Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

happygirl Collaborator

x


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
Stress has nearly killed me.....try going five days - I SAID FIVE ENTIRE DAYS - without one minute of sleep due to abject panic, your pulse almost double its normal rate....and then showing up at 7 a.m to teach the first day of school for a second-third combination class.....that was in 1992 and I"ve never been the same.

Susan....since I got sick I cant make it 24 hours without sleep. I've done it but I've paid dearly for it...I become highly symptomatic if I try to pull an all-nighter. I'm thinking its another thing that brings immunity down and it seems to be a pattern....low immunity = symptom FLARE-UP.

I dont necessarily get fatigued....sometimes I just wanna stay up but my body does NOT like this at all...so I make myself go to bed cuz I know the effects if I dont. :(

I think I am going to have testing done by one of the holistic clinics here..and just have them test me through igenix. get all the testing done at once. call every company and have them send me their kits for food allergy/intolerances. get all the blood draws over with.

You are such a "go-getter". :)

The more answers you can get the better....so I'm all for it. I think its a good idea. Are you gonna have several different labs test you for food intolerances? I would probably just go with the most reliable lab and get the most extensive test.....rather than paying for the same test several times. Also the results are gonna vary....coming from different labs....it could get confusing. :wacko:

happygirl Collaborator

x

AndreaB Contributor
After my rant my mom said she will tell him everything tomorrow. :ph34r:

Boy, I'd be mad too. Hopefully she'll see the guy tomorrow.

Sounds like a good plan Laura. Keep us posted.

Fiddle-Faddle Community Regular

You know, I was wondering, if (in the interest of scientificness), we should just conduct some of our own research here. Maybe we could tally up everything we have in common--and everything we don't--and see what the numbers spit out at us. Surely we could come up with something more meaningful than what we've been offered by the medical community.

For example, I keep wondering about the Lyme thing. I DID have some kind of insect bite in 1988--and there was not exactly a bulls-eye, but a huge red ring around the bite site, that got bigger and bigger,a nd after a few days, I ended up in the ER because I was in Boston and coudn't find a doctor who would see me in less than a month. The doctor there was from Burma (I think it's called Myanmar now?), and she said it was not Lyme as it wasn't the classic bullseye, she said it was cellulitis--but she did hook me up immediately to IV antibiotics, and I had to take antibiotics for 2 weeks after that.

I've never had any of the symptoms you LymeLadies have--except for mild celiac symptoms. But I can't help wondering--could it have been Lyme after all? If so, those antibiotics must have saved me (and here I am, always so against antibiotics!).

There are enough of us on here, we ought to be able to come up with some very interesting statistics.

rinne Apprentice

Fiddle Faddle, I think that I was initially bitten back in 1984 in the San Francisco Bay area and that I was misdiagnosed but treated with antibiotics and the antibiotics slowed it down, in the following years I did have some symptoms but they were relatively mild. It was in 2003 when I was bitten again that tipped me toward ill health but I had been under some physical stress for the year and some before that, I also see it as related to peri-menopause in my case. The particular timing of the illness was also very stressful for different reasons.

:ph34r::ph34r::ph34r: Indeed....incredibly crazy and spooky and surreal and yet somehow, fated and meant to be. :)

Isn't it marvelous? This deep magic of already connected.

I am mad at my mom right now. :angry:

......

After my rant my mom said she will tell him everything tomorrow. :ph34r:

And when she tells him now I am sure he will hear what she is saying, good for you. I feel the same way, we have a responsibility to speak up.

I think stress is a HUGE factor. ....

So, it's interesting that you can have an underlying disease and that the symptoms can be dormant until times of stress bring them out.

I do have joint pain ... in my left knee, my thumbs, and, of course, my jaw and neck (TMJ).

I see how even small stresses cause a kind of panic that is not good.

Lyme and TMJ seem to have a connection on the Lyme boards. :(

I had some brilliant thought and some sort of epiphany as I was reading and thinking, and, like a vapor, it left my sieve-like brain and so I have nothing of any import to say right now. :blink:

I had the very same one. :ph34r::lol::lol:

###

Laura I am so glad you are going to have a thorough look at the possibilities through labs that can be trusted.

