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Omg...i Might Be On To Something


Rachel--24

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CarlaB Enthusiast
I guess I haven't been married long enough! :P

Yeah you have, judging by the ages of your kids ... you just don't appreciate a good thing!! Besides, it's your JOB, learn to like it!!


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Green12 Enthusiast
Julie-

Ive had alot of tests done through great smokies- I trust them . The thing with stool tests is there is nothing is nothing as accurate as a "live" stool test. There are not many places that do them I had one done at this place I think it was called jetti catz (but I am sure I am spelling that wrong) . the other stool tests do test for things but not the same amount of parasites and not quite as accuratly.

I am actuallly waiting for results right now from great smokies.

I am also a very "toxic "person. If I eat the wrong thing I never get D only C. Its like my body refuses to get rid of the bad stuff- It wants to hold on to it so it can really do as much damage as possible.

I think my body just dosen't detox - Thats why I am so prone to candida and other baceria- My body seems to be the ideal breeding ground for these little critters. The weird part is I never get D but I lose weight I eat all the time and lose weight I swear there must be a really fat me walking around somewhere on another plane. And even though I lose weight I just get really really bloated to the point where breathing is difficult its very frustrating.

miamia

This is exactly how I feel mia mia, and have felt for years, trying to communicate this to all the people who have treated me. I feel like my body is an ideal breeding ground for every possible pathogen, I'm a magnet for them and they have overtaken me. I believe because of the pathogenic overload my basic digestive process seems to turn everything I eat (good healthy stuff too) into toxious waste and I absorb it, hold on to it, and cant seem to get rid of it.

I have always struggled with "C", since birth my mom tells me, but since getting sick it was so much worse- I would go two weeks or more without passing anything. I was advised to do enemas and then colonics (sorry too much information :ph34r: , but it is all a part of all of this) and afterwards I would feel so much better, I really felt it helped with the toxicity levels, but it became a problem. I completely lost all ability to have bms on my own and it further screwed with my digestion, I couldn't eat or digest anything raw. It took me two years to retrain my body and digestive muscles to have bms on my own, with different therapies, and now I can eat and digest raw foods- but I have higher levels of toxicity. So it's kind of a darned if I do, darned if I don't situation <_<

miamia Rookie
That is SO cute (really!).

Yes- talking to someone was unbelievably emotional. Imagine if we ALL got together in a room. God- we would laugh, cry. I can't even imagine how intense it would be!

Rachel- as far as whether or nor Fibromyalgia is real, I'm not sure what I believe. I think that there IS a definition of it. If I remember correctly the material covering the muscles fascia (let me check), yep here it is:

Open Original Shared Link

is like a big cobweb in your body that suspends everything and covers the muscles. This is what gets irritated. But I'm not sure if that's FMS or Chronic Myofascial pain.

From Open Original Shared Link

Fibromyalgia is not yet considered a disease. Diseases have known causes and well-understood mechanisms for producing symptoms. FMS is a syndrome, which means it is a specific set of signs and symptoms that occur together. Syndromes are no less serious or potentially disabling than diseases. Rheumatoid arthritis and lupus are also classified as syndromes. Lab tests for FMS do not exist right now. Lab tests are valid only to check for co-existing conditions. You can have other conditions and also have FMS.

I think that last part is key!!!!!!!!

You figure with something like IBS and Fibromyalgia there has got to be a TRIGGER or an underlying cause. My doctor is pretty much of the school of thought that Fibrom is real but in MOST cases it's secondary to another problem. According to him, it doesn't happen for no reason! So, I think I'm with you in that I think what you're experiencing (the theoretical you) is real but the pain and symptoms are secondary to something that hasn't been discovered in your body yet.

Susie Q- :D:D:D:D:D:D:D Yay! Glad to hear the job is going well. Baby steps.

You should read some Anne Lamott. She wrote this book called Bird by Bird about writing. The opening story is her brother trying to do ba science report on birds and freaking out because he had so much to do. Her dad says to him, "'just take it bird by bird, buddy, bird by bird." Good advice for life!

