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

CarlaB Enthusiast
Carla, you were feeling really bad for awhile there when you started the supplements, saunas, salt, etc. You could have been herxing and everything you did could have helped the test results since you got tested right around that time.

I did add to the supplements I was taking and added the sauna; however, I felt bad, which is what prompted me to do these things. The feeling bad came first, then the salt and sauna. So, it could have helped, maybe I herxed, but I already felt bad ... still do ... so it's hard to tell.

Andrea's right, you'll get there.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator

My mom brought home an electric heater from her work and I tried it out last night. I reacted to the freakin thing as soon as I flipped the switch. :blink:

Stupid heaters :angry:

So I went and got myself an electric blanket. Its PERFECT. :D

I was soooo toasty last night. I'm always freezing while I sit at the computer but now I'm just gonna wrap the electric blanket around me and stay WARM. :)

I got warm slippers too and new gloves and long johns and some cute warm PJ's. :D

You should have seen me at work the past 2 days....I even wear a scarf now. I am sooooo warm.

happygirl Collaborator

x

DingoGirl Enthusiast

Laura....very frustrating. Heinous, even! Yes, he sounds old and confused......not what you need, sadly. What a long and tortuous day. Harumph. :angry:

Carla.....I guess we're not even SHOCKED any more when someone has Lyme! I expect that so many on this forum have it and don't know. Crazy. but, I am excited for you (yes, how weird we are :lol: ), and now you can work with something.

Where is our dear Lyme Lady Rinne? Oh she must be really not feelign well at all.....

Rachel...yes, hang in there. And stay warm, you heated winter bunny. :lol:

Must continue shampooing carpets. the most HEINOUS thing of all. :angry::angry::angry:

'night everybody. wub you. :wub:

AndreaB Contributor
So I went and got myself an electric blanket. Its PERFECT. :D

I was soooo toasty last night. I'm always freezing while I sit at the computer but now I'm just gonna wrap the electric blanket around me and stay WARM. :)

I got warm slippers too and new gloves and long johns and some cute warm PJ's. :D

You should have seen me at work the past 2 days....I even wear a scarf now. I am sooooo warm.

Rachel,

That sound really comfy.

I can just see you at work and everyone looking at you like this :blink: . :lol:

Must continue shampooing carpets. the most HEINOUS thing of all. :angry::angry::angry:

'night everybody. wub you. :wub:

Wanna come do mine next. :ph34r::lol:

Night Susan. :wub:

diamondheart Newbie

Carla, congratulations on getting a diagnosis! What a relief, eh? Good luck on the treatment.

I went for Bioset treatment #3 today. The phenols cleared in two treatments! I know some other stuff was cleared, but I didn't really pay attention. I think metals were cleared too. Even though I have about 4 mercury fillings, they don't seem to be causing me any problems, but I'll have to check with my acu about that next visit. I try not to think about it too much, because I don't want to get disappointed if it doesn't work.

My acu said which foods do you want to clear first? I said, I'm on foods already?! Cool! We have to do dairy and gluten last since they are the hardest to clear. Soy will be second to last. So we picked the "easy" ones (whatever that means because I don't really know how Bioset works). Eggs and nuts were cleared today. I have to stay away from them until the next time I see him so he can see if it works. Anyways, I am cautiously optimistic!

Claire

Rachel--24 Collaborator

OMG.....With everything going on I totally forgot to post the link to this petition.....which is very very important to me and to *everyone* who has Lyme.

Please, please please, take a moment to sign.

This is about our right to receive treatment that will make us well again. As it stands right now they are restricting Dr.'s from prescribing anything more than 21 days of antibiotics for Lyme Disease. This will NOT effectively treat Lyme. All of the evidence clearly shows that in late-stage Lyme or when the infection has become established.....long-term antibiotic treatment is needed. The new restrictions came into effect in October of this year....the same time that I was diagnosed. :(

Here is a link to another thread with more details...

Open Original Shared Link

Heres the info I recieved.....

We Must Take Action NOW!

