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Rachel--24

Omg...i Might Be On To Something

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Well, my appointment went well...the only bad part is that my medical history took so long the internist couldn't finish, lol. She had to use some of the chiropractor's time and still couldn't finish :lol: He (the chiropractor), knocked on the door two or three times, and she kept saying...we're in the home stretch, and still we couldn't finish, lol. She is REALLY thorough, asked lots of great questions about my symptoms, and gosh, didn't make me feel stupid or brush off ANY of my symptoms. The only test she did today was for adrenals...looks like that's a given in my case. My blood pressure, which was actually a bit high for me today at 118/60, dropped to 105ish when I stood up, which she said indicated something to do with adrenals. I'm sure more testing will follow. Then the chiropractor guy came in and he was great too...didn't act like anything was wrong (considering we took up a lot of his time, lol). He tested me thoroughly on strength of different joints/nerve function (or some such thing). He is ordering xrays for my spine and neck, something my old chiropractor never did. I definitely have an issue with the neck.

So next week I meet with the physical therapist and I think the nutritionist and will finish with the Internist who so far is going to order an EKG (gosh imagine that...problems with heart racing, chest pains and she's the first one to suggest an EKG)...and will probably run lots more tests...I forgot to take all my papers with the testing I've had done so far, so she'll look those over to see if she can see anything there. I did take my lovely souvenier photos of my colonoscopy and endoscopy, lol. :lol::lol: Doctors like that kind of thing don't they, lol.

With all that, I forgot to ask about supplementation for the mercury. :( There's Monday, lol.

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I wonder what the difference is between Bioset and Bioscan??

Hmmm...dunno Julie. :huh:

I had no clue about either one until a few days ago. :rolleyes:

For my test...the entire time I held a metal bar with something damp around it in one hand....it was connected to the computer I believe. The lady used the palm of my other hand to press another metal wand type thing into. Programmed into the computer was literally every body function, organ, enzymes, foods, toxins, molds...just an endless amount of stuff for them to see how my body was responding. In an hour and a half she probably pressed the wand into my palm hundreds of times....testing a huge amount of stuff.

Forgot to mention....mycotoxins and molds/yeasts....I reacted to ALL of them. I had suspected this was my problem with grains, peanuts, coconut, cantaloupe, etc...I react very obviously to all moldy foods. I was thinking this is why I react to rice. Rice mold was not on the test but wheat mold, corn mold and oat mold all on there and I reacted to all of them. As far as the metabolic evaluation part of the test the only category I did NOT react to was the Virus group...which includes vaccines. The group I reacted the MOST to was the molds/yeasts. I always figured this might be why peanut butter is disatrous for me.

In the category of acids I reacted to: Aspartic, Caffeic, gallic and citric.....the only two I didnt react to were uric and glutamic. If I'm not reacting to glutamic acid I probably dont have a problem with natural glutamates. I did react to MSG on the food additive part of the test...I reacted to EVERY food additive except baking powder and baking soda.

The computer would make a sound for each thing tested. If it was something I reacted to it made a certain sound so I could tell as she was going through all the testing what things I was reacting to and what things were fine.....cuz I could see the computer and I could hear the sounds. OMG....it was really BAD when we got to the food part of the test and I just listened to hundreds of "bad" beeps.

Out of 304 food and ingredients I reacted to ALL but 61...so I pretty much reacted to everything. Most of the items that were OK....are not really ok....such as tapioca. I know I react but its possible that I'm reacting to sulfites in the tapioca and not tapioca itself. Either way.....the majority of the 61 OK foods I cant eat for whatever reason. Yams were actually OK. :o Sweet potatoes were not ok. I always have eaten them together so will have to try yams and no sweet potatoes. Last time they hurt my stomach and got me bloated and all kinds of rumbling....it could be that the yams are feeding candida cuz they are so sweet and high carb?? :unsure:

Oh....I forgot to mention...I was positive for leaky gut on this test....it was one of the first things she checked. Ummmm...no real shocker there...even knowing this I think we were all pretty surprised at the amount of foods I reacted to.

When we got to the supplements there was some other gadget that was hooked up to the computer...she would take some of the supplement and put it in a bowl which was then placed onto the metal gadget....looked like a scale or something. Anyway....thats how the supplements were tested. The whole time I'm still holding the metal thing and shes still using her wand on my other palm.

