Omg...i Might Be On To Something

[Mango04]

  Rachel--24 said:

Are REAL dingo's like kangaroos???

I dunno, but I hope so, because I've hung out with some kangaroos here and they weren't scary.

Hi Julie!!!!!!! Sorry you're sick

[Green12]

  DingoGirl said:

JUUUUUUUUUUUUUUULLLIIIIIIIEEEE

what is that crazy sad song you are listening to??? I do it too.....sad music for sad days....used to listen to the saddest song of all, Peter Gabriel "Mercy Street" - - don't even ASK me what that one's about, it is too tragic.....I hope you feel better and not so weepy soon, sweetie. NO CRACKERS! hey, do you have a Trader JOe's nearby? did I already tell you about the totally non-CC rice crackers there? they are quite good, but I have never had Edward and Sons so can't compare.

Why am I still here? I thought I was going to bed?

It's OAR, "Heard The World", I love it, but it's one of those songs that makes me reflect on the state of things.......

I LOVE Peter Gabriel's music. "I Grieve" gets me good, the tears just pour out. I don't think I have heard Mercy Street, will have to check it out tomorrow.

Hmmm, no Trader Joes in my neck of the woods. Only Wild Oats and Whole Foods and the gluten-free cracker department, the ones that I can eat without a bunch of added ingredients, isn't so great But thanks for the suggestion.

Yes, why are you still up? Wait. Why am I, it's later here

Hi Mango! Thanks, I'll rebound soon enough

Good night all!

[Mango04]

  Rachel--24 said:

Camping talk is always fine with me. Have I metioned my LOVE for camping?? Camping with all the amenities...of course.

OMG I know! I like "roughing" it...as long as I am within walking distance of a nice restroom with a shower LOL

[Rachel--24]

G'nite everyone.

Evie...did you get the C.Diff link?

I posted it a page or 2 back...in case you missed it.

  Mango04 said:

OMG I know! I like "roughing" it...as long as I am within walking distance of a nice restroom with a shower LOL

EXACTLY

[DingoGirl]

Wait....did Rachel really ask if dingos were like kangaroos???

Here is a dingo, and they are glorious, and my Stinker looks very much like one.

Open Original Shared Link

okay, House is on, gotta go!

Julie, Mercy Street is a very old song, from his "So" album, and it was about the poet Anne Sexton, who killed herself.... And eons ago I used to listen to it on the way to work on sad days, and tell my friends there, I am having a Peter Gabriel day.

I don't have those any more, really. Not since the two big toxins are gone, gluten and the other one, who shall not be named here.

Tika is digging up my freshly laid sod, every day. And eating it.

night everybody.

[Rachel--24]

  DingoGirl said:

Wait....did Rachel really ask if dingos were like kangaroos???

[rinne]

  Rachel--24 said:

I think my liver is not handling all these toxins well at all. The alcohol thing really stands out in my mind....not to mention all these chemical sensitivities. I think its all got to do with my body's inability to detox. The Dr. said that Lyme spits out toxins....creating a highly toxic environment.

Rinne...do you think this is true?? Could the Lyme create such a burden on my liver?? Obviously mercury and other things have a part in all this but I'm wondering how much damage could Lyme alone cause??

I know my liver is stressed too Rachel and yes I think the Lyme can really do a number on them but I also think that our livers can regenerate themselves and with treatment we will recover to a great extent.

  DingoGirl said:

OMG Rachel, please don't hate the Georgia Bulldogs, they have done nothing wrong Silly, it is the FRESNO STATE Bulldogs, and they are playing tomorrow night, everybody...... You know what that means, we must implore the football Gods once again.... ha ha ha ha ha ha!

Julie, I am sorry you are feeling so weepy, sad songs are good for that though and sometimes I rent a really sad movie when I need to cry. I always feel better after, like I've showered inside.

Too sleepy. Night all.

[evie]

  Rachel--24 said:

G'nite everyone.

Evie...did you get the C.Diff link?

I posted it a page or 2 back...in case you missed it.

EXACTLY

Yes i did and THX, kinda scary too.

Thanks to everyone for your concern and all.