Well ladies and gentlemen, I ventured into Lyme Alive territory and plugged in the Energy Wellness machine, hit some buttons, took hold of aluminum rods and turned the dial up until I felt a tingling running up my arms and through my head, my ears popped and I heard hissing sounds, all of this within one minute. For a short time afterwards I heard a ringing in my ears but then it stopped and I felt basically the same but perhaps just a shade brighter. I'm excited about using it again. :lol:

For anyone curious Royal Raymond Rife was the inventor of the original one and from it many versions have been created, I think the Bioset may be related but I don't know enough about it to be sure. I do know the Rife machines were based on creating frequencies that killed bacteria in the body and that his machines were used to cure cancer which he identified as a bacteria way back when. I read an article recently, originally published in time magazine in 1957, that identified spirochetes (LYME) in all MS patients and the hope that this would mean a cure for MS. :huh: Have I said all this before? I will not go back to find out. :lol:

TriticusToxicum Explorer
Rachel....the ONLY good thing about all that you/we/any of us has suffered is that possibly we can help other people - I believe we even have a moral responsibility to do it. I mean, what is the point to any of this if we can't reach a hand into the dark forest in which a sufferer is stuck, and show them that there is a way out. So.....yeah, I'd be mad at my mom too, if she did that. Good thing she'll talk to the guy.

Stanford? That's the best they can do??? :angry: Doctors need to smugly give an answer, even if they don't know - - - and most patients accept this because it came from A DOCTOR....and will continue to naively suffer. It is completely heinous.

I had some brilliant thought and some sort of epiphany as I was reading and thinking, and, like a vapor, it left my sieve-like brain and so I have nothing of any import to say right now. :blink:

I think the purple highlight was "of import" :)

I wish I had some scientificness to add. Alas, being a "half brained" male, my scientificness is limited to the thermodynamics of flatus and chemistry of chocolate chip cookies. However, I would like to offer this - You are ALL such an inspiration and I wish you all better health and piece of mind.

I don't know if this thread would make a better Discovery Channel soap opera, or Lifetime 26 part miniseries, but I know I'd watch. :) Cyber hugs and positive thoughts to all :) The resident (XY) goof.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dlp252 Apprentice
Hmmm....my bite was in the vicinity of my left shoulder. I would say my most affected joint would be my jaw joint (TMJ)....would this be the "closest" joint?? Interestingly all of my problems have been most severe in this region....from my shoulders up. The left side has ALWAYS been much worse. My neck stiffness is probably 80% on the left and only 20% on the right.

:o This describes me EXACTLY...PT guy pulled my head too quickly to the left yesterday and I nearly jumped off the table. :P If I was bitten on my hiking trip to Vermont years ago, it would have had to been on my head somewhere, cuz I never saw one on my body...I wouldn't have noticed if it was in my hair, which is usually at least shoulder length.

Completely off topic---sorry to x

I don't know directly, but my old chiropractor used to use them...she gave me some info eons ago, but I never did any testing with them.

CarlaB Enthusiast
Carla...I'm feeling anxiety about the wait for your Lyme test. OMG...I'm gonna have anxiety for the results of *everyones* tests. :ph34r:

:D Thank you. You made me smile!

:lol::lol::lol::lol: you could get in lotsa trouble for that here...... :o:lol:

Okay, I'm a Republican (to me it's just the lesser of two evils, I don't particularly like either party) ... but even I can admit that Clinton was more fiscally conservative than Bush, not to say I liked Clinton at all ... so you won't get any flack from me ... but judging by how well religious arguments are taken around here .... hmm.

dlp252 Apprentice
Symptomatic presentations of Lyme disease include:

Fatigue

Low grade fevers, "hot flashes" or chills

Night sweats

Sore throat

Swollen glands

Stiff neck

Migrating arthralgias, stiffness and frank arthritis

Myalgia

Chest pain and palpitations

Abdominal pain, nausea

Diarrhea

Sleep disturbance

Poor concentration and memory loss

Irritability and mood swings

Depression

Back pain

Blurred vision and eye pain

Jaw pain

Testicular/pelvic pain

Tinnitus

Vertigo

Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)

Headaches

Lightheadedness

Dizziness

:o:o Ya'all know I have ALL THOSE symptoms...sheesh! <_<

CarlaB Enthusiast

Sounds like a good idea to me. I think medicine has just all become too specialized. The primary care aren't trained for all this stuff, so they refer you. The GI can give you meds for your symptoms, but not find the cause. Same thing with other specialists. We have to be our own advocate these days.

Canadian Karen Community Regular
i start next week (election night) but had some today....just had explosive diarrhea...will explain later (long story, imagine that)

xoxo

I can sooooo relate to that!!! B)

:D Thank you. You made me smile!

Okay, I'm a Republican (to me it's just the lesser of two evils, I don't particularly like either party) ... but even I can admit that Clinton was more fiscally conservative than Bush, not to say I liked Clinton at all ... so you won't get any flack from me ... but judging by how well religious arguments are taken around here .... hmm.

Actually, I liked Clinton...... I had much more of a "comfort level" up here in the Great White North as he seemed to have a very good head on his shoulders..... not to mention........ :rolleyes:

Monica must have used Altoids........ B)

CarlaB Enthusiast
Actually, I liked Clinton...... ..... not to mention........ :rolleyes:

Monica must have used Altoids........ B)

Yeah, shoulda guessed you'd like him. :lol::lol::lol:

rinne Apprentice

Richard, that was very cute, perhaps a miniseries. :lol:

:o:o Ya'all know I have ALL THOSE symptoms...sheesh! <_<

Me too.

I can sooooo relate to that!!! B)

Actually, I liked Clinton...... I had much more of a "comfort level" up here in the Great White North as he seemed to have a very good head on his shoulders..... not to mention........ :rolleyes:

Monica must have used Altoids........ B)

:ph34r::lol::ph34r:

Nice to see you Karen. :)

CarlaB Enthusiast

This is so funny, I had an epiphany, then forgot it ... did I just "Dingo" an idea??? :lol::lol:

Anyway, it came back, so it must be meant for all of you, too. I never realized people might never have been bitten by a tick, or that they could say, I got bitten in x year. For me, we lived out in the country for a few years when I was about 9-12. Ticks were a way of life! There were times I'd have more than one attached to my head! I never would have seen a rash because of my long, thick hair. I had them constantly. My step-father would burn them off, which I've read is the worst and most dangerous way to remove them from a Lyme perspective. I guess it would be a surprise if I don't have Lyme ... but I'm not jumping to any conclusions ...

dlp252 Apprentice

I actually think I might do the BioSet thing just to see what it says. If that indicates Lyme at all, maybe I'd pursue it...I don't know if the HN doctors can test for it since they referred Rachel to someone else...I'm debating (with myself, lol) whether to give the mercury removal and treatments at HN a few more months to work, or just go see what's up now.

About the antibiotic treatment for Lyme...are they specific antibiotics, cuz I've surely had plenty of antibiotics during the last 4 years...an astonishingly mind numbing amount...one course was 4,000mg per day of augmentin for about a month...maybe that kept any symptoms (if it was/is Lyme) from being worse.