The Lyme test was different. For that she brought out trays of glass vials...there was more tham 100 of them. Each vial was labeled with a different part of Lyme bacteria I assume...also all types of co-infections. I had to touch each vial and I reacted to alot of them.

She said Lyme is so complicated because there are over 300 different strains and we just cant identify all of them....there are ones that we dont even know about. There is also all the co-infections that can be present and each infection responds to different treatments. This is why its not really possible to eradicate it once its become a chronic infection.....but it CAN be managed.

As far as all my organs and body systems the most affected are my Lymph system, stomach, circulatory system, Endocrine, Vasomotor and Intengumentary <----not sure what that one is??? :unsure:

As far as my glands....only the adrenals showed up as being affected. There was also immune stuff that showed up and one enzyme that showed up. The test was very extensive....other groups tested were:

Amino acids, protein metabolism, Phenolics, Minerals, Vitamins, Sugar and fat metabolism (I flunked this one big time...I cannot metabolize either but I was already pretty much aware of it), Hormones, Metals, Bacteria, Virus, mycotoxins mold/yeasts and Acids.

Out of all these the only ones I didnt have any problems with were the viruses....I had problems with everything else. :(

So thats pretty much everything that went on with the Bioset test. Julie does it sound like what you had done?

I have decided I am going to get tested for lyme. I need to talk to you guys that know how to go about doing that. I have been reading each and every post along the way but all the info didn't stick in my brain :huh:

Julie, I'm glad you're gonna get tested. Actually I think alot of people here should get the test since we're all kind of having similar problems and now Tailz, me and Rinne all have confirmed Lyme Disease. :o

Someone posted a link to Igenix website but I dont have the link....maybe whoever posted it can repost it?? I think from the website you can find a Dr. in your area who uses that lab. I didnt have to find a Dr. cuz I lucked out in that mine only uses Igenix plus Igenix is right here where I live. I think from what I've read on the other posts is that you can call Igenix and find a Dr. who will order the test.

I think Rachel mentioned her doctor treating people from all over......did you Rachel or did someone else post about a different doctor that treated people from all over.

Did the bioset website list any doctors that do the testing?

The lady who did the Bioset testing treats people all over the world. She deals with MCS and intolerances. Shes not a Dr. though. My Dr. listed off her credentials to me and he said she's "almost" a Dr. After talking to her she definately has the knowledge....just not the "title".

You dont have to see a Dr. to get the Bioset test.

Does lyme love sugar too or is that just the candida that loves sugar.

I dont know for sure whether Lyme loves sugar but we all know that sugar brings down the immune system so in that way the Lyme could proably thrive with copious amounts of sugar. Just a guess. :unsure:

Candida definately feeds off of sugar.

As far as sugar in my case....the lady said if I eat sugar at all I'm gonna have problems regardless of Candida. I am not metabolizing sugar well at all she said. She said any sugar I eat (only fruits and the sugar in my ice cream) CANNOT be eaten on an empty stomach because I'm gonna have blood sugar problems....something about not metabolizing glucose at all. :unsure: I think thats what she said...I cant remember everything. :(

I've noticed this with my ice cream...I only eat it after I've eaten other stuff. It seems to be best after I eat alot of protein and some starches...not so good with just starches and very BAD with no food in me at all. I get dizzy, fast heartbeat, reflux, disoriented, brainfog, confusion, fatigue, etc. Its totally fine if I eat the right foods first though. The times I was reacting to ice cream it was because I was eating it alone on an empty stomach. I figured this one out but wasnt totally sure it had to do with sugar metabolism until the lady told me all this.

She didnt want me eating any dairy at all...I reacted to ALL dairy on the test. I told her that I hardly get symptoms from it compared to some of the other foods which make me feel really bad....like eggs. The main reason I keep eating ice cream is because I LIKE it but also to maintain my weight since I cant really eat grains or other foods that will put weight on me.

She said I can eat it for now since I'm pretty much reacting to everything anyway....she said no matter what I eat I'm gonna react to it so she just said to not overdue it and to only eat it on a full stomach. YAY for ICE CREAM. :D

She said to avoid grains because of mold but especially corn.....she said I'm gonna react to all corn because of the mold. I told her I do react to most corn (like chips) but am mostly ok with this one brand of organic corn kernals for popcorn. She said its probably less moldy than alot of other corn foods but still not good. Again....I dont have alot to choose from right now so just sticking to the few things that are not bothering me much. Later on when I can eat more foods she will probably want me to not eat ice cream. :(

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Donna,

You're appointment sound quite productive.

