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Rachel--24

Omg...i Might Be On To Something

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Laura- Glad you got "fully looked over" with the CT scant. At least it will rule things out even if it shows nothing. I had one too (along with tests for everything in the book- but at least now I know I have no hepatitis,HIV or anything else).

Julie- I did alllergy testing and was allergic to nothing. NOTHING? :blink: NOT EVEN MOLD which clearly makes me sick. The allergist i saw was great in that he acknowledged that allergy testing is limited. Just because you're not allergic to something doesn't mean it doesn't make you feel bad.

I've been having trouble keeping up with the thread so hi to everyone else :wub::wub:

I've been having a hard time with mood swings and sleep (super irritable) but hopefully getting it worked out. I'm grumpy and frumpy. :(:P

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Ditto on the emotional rollercoaster and the drama, lol. I marched into my manager's office today and said basically that I don't know why she wanted my opinion because it didn't make a bit of difference. Got a little fed up, lol. She was looking at me like --> :blink:

:lol:

Laura, glad you are home! Sounds like this appointment went much better than the last, so I'm anxious to hear when you are up to it!

My nutritionist appointment went well. She says "so it says you were referred by Rachel?", I say "yes", she says "do you have a last name?", I say "no, she's a friend on the Internet, but she said I could tell you she is the one with the baseball cap and is really messed up", she says "Okay, I know exactly who that is". LOL! (pssst, then she clarified by saying that it was the baseball cap that did it, lol).

Anyway, I'm going to do the spit test for adrenals...brought that home with me, a stool test for the parasites and other little buggers and a 10-day elimination diet...really basically will just be eating meats, complex carb, fats and veggies. The carb level will be low I think. No chocolate! None. No corn...none...okay here's where that corn list will come in handy, lol. No eggs, no soy...basically NOTHING that I've been eating, the last month! I haven't read the literatureage she sent home yet, but those are the things she went over with me, lol.

I also have to read all the instructions for the spit and stool tests... Oh, and she also gave me the script to have an EKG done...but I have to call me GP for that and that won't be until next week at least, cuz there's just no more place for an appointment this week, lol. It was very interesting talking to her and she really feels strongly she can help me. She even thinks the leg itching thing can be addressed!

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I know Grumpy and Frumpy, very good friends of mine. :lol: I hope you feel better.

Rinne....I never heard of it. When will you be getting results back??

I fell a little behind....just read about your party. I'm sorry noone was supportive or "there" for you that night. :(

I dont know about you but the illness makes me more aware of how people treat each other.....makes me more sensitive to it as well. :(

I am thinking I am going to go back out to Calgary in about a month and meet with him for a full report, some of the tests they send away take that long to come back.

The test does look interesting. Here's is a little more information about it. If I remember correctly he said that this test is used in hospitals there as part of standard diagnostics.

The BTA measures the acid-base balance, oxidative stress, and mineralization of your body fluids (blood, saliva and urine). This information is a great indicator of liver function, kidney function, digestive ability and lymph system function. Understanding the type of environment in your body helps the doctor determine which microorganisms would be most likely to flourish in your body. It is then possible to change your internal environment to discourage the unwanted organisms.

'Can'tEvenEatRice!', me either, or gluten, dairy or nightshades. I really liked rice, the gluten was more convenience than affection. :(

I have read that antibiotics work for about 70% of the population for Lyme so it is possible that you are one of the 30%. Have you checked out Lyme Strategies? Lymenet? I've seen discussions on these sites about pregnancy and children, I wish I could be more helpful. I know it must be very scary to worry about your child and Lyme.

Julie, I wish I could send you off to a clinic like the one I found. I think that once we are really sick we need caregivers who understand the importance of a comprehensive view and treatment plan.

I joined this site in early May with gluten intolerance and within a month I understood I needed to give up dairy too. For a brief while I seemed to be better but then the pain started up again and it just didn't make sense to me that foods I had never had a problem with suddenly seemed to be causing me pain. I could not make myself believe that Celiac was doing this, it was this that led me to further research and the realization that my symptoms fit Lyme. It would have been a mistake for me to simply pursue food intolerances.

