Omg...i Might Be On To Something

[miamia]

wish someone was here ....am utterly miserable, it's too late to call any of my peeps and whine....need someone in another time zone to call (like Hawaii, I think they're 5 hours behind us)....am in pain, doubled over, bomb in stomach....is this from my binge? body aches and I feel like utter, abject crap. am so agitated.....massive headache.....cannot even get comfy in my bed, pulled neck muscle in a very bizarre place - monstrous pain.

I almost called my mom at 9-ish, just to cry and complain - - but she would freak out....um, because it has to be life-threatening for me to call her with physical pain.....(in 2001 drove my own self, doubled over and vomiting, to ER in Monterey....appendix removed 8 hours later...didn't call ANYONE until they'd finished ultrasound and were about to wheel me in...didn't want to be a WUSSY - - would have been FURIOUS and chagrined if it was flu or something stupid like that....did I mention, had been in so much pain the entire night, jacknife position in bed, softly weeping, calmly arose at 8, and thought to self, this amount of pain, I believe, will require a trip to the ER. So, took my shower (doubled over), shaved legs, light makeup...and went, fresh and clean, crying from pain, to hospital ) I was so excited, it was my first trip to hospital and only surgery - lots of good drugs and SO much fun.....(I am a major weirdo).....and there were complications and too much blood loss and blood pressure WAY too low, so I got to stay two nights.

okay. that's it. back to bed to feel sorry for self and hug tummy. have I just done so much damage to myself, from my two binges? my god, how long will this take to reverse and why did it take so long to hit? I know...questions we don't really have the answers to.....

*sniff* it's lonely late at night when your tummy hurts.

oh susan-

I am so sorry to hear how bad you are doing!!!! My god I wish I was there to give you a hug or at least sit by you- I am in the middle of a 3 day stool test and this morning I had to drink this really vial stuff I lay in bed after for an hour crying it made me so sick- think how we would have made such good company for eachother!!! I wish we lived closer!!

I hope you were able to get some sleep and wake up feeling a bit better.

Miamia

Oh, Susan!

I just got up and read your post. You poor thing, sweetie. I sure wish I could make it all better....we ALL would if we could. I would definitely have to guess that this is from your "binges" as you refer to them. It sounds pretty classic to me, just a delay in the symptoms. It might be that it damaged you and now your body cant process/absorb the food you are eating now, even though you are eating gluten-free products again---just a thought? (i.e., why it takes so long to get better initially, even though you go gluten free, is because your body hasn't healed. so even though you are eating gluten free, your body isn't working properly?)

I hope you got some sleep. Try taking a really hot bath---in my pre-Celiac days that was one of my only lifesavers.

HUGS to you and I'm sorry you were alone last night when you were sick. Hugs again.

xoxo

Laura-

hot bath still one of the only things that helps me maybe the only thing especially since when I get a reaction I usually get really bad chills and my body gets really tense. A hot bath- and the worst part is I love to fall asleep so I usually make sure I let someone know I am going in so they can check on me.

Miamia

[happygirl]

x

[Judyin Philly]

Susan

I'm sorry for the pain.

I'm sure it was the 'binge'

Maybe a good sign that it took so long to 'hit'

maybe it meant you'd healed more so took longer for it to hit.

I too wish i could have been there to help 'comfort you'

Guess we all get to the point where we think we're healing so well we start to add back things (not guluten with me but dairy) had some ice cream and really thought i could tollereated in again. but no!!

I'm praying that the new leaky gut supplement will help heal so i can get my energy and focus back.

feel like i lost 4 now 5 days of my life over ice cream..can't beat ourselfs up as it's a negative responce to positive teaching of how we must keep going and trying or we will be sick for the rest of our lives.

My problem is TODAY..the bone, muscle and extrem fatigue that i'm left with and then comes the depression do to the secondary reaction...SO...i TRY ALOT OF SELF TALK AND TRY TO CLIMB UP AND OUT OF DEPRESSION AGAIN..EMAIL ME IF YOU FEEL UP TO IT.

