Omg...i Might Be On To Something

[CarlaB]

Okay, I can't sit around here and play this morning ... I had to do a C. Diff. test and it has to be taken to the hospital/lab within two hours ... this is the worst test yet that I've had to do ... at least with Enterolab you just put the lid on the container ... this one involved transfer.

After that I'm going to work out. I LOST two pounds yesterday ... I just don't eat as much when Adam's gone ... he makes me eat, but I have no appetite. He's on a golf trip. I'm so glad he could go, he deserves some fun. It's been a rough year. He hesitated to go, but since Morgan is going to be home, there's another driver if my herx starts before he gets back.

Patti, mornings are rough for me. I usually have about the same schedule as you said ... go to sleep between 10:30 and 11, wake up between 1 or 2, but for me that's because I took a lot of supplements right before bedtime, so drank a lot of water. Then I sleep till my youngest wakes me. I usually lay in bed on my laptop for another hour or two, but can't today.

[dlp252]

Carla - love that bag! Bet Morgan will love it too!

Yep, had to do that C.Diff test last year and had to do another one for other stuff this year. Hate it.

[jerseyangel]

Carla--Cute bag! Please wish Morgan a happy birthday for me

I'm a Dooney and Bourke girl One of my many weaknesses

Is that the test where you have to take samples over 3 days and put them in 7 little bottles with a disgusting-smelling solution? I had to do that a couple of years ago.

I apologized to the lab assistant who had to take them from me and label the bag....

[rinne]

Dear Rinne,

I will let you know as soon as things are up and running! It could take a while. Since I am not a Web master, I am going to have to figure everything out by myself. That is not going to be easy.

I also need to put together an e-catalog.

We'll look forward to seeing it.

So, they had to "squeeze me in" I almost left because I was so upset and feeling so sick, but I thought "wait a minute, where do I need to be more? work or taking care of my health?" so I stayed. By the time I got in to see her I was crying. I basically told her everything that's been going on and her three theories are:

1. Crohn's

2. refractory sprue :ph34r:

3. Lyme disease (can you believe it?)

Yup. to Lyme. Sorry you had such a rotten day, sending hugs.

I actually never get enough rest...except maybe sometimes on the weekend. I average about 5 hours of sleep a night...which isnt too good for someone whos sick.

I'm like that too although sometimes I can nap during the daytime for an hour or so.

Yeah...thats what they said. That if all this happened when I was one....instead of 31...I would definately be at high risk. Denise seems to think so too...basically its all the same type of issues. My problems are very similar to what they see with the Autistic kids.

Jenny McCarthy has a son with autism and she has a book coming out in September, I saw her on The View this week and she said she was going to use her "big mouth to blow the lid off it" basically. Her son is five years old now and she also said there is hope.

Hey....I just saw that its Morgans Birthday!!

Happy 19th Birthday Morgan!!!!!

Belated HAPPY BIRTHDAY Morgan, cool purse, lucky girl.

Does chlorella make you feel kinda sick to your stomach and hungry and the same time?

No, but I think there is a percentage of people it just doesn't agree with, the container I have says that if you take it and burp a lot then discontinue use.

I actually hate the idea of disability...not because I want to work so much but mostly because I still feel like I'm able to work. The problem with that is that it is getting harder and harder to get myself to work every day and I'm afraid that at some point I'm going to get the point where I've pushed myself too much and that that will just make things worse and harder to recover from. My adrenals are just not coming back, and I can actually feel that process happening.

I can't sleep even taking four 3mg melatonin tablets, 2-4 valerian root tablets, two 100mg 5-HTP tablets. Somehow I keep thinking that if I could just sleep when my body WANTS to sleep, I'd get enough. The work schedule I have now just doesn't let me do that.

I think you have just made a real case for taking some time now and not waiting until it becomes worse. Please take care of yourself. I'm wondering about B vitamins, how are your levels? I know that when I was waking up after feeling like I hadn't rested at all that my B12 levels were low and that taking the sublingual B and the shots really seemed to have helped this. I'm still sleeping only five hours of so but it feels like I do rest during that time.

Now I'm off to take my Chlorella, that lovely green ocean breeze brew.