You would also love her "Traveling Mercies" book. She has two paryers "Help me, help me, help me" and "Thank you, thank you, thank you". She is a smart woman and a HOOT! :D:D:D:D:D

Bird by bird is one of my favorite books

rinne Apprentice
I think round Rhonda and round mia are walking around somewhere with skinny Donna. :lol:

:lol:

Mary (wife) is as hot blooded as can be, but her feet are always cold :huh: . On cold nights, if I'm in bed first I sometimes (too often) get accosted by two size 8 icebergs on my back in the crook of my knees. Talk about invigorating! I even bout her a nice pair of fleece socks to wear to bed, but I guess it is her revenge for...well, for my experiments in thermodynamics? :ph34r::o

Very cute. I definitely know that my husband does not like my cold feet and I've never tried warming my cold nose, that is adorable Carla, and in fact I never even thought about the fact my nose is cold before this. :lol:

Beverly, great scientificness. It sounds to me like fibro is connected to inflammation. I wonder if in some people it could be as simple as nightshades or gluten but because the cause is not removed the ongoing stress causes damage which the weakened body can't repair and that this then worsens the condition.

Julie, have you thought about experimenting with the Salt and Vitamin C?

miamia Rookie
This is exactly how I feel mia mia, and have felt for years, trying to communicate this to all the people who have treated me. I feel like my body is an ideal breeding ground for every possible pathogen, I'm a magnet for them and they have overtaken me. I believe because of the pathogenic overload my basic digestive process seems to turn everything I eat (good healthy stuff too) into toxious waste and I absorb it, hold on to it, and cant seem to get rid of it.

I have always struggled with "C", since birth my mom tells me, but since getting sick it was so much worse- I would go two weeks or more without passing anything. I was advised to do enemas and then colonics (sorry too much information :ph34r: , but it is all a part of all of this) and afterwards I would feel so much better, I really felt it helped with the toxicity levels, but it became a problem. I completely lost all ability to have bms on my own and it further screwed with my digestion, I couldn't eat or digest anything raw. It took me two years to retrain my body and digestive muscles to have bms on my own, with different therapies, and now I can eat and digest raw foods- but I have higher levels of toxicity. So it's kind of a darned if I do, darned if I don't situation <_<

oh god julie- we have way to much in common- since being sick C has been a huge problem and because I have leaky gut all those toxins I don't elimanate just go straight into my system. I used to be relient on ex lax - I finally got my bm to be pretty normal- although lately not so much!!- But I do go to colon therapy every month or so because I have candida and other problems and am too sensitve to take much to fight them so need a way to rid my body of them. I can't handle anythign raw right now but that was before the colon therapy- my body just cannot seem to digest anything properly.- but the more cooked the better it seems. I also really prefer warm food I find I constantly want to heat up my food it is much more soothing for me.

Miamia

rinne Apprentice

Open Original Shared Link

Neither FMS nor CMP are inflammatory conditions. FMS can occur at any age. Most patients, when questioned carefully, reveal that their symptoms began at an early age. About 25 percent of the FMS patients I have come in contact with are men. This ratio differs from most sources in the literature. I think that FMS is under-diagnosed in males.

I really wonder what testing they use to be able to state that, if they are the tests that I have undergone that show nothing then I seriously doubt it. This I think really goes to the heart of question regarding the diagnostic standards currently employed within our medical system. The alternative testing I received including the Meridian Stress Assessment clearly showed inflammation in most of my body in my case but none of that is read on their tests. I feel the inflammation as pain and as a deep agitation.

I have only one thing to say to anybody who is seriously ill and looking to conventional medicine to save them, "RUN FOR YOUR LIFE". :lol: Okay, so I don't have knees for running and my pearls would look out of place jogging, I confess I'm a walker and I have walked away from them.

I swear the other day I felt like I had entered a whole new galaxy as I plugged myself into my Energy Wellness machine and vibrated away. :lol:

DingoGirl Enthusiast
I dont get all these people accepting a life of pain due to Fibromyalgia. Am I missing something?? :huh:

oh yeah....I dont think Fibromyalgia is real.

Exactly, I don't get it either.....decades ago they called it Epstein-Barr, and then chronic fatigue, I remember the first time I heard fibromyalgia was about 10 years ago when a friend had it, then they told her she had MS. All so mysteriously inter-connected......wonder how much the medical community actually researches it.

Amy Tan had Neuro Lyme, it mostly affects the brain, and yes that is what I am wondering about you dear Susie. I hope it is not the case but you do seem to be part of our Lyme Clan.

I will look into neuro Lyme....my brain has always been the biggest trouble. (emoticon here but they keep busting me for too many emoticons)

I think Round Rhonda is walking around on another planet to. :lol:

yes, w/ round MIamia, who I suspect, along w/ Julie, has Lyme as well. I forgot to add those two to my list yesterday....or did I? (emoticon edited)

Mary (wife) is as hot blooded as can be, but her feet are always cold :huh: . On cold nights, if I'm in bed first I sometimes (too often) get accosted by two size 8 icebergs on my back in the crook of my knees. Talk about invigorating! I even bout her a nice pair of fleece socks to wear to bed, but I guess it is her revenge for...well, for my experiments in thermodynamics?