LOVE AND HUGS SUSAN

JUDY

[evie]

wish someone was here ....am utterly miserable, it's too late to call any of my peeps and whine....need someone in another time zone to call (like Hawaii, I think they're 5 hours behind us)....am in pain, doubled over, bomb in stomach....is this from my binge? body aches and I feel like utter, abject crap. am so agitated.....massive headache.....cannot even get comfy in my bed, pulled neck muscle in a very bizarre place - monstrous pain.

I almost called my mom at 9-ish, just to cry and complain - - but she would freak out....um, because it has to be life-threatening for me to call her with physical pain.....(in 2001 drove my own self, doubled over and vomiting, to ER in Monterey....appendix removed 8 hours later...didn't call ANYONE until they'd finished ultrasound and were about to wheel me in...didn't want to be a WUSSY - - would have been FURIOUS and chagrined if it was flu or something stupid like that....did I mention, had been in so much pain the entire night, jacknife position in bed, softly weeping, calmly arose at 8, and thought to self, this amount of pain, I believe, will require a trip to the ER. So, took my shower (doubled over), shaved legs, light makeup...and went, fresh and clean, crying from pain, to hospital ) I was so excited, it was my first trip to hospital and only surgery - lots of good drugs and SO much fun.....(I am a major weirdo).....and there were complications and too much blood loss and blood pressure WAY too low, so I got to stay two nights.

okay. that's it. back to bed to feel sorry for self and hug tummy. have I just done so much damage to myself, from my two binges? my god, how long will this take to reverse and why did it take so long to hit? I know...questions we don't really have the answers to.....

*sniff* it's lonely late at night when your tummy hurts.

So sorry Susan you are feeling so bad in the night!! So hope by now things are going a bit better at least. Have you been a 'slow reactor with food and allergies? That might be cause for the slow reaction to the "indiscretions". Keeping that 'poison' in your system may have magnified the reaction. Hope your body decides to let go so you can start to feel better soon. You sound like you are a very gutsy lady and strong.

Hang in there, this too will pass. Hugs and prayers, evie

[Daxin]

Wow....lots to catch up on.

Glad to read all the updates and find everyone is better. I've been off for a few days fending of some NASTY Gastro virus here in our house. Our son was out of commission for 6 days, and now our hospital public health oficer says our town has had a small outbreak of Norwalk virus. Hope the baby does not get it.

Anyway, hope eveyone is well.

Susan, hope you are feeling better today.

Gotta run. I hear some movement from the son's room.

[DingoGirl]

aw thanks so much girls. I awoke feeling better, stomach-wise....my neck is another story. Can't take a bath - - - I have a phobia of bathtubs and it's too crazy and heinous to explain it. I can STAND in one, a shower/bath, but can't sit in one......oh dear.

Mia - yes, we could have whined and moaned togethe, on opposite couches. Always nice to have someone here to listen to your whining!

Judy - dear girl I hope you feel better soon...you have had a time of it lately.

Hi Evie!! always so nice to see you.

Laura - good girl, going to church (I am not today as am heading over to mom's to get heating pad and staying in sweats today)....

kisses and hugs - -

[CarlaB]

Susan, I'm glad you are feeling a little better today. I'm sure it's from your binges ... sorry none of us were here last night.

[AndreaB]

I'm so sorry you had a rough night Susan. I tried to get on here around 11 and the site was down. HUGS to you, my friend. I'll pm you my number. I'm usually up until around 11:30.

Judy, Hope you get over you ice cream reaction soon.

Miamia, Hoping for some answers for you.

Evie, Good morning/afternoon to you. It's always good to see you.

Laura, See ya after church.

[Rachel--24]

As to anxiety, what I was trying to say is that the inflammation that Lyme causes in the body manifests as deep agitation and rises through the body into emotion, the emotion is intense and the intensity of it can lead to fear, the fear is natural and good, the fear is telling us, as is the pain, that our bodies are in distress, so the fear can lead to the feeling of anxiety but the origin is not anxiety it is inflammation. This is all happening beneath the radar of any conventional testing and so is misdiagnosed as an anxiety disorder. At this point it can be easy to be confused oneself because the agitation is subtle relative to the eventual crisis.