[dlp252]

I think you have just made a real case for taking some time now and not waiting until it becomes worse. Please take care of yourself. I'm wondering about B vitamins, how are your levels? I know that when I was waking up after feeling like I hadn't rested at all that my B12 levels were low and that taking the sublingual B and the shots really seemed to have helped this. I'm still sleeping only five hours of so but it feels like I do rest during that time.

Thanks Rinne! Well, I just had my annual exam and nothing came up there. The LLMD I saw is running a vitamin/mineral panel I think so I'll know more from that--but not until the 15th when I see him next.

I take a liquid B vitamin and a sublingual B-12, plus a multiple which has some Bs in it. The multi is a tablet and I'm going to see if I can take the liquid one that Scott suggested in my ART session--maybe that will absorb better. Anna (BioSET lady) sells it now at her clinic so they can test it before I buy. I wouldn't care how much sleep I get if I felt rested and I USED to feel rested even on 5 hours a night, so this is definitely different, lol. I've never been a good sleeper, but I've always felt rested and had lots of energy, this is just very different.

In addition to those supplements, Anna has me on something called adaptocrine which is supposed to help the energy. She is also starting me on NT Factor as soon as they get it in...it's been on backorder forever. Scott also suggested Transfer Factor for the lyme, but that has colostrum in it so I have to check if that is okay to take with a casein intolerance.

[DingoGirl]

Morning, all.....

Just a quick note - - Donna, I am worried about you! I am just exhausted reading about your non-sleep schedule. I had insomnia for almost a decade, and I nearly went MAD. took all those herbal things and many vitamins and warm milk and on and on and on. finally in 1998 my wonderful doctor in Monterey just prescribed something for sleep. And I am wondering about that for you - have you looked into Ambien or Lunesta? they can sometimes be quite good even for short-term use....I suspect you won't like the idea, I did not either but came around to it when I was crying almost every day from lack of sleep. And I really DO support the idea of disability for you....you can work again and work part-time, but you have to wait a while to begin working. I went back to work too soon, and am now repaying the government for that......heinous. But your body needs so much more rest than it is getting to recover! Sleep is very important and so restorative.....I seriously don't know how you do it. (and others of you who are so sick and working full-time.)

Well, Grey's WAS really weird! I am not so sure about this new spinoff show - - those characters really annoyed me.....we will see.

I must get ready for work. And then a long, lonely weekend ahead, practically everyone I know will be out-of-town. Just the dingos and me, and lots of work for me to do around here. More heinosity!!!

Happy Friday, everyone.

[AndreaB]

Ok last night I ate peanut butter well actually I made cold seseme noodles(using peanut butter- its one of those foods I have beeen craving for so long)- it was really good and (fingers crossed) I think it actually went ok!!

Yay for a splurge that has agreed with you.......so far. Hope all continues to go well today.

I can't sleep even taking four 3mg melatonin tablets, 2-4 valerian root tablets, two 100mg 5-HTP tablets. Somehow I keep thinking that if I could just sleep when my body WANTS to sleep, I'd get enough. The work schedule I have now just doesn't let me do that.

Does the metals/lyme have anything to do with this? It would be nice if you could take some disability time to focus on treatments and getting your adrenals built back up.

What's particularly good about them is that fact that I don't have to make them!! That ALWAYS makes food taste better!

Isn't that the truth!

[AndreaB]

She had an exam last night at 7PM and is coming home today for the summer! YAY! Here's what I got her for her birthday (the blue one) ... Open Original Shared Link ... That's what Adam gets for being out of town when I went shopping!

Happy birthday to Morgan! She'll probable really like that!

The LLMD I saw is running a vitamin/mineral panel I think so I'll know more from that--but not until the 15th when I see him next.

Can't wait for your appointment and results.

I took sublinqual b12 saturday and got a raging headache. I have yet to try it again.

Not too thrilled with the idea of the chlorella again. My stomach was a little queasy all day and I was hungrier than normal.

I must get ready for work. And then a long, lonely weekend ahead, practically everyone I know will be out-of-town. Just the dingos and me, and lots of work for me to do around here. More heinosity!!!

Try to make the best of it. Sometimes a quiet weekend can do wonders.

[CarlaB]

Is that the test where you have to take samples over 3 days and put them in 7 little bottles with a disgusting-smelling solution? I had to do that a couple of years ago.