About the stress thing...always had a fair amount of stress, but 10 years ago is when everything blew up. We had a huge stressful thing at work...we're a lawfirm in Silicon Valley and deal with a lot of internet .com companies, so our business was growing faster than we could add people to handle it. I was regularly working 12 hour days or more and sometimes 6 days a week or more. Then I lost two really good friends (not death, lol, one moved to a different state and the other became a client from h*ll) who would have been my support base for what was about to come...from 1995-1996 I lost seven members of my family, first my grandmother, then the next month a favorite aunt, then the following month another aunt...then my father, uncle and aunt were killed in a car crash...the stress at that time was unbelievable. My sister and I were named co-excutors of my dads stuff, and having to deal with the legal issues at that time was unbearable...especially on top of having just lost two friendships, and the stressful time at work. Then I found out that another aunt had died, and no one told me. Looking back, it's no wonder my health went down hill after that. Anyway, my hiking trip in Vermont was just before all this happened...I think in 1994 or 1995--we hiked through the woods and I never wore a hat, but did wear long sleeves and long pants/jeans. Not long after that I started getting repeated bouts of bronchitis, but nothing too serious and started getting really tired and worn down feeling. It wasn't until after my hysterectomy in 2001 that my health really took a bad downturn though developing environmental allergies to nearly everything they tested me for--never had a single allergy before also started having chronic sinus infections and the fatigue was extreme....does that make any sense, lol? :blink:

Yes, love the new terminology...dingo an idea! :lol:

rinne Apprentice

I think these ticks have been with us forever and that we have changed and changed them in doing so. Our shift to a highly processed diet loaded with sugar and chemicals is, I believe, like steroids for the bad bacteria and for some of us that bad bacteria is Lyme and for others it is Cancer and for others.... so yes Carla, I think many of us may have been bitten as children or were born with it and that our basic life vitality has carried us along until our bodies met stresses that it couldn't manage. Now the stresses might have been mercury, another tick bite, a broken heart, a car accident, etc. but the critical thing is that at that point we begin tipping began toward ill health.

What grieves me is to see the beginnings of ill health in children's eyes. I know that when we were children we glowed with vitality but I do not see that vitality in children who are eating highly processed diets and yet when I hear of people in their twenties struggling with serious health issues I am still shocked.

Dingo an idea, another Rachelville word. Yeah!

DingoGirl Enthusiast
Well ladies and gentlemen, I ventured into Lyme Alive territory and plugged in the Energy Wellness machine, hit some buttons, took hold of aluminum rods and turned the dial up until I felt a tingling running up my arms and through my head, my ears popped and I heard hissing sounds, all of this within one minute. For a short time afterwards I heard a ringing in my ears but then it stopped and I felt basically the same but perhaps just a shade brighter. I'm excited about using it again. :lol:

:blink: Rinne, it sounds mildly like an out-of-body experience :lol: EVery time I have one ;) I always tell people, I think I just had this, dang, I thought it would be so much more fun than it was.... :lol: And they crack up.

I think the purple highlight was "of import"

I wish I had some scientificness to add. Alas, being a "half brained" male, my scientificness is limited to the thermodynamics of flatus and chemistry of chocolate chip cookies. However, I would like to offer this - You are ALL such an inspiration and I wish you all better health and piece of mind.

I don't know if this thread would make a better Discovery Channel soap opera, or Lifetime 26 part miniseries, but I know I'd watch. :) Cyber hugs and positive thoughts to all :) The resident (XY) goof.

The funniest goof and we adore you, yes, a miniseries, you can be the narrator. And certainly the thermodynamics of FLATUS is of great import :lol:

This is so funny, I had an epiphany, then forgot it ... did I just "Dingo" an idea??? :lol::lol:

OMG Dingo and idea...... :lol::lol::lol: It's perfect, I do it all day long.....

Dear Gawd, today I start my new job....I am miserable about it....no sitting down at all, standing on cement floor, and last time I had that work experience (climbing gym), I was nearly paralyzed in lower back with pain.....I probably should get x-rays, something is egregiously wrong down there.....perhaps I shortened my spine or rearranged some discs when I used to load monstrous amounts of weight on the bars for squatting....ha ha, that sounds funny.....:)

And not to mention my brain. :( The thought of learning the cash register makes me.....positively vomitous. And I had a terrible dream last night about some heinous job w/ a cash register.....and me messing everything up, and the people said, we thought she was so smart, and look at this..... :(

Carla, Donna, and Allison.....wow. Are you also Lyme Ladies???? :huh: Dang, all signs would point to yes....