Does that make sense?

Rinne...it makes sense.

I totally missed what you were trying to say the first time....thanks for explaining.

I hope all went well with your party last night!!

Oh....I miss Robbin too...hope she's doing ok.

There is a lot to be learned and discovered. It seems like they only respond to things they have seen before, or know about, anything outside of that they tend to chalk it up to psychological problems

So true Julie. My new Dr. said the same thing. He said Dr.'s are limited...they are limited in what they know and what they can test for. He was speaking about mercury, Lyme, mold and those types of things....the stuff that Dr.'s wont be able to identify in their testing. He said people with these issues generally have perfect bloodwork and really no test looking for disease is gonna pick up on these conditions. Once the Dr. has done all the tests and they come back normal...they almost always chalk the patients symptoms up to something psychological.

I hope your hand is better today.

I'm off to church in a little bit but I just wanted to let you know you are all on my prayer list, that is going on the front of my fridge, so that I see it all the time.

That is very sweet Laura....hope you're feeling good today.

I've been feeling kind of blah the past few days. It was a rough week. I'm having reactions but I dont think its from food. If I get angry or have an outburst or something like that...I'll get a reaction. Its the same as if I got exposed to chemicals or ate something really bad. My test said I react to my own adrenaline.....I believe it because I've experienced it nearly every time I've gotten upset the past 4 years so I just always try to stay calm.

This last week I didnt get angry but I've had ups and downs emotionally from the results of the Bioset test and other stuff throughout the week. I'm feeling sad too and now I'm having reactions. I think I'm getting reactions from my own emotions. Does worry and sadness release adrenaline too???

I've been eating the same foods for weeks now....nothing new...except Fri and Sat. I had a couple handfuls of almonds. My test said they were ok. Only thing is they werent organic. I never eat *anything* thats not organic but I wasnt paying attention.

So its either the almonds or the ups and downs of my stressed out and emotional week.

Me and Dave went to Santa Cruz yesterday. It was a really nice day out and we walked on the beach....it made me feel better. I love the beach....wish I'd had a camera.....love taking pictures at the beach. We saw 2 big starfish....really pretty ones. I wanted to pick them up but Dave said to leave them alone....in their habitat.

I wasnt gonna take them home or anything....just wanted to look at them.

hot bath still one of the only things that helps me maybe the only thing especially since when I get a reaction I usually get really bad chills and my body gets really tense. A hot bath- and the worst part is I love to fall asleep so I usually make sure I let someone know I am going in so they can check on me.

Miamia

Count me in for baths!! I take baths everyday....LOVE baths. When I get reactions its the first thing that makes me feel better.....I get chills from reactions too and the baths help alot. Back when I was real sick I used to take up to 4 baths a day!! Now I just take baths to get clean and relax...or to warm up after eating a pint of ice cream. Fortunately I dont get too many reactions that require baths nowadays.

Susan,

Sorry nobody was on last night.

That sucks about the delayed reaction....yup I definately think its from the binge. Weird how it takes so long to "hit" though. I dont get that.

I'm glad you're feeling better today though.

Take it easy.....stay in sweats....rest your tummy and have a great day!

[Fiddle-Faddle]

Susan, I hope you're feeling better today. I am giving up on being able to figure out what causes reactions. I had major stomach bloating last night and I've made everything that's gone in my mouth all week--I have no idea what could have caused it.

Maybe it was the phase of the moon, or something.

Last thought--when it hurts, remember to relax your abdominal muscles and BREATHE. (I tend to tighten them and hold my breath, which makes everything 100 times worse.)

[DingoGirl]

Did I already post today? can't even remember. Demential. Feeling much better, except for wrenched neck, but that's okay.