Is good to know some people know what we talk about, those around me know very little

about celiac and so forth..can't imagine such problems.

G'nite all. evie

[AndreaB]

Boy, it's been busy here tonight. I've read everything.....didn't comment on anything. I'm tired and am going to get to bed at a better time tonight.

Julie,

If I had your number you'd be hearing from me. Just ask Rachel.

[happygirl]

about to head to NIH....thanks for all the posts. have lots to write, hopefully tonight.

rinne, so can we patent your voicemail, but insert "correct diagnosis" for whatever it is for all of us? I think I have a few choice words to "personalize" it at the end.

L

[Rachel--24]

I found this recommendation for Bioset from a Lyme patient

  Quote

Bioset works better than NAET

Several years ago, I went to an acupuncturist to help with severe allergies. I had never had allergies until after my tick bite in 1994 (I had yet to be diagnosed with Lyme). Within 4 years I had become so allergic to everything in my environment, that I had to give my cat away, and could not go outside for 5 minutes without a massive reaction.

The acupuncturist did many NAET treatments, which did alleviate my symptoms. The avoidance of the treated allergen for 24 hours can be extremely difficult; e.g. for one treatment I was only allowed to eat Jello, for another, Cool Whip, for 24 hours! Yuck! I lost a significant amount of weight while undergoing these treatments.

Then I found a naturopath/acupuncturist who was using a treatment called Bioset, developed by Ellen Cutler (I think she's a DC - see her book "Winning the War Against Asthma & Allergies). Bioset evolved from NAET, but is much easier to use. You can treat for multiple allergens at once (as many as muscle testing says your body can handle), and you don't have to avoid them for 24 hours. I have found these treatments to be invaluable - I am virtually allergy-free now. I do have recurrences, especially when under too much stress or when Lyme sx flare up, but when I get re-treated, I feel better.

If you're considering NAET, I would highly recommend you look into Bioset - IMO it's more effective and much easier to endure.

YAY....reading stuff like this gives me lots of hope.

I'm reading lots of stories like this...WOOHOO....maybe I am on the right path with the Bioset.

  Quote

--------------------------------------------------------------------------------

After eight years of chronic illness and diagnosis from Fibromyalgia to Chronic Fatigue and others, I was tested using the BioSET program and found that I had Lyme Disease. Subsequent medical tests proved this was accurate and I now have an answer for my mysterious health problems. Thank you BioSET

Hmmm...sounds like I'm some kind of spokesperson for Bioset.

[rinne]

###

Sounds like fun to me. I think we have to learn to laugh at them, wouldn't that blow their tiny little minds? If I had more energy I would do it just for fun. I would make appointments with different doctors and present myself as if I don't know what is wrong with me and when they started to run their "there is nothing wrong with you", I would have the pleasure of setting them straight ...... ridiculous revenge fantasies take me nowhere but they are amusing.

There are some, not all, that are idiots and bullies and it is my feeling that as soon as we encounter one (and we know when we have) that we simply stand up and tell them that we know we are wasting our time, our energy and our hope, which is much to precious to expend on idiots and bullies. Wearing our pearls we will maintain a graceful and elegant confidence as we depart, they will be shamed or at the very least embarrassed because someone has just walked away from them, someone who "needed" them. As Susan says "Harumph".

I am having too much fun with this.

[TriticusToxicum]

  DingoGirl said:

Went to lunch, had some wine, laughed and got incredibly silly. had SO Much fun. doing it again for my birthday in a few weeks. With more people. Mom's paying. Am taking the dingos on a SECOND walk today, they are just flummoxed and bewildered but incredibly joyful.

Yay FUN!!!

[dlp252]

Wow, so much wisdom in this group! I am almost speechless with the words of wisdom spoken on these pages!

Laura - so sorry about the flaming jerk doctor...you're at NIH now, so hoping you are having a MUCH better day there today.

Rachel - my reaction to alcohol is so much like yours...I posted that about 4 pages ago, lol...used to be able to handle quite a bit, but 1 will definitely cause all kinds of "hangover" type symptoms and major D.

Wow, okay, I read a lot but can't remember now.

