Omg...i Might Be On To Something

[AndreaB]

Do you all put any faith in a IBS diagnosis (because I kind of don't....)?

The general consensus is that IBS is a label for something the doctors can't figure out. If you see an alternative type doctor (integrated/naturopath/holistic/llmd) you have a better chance of getting answers (at least that's the way it appears from the members of this thread).

[CarlaB]

I think IBS, Chronic Fatigue Syndrome, and fibromyalgia are all merely a description of symptoms. Since the doctors can't say, "I have no clue," they have to diagnose with something like this. If you have one of these, there is a reason.

[tom]

I agree on the IBS & anything else that ends in syndrome. There's never a cause w/ these alleged diagnoses.

Makes me wonder if before xrays they'd call a slightly fractured arm Painful Arm Syndrome.

Seems some doctors figure they can give it a name and shout "NEXT!".

[CarlaB]

Morgan told me today that when she saunas this gunk comes out of the pores on her chest. If she scratches it off, it's a greyish color. It only happens if she hasn't saunaed for a while ... after a couple days it goes away.

Any ideas?

I told her that it would be good for her to sauna every day as her body is trying to eliminate something through her skin.

[Mtndog]

I agree on the IBS & anything else that ends in syndrome. There's never a cause w/ these alleged diagnoses.

Makes me wonder if before xrays they'd call a slightly fractured arm Painful Arm Syndrome.

Seems some doctors figure they can give it a name and shout "NEXT!".

I was thinking the same thing. anything that ends in syndrome tends to be a constellation of symptoms for which they don't know the cause. This isn't to say they don't exist- you can clearly have an irritated bowel, be chronically fatigued and have your muscles aching constantly. It's basically the diagnosis you're left with when they've ruled everything else (that they can think of anyway)

[Rachel--24]

Yeah, Morgan is already wanting to try it.

I wish I knew about this type of stuff before I got sick. I'm sure it can only do alot of good for Morgan...between this, the saunas, and being off gluten....she's really learning early on how to stay healthy.

I doubt I would have went out of my way to really do anything to "protect" myself since I would never have imagined this could ever happen...I was sooo healthy and active all the time. Morgan knows what can happen since her mom is dealing with it....so shes got incentive to really say on top of this.

Yeah I found a store here that sells enyma bags. You can use for douce, enymas and it's rubber. But they sold the last one today. SO now I have to wait till tomorrow to do the enymas.

Thats great that you were able to find a bag!! What kind of store was it?? I searched alot of stores and never could find one so ordered online. It was a couple years ago....I guess maybe I just wasnt looking in the right stores.

I dont think I ever feel a "squirt"....I can definately feel the water though....it sometimes gurgles if I change positions. I had read that the noises indicate toxins being loosened from the fluid.

I know for sure alot of toxins get loosened when I do these enemas. I start feeling kind of hot and nauseaus or queasy until its all released. The same type feelings when you eat something bad and end up with diarreah...thats how it feels right now because I'm still pretty toxic.

Rachel, you are too funny. I love the way you solve problems, you rachel them.

I cant believe how easy it is to rachel ice cream....everything I tell myself ahead of time just goes right out the window once I'm happily indulging. Next thing I know I'm staring at empty pints (and yes, thats plural ).

I am doing really good about not racheling my treatments though. I've totally mellowed out in that regard.

I have no idea, but I have an idea for the name ... The Nothing Bar!

I think I want Rinne Bars instead. Rinne send me 50 please.

[rinne]

I agree on the IBS & anything else that ends in syndrome. There's never a cause w/ these alleged diagnoses.

Makes me wonder if before xrays they'd call a slightly fractured arm Painful Arm Syndrome.

Seems some doctors figure they can give it a name and shout "NEXT!".

You nailed it.

[CarlaB]

Thats great that you were able to find a bag!! What kind of store was it??

I got mine at Walgreens.

[Rachel--24]

In ONE sitting????

Carla...I typed quarts in my post....but it was actually pints. I'm kind of out of it from lack of sleep.

I ate 1 1/2 pints in one setting.....I think I ate almost 4 pints in about a day and a half.

