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Omg...i Might Be On To Something

Rachel--24

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CarlaB Enthusiast
CarlaB
Posted
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.

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author

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
happygirl
Posted

x

DingoGirl Enthusiast
DingoGirl
Posted

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
AndreaB
Posted
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
diamondheart
Posted

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
Rachel--24
Posted
  • Author

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:

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AndreaB Contributor
AndreaB
Posted
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
Rachel--24
Posted
  • Author
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
DingoGirl
Posted

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
Rachel--24
Posted
  • Author
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
AndreaB
Posted

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

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
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--24
Posted
  • Author
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
AndreaB
Posted

x

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

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
DingoGirl
Posted
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
AndreaB
Posted

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
CarlaB
Posted

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
jerseyangel
Posted
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
happygirl
Posted

x

AndreaB Contributor
AndreaB
Posted

Patti,

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

Carla,

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

CarlaB Enthusiast
CarlaB
Posted

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
AndreaB
Posted
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
CarlaB
Posted

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!

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

      By catnapt · Posted

      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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