Great posts from so many.

Julie - I had a follow-up appt. yesterday with the nutritionist at the new clinic...she handed me a handout explaining the next part of the elimination diet. I didn't look at the thing until I was almost ready for bed, but it said this... "Other reactions may include gas, bloating, diarrhea, brain fog, headache, muscle or joint pain without due cause, wheezing, mucus production, MOOD SWINGS, irritability, CRYING SPELLS, skin rashes, excema, psoriasis, etc." That was a list of some of the things to look for when adding foods back in...I'm wondering if what you're going through now is a delayed reaction to the food you were eating or maybe even a slight "detox" from not eating it anymore.

[AndreaB]

Laura, Hope your appointment goes much better today.

Rachel, That's great news about bioset. Sounds like you're heading the right direction.

Donna, Thanks for that post. That's helpful.

Julie, See Donna's post above if you haven't yet.

Rinne, Always love your posts. Hope your feeling better today.

[Green12]

Good morning all

Thanks for all of the good wishes and concern I am feeling better today.

I forgot to say to Beverly last night, sounds like the appt. with your physiaitrist (sp?) was very productive . Omg, I think you might just be on to something I know there are many tests and much work to be done ahead, but it must feel good to finally be getting to the bottom of things.

Donna, thanks for sharing that information from your handout .

I have had this phenomenon since forever, as long as I have been reacting to foods. I have always described it to the people who were treating me as "withdrawal detox" because that is what it feels like I am going through. I do have reactions to foods, during and after, but I have this whole other set of syptoms when eliminating those foods. Of course they looked at me puzzled and never knew what it was.

I am one of the few of this group here, it seems, who gains weight during a reaction. It seems like the most of you get d, or have massive stools (Rachel )and you get rid of the toxicity, while I can gain up to 20 lbs in a couple of days and I don't lose it. I hold on to it until I remove the offending food- and the fluid build-up and swelling will take a couple of weeks to go down (that is if I keep eating things I don't react to to add to the swelling/toxious edema) Is toxious a word?? Well it is now

So my theory has always been that the weight I gain, or fluid, is the toxicity building up in my body, and the symptoms I experience "withdrawing" is my body's answer to"d", only it's not "d". It's sweating and tears, and mood swings, and headaches, and body aches, rashes, itching, etc. I think my only way of eliminating the toxicity is through the skin since it doesn't pass immediately, or even with a delayed response, through the bowels.

If that even makes sense?

Great endorsement for the Bioset Rachel, sounds like it's a good thing and that you are on the right track with it

rinne, I agree with what you said. Crying is a great release, and I always feel better afterward.

I also agree about the liver, my naturopath said it is an amazing organ and has the ability to regenerate itself. So, there is lots of hope there.

[Green12]

  Mtndog said:

OMG I love this. From now on people who make me mad will be called FLAMING JERKS!

This made me think of that commercial for some beer where there are a bunch of men (Jerome Bettis and Burt Reynolds are a couple of them) sitting around a table making "man laws" Has anyone seen these commercials?? They are hysterical. We should have "Rachelville Laws"!!

Ok, I was thinking our first law could be any doctor or healthcare professional that does not read our charts, listen to our complaints and concerns, dismisses our symptoms, even mentions IBS, will be from there on out known as a "Flaming Jerk" and will be given notice with a variation of the following (thank you to rinne):

1) There is something wrong with us

2) We are smarter than you

3) You, Flaming Jerk, are a danger to your patients

Rachelville Law???

All in unison now, "Rachelville Law"..........

Sorry , rinne classes us up with pearls and insightful profound eloquence and I bring us right down with a beer commercial

[AndreaB]

  juliem said:

Sorry , rinne classes us up with pearls and insightful profound eloquence and I bring us right down with a beer commercial

My hubby was quite upset last night about how some of you women have been treated by doctors.

[Fiddle-Faddle]

Julie, "Toxious" is a brilliant description--makes me think of toxemia of pregnancy (aka preeclampsia), where, yes, you retain a ridiculous and dangerous amount of fluid. Along those lines, do you have a home blood pressure monitor? I wonder if your BP goes higher when you are toxicized like that? There may be a connection--this year (the year I got celiac symptoms), my blood pressure rose quite a bit, but the flaming jerk doctors (LOVE that phrase!) are blowing it off because my blood pressure is still "within normal limits." Never mind that it is 20 points (both numbers!) higher than it used to be.