Its not like its totally unusual since that was what I was doing for 8 months anyway...basically living off ice cream.

I just got tired of seeing all those pints in the freezer. Now I'm kinda sad that they're all gone.

Andrea....Poor Talitha.

I hope she feels better about things now....I know she is very sensitive and I could see how that would hurt anyones feelings.

[Rachel--24]

I got mine at Walgreens.

Dang....I'm pretty sure I looked there too.

[CarlaB]

I'm kind of out of it from lack of sleep.

It's really funny to type this, but you sound tired. No staying up late on the OMG thread for you!!

One pint is still my limit ... a pint of Haagen Dazs, my favorite ... well, a pint of raspberry/chocolate chip by Graeters is a favorite, too. Graeters is a local chain ... the chocolate chips stay soft in the ice cream ... don't know how they do that.

[jerseyangel]

That leads me to ask you all, what are your thoughts on IBS? My GI thinks I have it and celiac, but then again I was diagnosed with IBS about 7 years ago, well before my celiac diagnosis, which I now think was undiagnosed celiac. Do you all put any faith in a IBS diagnosis (because I kind of don't....)?

My new doctor said I had IBS in addition to the Celiac--he said it's entirely possible.

I tend to agree with him--because of the way he explained it. In my case, the food intolerance triggers it--so it's not really a "nothing" diagnosis, it's a result of a food trigger.

He is continuing to try and help me figure out what else might be wrong--what is causing the foods to continue to give me problems.

I think it's one thing to be told you have IBS and sent on your way, and another when the term is used more to describe a symptom. I mean, there's no doubt that my bowel is irritible.

[CarlaB]

and another when the term is used more to describe a symptom. I mean, there's no doubt that my bowel is irritible.

Yes, this is what I mean, it's a symptom, not a disease, but it's generally treated as a disease.

[AndreaB]

I think it's one thing to be told you have IBS and sent on your way, and another when the term is used more to describe a symptom. I mean, there's no doubt that my bowel is irritible.

That makes sense to me too.

Remember Donna got tagged with Fibro even though they knew it wasn't that.

[happygirl]

Thanks for the update, Bev. I am so happy that you KNOW and are starting treatment. It can be rough at first for some, but in the long run, its worth it. Start TODAY keeping a journal. You can even do it on an excel spreadsheet. I put the date, and then what my day was like. I include everything I take/time frame. I also describe symptoms, if any, etc. It has helped me tremendously to track how things are going..differentiate from a bad day and a good day, and a bad day and a flare day, etc. If you'd like, I'll send you mine so you can see it. Its really really helpful for me. At first, it was a pain---now, its worth it!

I'm happy Kurt was there with you--esp in the beginning, until you have a better grasp on things, its important to have someone else there to help out. And good so that he understands whats going on too.

I'm sure you are overwhelmed, but, its a good start. Make sure they are running regular bloodwork to make sure that your body is doing ok on the abx.

One hint of motherly advice----sleep. Even though I've been doing better lately, I'm getting in bed many nights early....asleep by 9.....getting up at 7 or after. I feel kind of pathetic some days doing that, but I need the sleep and its helping. So don't feel bad about it, or naps, etc.

Interesting about the negative biopsy...I was hoping someone's was going to come back positive.

Many hugs to you...but excited you are starting treatment, my dear. I keep Eric updated on everyone on here, and he wasn't surprised you were positive, given that your symptoms were similar to mine, in terms of food issues.

Rinne---i'm so happy you are a regular again. Its so good to read about the rinne bars

Andrea---I had to laugh about you venting. We know it must be bad if you are venting! Poor thing.

Mia---I hope that your new app't brings faster, better, etc answers for you. You deserve someone who is going to be aggressive with treatments, because you have been sick for so long.

Carla---how is the amox going? any better?

susan---good luck on the job search. we are all pulling for you, dear! take your time, find something that will work for you.

Julie----welcome to our "home" . and you are another virginian, I see! i'm up near dc. No matter what your answer is, I hope you find your answers.

Judy...I owe you a PM my dear. I'll explain love you.