No, this one you need a stool sample, but it's not like Enterolab where the container is the same one you went in ... you have to transfer it to another container. YUCK! Then you have to have it to the lab within two hours.

[CarlaB]

colostrum in it so I have to check if that is okay to take with a casein intolerance.

I checked into that a while back and decided it did have casein. I don't think I got a clear answer though.

[nikki-uk]

Hey Nikki:

Your Queen is coming to the Colonies. Jamestown is about two hours away, but I am enjoying the news coverage.

I also think that she is going to visit Virginia Tech, where they have had such tragedies. Looking forward to the visit.

Lisa, I read it today in the paper!

Don't you just love all that 'pomp and ceremony'!!

Well blow me if I didn't forget to eat the peas!

Is this phrase now in the Rachelville Dictionary??

[Rachel--24]

Okay this is off the subject, but I have two salmon in the freezer I got from whole foods. They are from a alaska fishery and are whole foods brand. Should I eat them considering there might not be any mercury or just minimal. I need an idea on what to eat for lunch, My naturopath suggested I could eat salmon as long as it comes from a good source and not farmed. On the Happy Feet insert they list the best to the worst fish to eat and they put alaskan salmon as the best choice. So any suggestions would be great thank you.

LIsa

I dont eat any fish at all...I was told to just avoid it for now. I'm pretty sure like Andrea said all fish have some amount of mercury in it. Salmon is better than some other fish....and anythings better than tuna....but still they've all got some mercury.

[Rachel--24]

Bev,

Not sure what time you're appt. was at today but I'm thinking of you....hoping all is going well.

[jerseyangel]

Bev,

Not sure what time you're appt. was at today but I'm thinking of you....hoping all is going well.

Me too, Bev

[CarlaB]

Morgan is on her way home!

I jokingly told her not to look at the thread because we were talking about her birthday present since everyone was wishing her a happy birthday. She told me she checks in once in a while and almost did this morning! I had no idea she ever looked at it!

Bev, can't wait to hear about your appt.!!

[AndreaB]

Bev,

Not sure what time you're appt. was at today but I'm thinking of you....hoping all is going well.

Me too, Bev

Me three Bev.

[AndreaB]

I jokingly told her not to look at the thread because we were talking about her birthday present since everyone was wishing her a happy birthday. She told me she checks in once in a while and almost did this morning! I had no idea she ever looked at it!

Glad she didn't get in here this morning.

[dlp252]

Arggg...haven't been able to get into this website for most of the day, lol.

Just a quick note - - Donna, I am worried about you! I am just exhausted reading about your non-sleep schedule. I had insomnia for almost a decade, and I nearly went MAD. took all those herbal things and many vitamins and warm milk and on and on and on. finally in 1998 my wonderful doctor in Monterey just prescribed something for sleep. And I am wondering about that for you - have you looked into Ambien or Lunesta? they can sometimes be quite good even for short-term use....I suspect you won't like the idea, I did not either but came around to it when I was crying almost every day from lack of sleep. And I really DO support the idea of disability for you....you can work again and work part-time, but you have to wait a while to begin working. I went back to work too soon, and am now repaying the government for that......heinous. But your body needs so much more rest than it is getting to recover! Sleep is very important and so restorative.....I seriously don't know how you do it. (and others of you who are so sick and working full-time.)

Thanks dear one! I'm almost at the point where I'd consider ambien or lunesta. Over the counter stuff doesn't do anything at all, and stuff like benedryl just keeps me MORE awake, lol. If the natural stuff I'm taking isn't working I might as well just cut it all out. Years ago, one of my co-workers gave me one of her sleeping pills...I think it was ambien--I cut it in half and took one half and that seemed to work okay back then. We'll see what the lyme guy says.

Does the metals/lyme have anything to do with this? It would be nice if you could take some disability time to focus on treatments and getting your adrenals built back up.

If I had more time off available I'd use that for a few weeks, but I've been so sick over the last 2 years that I've got virtually none left. I get SIX weeks a year!!! It's all but gone. I have about 7 days left but I'm afraid to use it, lol.

I took sublinqual b12 saturday and got a raging headache. I have yet to try it again.

Not too thrilled with the idea of the chlorella again. My stomach was a little queasy all day and I was hungrier than normal.