I generally attempt to focus my energies on understanding the disease process and potential treatment options around Lyme disease and have not been quite as involved in the political side of the disease. Sadly, at this point, I do not think it is possible to remain uninvolved on that front.

With the publication of the IDSA (Infectious Disease Society of America) guidelines in October, our ability to get diagnosed and then appropriately treated has been challenged even further. I truly believe that these new guidelines threaten the lives of many.

I applaud both the LDA (Open Original Shared Link) and ILADS (Open Original Shared Link) for their efforts to provide information and guidelines which focus on the quality of life for the patient – and, of course, on science! LDA and ILADS held their individual conferences on the same weekend in October and though there were limited new treatment options, the event reinforced how important these two organizations are to our ability to choose an appropriate healing journey and gain access to appropriate treatments.

My call to action for you is simple.

Please take a moment to sign the petition provided by the LDA against the IDSA guidelines. I cannot stress enough my strong belief that if anyone chooses not to sign this petition, recognize that it may mean that you lose your right to choosing a treatment option that can provide you with a better quality of life. It is as simple as that. I cannot envision why anyone that either has or knows someone that is touched by Lyme disease would not sign this petition.

The petition currently has just under 20,000 signatures. However, this is not enough. The original goal was 50,000 signatures. So, PLEASE, do two things for me. First, go sign the petition yourself and second, send this information to everyone you know asking them to do the same. Our lives depend in large part on our continued access to treatment based on choice.

Please, sign it today!

Open Original Shared Link

A big thank you from me to all of the people who take the time to sign this.

WUB you guys! :wub::wub::wub:


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor
A big thank you from me to all of the people who take the time to sign this.

WUB you guys! :wub::wub::wub:

Done for the two voters in this house.

Keep us posted on how it's doing if you will. :D

Rachel--24 Collaborator
Done for the two voters in this house.

Keep us posted on how it's doing if you will. :D

Thanks Andrea! :D

I dont know how to find out how many people have signed?? :unsure: I guess I can email Scott (betterhealthguy) and try to find out....maybe next week.

DingoGirl Enthusiast

Can I sign my dogs' names? I mean, they will never know................ :lol::lol::lol:

I did sign it. :) I'll see if the dingos will sign it also. I think they will. They do what I say, I am the provider of food and treats and assorted outings. :P

Rachel--24 Collaborator
Can I sign my dogs' names? I mean, they will never know................ :lol::lol::lol:

I did sign it. :) I'll see if the dingos will sign it also. I think they will. They do what I say, I am the provider of food and treats and assorted outings. :P

:lol::lol:

I think Annie and Tika definately wanna sign this....maybe you can just STARE at them until they do it! :lol:

Thanks Susan :wub:

AndreaB Contributor

It had a number next to the signing spot. 19,000 some odd.

Rachel--24 Collaborator
It had a number next to the signing spot. 19,000 some odd.

Oh...ok...DUH! :lol:

What would I do without you Andrea?? :P

Rachel--24 Collaborator
Rachel, When life calms down a bit, I'll send you some of my not looking good pictures. When you said "I only have a couple pictures from when I was around 95 lbs. last year...I HATE looking at those pics! I think I look scary and grotesque and HEINOUS!! " ---- that is honestly how I am.

Laura....I'll send you mine too...I only have like 2 pics when I was totally thin. I wasnt doing much at the time so there was no reason to break out the camera....I certainly wasnt in the mood for posing for pics. :(

I think I was under 100 lbs. for about a year. I only have been able to maintain my weight since I stopped taking supplements at the beginning of this thread. I've been stable at 110 for about 7 or 8 months now. You'll get there too. :)

I used to be closer to 120 when healthy but I dont look sick at 110 and I dont stress over my weight anymore....which is good. :)

I wouldnt turn down another 10 to 15 lbs. though... ;)

I'm really bummed about your Dr. appt. :(

Dang....I was so hopeful for you. At least you got some tests done but definately try to find someone not as old....and not as slow....6 hours??? OMG....that has to be some kind of record. :blink:

I know you already got some recommendations for other Dr.'s so I know you'll be ok. It just sucks when you look forward to an appt. and then end up with someone not as good as you were thinking and hoping. Its just a big letdown and I'm sorry it happened to you today. :(

AndreaB Contributor

x

Rachel--24 Collaborator

Awww....poor Seth. I hope his boo-boo goes away fast. :(

I think I know of two other kids who might be in a little bit of trouble right now. <_<

DingoGirl Enthusiast
Ok, I'm a livid Mommy right now.

