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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
      SkinSafe

      By trents · Posted

      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      diagnostic testing variance

      By trents · Posted

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