I'm so excited that a lot of you are starting to get answers and doctors to listen. :D

I will be looking forward to more posts from Donna, Rachel, Laura, Rinne as far as tests, regimen for getting better.

Miamia, I see you on once in awhile. Still like to hear how you are and if your getting anywhere with doctors and such.

Julie, I'm hoping you will be able to get in for some more testing and waiting for results for you too.

I hope I didn't miss anyone.

Patti.....are you going to try and get tested for lyme too or was that your hubby that had lyme.

Susan, what ever happened with your appointment with the new doctor. Have you had that yet?

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Laura,

Good for you for setting the Dr. straight. That makes me mad....the whole IBS business. :angry:

I got the same thing from one of the GI's I saw. Its a bunch of crap.

Like Patti pointed out though....you've got other stuff coming up. You'll see some Dr.'s that just arent very helpful...I think its unavoidable. You just gotta weed the bad ones out and move forward. You'll get to the bottom of it soon enough. :)

Donna,

You must have seen Dr. Carrie??

I like her....she is very thorough. I remeber her talking to me about adrenals and having me stand up. In my case there wasnt much of a change like she was expecting....I dont really get dizzy standing up fast or anything like that. My adrenal test wasnt normal but not horrible either.

I asked the Bioset lady if some people just never get better from all this. She said most everyone shes treated has gotten better but in some rare cases a persons adrenals are so completely wiped out they just cant recover. She said I'm young and nowhere near that point so dont have to worry about anything like that. I think that would only apply to someone whos WAY worse off than any of us are. I think we can all recover from whatever is bringing us down as long as we figure out what it is. She said its normal for the adrenals to be stressed under the circumstances. My immune system is never ever resting...its fighting when I'm sleeping, fighting when I'm awake....it never stops fighting and its reacting to a gazzilion things on top of dealing with candida and Lyme so theres no way the adrenals wouldnt be stressed out.

Where is Rinne....my partner in fighting the Lymies??? I miss her. :(

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Later on when I can eat more foods she will probably want me to not eat ice cream. :(

Wow Rachel. That test sounds really interesting. Too bad we don't qualify for something like that. I'd just be curious how everyone would test. That's probably one of the reasons I'm so interested in the intolerances.

Better enjoy your ice cream while you can. :D

I talked to my allergy doctor again today trying to get a handle on the citric acid stuff. He said it's processed so much that the protein from the fruit shouldn't be a problem. He said to go off all intolerances, even the low, low ones and retry them in 3-4 weeks (one at a time). Then we can see if we have a reaction and can note down what causes what reaction. He says we don't want the body to forget it at this point because then we won't know what causes what. For Talitha we need to give her an orange or orange juice and note any reactions and then after a week I presume give her her orange flavored vitamin and see if she has a reaction. All in all, it's going to be a long process because we all have so many different things we are dealing with. We will remain gluten and soy free for life, just a matter of determining if any of the other food groups need to be for life or how limited. I'm low dairy allergic even after being mostly off of it for 3 years so I will probably always need to be dairy free. Not too excited about the kids eating it either since the phosphorus throws our calcium absorption for a loop to begin with.

I think, for the most part, I'm up for the challenge. Aside from citric acid the next most difficult thing is garlic. That's a favorite seasoning of ours. Hoping that one is very short lived and we can resume our garlic happy seasoning again.

Where is Rinne....my partner in fighting the Lymies??? I miss her. :(

She had her party either tonight or tomorrow night to get ready for.

Hopefully she'll be on more next week.

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Do you think we can convince Scott to let tailZ back on the board (if she'd want to come)?

I dont know if Scott ever allows people who've been banned back on. Tailz is very passionate in her beliefs which isnt a bad thing...but if she tells everyone Lyme causes Celiac its gonna cause the same problems and I dont think he'll go for it. JMO. I dont know her so I have no idea if she would violate Scotts rules again or if she even wants to come back to the board. I guess if she wanted to she'd have to contact Scott and see how he feels about letting people back on.

