am so glad that you and your father have been close and that you two will meet this moment with love.

Thank you! That was taken in March of this year at a fitness convention...I met up with a group of ladies I met online at a fitness website (we'd met before) and we asked some guy who was passing by to take our picture...just as he was ready to snap the picture he YELLED out "SAY SEX", which just really struck me funny...cuz, well, he just didn't look like the type. So that's why Donna =

I've always thought that is great picture too.

Laura, thank you for your post and all your scientificness. I'm sorry yesterday was such a miserable day and hope for better today. I think you will find your appointment with the Integrative Doctor to be a very different experience. They are doctors who have seen the failure of the conventional system, been able to admit it and then continue on in their studies because, I think, that they are the doctors who are truly committed to seeing their patients get well.

Carla, the other thing I remembered was that when I started sweating my eyes started burning. I was so astonished at how wonderful the heat felt, usually heat makes me nauseaus and triggers migraines. I have my husband talked into one, it won't happen right away but I can see taking it up as a regular detoxification practice. My skin felt wonderful afterwards but then I am pretty smooth to begin with. And hello to Morgan.

[DingoGirl]

Trampolines are for OTHER kids, and cosmos...well she'll have to go to the dentist's office for that!

What? you get Cosmos at your denist's office? (I'm talking about the drink here, remember Bev jumping on the trampoline and drinking Cosmos for her birthday, or something?)

I wonder if Susan is at the pub...torturing that man.

hehe....cant wait to hear about it.

Well, here's my uneventful and bizarre report. I was getting ready to go out, not caring so much what I looked like, not REALLY primping too much or trying to look extra cute, because, what is the point, this pub is not that well-attended, and I don't really care.......so I went, and it was PACKED Stood at the very cramped bar, waiting for my niece's attentiona and waiting for my friends and for a table. I'd been standing there about 5 minutes, and I look over, and this crazy-looking guy in a ball-cap and weird glasses is waving at me......and I must have stared for a full 7 or 8 seconds, expressionless, and then waving confusedly (is that a word?), and it was THE STUPID JERK GUY, OMG I couldn't even recognize him.....so that was it! I just smiled and mouthed the words, oh, it's you! you're wearing glasses? and he said yes, I wear glasses.....THAT WAS OUR WHOLE INTERCHANGE and then he left about an hour later, and my friends looked at me and said, WHAT WERE YOU THINKING??? when they saw him......well, I've seen the guy 4 or 5 times and he never had the ballcap and glasses on before - - but I guess there was an exceptional dork factor, whatever, who cares.......it's all ancient history So we had fun and chatted with some people including my 23-y-old niece's FORTY-YEAR-OLD boyfriend and I was home by 9. Harumph.

RAchel - - very poignant post and I DO think you should call that naturopath and tell her your story.

Laura... My gosh, that stuff is all so confusing. I would say, pray, and pray hard, the answers will come, and you will fortunately and unfortunately know more than the doctors.

Dang I forgot what else....took me about 20 minutes to catch up, and now I must get ready for WORK.....I hate working Saturdays, esp. rainy saturdays, I love the rain SO much and love staying HOME in the rain.

love and kisses to all......

[Judyin Philly]

lauraJ

got caught up on you

HAVE YOU EVER FELT LIKE YOU WERE A WASHING MACHINE STUCK ON THE 'SPIN' CYLCLE?

JULIEM

I'VE CK'D WITH EVERYONE I KNOW BUT JENVAN ON EVIE.

LEFT PM'S AND IN DAILY STRENGTH EVEN ASKED IF ANYONE IN HER HOME WHO CKS HER COMPUTER PLEASE ANSWER AND LET US KNOW ABOUT HER

I DON'T KNOW ANYTHING ELSE TO DO.

DON'T THINK ANYONE HAS HER PHONE #

JUST GOT A THOUGHT. I'M GOING TO CK THE CANNING THREAD AND SEE IF ANYONE MENTIONS HAVING HER #

WILL POST IF I FIND OUT ANYTHING BUT SO FAR..NADA.

JUDY