About 1 hour ago the kids were chasing after Seth and he fell and hurt himself. I comforted him and he was fine. Well, now he has a golf ball size bump (about 1/3 of a golf ball) on his forhead with a scrape. He must of hit the door frame.

I'm am definately not a happy camper. :angry::angry::angry:

Yes, poor Seth. :( I say, big spankings for the other two. ;):lol: (you all know that I am not a parent - except to dogs - and they do get a gentle swat on the rump now and then) :huh::lol:

AndreaB Contributor

At least we already had our pictures taken.

Micah fell and cut himself on the eyebrow the day after he turned 1. We had just had our pictures taken before that as well. He has a scar from that one.

CarlaB Enthusiast

It's amazing kid survive their childhood ...

I'll take a look at that petition. I signed one petition, but I don't know if this is the same one.

I'm still in shock over my firm diagnosis! All these years of feeling bad and thinking it was normal ...

jerseyangel Proficient
I'm still in shock over my firm diagnosis! All these years of feeling bad and thinking it was normal ...

I understand--that was exactly the way I felt when I found out I had Celiac! I'm glad you finally know the source of your illness--and now can move forward towards better health :)

happygirl Collaborator

x

AndreaB Contributor

Patti,

YOOHOO......have you had your appointment yet today????

Carla,

How's your family feel about your diagnosis????

CarlaB Enthusiast

Adam's happy to have answers. He was as sure as I was that I had it.

Morgan is worried that she has it, too. Chloe is worried that she will have to have blood taken. I don't know that anyone else is really thinking anything.

My dad is glad I have some answers.

AndreaB Contributor
by the way, how long did it take everyone's results to come in?

I believe Rachel was 2 weeks clear up to about 4 weeks for Rhonda....but she's in Canada. Carla was about 3 weeks so that would probably be about right for you, maybe a little more since we have Christmas just before that 3 weeks and New Year just after.

Morgan is worried that she has it, too. Chloe is worried that she will have to have blood taken. I don't know that anyone else is really thinking anything.

If you've had this from childhood then it is possible that any of the children could have gotten it inutero. I don't know the protocol for getting family members (children) tested to see about the lyme being passed on if a parent has it. With it being to tricky and sneaky I wonder if any tests would be positive. Maybe it is something that would need to be tested periodically......that would sure add up. :(

I believe you said Chloe has celiac, has tested positive for it. Does that mean that Adam has a celiac gene or is she one of the few that have dq1 with positive biopsy?

CarlaB Enthusiast

Andrea, Chloe tested positive with Enterolab. We are going to be doing a gluten challenge with her over Christmas break. We had not seen the improvement with her that we had expected to see, so now that she's been gluten-free for a few months, it's a good time to challenge it. She never had the biopsy.

I may have confused you because sometimes I say celiac instead of gluten intolerance, which is more accurate for Chloe and I.

I wanted to encourage all of you to send out that petition to friends to be signed. Even those who don't have Lyme are certainly at risk and would want treatment available.

I sent it out to almost my whole address book this morning. One lady from Texas wrote me back asking me about symptoms. Her son is being tested for mono, but has spent the past two years in Connecticut! Just receiving that petition may actually help someone get diagnosed!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,170
    • Most Online (within 30 mins)
      7,748

    piloc39217
    Newest Member
    piloc39217
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
    • Scott Adams
      Around 9% of celiacs cannot tolerate any oats, even gluten-free oats. It might be worth eliminating them for a few months, then get re-tested.
    • thejayland10
      I only eat certifed gluten-free products but a lot of which are processed. Could there be trace gluten in those or is that very unlikely? 
    • Scott Adams
      For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes (you may want to avoid oats):    
×
×
  • Create New...