Ok, I'm tired so this is a pretty crappy post.....so all the "rest" of you get is hellos.....Donna, Patti, Rachel, Jin, Lisa, Murph/Tom.

xoxo to all Rachelvillers

[dlp252]

Did Dr. S suggest you take alpha lipoic acid? There has definately been no list of supplements that he's wanting me to take...just the whey protein and cats claw.

He's gonna be really impressed with all I'm taking now...in the past I havent been able to stay on anything...Its only been a few weeks now that I've been on the whey....( he gave it to me in October )

I bought the ALA on my own.....but then I read this...

I need to see what Dr. Amy says about it...I'll also ask Dr. S. in a few weeks.

Yes Dr. S suggested it...he was rattling off a bunch of supplements and I made him write it down. Anna has been out of it, and since I had so many other things to start I've just not worried about it. I'll need to pick some up soon. I'm still wondering about the whey. I used to use whey protein powder, but I do not think it was denatured or undenatured (whichever it's supposed to be, lol). Anyway, there were 7 things on his list...I've now started 5 of them I think, plus a couple that Anna wanted me to take after seeing his list. Wish I could find his original list though...

We'll see how long you last......I think you'll get sucked in ....I agree with Carla....you know you wanna try it!!

I dunnooooo Maybe not (she says as she wonders if Walgreens carries all the stuff) :lol:

Yeah....I ate 3 quarts ice cream.

Sheesh, and I felt guilty eating a WHOLE banana today.

Hey everybody!! This is Murph after finding old acct name. Woohoo I used to party like member 1999!

I heard that.

Hi murptom!

Anyway, grandma got mad and hung up on Talitha. Talitha was in tears. She thinks she said something wrong. I told her that she's right in being concerned about getting sick and bringing up that she has gotten sick before wasn't necessarily wrong.

That is so sad!!!!

Yeah, Morgan is already wanting to try it.

This wrong on so many levels.

I have no idea, but I have an idea for the name ... The Nothing Bar!

Or "Much Ado about Nothing Bar"

[Rachel--24]

I agree on the IBS & anything else that ends in syndrome. There's never a cause w/ these alleged diagnoses.

Makes me wonder if before xrays they'd call a slightly fractured arm Painful Arm Syndrome.

Seems some doctors figure they can give it a name and shout "NEXT!".

I'll spare everyone here another tangent about Fibromyalgia, IBS, Chronic Fatigue symdrome, etc.

They're all "wastebasket" diagnoses....clusters of symptoms with "no known cause".

Whats actually shocking to me is the HUGE amount of people out there who actually *accept* these diagnoses.

Thats the part that I just really cant grasp.....none of it makes sense to me and why should anyone just "learn to live" with these kinds of ailments?? Why would anyone want to take endless prescriptions and not ever understand WHY those symptoms are persisting.

To me common sense says that when all these things are going wrong in the body....theres a REASON behind it. Same with autoimmune disease....the immune system doesnt just launch an attack on the very body its designed to protect....for no good reason.

There are reasons behind these things...Lyme is one of those reasons...but really many types of chronic infection could trigger these types of symptoms or autoimmune problems. They generally just dont get identified.

In my opinion treating Fibro, IBS or chronic fatigue is simply treating the symptoms. You will not be identifying the root cause of the illness.

Murph...Your post made me laugh by the way.

Its soooooo very true.

Morgan told me today that when she saunas this gunk comes out of the pores on her chest. If she scratches it off, it's a greyish color. It only happens if she hasn't saunaed for a while ... after a couple days it goes away.

Any ideas?

Hmmmm....I dunno.

I never saw anything like this after a sauna.....sounds like she should probably keep doing them though. Whatever it is....she probably doesnt want it in her body....so yeah....sweat the stuff out.

It's really funny to type this, but you sound tired. No staying up late on the OMG thread for you!!

OMG....Carla you have no idea....I can barely get any thoughts together and when I read my posts from earlier today they barely even made sense to me.

Yup....I'm definately going to bed very soon....I dont think I'll make it much longer even if I tried.