She had her party either tonight or tomorrow night to get ready for.

Hopefully she'll be on more next week.

Oh yeah...forgot about the party...painting the ceiling and then not painting the ceiling. :lol:

Thanks for reminding me Andrea. :)

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RACHEL

I'm not in good shape tonight so forgive me.

you posted--

My adrenal test wasnt normal but not horrible either.

did you tell me how and where you were tested??

If so i'm sorry i can't remember '4 days of water 'D' is killing me.

chrio put me on some supplement for leaky gut today

i'll post later.

have to go lay down.

glad your 'show and tell' is over and it went well

you and renni..our Lymies..

love

judy

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you posted--

My adrenal test wasnt normal but not horrible either.

did you tell me how and where you were tested??

I got tested when I was going to that clinic back toward the beginning of the year. The HealthNow place where Donna is going now. The adrenal test was a saliva test....I just had to spit in some tubes at different times of the day and then send it to the lab.

Hope you feel better my friend. :)

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oh you guys.....this is just such great info. and such scientificness. what a turning point many of you have reached here, it's really exciting. Here's a thought...maybe Laura should fly out here to see these doctors?

I'm wondering about you, Miamia....could you have Lyme? have you been tested?

Donna....what a great doctor. I should go up there too....but I don't have all the aches and dietary sensitivities you guys have....but my mood swings are nowhere near normal. I am just certain about adrenal fatigue, though, so I would like to know the supplements/protocol followed for that....been reading up a little on it but not much.

Andrea, dear mother hen and keeper of the appointment calendar! Yes, I did have the appointment with gynecologist.....she did blood work - checked TSH box for thyfoid and I was mad, so I checked the T3 and T4 boxes MYSELF. :angry: hah. She said absolutely NO sugar :ph34r: or caffeine (I've cut back), she wants to put me on the PILL to regulate cycles/moods....some of you have been telling me this is such bad news....I"m hearing mixed reports and haven't decided what to do yet. She also gave me a supplement called Repliva, I think...as we were reading ingredients on the box, it said STARCH toward the end of the list....I told her I'd have to call the company and check on this. To which she replied, well, it's down there toward the bottom, it can't be that much. I gave her a withering stare, and said, I guess you don't know that even a modicum of gluten can make us Celiacs violently ill? (of course the donut fiasco earlier this week has me a bit confused :blink::lol: )....so I'm educating HER.

Rinne....what a week and she's having a PARTY.....do you think she painted the ceiling? :lol:

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Rinne....what a week and she's having a PARTY.....do you think she painted the ceiling? :lol:

Nope...I dont think she did it. I'm thinking shes busy celebrating her diagnosis....toasting all of her guests and not even giving the ceiling a second thought. ;)

Didnt she say she painted a wall yellow and then was satisfied with the painting project?? I think she just left it at that. :lol:

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oh you guys.....this is just such great info. and such scientificness. what a turning point many of you have reached here, it's really exciting. Here's a thought...maybe Laura should fly out here to see these doctors?

I'm wondering about you, Miamia....could you have Lyme? have you been tested?

Donna....what a great doctor. I should go up there too....but I don't have all the aches and dietary sensitivities you guys have....but my mood swings are nowhere near normal. I am just certain about adrenal fatigue, though, so I would like to know the supplements/protocol followed for that....been reading up a little on it but not much.

Andrea, dear mother hen and keeper of the appointment calendar! Yes, I did have the appointment with gynecologist.....she did blood work - checked TSH box for thyfoid and I was mad, so I checked the T3 and T4 boxes MYSELF. :angry: hah. She said absolutely NO sugar :ph34r: or caffeine (I've cut back), she wants to put me on the PILL to regulate cycles/moods....some of you have been telling me this is such bad news....I"m hearing mixed reports and haven't decided what to do yet. She also gave me a supplement called Repliva, I think...as we were reading ingredients on the box, it said STARCH toward the end of the list....I told her I'd have to call the company and check on this. To which she replied, well, it's down there toward the bottom, it can't be that much. I gave her a withering stare, and said, I guess you don't know that even a modicum of gluten can make us Celiacs violently ill? (of course the donut fiasco earlier this week has me a bit confused :blink::lol: )....so I'm educating HER.