gotta get ready for something I deeply dread.....a new job. I feel sick. I wanted to wait a few more months before working......could use your prayers. I am going to cry. Maybe throw up. It is sad that I am so worked up over such a menial job. But it's all my poor enfeebled Dingo brain can handle (dingos are much smarter than I). Testing w/ psychologist on exactly why I can't process verbal information resumes next week. Today I am not sure whether to take a Ritalin, or a tranquilizer. or both? :lol::huh:

edit - Rinne, yes, I think that's brilliant, our chemicals/sugars have changed the TICKS and other elements of the food chain.....just think about the ocean creatures found, off Southern California, to have both male and female reproductive organs.....from all the hormones in our food.

dlp252 Apprentice

Susan, you'll do fine at your job! The cash registers are all computerized, I'm sure it's mostly automated. AND, I'm assuming you won't be working alone! Praying just the same. :P

CarlaB Enthusiast

Susan, you'll do fine at your new job!

I had a retail job at a mall, then moved and got another retail job at a mall. I kept ringing things up wrong and had to correct it. The problem was, and this took going back to the first store to figure out, that one cash register started with the 123 across as the top three numbers, and the other had the 123 start at the bottom with 789 at the top! Other than that the cash registers were identical! Now, why would they do that?

jerseyangel Proficient

Susan,

You'll be fine today--after you get there and settle in some. I really understand how you're feeling now--I would be the exact same way!

One thing we all know is that that company is very lucky to have you--we're all behind you, sending good, positive, productive vibes! Go forth and conquer :lol: (The first day is always the hardest--just get through today ;) )

DingoGirl Enthusiast
I had a retail job at a mall, then moved and got another retail job at a mall. I kept ringing things up wrong and had to correct it. The problem was, and this took going back to the first store to figure out, that one cash register started with the 123 across as the top three numbers, and the other had the 123 start at the bottom with 789 at the top! Other than that the cash registers were identical! Now, why would they do that?

OMG Carla.....this is one of the things that they do IN HELL.....that, and excel spreadsheets, they would do this to torture you, that is why..... :blink::blink::blink:

scared.....hold me.......... :huh:

CarlaB Enthusiast
OMG Carla.....this is one of the things that they do IN HELL.....that, and excel spreadsheets, they would do this to torture you, that is why..... :blink::blink::blink:

:lol::lol::lol: My bird is looking at me while he's eating his glutenous bird food like I'm crazy because I'm sitting here laughing!!! :lol::lol::lol:

DingoGirl Enthusiast

a drive-by....here's a quick joke I got this morning.....had to share.....

A woman calls her boss one morning and tells him that she is staying home because she is not feeling well.

"What's the matter?" he asks.

"I have a case of anal glaucoma," she says in a weak voice.

"What the hell is anal glaucoma?"

"I can't see my ass coming into work today."

:lol::lol::lol:

'bye everybody........ :(:ph34r::o

TriticusToxicum Explorer
OMG Carla.....this is one of the things that they do IN HELL.....that, and excel spreadsheets, they would do this to torture you, that is why..... :blink::blink::blink:

scared.....hold me.......... :huh:

No, in HELL everyone works for RGIS (they inventory grocery stores and retailers). I know because I worked part time for them (PURGATORY). They give you an adding machine type thing that hangs from your belt, spin you around 5 times and stick you in an aisle to count all of the canned cat food, or ramen noodles, or worse yet all the unmentionables at Victorias Secret (i'm not good at re-folding underpants..sorry :o ) I cursed my ex-girlfriend (Ms. Parking-Ticket /Ms. I'm-broke-can-you-charge-this-I'll-pay-you-back-later) every late night and weekend hour I spent working for them :angry:

I'm certain that your charm and character will serve you well today. No good luck from me - no luck needed - Knock 'em dead!! ;)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,346
    • Most Online (within 30 mins)
      7,748

    Muffintops
    Newest Member
    Muffintops
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
    • Philly224
      Thanks again everyone! Twenty mins on here way more helpful than both Dr's combined 😅
    • trents
    • trents
      I would go for four weeks to ensure a valid test, if you can tolerate it, that is.
×
×
  • Create New...