The other thing about the saliva test was that they wanted it after fasting for 12 hours and it had to be warm.

YUK. Warm spit. :lol:

Rachel, I am sure that I am more sensitive and in past years would have taken my satisfaction from simply creating the party for everyone to enjoy. I am grateful to be more honest with myself now about what I really need.

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My nutritionist appointment went well. She says "so it says you were referred by Rachel?", I say "yes", she says "do you have a last name?", I say "no, she's a friend on the Internet, but she said I could tell you she is the one with the baseball cap and is really messed up", she says "Okay, I know exactly who that is". LOL! (pssst, then she clarified by saying that it was the baseball cap that did it, lol).

:lol:

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Andrea,

I scheduled my appt....its tomorrow at 4. I'm not sure what she'll be able to do tomorrow....its only been a week since my first appt.

I'll be interested in how these appointments play out to get you started on the rest of your treatments.

HUGS :wub:

We'll get through this. :)

I've been having trouble keeping up with the thread so hi to everyone else :wub::wub:

I've been having a hard time with mood swings and sleep (super irritable) but hopefully getting it worked out. I'm grumpy and frumpy. :(:P

I'm sorry. :( Hope you get to the bottom of grumpy and frumpy soon.

Ditto on the emotional rollercoaster and the drama, lol. I marched into my manager's office today and said basically that I don't know why she wanted my opinion because it didn't make a bit of difference. Got a little fed up, lol. She was looking at me like --> :blink:

:lol:

Donna! :ph34r:

Your appointment sounds productive. Looking forward to hearing about your first session with amalgam removal also.

Have you got food to get you through this that you can eat? Stuff put away/locked up that you can't?

Rinne,

Hope you're doing better today. Is there anything they have you working on before you get your official diagnosis?

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My nutritionist appointment went well. She says "so it says you were referred by Rachel?", I say "yes", she says "do you have a last name?", I say "no, she's a friend on the Internet, but she said I could tell you she is the one with the baseball cap and is really messed up", she says "Okay, I know exactly who that is". LOL! (pssst, then she clarified by saying that it was the baseball cap that did it, lol).

:lol::lol:

Donna,

Thats funny! I wonder if she really even knew me though. I never saw the nutritionist. :huh:

I only saw Dr. Rick, his wife (only twice) and Dr. Carrie. Other then those 3 I only know the 2 ladies at the front desk. I dont have any idea who the nutritionist lady is... :lol:

It sounds like your taking some of the same tests I took...it'll be interesting to see how they come back.

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Wow Laura.....what a day you had! Definately get a good night sleep. Its sounds like they are doing alot in terms of testing....I hope something comes back. I dont know anything about the eos but hopefully you'll find out if thats what it is soon enough. Sucks about having to eat the "bad" foods though...we'll do just about anything for a diagnosis wont we.... Well....I dont think any of us would go back on gluten but just about anything else!

I've been there with the bad blooddraws and needle problems before.....many many times...I know about the tears and the frusterations. :(

Yeah....we've been through sooooo much...ya think they could just get the needle in right!

I'm a baby most of the time too. :rolleyes:

They have trouble with my veins so its almost like a treat when things go smooth. Last time Dave had to hold my hand and talk to me through the whole ordeal. It was hurting and the nurse was only getting drips out of me....she was just gonna leave it like that and there was like 2 or 3 vials to fill! :blink:

Get some rest and we'll see you tomorrow. :)

Oh....wasnt it the weirdest feeling when they injected the dye?? I've had it a few times and it always feels like I wet myself. :ph34r:

The radiologist had warned me about that the first time but even with the warning.....I still felt like I was leaving with wet jeans. Good thing it wasnt for real! :lol:

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Ditto on the emotional rollercoaster and the drama, lol. I marched into my manager's office today and said basically that I don't know why she wanted my opinion because it didn't make a bit of difference. Got a little fed up, lol. She was looking at me like --> :blink:

:lol:

Laura, glad you are home! Sounds like this appointment went much better than the last, so I'm anxious to hear when you are up to it!