Rinne....what a week and she's having a PARTY.....do you think she painted the ceiling? :lol:

I was tested for lyme and it was negative. I have to get this stool test redone it is for parasites and candida it was reallly bad last time I took it so now that its been a while my doc wants to retest me plus some addons the test has I have to look over it I picked it up today. My doctors really great in terms of not giving up on me and understandindg my situation ( it took me along time to find him!!! and many bad bad docs) so we both are concerned with once the test comes back what to about the results since almost all meds are too strong for me. But at least hopefully we will ahve some more info to work with.

Miamia

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Miamia,

Please keep us posted. I'm thinking you would benefit from the bioset as well. Maybe you could bring it up to your doctor.

Rachel, do you have to be refered for something like that?

Susan,

That's right. I remember you posting about the thyroid, just didn't realize it was with the new doctor.

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Laura,

I'm heading to California either next year or the year after. Depends on if whoever wants to meet up wants a toddler along. He'd be quite disruptive I'm sure.

If we set it for a weekend 2 years out then I would leave Seth home since he'd be weaned. I would like to meet anyone who can get out to California. I was thinking somewhere around Sacremento but the Cali girls would be better able to tell us a good place to meet. That would also give Patti and Carla time to plan to come out. I was also thinking that we could make it next year and my whole family could come down. That way Mitch would be with the kids and I could get together with you gals during the day.

The garlic is really throwing us as far as the diet. It was in the gluten free hot dogs tonight. We order almost all our meat from uswellnessmeats.com. Have to lay off those for a month (or more depending on what items we choose to test first).

I have always said I didn't belong on this thread (aside from supporting everyone) since I didn't have a major "problems" and wasn't real sick. I'm still not real sick but I guess I have more "problems" that I originally thought between my family. :lol::P

Laura,

I just saw your new picture. :P

Yes, silly Laura. :D

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OK you intolerance experts........

How do you determine whether something is a lifelong intolerance or whether you can safely eat the food again. The idea is to get your body to forget and I know that that can take 1-2 years for some if they can even eat a food again. We will work through those foods we want to reintroduce starting next month (after 3-4 weeks). But if we have a reaction do we shelf the food for a year and then reintroduce. What has been your guys' experience. I will ask my doctor too depending on what our results are after the reintroduction.

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We should all meet up and have a rachelville tailgate in this doctor's parking lot. (haha-but what would we EAT?!)

:lol::lol:

Ummmm....I'm pretty sure I would eat ice cream. :D

hmmmm...first, I'd eat lots of hamburger patties....then ice cream. ;)

Sounds perfect for tailgating....who needs beer anyway?? It would definately be hamburger and ice cream for me. :P

I actually CAN eat beef...my body says so and the test actually concurred! :o

I've been eating about a pound of beef almost everyday for the last 4 or 5 weeks! I know....its way overboard....but thats just how I do things. :ph34r:

Oh...Laura...I totally love the new pic. :)

Yeah....theres something really cool about how we've all bonded and in the midst of everything we are there for each other and even on the worst of days there is laughter and silliness around here. Way cool. :)

And now....all these new diagnoses...its so exciting whats going on the last few weeks....I feel like "OMG....we are ALL onto something!" :o

I'm really tired.....could possibly be slipping into delerium right this minute...I couldnt even meet up with The Dave tonight. My bed is calling me....its been a long and busy week.

Night everyone. :wub:

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1. Hi Judy---good to see you. I showed my mom your sweet post from last week. It made her cry. I think she is more grateful that I have this board than even I am! Its one thing when its you, its another when its your kid...I think it makes her feel better that I have other people who understand so I don't feel so strange

Ah, that was nice of you. Glad it was helpful. I appreciate your saying so.

I think i posted earlier that i was so happy about your assertivness in the dr apt if not, meant to. I was so touched by how 'astute' you are at your age I sent a link of your post to my dr after i saw it when i can home from seeing her today. She is a wonderful, compassionat dr who has a 7 year old son with she thought was gluten-free and now it's chrons and he 'DOESN'T EAT A THINK' IS ON A NASEL FEEDING TUBE. IT BREAKS HER HEART TO KEEP TAKING HIM TO CLUELESS 'TOP DRS' WHO DON'T KNOW NEAR WHAT SHE DOES ABOUT THESE CONDITIONS. ANYWAY, I THOUGHT SHE FIND YOUR POST REFRESHING FROM SOMEONE 25 YEARS OLD AND FIGHTING THE SAME FIGHTS SHE IS DOING..SHE CAN HEAL HER PATIENTS BUT NOT HER CHILD..HOW SAD IS THAT..SHE'S TRYING SO HARD ...