Alison - you're right - the analyzing can help us SOMEWHAT, but there are mysteries to this disease. I was wondering if I was reacting to the regular Trader Joe's Columbus lunchmeat that I ALWAYS eat - had to run adn check the label of new package. No change.....but one never knows.

Rachel - I think you've had a really emotional time....the sudden elation of getting a diagnosis....wow. That would create a surge of adrenalin in itself, and, you might just be crashing down a little. Um, or, could you be PMS'ing? I get a little nuts the few days before. And heck, we're women, we do go through ups and downs of mysterious origin. SO glad you went to the beach....I love Santa Cruz. R has a house there...*sigh* Miss that place, we were there a lot.

so....take it easy, stay in your sweats and don't expect too much of yourself today. call The Dave and do something fun, maybe a movie or something? let yourself cry if you feel like it.

JULIE - been meaning to ask how your hand is?? hope you're better.

hugs -

[AndreaB]

Rachel,

I would think it is the combination of everything this week that has you reacting. If you've been eating the same foods except the almonds. You've been through a lot and major chemicals probably put you in a position that it wouldn't take much to go over the edge in a reaction.

[Rachel--24]

so....take it easy, stay in your sweats and don't expect too much of yourself today. call The Dave and do something fun, maybe a movie or something? let yourself cry if you feel like it.

Thanks Susan

I cant blame it on pms...not this time anyway.

Could still be hormonal though...who knows??

Yeah....Santa Cruz is great...especially on a day like yesterday. I just wish I had felt better....had a massive headache. We went to Natural Bridges....I like it there cuz its not as crowded as the boardwalk but yesterday (being a nice day) was still pretty crowded. I wanted to go to TOGO'S real bad. Holy cow...I miss Togo's like crazy. I worked there as a teenager....I've probably had thousands of sandwiches but just like my McDonalds bigmacs...I could never get enough.

I had a few visitors stop by my work the last couple weeks. One was a guy I had dated back when I was like 19-20. He had heard I'd been sick and got dx'd w/ Lyme so stopped by to see how I was doing. Dang....word travels fast huh? Anyways, he said "You'll be better in no time....and back to eating BigMacs again!" I started laughing....I said "How did you know I eat BigMacs....they're like my favorite!!" He said even way back when I was a teenager I'd tell everyone at work (we worked swingshift..till like 2 in the morning) "McDonalds is still open! I need to go get a BigMac...I'll be back." He said I did that ALL the time. I guess I've been crazy for BigMacs all my life. Wonder how many I've had?

Maybe I had one too many??

Oh...the Dave is working today. I'm in Manteca and the yardwork is calling me. I should do it...its really nice out and the sun/fresh air will do me good.

[diamondheart]

Hello All,

As usual, trying to catch up with all the traffic here. I'm glad to hear Rachel and Rinne are finding the causes of their illnesses. Interesting discussions on Lyme disease. When I was sick a few years ago and it was taking forever for the doctors to figure out what I had, Lyme disease was one of the things I was wondering about. I had had this rash, but that's also a symptom of West Nile Virus. I ended up testing positive for West Nile Virus, meaning I had had it at one time, but that couldn't have been making me sick currently since it was January and there aren't any mosquitos around then . After 3 blood tests looking for various viruses I had never heard of, I was finally diagnosed with mono. Apparently, the symptoms for mono are similar to WNV. A month before the mono, I had the flu and a sinus infection that I took antibiotics for. My theory is that the WNV trashed my immune system, and I got a bunch of other stuff that year. We had some people get very sick from WNV in Colorado. One guy at work was in a coma from it.

I did look up the number of cases of reported Lyme disease in Colorado, and it's close to zitch. So, I guess I'm not suspecting Lyme disease as one of my issues right now, but I wouldn't entirely rule it out either. Anybody ever heard of anyone getting Lyme disease in Colorado? Ticks aren't too bad here, but I have had them since I'm outdoors quite a bit.