My nutritionist appointment went well. She says "so it says you were referred by Rachel?", I say "yes", she says "do you have a last name?", I say "no, she's a friend on the Internet, but she said I could tell you she is the one with the baseball cap and is really messed up", she says "Okay, I know exactly who that is". LOL! (pssst, then she clarified by saying that it was the baseball cap that did it, lol).

Anyway, I'm going to do the spit test for adrenals...brought that home with me, a stool test for the parasites and other little buggers and a 10-day elimination diet...really basically will just be eating meats, complex carb, fats and veggies. The carb level will be low I think. No chocolate! None. No corn...none...okay here's where that corn list will come in handy, lol. No eggs, no soy...basically NOTHING that I've been eating, the last month! I haven't read the literatureage she sent home yet, but those are the things she went over with me, lol.

I also have to read all the instructions for the spit and stool tests... Oh, and she also gave me the script to have an EKG done...but I have to call me GP for that and that won't be until next week at least, cuz there's just no more place for an appointment this week, lol. It was very interesting talking to her and she really feels strongly she can help me. She even thinks the leg itching thing can be addressed!

Donna-

with you on the emotional roller coaster. I just sent in a stool test today for yeast parasites and other buggers. Which one are you doing? I have done a spit test for adrenals - it was an all day thing very annoying is that what you have to do?

Good luck with your elimination diet and hopefully next week will be more clam for you

miamia

I know Grumpy and Frumpy, very good friends of mine. :lol: I hope you feel better.

I am thinking I am going to go back out to Calgary in about a month and meet with him for a full report, some of the tests they send away take that long to come back.

The test does look interesting. Here's is a little more information about it. If I remember correctly he said that this test is used in hospitals there as part of standard diagnostics.

'Can'tEvenEatRice!', me either, or gluten, dairy or nightshades. I really liked rice, the gluten was more convenience than affection. :(

I have read that antibiotics work for about 70% of the population for Lyme so it is possible that you are one of the 30%. Have you checked out Lyme Strategies? Lymenet? I've seen discussions on these sites about pregnancy and children, I wish I could be more helpful. I know it must be very scary to worry about your child and Lyme.

Julie, I wish I could send you off to a clinic like the one I found. I think that once we are really sick we need caregivers who understand the importance of a comprehensive view and treatment plan.

I joined this site in early May with gluten intolerance and within a month I understood I needed to give up dairy too. For a brief while I seemed to be better but then the pain started up again and it just didn't make sense to me that foods I had never had a problem with suddenly seemed to be causing me pain. I could not make myself believe that Celiac was doing this, it was this that led me to further research and the realization that my symptoms fit Lyme. It would have been a mistake for me to simply pursue food intolerances.

The other thing about the saliva test was that they wanted it after fasting for 12 hours and it had to be warm.

YUK. Warm spit. :lol:

Rachel, I am sure that I am more sensitive and in past years would have taken my satisfaction from simply creating the party for everyone to enjoy. I am grateful to be more honest with myself now about what I really need.

Rinne what is this test called? I am not sure you may have already posted it

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Laura, wow, what a trying day for you. Glad you made it through it all :) I'll keep my fingers crossed that your test results will yield some answers for you, followed by a plan of attack to get better.

Thanks all who weighed in on the allergy testing. I think I pretty much knew deep down what my decision was going to be, but it was nice to bounce it off of you all and get your perspectives and insight. I hate to put so much money out only to get back inconclusive results, and allergies seem to be so touchy with me, always changing and transforming- I guess that is the beast of leaky gut :lol: I think for now I will just sit tight in that area and maybe go for the celiac gene test to start.