2. [/Andrea, it still amazes me on the path that our lives take us. I never thought I'd have a single health problem after Celiac. You never thought your whole fam would have these food issues. And yet, here we are, all plugging along.

yep this is what I thought too. Needless to say it's the tip of the ice berg. She got her son, hubby and me some "glutagenics" power for leaky gut.

Pray it helps as i'm tired of spending my life in the bathroom and cleaning up after myself the the :ph34r: cusred water "d" like 16 months ago..

go figure.

have a nice restful weekend and enjoy Eric.

Give your parents a hug for me.. they are really the best medicine for you now till the 'right dr. gets a clue'

nite

judy

Hi Rachel and Susan

just saw you were on.

2 of my favorit ladies.

rachel thanks for the answer don't think i can get that test here.. as looked into that place and non in PA only jersry i think

Susan..having a good nite?

judy

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I guess The Dave has won all of you over...he seems to be good at this. :P

You say it like it's a bad thing :ph34r::rolleyes:

LaruaJ - You look totally gangster yo! :lol:

Rinne - I am SO happy for you! It must be awesome to finally know what's going on and that it is treatable.... very happy!

Hi to everyone else too....sorry just a semi-drive by...

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I actually CAN eat beef...my body says so and the test actually concurred! :o

I've been eating about a pound of beef almost everyday for the last 4 or 5 weeks! I know....its way overboard....but thats just how I do things. :ph34r:

I'm not actually far behind you on consumption of foods. :lol: I can easily go through 1/2 pound-1 pound a day of meat and I love beef! Makes me wonder how I survived veganism for 3 years and vegetarianism for 5 or so before that. :ph34r: My body didn't like it....I'm intolerant to vegetable protiens. :blink:

No wonder we get along so well. :P We'd probably have a lot of fun when we meet up. You and I would be in one corner eating huge amounts of food. Of course I only eat 2 meals a day....does that count? Unless my hubby is home to make sure I eat in the morning....that means the weekends I either eat 2 meals and a snack or 3 meals.

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I returned tonight from Calgary, after spending the day in a 6 hour Hoffman Seminar on his Seven Levels of Healing.

LOL I couldn't stay away though I should probably be sleeping, there is work to do tomorrow in preparation for the party. Not so much though, I am getting very minimal, corn chips with black bean, corn and mango salsa and no I won't be eating any of it. Potato chips with a mayo, lime and chilpotle dip and no I can't have that either. :lol: Writing this down I'm thinking I should do one thing for moi. :ph34r::lol:

Before I forget sardines are low in mercury,.

Laura, I am so glad you are confident enough to stand up for yourself, that is what it takes. Tonight I have been thinking about a good friend of mine, three years ago she was like what I am now, getting a little too thin and a blooming illness just under the surface, she has recently been diagnosed with something that will require steroids and I know she will take them and I know she will get worse. I feel like the lions have taken her down, an incredible image Rachel, and though I reach for her she cannot see that she needs to fight. It feels to me that part of fighting for yourself is reaching out to others for support, finding a place to be believed. I am sorry but well people, as sympathetic as they can be, do not understand chronic illness.

I was in a rage tonight to think of how I have been treated in the past two years regarding my illness. I am a pretty strong person but I was reaching panic and it grieves me to think of others struggling who do not have the support that I have.

As I described it to Hoffman, I feel I wake to a deeply agitated body and that that agitation could be translated as anxiety if someone was to interpret their fear, which would be a natural reaction to the intensity of the agitation, as part of the sensation. I told the naturapath that the body I am waking into is not the body, regardless of any circumstances, I have ever woken into. I don't know if that makes it clear, I have spent years and years meditating and I know my body well.

Rachel, it sounds like we had much the same test though the name of the company on my print out says BioMeridian and the report is called a Meridian Balance index. I showed wide bands of green bands as inflammatory but at least not red. :ph34r: All organs show stress, as do lymphatics, endocrine system, although now that I look at it in fact my small intestine looks balanced and I have been saying my digestion is working better. Food groups gluten although she said I didn't react much to barley and rye and could perhaps eat them again but not wheat, no dairy, no nightshades, no Guar Bean, MSG and hydrolzyed anything. No rice. :( Also looked at Lyme and saw Lyme.