Julie, you may be on to something! Rachel?? Scientificness, please?

[Guest melannen]

  juliem said:

This made me think of that commercial for some beer where there are a bunch of men (Jerome Bettis and Burt Reynolds are a couple of them) sitting around a table making "man laws" Has anyone seen these commercials?? They are hysterical. We should have "Rachelville Laws"!!

Ok, I was thinking our first law could be any doctor or healthcare professional that does not read our charts, listen to our complaints and concerns, dismisses our symptoms, even mentions IBS, will be from there on out known as a "Flaming Jerk" and will be given notice with a variation of the following (thank you to rinne):

1) There is something wrong with us

2) We are smarter than you

3) You, Flaming Jerk, are a danger to your patients

Rachelville Law???

All in unison now, "Rachelville Law"..........

Sorry , rinne classes us up with pearls and insightful profound eloquence and I bring us right down with a beer commercial

I LOVE those commercials!!

Rachelville Law

[rinne]

  juliem said:

1) There is something wrong with us

2) We are smarter than you

3) You, Flaming Jerk, are a danger to your patients

Rachelville Law???

All in unison now, "Rachelville Law"..........

Sorry , rinne classes us up with pearls and insightful profound eloquence and I bring us right down with a beer commercial

Yes, to the Rachelville Law, I would only like to add we must all cultivate a penetrating and scathing gaze to go with this law, pearls optional. And. I'll have a beer with that, whoops too early in the day.

Julie, what you said made complete sense to me, if I understood it, you are saying that what is toxic to you is retained as fluid and detoxing causes you emotional reactions, yes? I can relate to the feeling of being toxic, years ago I would reach a certain point and then get a migraine and it always felt afterwards like the migraine had purged me, does that make sense? I am wondering what system in your body is not flushing out toxins and given that you eat well what toxins are you exposed to? Okay, now I really need Rachel.

I'm home from yoga and avoiding writing an email to Hoffman. His assistant contacted me to start taking the Samento but the written protocol he gave me includes stuff I don't have and he gave me Noni which I think he is using instead of the Burbur on the Samento sheet and just the effort of sorting it out and writing it down is more than I want to do.

I just want to play.

[Rachel--24]

  juliem said:

I am one of the few of this group here, it seems, who gains weight during a reaction. It seems like the most of you get d, or have massive stools (Rachel )and you get rid of the toxicity, while I can gain up to 20 lbs in a couple of days and I don't lose it. I hold on to it until I remove the offending food- and the fluid build-up and swelling will take a couple of weeks to go down (that is if I keep eating things I don't react to to add to the swelling/toxious edema) Is toxious a word?? Well it is now

So my theory has always been that the weight I gain, or fluid, is the toxicity building up in my body, and the symptoms I experience "withdrawing" is my body's answer to"d", only it's not "d". It's sweating and tears, and mood swings, and headaches, and body aches, rashes, itching, etc. I think my only way of eliminating the toxicity is through the skin since it doesn't pass immediately, or even with a delayed response, through the bowels.

If that even makes sense?

It makes sense Julie. Believe it or not the first two years of my illness I was NOT losing weight...I was gaining. I had gotten noticeably bigger *everywhere*. I felt very "swollen"....I had dimples in my legs and other areas. Even though I was sick...in those first years I didnt make a connection with food at all....I thought it had something to do with my thyroid. I was gaining over 10 lbs. in a day but somehow losing most of it in my sleep. My weight was fluctuating pretty widely but for awhile I was just gaining.

I thought it might also be cuz I was on disability and not so active anymore so I bought an excersize machine that I saw on an infomercial. Little did I know eventually I'd be down to 94 lbs.

I did start to worry a little about the weight gain...I think I got up to 130...which is alot for me. I had *tried* to gain weight for years and years and could never do it and suddenly I was blowing up. It felt like alot of swelling and fluid retention. A guy on my softball team was asking the other players if I'd gotten a breast "enhancement". Little did I know this extra "bonus" was not gonna last long.