(emoticons removed - harumph)

Susie Q- :D:D:D:D:D:D:D Yay! Glad to hear the job is going well. Baby steps.

You should read some Anne Lamott. She wrote this book called Bird by Bird about writing. The opening story is her brother trying to do ba science report on birds and freaking out because he had so much to do. Her dad says to him, "'just take it bird by bird, buddy, bird by bird." Good advice for life!

You would also love her "Traveling Mercies" book. She has two paryers "Help me, help me, help me" and "Thank you, thank you, thank you". She is a smart woman and a HOOT! :D:D:D:D:D

BEV - - I LOVE Bird by Bird.....er, I should say, I loved the begining......never finished the dang thing. :ph34r: I lost my reading habit a few years ago when brain turned to mush, but I am going to get this book and start over! Evidently this book is directed toward writers but applies to so many areas as well.

Rachel - you are a FREAK - enjoying the last heat wave :lol: ......OMG, I seriously was almost in tears from it every day.....and when we had those outages.....holy lord......I desperately wanted to move.....

Gotta go plant my bouganvilleas, rain coming soon!


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AndreaB Contributor

Good morning everyone! I finally had time to catch up.

I'm with Susan.....it sounds like a possible lyme diagnosis for Donna, Carla, Mia, Julie, Bev, Susan. I'm also thinking Judy. Have I missed anyone?

Well all the kids have the cold their Daddy brought home. That's why Seth hasn't been sleeping well. I'm sure I'm not far behind. To many nights of not enough sleep are wearing. Now I don't know about getting pictures taken this weekend. Will have to reschedule for next weekend I suppose.

I don't really think I'm a part of the Lyme clan.....but I'm not leaving. :D Mitch is going to talk to his Mom about the possibility of his Dad having undiagnosed Lyme. He was diagnosed with ALS and had a long painful illness until he died. His Dad used to hunt, so that part fits.

Mia,

Have you found your lyme test? Were you tested through Igenix? Why do I think you weren't?

dlp252 Apprentice

Constantly amazed by Andrea, who seems to be able to do it all! ;)

rinne Apprentice
I will look into neuro Lyme....my brain has always been the biggest trouble. (emoticon here but they keep busting me for too many emoticons)

I'm glad you will look.

As to being busted for too many emoticons, I had to edit that emoticonfull post of mine, in response to yours, five times before it was acceptable. :lol:

Lyme is a stealth bacteria, :ph34r: brilliant in its' ability to decipher each person's unique vulnerabilities, capable of subtly weaving itself into existing weaknesses, slowly becoming entrenched in the body and that includes the mind (it crosses the brain barrier after only one week), until it is finally so firmly established that it tips us over into illness, pain and disability. As a friend says, "don't mess with Lyme, it doesn't play fair" but it does play smart and to outwit it we must be even smarter than it.

I think the problem with the conventional antibiotic treatment is that while it may kill most of the bacteria it doesn't get them all, remember :ph34r: stealth bacteria are stealthy :ph34r: and it leaves people weakened. The bacteria, while knocked back for a while, will return but they may not return to the extent of causing illness for some years and then the illness that appears can seem entirely unrelated.

Over the years we may have symptoms come and go and we may even forget we have ever had those symptoms. I must have read that numb and tingling toes are a symptom ten times and never thought it was me and then I remembered that it does happen to me. The next day when I was walking it happenned. :(

Here is another example, I was given a report with my name on it in large letters, I looked at that report ten times before I noticed that it wasn't my name. I knew I had looked at the name and the name had registered but no connections were made between the fact that it wasn't my name, it was someone else's, it was just one letter that changed the name so it wasn't a big change but what gets me is that I read the name and didn't think that's funny......this is Lyme brain. It gives new meaning to the phrase "going buggy" and I am not laughing about it. It is a real concern to me.

DingoGirl Enthusiast

Andrea - sorry about the kidlets and all the colds. you must get some sleep, Mother Hen!

I don't think I am one of the Lymies.....I have never had chronic physical pain. Just crushing depression and an anxiety that would have caused many to take their lives, and I wish I were kidding. The ONLY thing that kept me alive was faith in God, the hope of a future, and the possibility that I might spend hell in eternity if I took my own life.