Hum, I've been getting lots of headaches lately too. I used to NEVER get headaches.

I checked into that a while back and decided it did have casein. I don't think I got a clear answer though.

That's what I was afraid of.

Is this phrase now in the Rachelville Dictionary??

I do believe it's official now.

Not sure what time you're appt. was at today but I'm thinking of you....hoping all is going well.

Ditto and ditto.

[Mtndog]

Oh you guys :wub:

I need to learn how to quote multiple people in one post. It all started with the Food Channel as Porn for celiacs (SusieQ of course ) and got better from there. happy Birthday Morgan!

OK. The appointment went really well. Based on what I've researched, read on this thread etc. he knew his stuff. So it lasted 2 1/2 hours and I go back on Wed to have the blood drawn. He was glad that I am having the endo next Friday because he thinks it's probably a complex problem (inc. Lyme) AND my GI can take a tissue sample from my small intestine that can be analyzed for Lyme.

Based on my symptoms and what I told him and his very long, occasional humorous exam (including a LIME GREEN blood pressure cuff and his nurse noticing that my sy sweater, crocs and underwear all matched ) he thinks Lyme is a definite possibility. He did not want me to start antibiotics for at least a month because of the obvious shape my gut is in right now.

So, I'm taking Theralac probiotic 1x per day for the next thirty days to get my gut ready for potential antibiotic treatment. He said if my gut can't handle antibiotics, I can do an injectable one.

He explained EVERYTHING in great detail and much of it I at least recognized from reading here and other places. See you guys ROCK!!!!!

He also gave me this really interesting article "Bell's Palsy of the Gut and Other GI Manifestations of Lyme and Associated Diseases" which blew my mind because I was thinking I had motility issues and this article explains why I might!

I'm pretty tired (he's an hour away and it was a 2 1/2 hour appt so it took me like 5 hours total) but I feel much more optimistic about things then I did yesterday.

Thank you all so much!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[CarlaB]

Bev, I'm so glad your appt. went well. It feels good to finally be at the right doctor, doesn't it?

I take Theralac, it's very good. It still wasn't enough to take care of my GI issues, so they also started me on VSL#3, which I like, too. They have started me on injections because of my GI issues, but I still take a lot of orals. Morgan gets to learn Sunday from a friend of mine who's a nurse how to give me the injections. Adam is opposed to doing it. He said he will, but he doesn't want to. I don't think he likes needles ... he was funny when I was going to acupuncture and he was always scared when I got the epidural during labor.

I'm glad it went well, and I'll be anxious to hear your blood test results!

[dlp252]

Yay Bev!!! I'm so excited to hear how well your appointment went!!!

[jerseyangel]

Wow Bev--I'm so-o-o happy that you are finally getting some much awaited answers!

Gives me hope--I just pray that my new doctor is as up on all of this as yours is. A lot of our symptoms have mirrored each other's. Wow.

[NoGluGirl]

Dear Carla,

Happy late birthday to Morgan! That purse is nice! I am a high heels woman! The perfect high heel is skinny and 2 1/2 inches approximately in height. It can be a sandal or a closed-toed pump.

That is one classy spa! No wonder big names stay there! It is wonderful they actually are so considerate of the gluten issue. So many places do not care. Maybe we should have the Rachelville Reunion there!

Dear Donna,

If you can get disability, take it. You need it! I used to go to school on 3 hours of sleep, sometimes none at all. I do not know how I did that. Now, my sleep issues really cause difficulties. I have had difficulty staying on a sleep cycle since I was 17. Right now, my thyroid is messed up again, and I do not sleep much. I feel hyped up even when I am dead tired! That bump in my neck the size of a golfball is what tells me my thyroid is hyper again. It is just thryoid tissue, actually. I can thump it and make noise!

Dear Nikki,

We have added your phrase to the Rachelville Dictionary! It is official! Blow me if we didn't add another phrase! That is just too much fun to say! We love it!

Dear Susan,

You are not kidding, it really is porn on the Food Network for us! It is so beautiful! Food is like art, but edible! Cakes, cookies, and all kinds of other things are so amazing! You just cannot change the channel!