The latest for me is being diagnosed with an overgrowth of bacteria; Klebisella/Enterobacter/Serratia group (they lump them all at this lab), and alpha hemolytic Streptococcus. I also had a low total intestinal SIgA (<69, normal is 400-880 ). So now I'm wondering if I'm IgA deficient. My acupuncturist said that it was low from fighting off the bad bacteria for so long. He also said antibiotics are pretty worthless for the bacterial overgrowth, so I'm taking an herb called Indian goldthread to deal with it, as well as boosting my adrenals, which are also worn out from fighting the bacteria (sound familiar?). I've got about 4 months minimum to deal with this thing.

Rachel - You have a lot on your plate right now! I'm glad you are working with a doctor who can help you. My new acupuncturist has a similar sounding machine, called a Vega machine from Germany. He used it to figure out which Chinese herbs to give to me for my treatment. I hope your doc's giving you something to support your adrenals as well. I know it's a drag when there are many foods you can't eat, but I have to agree with her about the ice cream. Not only is sugar death on burnt out adrenals, but I think dairy is not healthy for anyone who has fibroids (you haven't mentioned anything about the fibroid in a while). I like my treats too. I have this great recipe for chocolate mousee that is made with dates, stevia, chocolate, and avocados, of all things. It's from the book Open Original Shared Link (lots of beef recipes in there & few grains too). Also, I like to have simple sweet stuff, like applesauce with cinnamon for a treat. I binged on a box of Pamela's double chocolate cookies a week ago, and I got so sick! My body just power booted it out me (read watery D, cramps, dizziness, heart racing, the whole 9 yards), which is probably the best thing that could have happened. Meditation has really helped me too, but I'm really bad at the discipline of doing it everyday .

Claire

[DingoGirl]

Welcome, Clare, and it sounds like you have found the right place! You sound like so many and are obviously so well-informed! Great to have you.

This is just a drive-by, quick question, can you tell me why sugar is so hard on adrenals/low adrenals? I can't seem to give it up currently. I don't eat much of it at all, have switched to fructose for my (decaf) coffee, but there are still indulgences, almost daily. Would love to hear about this - - guess I need more convincing.

gotta go -

blessings.

[rinne]

I did look up the number of cases of reported Lyme disease in Colorado, and it's close to zitch. So, I guess I'm not suspecting Lyme disease as one of my issues right now, but I wouldn't entirely rule it out either. Anybody ever heard of anyone getting Lyme disease in Colorado? Ticks aren't too bad here, but I have had them since I'm outdoors quite a bit.

I was in Colorado when I was bitten and had the rash, two people who were staying where I was staying two years before were diagnosed with Lyme. It is there, go to Lymenet or Lyme Strategies and follow the links.

And welcome Claire, I'm glad you jumped into Rachelville.

[CarlaB]

Rachel, I love Big Macs, too. I would love to go Finland and get one (or ten or twenty!).

Claire, welcome.

Susan, the sugar stimulates the adrenals like caffeine does. When they're not working right, we tend to want to use exercise, caffeine, sugar and alcohol to stimulate them. Eventually they get fatigued. Put that on top of stress and chronic illness and they get very fatigued. For me, I took care of the stress and gluten intolerance, but now my adrenals need rest so they can go back to where they were before when I was vibrant and energetic. At first getting off sugar is very hard. After two months without all the bad stuff, I am starting to feel what it's like to have normal adrenal function and I'm realizing that it's the first time in my life that I've had it!

[AndreaB]

Welcome Claire!

I see you Patti!

[Rachel--24]

Welcome Claire.

I dont know about my fibroid....do they go away on their own? I never had any symptoms (that I'm aware of) from the fibroid and I dont get any now so I guess I kinda forgot about that little fibroid.

The little fibroid got lost in the mess of all the other stuff going on.

My chief complaint now is chemical sensitivities....thats the main thing I wanna get better from. All of my head symptoms come from the reactions to chemicals. Since I eliminated even more foods the last couple months...mainly all rice products, yams, sweet potato, a few veggies and dried fruits....I've had NO bloating and hardly ever a sound from my tummy and NO weight loss! Also alot less fluid retention.