Eventually after the two years I started to feel like there was SO much swelling and fluid but not much of anything else....like muscle or fat. My hands, face, neck, shoulders.....everything was so swollen and big. It mostly affected my upper body. At this point I wasnt able to complete an 8 hour shift at work and was basically dragging myself around...I just wanted to sleep and do nothing else. People were asking me if I'd been working out because my shoulders and arms were looking so big and muscular. I told them it wasnt muscle....I dont work out...I have no energy and just wanna sleep. I ended up on disability for the second time.

I started telling the Doctors I felt full of fluid and if it were ever to leave...I'd probably be nothing but bones. This is exactly what happened. Interestingly...it didnt happen until I started messing with my diet...thats when the weight started falling of of me. It was mostly swelling and fluid that was leaving...I looked way too skinny after that and people started getting concerned but all I could say was "Wow....I know I look thin but I feel SOOOO much better."

When I started eating the gluten-free goodies and other gluten-free mainstream foods I started puffing up again. One of my early threads on this board was about how I was suddenly "puffing" up on the diet.

I dont know if the same thing would happen now but most likely it would...if I started eating things I shouldnt eat. I think its exactly like you said...my body does not detox well either. I tend to detox through my skin....sweat and tears. Back when I was super "puffed" is when I saw the mercury-free dentist (who's now Donna's dentist)...I always had huge pimple like swellings on the back of my neck and on my shoulders. They werent pimples....but seemed like they were only they would never come to a head. Instead they would swell and then shrink...then swell and then shrink. I've gotten them on my face before too. The dentist had looked at them and said that my body was trying to detox and thats what those bumps were all about. I never have the bumps anymore....so long as I stay strict on the diet....they were starting to come back when I started adding processed foods in but now its been awhile since I've seen any bumps on me.

I'm gonna guess that...like me...your liver is unable to detox and your body is responding to the excess toxins in undesireable ways. I think you're totally right in your assessment about that. It sucks though.

  juliem said:

1) There is something wrong with us

2) We are smarter than you

3) You, Flaming Jerk, are a danger to your patients

Rachelville Law???

Rachelville Law

  Quote

Great endorsement for the Bioset Rachel, sounds like it's a good thing and that you are on the right track with it

Holy Cow...can you just seeee me if the Bioset stops all these reactions??? How will I ever shut up about it???

[rinne]

Rachel Rachels Bioset. ROTFLMAO

[Rachel--24]

  rinne said:

I am wondering what system in your body is not flushing out toxins and given that you eat well what toxins are you exposed to?

I'm thinking the same thing...some organs arent detoxing well.

Assuming the Bioset is accurate.....for me it is my liver, lymphatic system and my stomach which are holding onto the toxins.

About the crying and then feeling better. OMG....there have been so many times that I've had to actually make myself cry in order to feel better. Most times its an involuntary reaction I get but many times the tears simply wouldnt come out and I've had to struggle to cry...because I know it will help.

This is definately a reaction due to toxic build-up....when this happens my tears are "sticky"....not at all normal. Sometimes just mildly sticky but other times so sticky the tears wont even fall....almost like syrup. Once I'm able to get the tears out for awhile....they get less sticky and I feel TONS better.

I've yet to see ANYONE else have this type of reaction but to me it seems obvious thats its toxins....it also only happens when exposed to too many toxic substances....whether it be from foods, perfumes, household cleaners or anything else.

Its so bizarre.

  rinne said:

Rachel Rachels Bioset. ROTFLMAO

LMAO!!!

Totally!

[rinne]

Rachel, it is astonishing to me that you have survived this, very presidential I would say. When I think of how you must of felt when you saw that doctor who called you crazy I could cry, this is why we must have the Rachelville Law. We must never allow them to make us believe we are the problem, we are not the problem we are the solution.

I have not had the symptoms you describe and I suspect they are more related to the mercury than the Lyme. Julie, mercury?

I do have tears that burn though, they are like acid, does anyone else?