Donna, glad your appt went well today. Tomorrow is the big day isn't it? You will definitely be in my thoughts :)

Beverly, sorry you are frumpy and grumpy, and no sleep? That isn't good. Is it the stress of the move and adjusting to the new place? You've been through so much this year, one thing after another. I would be swinging from one end of the emotional spectrum to the other too. Take good care of yourself :)

rinne, sorry the party had its stressful moments. Did I read correctly, even sweetie wasn't on his best behavior??? :o Not your sweetie :unsure: I will have to look into a clinic in my area that might deal with Lyme and have a more all encompassing healing plan. I just have to figure out what I want to do. I am committed to better health, it's just been so long for me, and I've been to so many people trying to get help I dont have a lot of trust anymore. Thank you for all of your support :)

Hi Dave, you are just posting like an old pro here in the OMG thread :lol: Good to have you around, and thanks for all of the support you give all us gals.

Welcome Cant Even Eat Rice. I don't know much about lyme, but Rachel and rinne do and can probaly answer your questions and send you in the right direction :)

Have a great night everyone!!!

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Laura,

I'm sorry you had to go through that with the inexperienced nurse. Do people think we actually enjoy being pricked? I'm glad your mom was there to help out. Sounds like she's a great person to have at appointments.

Overall your appointment sounds productive (and exhausting even for those in good health).

Hope you get a good nights sleep. Post when you can tomorrow.

Julie, my friend! :D I've missed you.

I'm hoping you pursue further testing with lyme? Didn't you say you had tested positive or borderline for that or was it someone else (and it was dismissed)?

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thanks, rachel. check out the website when you have a free minute (ha!)....it is unbelievable. I'll post more links later on, too. xoxo

Donna---thinking about you. xoxo

Miamia-I hope the adrenals provides some answers...xoxo

Laura-

oh god your appt sounds like mine at the celiac center in ny. I was reading form the site you posted about it sounds interesting I may call my doc and run it by him. I know how frustratd you must be I hate not having answers or some reason behind why I am so sick- its almost worse then the physical discomfort- ok not worse but it really stinks

Miamia

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Hi Laura,

Boy, they really put you through it today! Like you said, though, if it gets you closer to figuring this whole thing out--it's all worth it.

I read up on the eos the other night when you posted the website. Very interesting--and it very well could be the case for you. I wish the doctor was more knowledgeable on the subject, but he does seem like he's willing to look into, and persue it.

You poor thing, having to endure a botched needle jab. Just what you needed on top of everything else! I've had that happen--although I wasn't under the kind of stress you are now--and it is not comfortable.

Take care and be sure to get lots of rest. This next couple of weeks sound like they will take all of your energy. You know you're in my prayers--now, get to bed--it's 10:00!! :D

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miamia,

hugs to you, as always. please read up on it...even if it is or isn't what I have, it fits so many of what people on this board can have (one of our thoughts is if i do have this, i think i might have had this in conjunction with celiac this whole time, which would explain why I get so horribly sick by such tiny amounts of cross contamination)...and then just developed other allergies/intolerances that set it off further.

If you want (or anyone else) more info, please let me know.

xoxo,

Laura

Laura-

I think i will definitly ask my doctor about it- maybe even tomorrow and see what he knows about it. I read alittle about it today but before I go into crazy research mode which I am prone to do I am going to ask him what he thinks. I know I have leaky gut and malabsorbtion and that contributes /causes all the food reactions and inability to gain weight but I have tried treating these and am still so sick so I know theres something else going on.

I know you have similar things to me in terms of all the intolerances and weight lose,I was wondering what is your appetite like? I have no appetite I eat all the time to try to gain weight but its made harder by the lack of hunger. I was just wondering about you

Miamia

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"Research indicates that the prevalence of EE is increasing with diagnosis and treatment continuing to be a challenge. According to a population-based demographic study of the pediatric population with EE residing in Hamilton County, Ohio, the incidence of pediatric EE was one in 10,000 with the prevalence being four in 10,000 which may be higher than those for other well-recognized inflammatory gastrointestinal disorders such as Crohn's disease."

http://www.apfed.org/

http://health.enotes.com/childrens-health-...roenteropathies

http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/

http://www.chop.edu/consumer/jsp/division/...ic.jsp?id=83825

http://www.detnews.com/apps/pbcs.dll/artic...=73260567598948

http://www.valdostadailytimes.com/local/lo...rces_printstory

http://biz.yahoo.com/prnews/061016/phm041.html?.v=47

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:( Dear LauraJ

I'm so sorry you had to endure the physical pain as well as emotional.