This is the longest I've went with no bloating, ovary pain (which might have been intestinal pain) or stomach aches. I just cant see giving up the ice cream when it seems like I'm doing so well with it....as strange as it seems.

The Bioset lady said she expected that I'd get bloated from the ice cream for sure....but I dont...not at all. She said the bloating would indicate I'm feeding the candida...she said to pay attention and stop eating it if I get bloated. My stomach is fine with the ice cream though. I know....its kind of crazy....and I'm still eating a pint a day.

So ALOT of my symptoms have improved since eliminating some stuff and adding in ice cream...but no improvement for chemical sensitivities.

I went off sugar completely for 4 months last year. It was hardcore...no cheating. I had NO form of sugar....no carbs or no fruit even. I cant say that during those 4 months I was doing any better than I'm doing the last month eating ice cream everyday. The main difference is that I was WAY too thin back then and right now I am a much healthier weight. This is what I discussed with the Bioset lady and she agreed that since I have so many intolerances and ice cream isnt causing noticeable reactions....until I can eat more healthier foods w/out reacting I just have to eat what I can and ice cream will help keep my weight on right now. Even when I'm not totally in the mood for the ice cream (yes...it does happen occassionally ) I still eat it so that I can maintain my weight.

I dunno....maybe God just felt sorry for me so he gave me ice cream....so I could at least survive???

I did look up the number of cases of reported Lyme disease in Colorado, and it's close to zitch. So, I guess I'm not suspecting Lyme disease as one of my issues right now, but I wouldn't entirely rule it out either. Anybody ever heard of anyone getting Lyme disease in Colorado? Ticks aren't too bad here, but I have had them since I'm outdoors quite a bit.

I think Lyme is everywhere. The main reason I kinda gave up on Lyme is that #1...no doctor would test me for it and #2....they were telling me noone gets Lyme here in CA. I tried to look up info. on Lyme cases in CA but couldnt find a whole lot. Obviously people get Lyme in CA though because I got it....I think I got it in Tahoe and I wasnt even camping or hiking at the time. Just having a relaxing vacation.

Its still kind of hard for me to believe but I have the symptoms to remind me that its there. I would still find it hard to believe even with the positive test results if not for the fact that I've had these symptoms non-stop for 4 years now....thats what convinces me the most that this is real.

Hi Mango!!!!

[AndreaB]

I dunno....maybe God just felt sorry for me so he gave me ice cream....so I could at least survive???

This gave me a smile.

You've got mail.

[Rachel--24]

You've got mail.

Andrea....YES!!!

Thats what it looks like!!! Its really beautiful in person though....actually bigger than any of the real trees I've ever had. It's super full and touches the ceiling. I will scan and send you a pic if I can find one.

[jerseyangel]

Will post more tomorrow--I'm about wiped out tonight and it's almost time for Desparate Housewives

Laura--I love the new picture of you and your mom

Nite, all.

[happygirl]

x

[Mango04]

Hi Mango!!!!

Hi peeps Sorry I haven't been posting much, but I've been reading (well, trying to keep up). I've been thinking about you all. I'm fascinated by the scientificness and SO excited about the progress being made. (so so so excited...sorry I just can't come up with a more meaningful or appropriate response )

I'm starting to wonder if I should start eating beef

Does anyone else think newbie lurkers might come to this thread and wonder what the heck we're actually doing when we talk about these quick semi drive-bys? lol I think we should bring back spinach...

I just ate some dark chocolate and the caffine and sugar has me all loopy, so I should really stop posting now. Maybe I'll go award some people in the gold star thread hehe

Susan - I hope you feel better sooon. Same to everyone else who's not feeling great today Byee for now

[Rachel--24]

Does anyone else think newbie lurkers might come to this thread and wonder what the heck we're actually doing when we talk about these quick semi drive-bys? lol I think we should bring back spinach...

SPINACH....