Dang, how did two women w/ Lyme Disease ever write books? :blink: I get so stinkin' tired at times that I quit writing journal entries years ago. :huh:

Oh, The 'dogs got creamed again. :lol: Thanks everybody. :P

happygirl Collaborator

i'm about to head out to get my nails done with the bride....woo hoo! i need some pampering.

read all about the lyme, the C, the pain, the fibro...all interesting.

Carla---i do that nose thing to Eric too! have for years, esp up at PSU when it was so cold. :)

hugs to you all....xoxo

AndreaB Contributor
Carla---i do that nose thing to Eric too! have for years, esp up at PSU when it was so cold. :)

I do that too.

Have fun Laura! :)

Fiddle-Faddle Community Regular

Amy Tan would be a wonderful spokesperson for Lyme. We could write to her care of whoever publishes her books...or maybe she has a website?

I wonder if she ever had any gluten problems, too?

DingoGirl Enthusiast

Laura - have a fabulous time! :rolleyes:

Quick question (I am supposed to be planting), and this information I am sure has been covered but I have dingo'd it....is Lyme ONLY caused by ticks?

:huh:

rinne Apprentice
Laura - have a fabulous time! :rolleyes:

Quick question (I am supposed to be planting), and this information I am sure has been covered but I have dingo'd it....is Lyme ONLY caused by ticks?

:huh:

Nope, mosquitos and flies of some sort also carry Lyme.

Laura, glad to see you, have a wonderful time being pampered.

AndreaB Contributor
Quick question (I am supposed to be planting), and this information I am sure has been covered but I have dingo'd it....is Lyme ONLY caused by ticks?

:huh:

From what I've read, it can be carried by fleas (and I think mosquitoes).

TriticusToxicum Explorer
Laura - have a fabulous time! :rolleyes:

Quick question (I am supposed to be planting), and this information I am sure has been covered but I have dingo'd it....is Lyme ONLY caused by ticks?

:huh:

Per the folks in "Happy Valley":

"Although in theory Lyme disease could spread through blood transfusions or other contact with infected blood or urine, no such transmission has been documented. There is no evidence that a person can get Lyme disease from the air, food or water, from sexual contact or directly from wild or domestic animals :blink: . There is no convincing evidence that insects such as mosquitoes, flies, or fleas can transmit Lyme disease."

More here: Open Original Shared Link

From the CDC: Open Original Shared Link

Other Modes of Transmission

Person-to-Person

There is no evidence that Lyme disease is transmitted from person-to-person. For example, a person cannot get infected from touching, kissing or having sex :) with a person who has Lyme disease.

During Pregnancy & While Breastfeeding

Lyme disease acquired during pregnancy may lead to infection of the placenta and possible stillbirth, however, no negative effects on the fetus have been found when the mother receives appropriate antibiotic treatment. There are no reports of Lyme disease transmission from breast milk.

From Blood

Although no cases of Lyme disease have been linked to blood transfusion, scientists have found that the Lyme disease bacteria can live in blood that is stored for donation. As a precaution, the American Red Cross and the US Food and Drug Administration ask that persons with chronic illness due to Lyme disease do not donate blood. Lyme disease patients who have been treated with antibiotics and have recovered can donate blood beginning 12 months after the last dose of antibiotics was taken.

From Pets

Although dogs and cats can get Lyme disease, there is no evidence that they spread the disease directly to their owners. However, pets can bring infected ticks into your home or yard. Consider protecting your pet, and possibly yourself, through the use of tick control products for animals.

Other Transmission

You will not get Lyme disease from eating venison or squirrel meat, but in keeping with general food safety principles meat should always be cooked thoroughly :blink::huh: . Note that hunting and dressing deer or squirrels may bring you into close contact with infected ticks.

There is no credible evidence that Lyme disease can be transmitted through air, food, water, or from the bites of mosquitoes, flies, fleas, or lice.

rinne Apprentice
Amy Tan would be a wonderful spokesperson for Lyme. We could write to her care of whoever publishes her books...or maybe she has a website?

I wonder if she ever had any gluten problems, too?

Check her out at www.amytan.net, from that site:

My case is in many ways typical. Like many, I had little awareness of Lyme disease, for I did not live in what was considered the tick-infested hotbeds on the East Coast. I am a Californian -that’s where I file my taxes- and I live among the hills of San Francisco with its tick-free, concrete sidewalks. For a good long while it did not seem significant that I also have a home in New York, that I weekend in the country, and my main form of exercise is hiking. In addition to trekking in the woodlands of Mendocino, Sonoma, and Santa Cruz counties in California, I have also sojourned to leafy spots in Connecticut and upstate New York. I once loved to sit in the tall grass next to the river, and lean my back against a shady oak tree.