Let's hope the experience will bring answers.

What a shame the dr. didn't know about the condition you wanted answers to..but..what can i say.

Am kinda disheartend right now.

Your trying so hard with such a good attitude.

Guess i'll let others post to you as I just don't have any words of comfort this time.

Your story brings up so many memories of the stuff I've gone through and all the experts still say

"well your one of a kind-- what do you want me to do?..we've never met anyone with all your documented medical issues." These were all very highly reguarded experts in their fields and chairs of depts at some of the best medical institutions.

.

I've gotten more info here on the forum that makes sense to me..and no one on this board has ever told me..'WELL WHAT DO YOU WANT ME TO DO???

Hugs and love

JUDY

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Ok, I'm going to try to do this justice...bear with me. :D

So I read a thread about eosinophilic disorders this weekend, both on here and on the parents of kids with food allergies page...they are usually in children, but are being more and more recognized in adults. In fact, according to a 2004 journal article in the New England Journal of Medicine, they are actually more prevalent than IBD (Crohns, UC, MC, etc).

For a description, go to www.apfed.org...it is unbelievable.

From the website:

A growing number of children and adults suffer from a chronic and complex group of disorders described as Eosinophilic (ee-oh-sin-oh-fill-ick) Gastrointestinal Disorders (EGID). These disorders are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places anywhere in the digestive system. EGID is further subdivided into organ-specific diagnosis. For example, Eosinophilic Gastritis means eosinophils infiltrating the stomach. "itis" means inflammation. While visual inflammation is not always present, inflammation may be apparent under the microscope.

Eosinophilic Esophagitis (EE): high amounts of eosinophils occurring in the esophagus. Eosinophilic Gastroenteritis (EGE) affects the stomach and small intestine.

Eosinophilic Colitis (EC) describes the occurrence of high amounts of eosinophils in the large intestine.

Symptoms include:

• Nausea or Vomiting

• Diarrhea

• Failure to thrive (poor growth or weight loss)

• Abdominal or chest pain

• Reflux that does not respond to usual therapy (which includes proton pump inhibitors,

a medicine which stops acid production)

• Dysphagia (Difficulty swallowing)

• Food impactions (food gets stuck in the throat)

• Gastroparesis (Delayed emptying of the stomach)

• Anorexia (poor appetite)

• Bloating

• Anemia

• Blood in the stool

• Malnutrition

• Difficulty sleeping

Since none of these symptoms are specific for EGID, and many occur at times in healthy children or adults, the diagnosis is generally sought only after the symptoms have failed to resolve. Eosinophilic disorders can mimic the symptoms of other diseases like inflammatory bowel disease, food allergies, irritable bowel syndrome and reflux, among others.

Back to my story...

So, I read about this, and I get chills. For the first time, I'm thinking, oh my god, this is me. I cry, call Eric, call my mom, etc. Read up on it so I'm prepared for the appt today.

Leave at 8:30 am to drive (by mom, of course!) to baltimore. Get there, check in-which is so quick and easy, unlike EVERY other doc/hospital I've been to. Get in with Dr. He is extremely nice and down to earth. Told him my long sob story ("It all started when I came down with a horrible case of mono in 2003....") He asked a lot of questions. We talked back and forth. Asked about eosinophilic disorders. He doesn't know much about them, basically.

But, based on my history with crappy doctors not doing the right/complete testing (my doc put me on a gluten free diet for over 4 weeks before I was biopsied for celiac and only took one sample; another doc only took one sample to test for microscopic colitis; the list goes on and on, and on some more), he wants to do a full work up. In 1-2 weeks, I'm going to have an endoscopy and colonoscopy to check for multiple things: Crohns, UC, microscopic colitis, Celiac damage, eosinophilic disorders (esophagus, stomach, intestine, colon), and to also look for growths, etc.