Dear Mia,

I am glad the sesame noodles set alright. I just racheled the last of my Stax, and hope to God I will not suffer for it. It is so unfair that everyone else gets to eat whatever they want and not worry about becoming violently ill from it. If you like sesame noodles, I think I know something else you would like. A popular street food for a snack is Dan-Dan Noodles in China. The sauce is made with chicken broth, peanut butter, scallions, chili oil, and bacon pieces. Instead of wheat noodles, we could just replace them with rice noodles. It would be so good!

Dear Rachel,

Well, I have been more careful about the condiments. It seems to help a little. Candida sucks! I hate yeast! If I have Lyme, I doubt I will be able to get rid of it until that is treated, though.

That brings me to another worry. My teeth are crumbling off by the day. If I do not do something, I am going to lose my teeth! I am scared!

Either way, I feel like I am screwed. If I have Lyme, I will probably have to get the root canals out, but extracting the teeth can cause cavitations. That is just as bad as far as germs are concerned. I know my grandfather will not pay to get them taken back out. However, I really do not feel I have a choice. Do you think maybe if I get Lava Crowns with composites I might be alright?

Dear Bev,

We are pulling for you! We know what it is like to be sick and scared! That is for sure! It sounds like your doctors are working with you. This is great! Stay optimistic, and I am sure good things will happen for you!

Dear Rinne,

I will certainly let you know when the site is up. I am busy trying to get some mail-outs ready for a few local places. They could be good clients. Some of the items I sell are very unusual. I can literally furnish you whole house or apartment! I have furniture, scented and decorative candles (many with lead-free wicks), toys, cookware, nesting baskets, collectible dolls, MP3 player cases, luggage, pajamas, you name it! There is not much I do not sell!

Dear Claire,

I love the big 80s hair! I do not think I could ever get my hair to do that again! My hair, even at shoulder-length is really heavy. It fell flat within an hour of it getting done when I tried that last! I have some cool things I can do with my hair now, though. Since it is long and black, there are some styles I can play with that I normally could not do.

Sincerely,

NoGluGirl

[AndreaB]

If I had more time off available I'd use that for a few weeks, but I've been so sick over the last 2 years that I've got virtually none left. I get SIX weeks a year!!! It's all but gone. I have about 7 days left but I'm afraid to use it, lol.

Hum, I've been getting lots of headaches lately too. I used to NEVER get headaches.

I don't blame you for wanting to take the last 7 days you have left. Have you checked into the possibility of getting disability? I don't even know how one goes about that.

So do you think your headaches are from the b12?

I chickened out on the chlorella today. Just didn't want a queasy stomach all day again. Talitha said she was burping up "spinach" taste all day. I'm thinking I should skip this with her....possibly me to and just do challenge/chelation next year. I wonder if Wild Oats will take stuff back that is opened, like Whole Foods does.

He explained EVERYTHING in great detail and much of it I at least recognized from reading here and other places. See you guys ROCK!!!!!

He also gave me this really interesting article "Bell's Palsy of the Gut and Other GI Manifestations of Lyme and Associated Diseases" which blew my mind because I was thinking I had motility issues and this article explains why I might!

So glad everything went to well!!! That article he gave you sounds interesting too.

I'm curious about the tissue sample and how they go about testing that for lyme. I would assume he thinks that's a problem area for you.

So excited for you and I'll be waiting anxiously for your results at the end of the month (or so).

Gives me hope--I just pray that my new doctor is as up on all of this as yours is. A lot of our symptoms have mirrored each other's. Wow.

I hope your appointment goes well too Patti. Do you think lyme is looking like more of a possibility.....or one more thing to rule in or out.

[jerseyangel]

Andrea--At this point, I just don't know.

I have to be extremely careful with my diet or I get sick. I get nausea, D, cramping, my anxiety kicks up, I get dead tired, also that head fullness/pressure that I think Rachel gets--or used to get....I hate going out except for very familiar places.

And I don't mean with just gluten, but with all the other stuff.

I take very good care of myself, my diet is very clean, I get enough rest, good water--I don't work, so I don't have the stress of having to be someplace every day.

It makes sense that there's something else possibly going on--or maybe I had a lot of damage from being undiagnosed for so long that this might just be it for me.

Either way, I'd like to know in case anything can be done.

Gosh--is anyone else as bored with me as I am