I passed off my early symptoms -a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder- as the unpleasant aftermath of too much airplane travel. I was often tired and jittery, but that, I reasoned, was the consequence of an active and exciting life. Who was I to complain? I had a wonderful life, a great husband, lovely homes, a successful career. I was rarely sick and went to the doctor only for my annual checkup. Even when I came down with the fever, aches and pains of the "flu" earlier in the summer, I had managed to beat it back without developing any of the respiratory sequelae. What a great immune system I had!

When my feet grew tingly and then numb, I mentioned to my doctor that I had had an unusual rash earlier that year. It had begun with a tiny black dot that I guessed might have been a pinprick-sized blood blister. It grew more rounded as it filled, and then I either scratched it out or it fell out on its own, leaving a tiny pit and a growing red rash, which, curiously, did not itch, but lasted a month. Because that rash seemed so unusual, as did my neuropathy, I wondered aloud whether they were related. My doctor said no.

dlp252 Apprentice

Yikes on that quote Rinne! See, one of the reasons why I find it hard to believe I could have Lyme is because I live in California. For six years I lived in Hawaii, and did some camping there...and did the week long hiking thing in Vermont. Once I went camping up north near Napa somewhere. I did spend some time up near Lake Tahoe, but not out in the woods.

rinne Apprentice
Per the folks in "Happy Valley":

"Although in theory Lyme disease could spread through blood transfusions or other contact with infected blood or urine, no such transmission has been documented. There is no evidence that a person can get Lyme disease from the air, food or water, from sexual contact or directly from wild or domestic animals :blink: . There is no convincing evidence that insects such as mosquitoes, flies, or fleas can transmit Lyme disease."

More here: Open Original Shared Link

I looked at the symptoms on that site and the rash they show is the standard bull's eye rash, that is not the rash I had nor is it the rash many other Lyme patients have had, there are actually a few different rashes that go with Lyme. I feel a site like that does a disservice to Lyme patients.

Five years ago in Colorado when the friends I was staying with were diagnosed with Lyme there was lots of research done about Lyme but it was all done through the standard sites, such as the one above, and as a result I was convinced that the bull's eye rash was what I had to be aware of. My rash looked like the Milky Way, it was an expanding spiral on my upper arm and I can remember looking at it and thinking how strange it was and wondering why it didn't itch.

Richard this one is for you:

"OMNIA SUNT FLUXA ET FRAGILIA"

Meaning: "All things are flowing and fragile."

DingoGirl Enthusiast

Richard :lol::lol::lol: Love your editorial emoticons :lol:

that is all very interesting, how the researchers claim that "there is no evidence of" Lyme being transmitted by any of those ways....BUT, look at the terribly small amount of Lyme diagnoses....shoot, dingo'd my thought again..... :blink:

what I mean to say is.....since Lyme seems to be so infrequently diagnosed WHEN IT ACTUALLY IS THERE, how the heck do they KNOW how and if Lyme is transmitted, since they hardly even get it right when it IS there? :angry::huh:

back outside......havign to construct many stakes and police tape lines :lol: around the freshly laid sod that is being TRAMPLED and eaten by dingos - HARUMPH! :angry::angry::angry:

Rachel--24 Collaborator
Miamia, I am like you in that I never get D. I was always round before but now I can't keep weight on, when they weighed me in Calgary I was 117 pounds and I have been scared to get on the scale since then. Maybe 117 doesn't sound so bad but when I weighed 145 pounds I wore a size 8 and felt just fine. Now a size 4 can feel loose and that is beyond strange for me, I haven't weighed this since I was 15. I get really hungry and eat and I eat enough that before I would have gained weight and then I feel "fatter" for a few days but I can't keep eating so much because it hurts and then whatever I thought I gained is gone. :(

I'm another one who never got D but still ended up losing 25 lbs. I gained a good part of it back and am maintaining it pretty well now that I've eliminated all the stuff causing the weight loss. Amazingly for me....it was all the "healthy" foods...my body just does NOT like them...I'm doing ALOT better after giving up on all the stuff like supplements and healthy vegetables. Sounds crazy but what I've learned is our bodies can react to ANYTHING....it doesnt matter if its "suppossed" to be good for us...sometimes it just isnt. Its all verified in my BioSET testing. My body hates all the healthy stuff. :P Not that it likes the bad stuff either but I just had to get over the idea that eating veggies was gonna help me....when it clearly wasnt.