He agrees that there is not a lot of point in trying to "so called" establish if I have celiac via biopsy (i.e., we are not going back on gluten) because he said, you have the bloodwork and you do well on the diet, there is no reason to put you back on. But, (and this is because of what I read about eos., the whole problem is these allergens that cause this reaction (similar, but not the same mechanism, as Celiac). So, the thought is, you get these things out (and its not just food, but environmental allergens also), and you heal. Some people cannot eat any foods and have to only have "elemental formulas" by drinking or through a tube, others go on steroids, others just take the foods out and they are fine (there is even less known about these than celiac, and there is so much variation). So, I've taken most of these foods out (see sig for what I am eating, and it is NOT an exaggeration...those are the only foods, no other ingredients) so I worried about testing negative for it (like, my CELIAC biopsy). I expressed my concerns, and he said bc it is a different mechanisms (its not antibodies like Celiac), it won't be that bad, bc i'm still cutting things out (tried pecans this weekend to be 100%, and have been horribly sick ever since).

Whenever we schedule my procedure, for the week before, I will have to stop working 100% and eat foods that give me these reactions (but, NOT gluten). Then I'll have the procedure, and will probably still be out for another few days/week because I will be so debilitated by this. Just thinking about it makes me want to cry. But, I know I need answers and I'm willing to do anything (BUT EAT GLUTEN! see the theme?) to get better.

After all this, I had a CT scan. He wants to rule out lymphoma (bc of the Celiac connection, as well as the connection to mono, he said) and potential other growths. The reason he is concerned is because of this somewhat sudden onset (I went from fine to not fine). So, I go down to have the CT done. becomes complicated because he brings out the stuff to drink, which is mixed into crystal lite, which I can't have because of the corn derivatives. He wants to do the dye then. I freak out bc I'm afraid of reacting to it. Then they say we'll do it without (and they were wonderful and helpful, etc). But, it is not of much help to really get the benefit. So I talk to the radiologist (by now, I have already had one breakdown, bc I had been in with the dr. for TWO hours and was exhausted, and now this made me feel like a freak, bc I know I'm not normal). I finally decided to do it. I need to get better, its worth the small risk of reacting.

So, I go to have the needle put in my arm. Turns out its a nurse/tech (prob a tech?) in TRAINING. I give her the benefit of the doubt, because I am a researcher and know that we all have to start somewhere. Plus, I'm not a fan of being stuck, but for as big of a chicken I am, I do ok with blood draws/IVs bc I have GREAT veins......never ONCE had a problem...nurses love my arms). Well someone comes in and looks at what she is doing, and then another one comes in. So she starts....and basically sucks...does it wrong...it hurts, hurts, hurts, and yet its not right, the nurse tells her to do something, she DOES NOT do it, it keeps getting worse (and this girl keeps telling me to breathe!!!! i'm like FIX IT). They decide to take it out (because she BENT the little part that goes in my vein, and so it was jamming me everywhere). By this time, I am freaking out and start bawling. It was all too much...here I am, with no answers, being overwhelmed by all this, and THEN, I get a trainee who can't even stick my arm. I am tired of being sick (and the other nurse had earlier said, you are so cute-you can't be sick-you are so skinny. I replied with a straight face, "Its because I'm severely malnourished and extremely unhealthy." - that shut her up). So I just cry, cry, cry. I make the nurses leave (my mom is with me) and just cry. I was mad because it wasn't even the blood draw...it made me mad that I am so sick and they cant find anything wrong with me, and then I get an idiot who just adds to my nervousness. My mom goes out and tells them that only an experienced nurse is allowed to touch me (in a nice way, she says this, of course!). Another nurse comes in and does it in 1.5 sec...no problem! Imagine that.

Have the CT scan, and didn't react to the dye, thank goodness. They let my mom stay in with me ... I am such a baby.

Go down and had my bloodwork done. Testing for a full work up of "basic" stuff, plus ANA, Lyme disease (he said lets start off with the basic test and go from there in terms of Igenix) and other stuff.

Finally left, got home after 6pm. I fell asleep in the car, of course.