She said that the disease moved into my back once I strengthened my digestion and that the nature of illness is that it will continue to express itself in different ways in the body. She is a Naturapathic Doctor and Acupuncterist and part of the Hoffman team.

She will forward her results to the Nutritionist that I met with for an hour to discuss my diet. She said it was pretty good

but that I need to increase my protein, she will design a diet for me.

This is turning into a monster post, maybe I'll post in two parts. I am starting to seriously fade. I was up like three in the morning.

I think Hoffman is very interesting, I was impressed and I felt like I have found a doctor who is passionate about health. There were 15 of us in the seminar.

Night, love you all. R.

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Andrea, it still amazes me on the path that our lives take us. I never thought I'd have a single health problem after Celiac. You never thought your whole fam would have these food issues. And yet, here we are, all plugging along.

Being able to travel for fun is certainly a hope of mine. :) I cancelled going to PSU for the weekend and for a friend's wedding next weekend. Its just too much. I'm the matron of honor in my best friend (since I was 16-17) wedding on Nov 4th.....trying to save all my energy til then. I can't wait for it---can't wait to see her and share in her big day. In the midst of this chaos, its so great to have something so positive to look forward to.

That pic was taken by my husband this summer. He put his sunglasses and hat on me, and I provided the classic pose. Another moment of silliness in my life!

xoxo to you!

Laura-

god your situation at the nhi sounds so familar I can't tell you how many doctors offices Ive been in where they just tried to tell me it was ibs or something else - so many doctors just want to have a diagnosis that is case book that thye forget that we are individual. At one point they tried to convince me I just had really bad GERD and wanted me to go on8 nexium a day and I weighed only 90 pounds (I'm 5'4 ) That would be the equivelant of like 36 zantac a day!!!

While my doctor now is great I have been with him for a while and he is just as frustrated as I am but at least I don't feel like hes given up on me.

It sounds like your spirits are up though and thats great.

Miamia,

Please keep us posted. I'm thinking you would benefit from the bioset as well. Maybe you could bring it up to your doctor.

Rachel, do you have to be refered for something like that?

Susan,

That's right. I remember you posting about the thyroid, just didn't realize it was with the new doctor.

Andrea- I looked ito the bioset thing and I am going to ask my docotr about it when I talk to him next week. Sorry you have to deal with alll these new intolerances - but my god I feel like you are so organized and together your family is so lucky to have you!!!!

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Donna,

You must have seen Dr. Carrie??

I like her....she is very thorough. I remeber her talking to me about adrenals and having me stand up. In my case there wasnt much of a change like she was expecting....I dont really get dizzy standing up fast or anything like that. My adrenal test wasnt normal but not horrible either.

I asked the Bioset lady if some people just never get better from all this. She said most everyone shes treated has gotten better but in some rare cases a persons adrenals are so completely wiped out they just cant recover. She said I'm young and nowhere near that point so dont have to worry about anything like that. I think that would only apply to someone whos WAY worse off than any of us are. I think we can all recover from whatever is bringing us down as long as we figure out what it is. She said its normal for the adrenals to be stressed under the circumstances. My immune system is never ever resting...its fighting when I'm sleeping, fighting when I'm awake....it never stops fighting and its reacting to a gazzilion things on top of dealing with candida and Lyme so theres no way the adrenals wouldnt be stressed out.

Yep, Dr. Carrie and Dr. Cohen (Coen, Kohn, lol, not sure how to spell it). Both were great!

I am SOOOO interested in this BioSet lady...I may have you PM me her name, lol.

RACHEL

I'm not in good shape tonight so forgive me.

you posted--

My adrenal test wasnt normal but not horrible either.

did you tell me how and where you were tested??

If so i'm sorry i can't remember '4 days of water 'D' is killing me.

chrio put me on some supplement for leaky gut today

i'll post later.

have to go lay down.

glad your 'show and tell' is over and it went well

you and renni..our Lymies..

love

judy

Oh Judy, I'm so sorry! Wow, sounds like you are really having a tough time. I'm really hoping you feel better this morning!

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