Oh....there has got to be a really HUGE Rachel walking around on that other planet with BIG miamia, BIG Rhonda and Skinny Donna!! The HUGE Rachel is probably taking up ALOT of space on this planet we're talking about. :lol:

So, I think I'm with you in that I think what you're experiencing (the theoretical you) is real but the pain and symptoms are secondary to something that hasn't been discovered in your body yet.

Exactly Beverly....so while all these people are "accepting" their Fibromyalgia diagnosis....the "REAL" cause of their illness is left untreated....so nothing will improve EVER. They will only mask their symptoms with pain killers and other drugs. Its sad because the potential for recovery is there....only its not getting recognized.

Open Original Shared Link

I really wonder what testing they use to be able to state that, if they are the tests that I have undergone that show nothing then I seriously doubt it. This I think really goes to the heart of question regarding the diagnostic standards currently employed within our medical system. The alternative testing I received including the Meridian Stress Assessment clearly showed inflammation in most of my body in my case but none of that is read on their tests. I feel the inflammation as pain and as a deep agitation.

I swear the other day I felt like I had entered a whole new galaxy as I plugged myself into my Energy Wellness machine and vibrated away. :lol:

:lol::lol:

That Energy Wellness machine cracks me up...I can just see you hooking up to it and vibrating wildly. :lol:

Are those things expensive?? I'm gonna ask my Dr. what he knows about them.

I think a Fibro diagnosis consists of having a certain number of "tender" spots. I think there are 18 spots and if you have 11 of them you get diagnosed with Fibro. :huh: Basically they push on the spots to see if they are tender and cause pain. I used to have almost all of the tender spots but with the diet changes and avoidance of chemicals I dont have many at all anymore. I have alot of Fibro. info in my TMJ book so I'll have to go back and refresh my memory about this.

Rachel - you are a FREAK - enjoying the last heat wave :lol: ......OMG, I seriously was almost in tears from it every day.....and when we had those outages.....holy lord......I desperately wanted to move.....

:lol::lol:

YES....but now I'm not the ONLY freak. Simply V likes the high temps. too. :P I was upset because my mom was blasting the air conditioner the whole time....trying to freeze me outta the house....making it feel like winter. I never experienced any of those "brown outs" that were occurring....we never lost power. :) Too bad I wasnt eating ice cream back then. <_<

I'm with Susan.....it sounds like a possible lyme diagnosis for Donna, Carla, Mia, Julie, Bev, Susan. I'm also thinking Judy. Have I missed anyone?

Sheeesh...is half of the Rachelville population gonna end up with Lyme?? :unsure:

How crazy would that be???

Constantly amazed by Andrea, who seems to be able to do it all! ;)

Yeah...she DOESNT have Lyme so I'm thinking she should be the one keeping everything straight. Maybe we are all so amazed and stunned at her abilities simply because its so far beyond anything we can comprehend with our moments of diminished thinking and "dingoing" everything that is of importance. :lol:

Rachel--24 Collaborator
what I mean to say is.....since Lyme seems to be so infrequently diagnosed WHEN IT ACTUALLY IS THERE, how the heck do they KNOW how and if Lyme is transmitted, since they hardly even get it right when it IS there? :angry::huh:

Yeah....what she said! ;)

The people who are researching Lyme and the LLMD's (Lyme Literate Medical Dr.'s) are saying things about Lyme that is in GREAT contrast to what mainstream is saying. I dont think I have to tell you guys who I have the most faith in. ;)

Heck the mainstream Dr.'s are *still* thinking that 3-4 weeks of antibiotics will do the trick and Lyme is "cured"....even though all the scientific evidence and case histories prove otherwise.

Oh....and if you still have symptoms after 4 weeks of antibiotics...well...it cant be Lyme....so it must be Fibromyalgia!!! :lol::lol::lol:

back outside......havign to construct many stakes and police tape lines :lol: around the freshly laid sod that is being TRAMPLED and eaten by dingos - HARUMPH! :angry::angry::angry:

:lol::lol:

dlp252 Apprentice
Yeah...she DOESNT have Lyme so I'm thinking she should be the one keeping everything straight. Maybe we are all so amazed and stunned at her abilities simply because its so far beyond anything we can comprehend with our moments of diminished thinking and "dingoing" everything that is of importance. :lol:

Yep, I dingo what I just read, lol.

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      how much gluten do I need to eat before blood tests?

    5. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

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    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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