So....its hard to say. Encouraging that we are getting testing done, but frustrating that he didn't know anything about Eos. In my heart, I feel that it is that. I just wish I had seen someone who knew more about it, because I have such classic symptoms. I am willing to put myself through hell, in terms of eating/stopping work for 1+weeks), to get a diagnosis. Also, at some point, I will have a full allergy panel, testing, etc done.

That was my big adventure. I should hear back about my blood work this week and they are calling me to schedule my procedure tomorrow. I'll keep you updated.....Thanks for all the warm wishes....Judy, Patti, Dave, Rachel, Donna, Bev, Carla, Andrea, Julie, Susan, etc. I have only briefly read about your appt, Donna, and everyone elses stuff...I will read tomorrow (just too brain dead, but wanted to post).

Love,

Laura

This OMG thread is great! You guys have so much info! Laura, I felt like I was reading about my symptoms and my experiences with doctors when I read your thread. I will be very interested in hearing about your testing, especially the EE. I had never heard about EE before, but it definitely sounds like a promising diagnosis. I just felt so badly for you after reading about your experience at the dr. I too went to Johns Hopkins a few years ago before I was diagnosed with Celiac. I saw an Endocrinologist because I thought my problems were related to my Hypothyroidism. They poked and prodded and then said they had no idea. I was a classic Celiac but had no idea! I am so tired of doctors, but need to find out why I am not healing on the gluten free diet! I hope you find some answers! We are moving on Friday so I won't have access to my compter for a few days, but when I get settled, I will definitely check back into this great thread! Best of luck to everyone!

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Wow, news gets old around here fast! Thanks for the welcomes.

Laura, I hope the tests are useful. I hate going through all those tests and seeing doctors. My expectations are always too high, and I usually get let down. Good for you for going after it!

I just wanted to mention a word on uterine fibroids, since Rachel asked, and also because fibroids are very common. Fibroids don't usually go away on their own. They are hard fibrous tissue. Ovarian cysts can go away. Small fibroids may go away if you are working on them directly, through various "alternative" means. Mine got too big. I flew from Colorado to NYC to see a gyno who specialized in holistic treatment of fibroids, and basically it was going to take too long to get rid of them. I want to get pregnant soon, and I was running out of time (39 then). I went through many doctors, similar to what others go through here for their digestive stuff. Doesn't seem to matter what you have, the story is the same. When I was 35, I was told not to worry about my fibroids, and I didn't need to do anything because they were small. Another doctor told me my options were 1) do nothing to 2) hysterectomy :blink: . I switched doctors, and my new doc didn't test me, so I didn't think it was important. My fibroids quadrupled in 3 years. I was pissed. Ignorance was not bliss. My symptoms were mild. I think I was asymptomatic for years. I bet I had my fibroids for at least 8 years. I had surgery this April to remove them via laproscopic myomectomy, but that's another story. Rachel, I think you have bigger fish to fry right now, and you are going down the right path. Healing your gut & Lyme disease will help your uterus. You might want to get an ultrasound every 6 months to monitor it. I wish I had demanded this from my doctors. I think they didn't want to do the ultrasounds because of the cost to the insurance companies :angry: .

Carla, thanks for mentioning adrenal stress. I think I have some now. I was at a celiac support group meeting last night, and there was this gluten-free pastry chef there. I had 2 gluten-free, dairy-free cookies and a sliver of cake. I was so sick after that. I almost bailed on work today, but had too many meetings. I had the weirdest dreams; my brain was flashing image very quickly and I couldn't do anything about it. Sugar sometimes gives me an evil temper, like last night. When will I ever learn :ph34r: ?

Claire

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wow.....holy heck...so much here! I just got back from a lovely dinner with my niece, carefully prepared as to my strict instructions to the kitchen manager - we will know tomorrow how careful they were! - and it must have taken 10 minutes to read three pages.

[and the rest of this post edited due to excessive rambling :huh: ]

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Miamia, the test I had was called a Biological Terrain Assessment, I think he said they are done in Germany in hospitals as a standard practice. Actually I had a lot of tests but that was the one I provided a teaspoon of spit for after 12 hours of fasting. Not easy, the doctor said some can't do it. :lol: Sorry my last post wasn't clear, I fell asleep about three minutes after writing it.