[CarlaB]

Carla---how is the amox going? any better?

Every time I increase the dosage I have symptoms flare. I'm up to two pills three times per day. Need to get up to four pills. Today I increased the morning dose to two, I had only been taking one for that dose because mornings are so hard.

I am feeling a bit better and I can see that the coffee enemas are going to be a big help. My stomach upset was a little less today. I feel like it's helping detox ... just after one day.

Thanks for asking.

How are you doing?

Ok, I'm tired so this is a pretty crappy post

Your posts are never crappy.

(she says as she wonders if Walgreens carries all the stuff)

Yes, it comes in a box so it's not real obvious to the whole store what you're buying ... it's near the other unmentionables ... pregnancy tests, condoms, etc.

[dlp252]

Hi back at you Laura.

I had a nutrition appointment today...it was a good appointment, but Dr. Rick looked like this through most of it. We meet regularly to discuss ongoing symptoms and trends. After discussing my insomnia and other lingering things, he asked what Dr. S is working with me on, so I told him. It was the mold toxicity that made him go .

He said the exact same thing that Dr. S did and that we all have discussed here before...I will not get better if I am exposed to mold. He wasn't saying it to discourage me, but wanted to make sure I knew how hard it would be to get well while continuing to be exposed. He also doesn't want me to be taking a bunch of supplements (like most people take prescriptions) to cover up stuff, but supports supporting my immune system and such.

He DID say it WAS possible that it was a large one time exposure and that the IgG might take a while to disappear... small hope.

I DO think he wants me to do something SOONER rather than later though. Like immediately.

That leads me to ask you all, what are your thoughts on IBS? My GI thinks I have it and celiac, but then again I was diagnosed with IBS about 7 years ago, well before my celiac diagnosis, which I now think was undiagnosed celiac. Do you all put any faith in a IBS diagnosis (because I kind of don't....)?

Yep, I tend to agree with everyone...as a diagnosis and off you go...not! But my bowel is also quite irritable. As long as they continue to try to find out WHY it's irritable, they can label me with anything they want.

Morgan told me today that when she saunas this gunk comes out of the pores on her chest. If she scratches it off, it's a greyish color. It only happens if she hasn't saunaed for a while ... after a couple days it goes away.

Any ideas?

I told her that it would be good for her to sauna every day as her body is trying to eliminate something through her skin.

Definitely sound like toxins of some sort wanting out.

[dlp252]

Yes, it comes in a box so it's not real obvious to the whole store what you're buying ... it's near the other unmentionables ... pregnancy tests, condoms, etc.

Oh great...I NEVER go down that aisle.

[jmengert]

Thanks for everyone's thoughts on IBS--I feel the same way. There has to be a *reason* that my bowel is so, well, irritable. And, Rachel, it's very funny that you said that about the medications because when I was diagnosed with IBS years ago, I was given prescription meds and sent on my way. I was on those things for four years, twice a day, before celiac was even a thought--sigh.

Tomorrow I should have my appointment scheduled with the naturopath since he's in Thursdays and told me to call then. Hopefully, they can get me in soon. It'll be a two hour drive, but at this point, I'm willing to do almost anything.

[jmengert]

Oops, one more thing: Laura, my parents live in northern VA, so I'm up there fairly often. Do you see a doctor/doctor-type person who is helpful with any of your health issues? If you recommend anyone, I'd love to hear it.

[CarlaB]

Oh great...I NEVER go down that aisle.

Me either, that's why I figured it would be there!

Oops, one more thing: Laura, my parents live in northern VA, so I'm up there fairly often. Do you see a doctor/doctor-type person who is helpful with any of your health issues? If you recommend anyone, I'd love to hear it.

Oh, yes, go to Laura's doctor!!! He'll be thorough!!!

[happygirl]

Julie: sent you a PM.

Carla....julie will like her

and yes julie...if i think a dr. is competent....and i like them....wow. Thats a rarity.

[jmengert]

Just received your PM, Laura--thanks again.

And I hear ya'--I've seen so many clunkers of doctors that if I like someone, I'll shout it from the rooftops!