It is amazing to see this thread changing so much, I am glad to see new faces and know that Rachelville is a place people feel comfortable coming to. I have come to understand how important it is to trust myself, really, deeply trust myself and I know that this thread has supported that. I hope everyone has that experience.

Andrea, my diagnosis is a clinical one based on symptoms, turns out I have even more for Lyme than I knew, Lyme like Celiac can be a Clinical Diagnosis because each can lack proof. The two tests he did showed Lyme, one was the Meridian Stress Assessment and the other was the Muscle Testing. What was fascinating to me about the muscle testing, which I have always thought of as a little nuavo, was that when my arm gave out I had precisely the same feeling in my body that I had when I was ill three and a half years ago and had the rash. It felt like I collapsed inward and there was a sense of panic in my body. I remember during the retreat I was on, a three month commitment, I wanted to run away and that alone was bizarre for me. I am curious about the Igenex test but I trust this doctor and if he is confident enough without the Igenex results to confirm a diagnosis of Lyme, then I accept it.

I think that fear or panic is the body's way of attempting to communicate its' distress to us but because our attention is generally directed outward we attach that feeling of fear to events in our lives rather than looking inward. When we ignore the fear or medicate ourselves the next message we receive from our bodies is pain, exhaustion or neurological symptoms because the dis-ease has moved from the metabollic level to the immunological level. I knew something was going on with me three years ago but it has taken this long for the symptoms to manifest sufficiently that they can be identified.

The Dave, I'm always glad to see you here, thanks for the birthday wishes. :)

Laura, I am sorry to hear you were practiced on. :angry: I hope they provide you with some useful information.

I regret the CT Scan I did, apparently they have a tendency to over radiate small women and under radiate large men, guess what my problem was? I felt burned afterwards. I did not drink the contrast, my mother reacted badly to it and I did some research prior to the test and discovered that it has a negative effect on 2% of the population and kills one in ten thousand. I didn't know that the CT Scan was the equivalent of 100 chest x-rays. I cannot emphasize how strongly I feel that in having many of these tests we are putting ourselves in harm's way.

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Your appointment sounds productive. Looking forward to hearing about your first session with amalgam removal also.

Have you got food to get you through this that you can eat? Stuff put away/locked up that you can't?

I'm a little nervous about the removal for some reason, lol, not sure why exactly, maybe the needles sticking me with mind numbing drugs or maybe the drilling... not sure :lol::lol::lol:

Actually, no I don't have ANYTHING I need for the diet, lol. My freezer is full of BEEF, nothing but beef. :ph34r: I have a few veggies, and a little fruit, but not much else. I'm trying to decide if I just want to start the diet on Saturday after I've gone grocery shopping, or try to fit grocery shopping in after one of my appointments this week. Haven't decided for sure, but I'm feeling like I SHOULDN'T put this off...I have a strong feeling I need to start as soon as possible. Weird, lol. :rolleyes:

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I'm a little nervous about the removal for some reason, lol, not sure why exactly, maybe the needles sticking me with mind numbing drugs or maybe the drilling... not sure :lol::lol::lol:

Actually, no I don't have ANYTHING I need for the diet, lol. My freezer is full of BEEF, nothing but beef. :ph34r: I have a few veggies, and a little fruit, but not much else. I'm trying to decide if I just want to start the diet on Saturday after I've gone grocery shopping, or try to fit grocery shopping in after one of my appointments this week. Haven't decided for sure, but I'm feeling like I SHOULDN'T put this off...I have a strong feeling I need to start as soon as possible. Weird, lol. :rolleyes:

if your body/ mind is telling you to do something- DO IT!!! I really think anytime my vody is telling me I need to do something or eat something it is more important than anything a doctor can tell me.

Maybe your nervous about getting the removal becasu eyou are finally getting to the bottom of whats wrong and doing something about it - there is alot riding on it. Maybe the nerves are because of a good thing and not a negative one- Just an idea

Miamia

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