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

Susan, I'd skip the hot chocolate and Bailey's and go for hot tea, lemon juice and whiskey!


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
Rachel, is there something AT HOME that's making you sick? Mold, maybe?

Nope....theres no mold. The dust from the heater at home and at my mom's house has been making sick since the heater started being used a couple weeks ago. I'm always sick...no matter where I go though. I was just referring to noone was wearing any strong perfumes or anything like that at the party...so I didnt get a really bad reaction to anything and was able to enjoy myself. :)

AndreaB Contributor

Susan,

I hope this passes quickly for you. Enjoy your restful day. :)

Rachel--24 Collaborator

Lyme Disease in my area....bay area, CA.

Open Original Shared Link

Open Original Shared Link

Green said a more reliable screening is the Western blot, which checks for 10 to 12 antibodies associated with B. burgdorferi - several more than the ELISA. Lyme antibodies vary depending on where the bacteria have settled in the body. Many of the variations that can be detected by the Western blot do not show in the ELISA. As a consequence, all Lyme patients with false-negative ELISA results will never receive the test many experts feel is the only reliable non-clinical method of testing for Lyme disease.

"If we had an AIDS test that missed 50 percent of all AIDS patients, people would be screaming on the Capitol steps in Washington," Stricker said. "Because it's Lyme, no one seems to care."

happygirl Collaborator

x

AndreaB Contributor

Somebody's been doing more research. :D

Hi all! :D

L,

Was your appointment this week with the new doc? I spaced it......sorry. :(

happygirl Collaborator

x


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
what else do we have this week?

I have 3 appts. this week. My big appt is tomorrow.....when I'll get the results for co-infections.

Tues and Thurs. I have Bioset.

happygirl Collaborator

x

AndreaB Contributor
I have 3 appts. this week. My big appt is tomorrow.....when I'll get the results for co-infections.

Tues and Thurs. I have Bioset.

Can't wait, can't wait. Is your appointment after work?

Rachel--24 Collaborator
Tomorrow is my big day for......

ERIC MOVING HERE :) :) :) :) :)

YAY!! :D

Yes, I'm sure Happygirl is gonna be really happy to have her hubby back full-time. :):)

My appt. isnt till 4:30....I'm gonna post and let you guys know how it went but it wont be until evening time. My mom's gonna go with me this time. :)

miamia Rookie
I have 3 appts. this week. My big appt is tomorrow.....when I'll get the results for co-infections.

Tues and Thurs. I have Bioset.

Rachel-

wow I am looking forward to your appt. I can't wait to find out the results- although I guess it will be late my time becasue I'm in NY.

Andrea-

no major appts for me this week just biofeedback, but hopefully fingers crossed some of my test results. And I finish my candida mediciene-

oh Rachel I am on diflucan and I did have my liver checked when I had the other blood work done and everything came back fine- thank god

Ohhh, Rachel, tomorrow will be a big day for you. Please post as soon as you are up to it. I'll be thinking of you. Hugs!

Tomorrow is my big day for......

ERIC MOVING HERE :) :) :) :) :)

happygirl will be VERY happy! I go to work, and he will be here by the time I get home!

Laura-

Thats great- good luck concentrating on work- I'm sure that will be nearly impossible.

I hope your appt on wednesday goes well - is that the one with Dr. Levin. I googled him he sounds good.

Miamia

jerseyangel Proficient

Hi Andrea :)

I have an appt with a new doctor on Wednesday. Over the phone I was told they would discuss leaky gut with me. We'll see...

Also, I'm calling the Gyn this morning about this hideous pain. I'm thinking it's due to either my fibroid or the ovarian cysts. I was doing some research, and both can cause this kind of pain. Can't blame this on food or anything--it comes in cycles.

I will probably end up having surgery, but I'm at the point where I'll do it.

I'm so excited and happy for Laura!!

Mornin' everyone! :D

miamia Rookie
Hi Andrea :)

I have an appt with a new doctor on Wednesday. Over the phone I was told they would discuss leaky gut with me. We'll see...

Also, I'm calling the Gyn this morning about this hideous pain. I'm thinking it's due to either my fibroid or the ovarian cysts. I was doing some research, and both can cause this kind of pain. Can't blame this on food or anything--it comes in cycles.

I will probably end up having surgery, but I'm at the point where I'll do it.

I'm so excited and happy for Laura!!

Mornin' everyone! :D

Patti-

I am sorry to hear you are still so uncomfortable- hopefully you will get some answers today from your gyn.

Are you going to be tested for leaky gut- have you ever been ?

I hope today is a better day

Miamia

jerseyangel Proficient
Patti-

I am sorry to hear you are still so uncomfortable- hopefully you will get some answers today from your gyn.

Are you going to be tested for leaky gut- have you ever been ?

I hope today is a better day

Miamia

Hi Miamia--how are you?

I've never been tested for leaky gut, but I just know I have to have it. With so many food intolerances (that are not allergies) and the fact that I took antibiotics and steroids many times. It all adds up. I would welcome the chance to be tested--I don't know how knowledgeable this doctor is going to be--or how open-minded. :unsure:

The Gyn office opens at 9, so I'll be calling for an appt soon. They are usually very good about getting people in within the week or so.

Are you doing better--I know last week was rough for you :(

jerseyangel Proficient

OMG--I hope Donna's alright! Did any of you see this? She's in the Caribbean, too.

Open Original Shared Link

There's gotta be more than one ship there--right? :unsure:

CarlaB Enthusiast
OMG--I hope Donna's alright! Did any of you see this? She's in the Caribbean, too.

Open Original Shared Link

There's gotta be more than one ship there--right? :unsure:

The article said it was a 7 day cruise that ended Sunday, can't be hers!! :)

jerseyangel Proficient
The article said it was a 7 day cruise that ended Sunday, can't be hers!! :)

Thank goodness! I must have missed that part :ph34r:

Sorry :D

CarlaB Enthusiast
Thank goodness! I must have missed that part :ph34r:

Sorry :D

I caught it the first time through, but you wouldn't believe how long it took me to figure out that her leaving Friday and that cruise ending Sunday was fewer than 7 days!! :blink: What is wrong with my brain????

jerseyangel Proficient
I caught it the first time through, but you wouldn't believe how long it took me to figure out that her leaving Friday and that cruise ending Sunday was fewer than 7 days!! :blink: What is wrong with my brain????

:lol: I used to have a mind like a steel trap! Now, I have to read and re-read. You should see how long it takes me to read the paper :ph34r:

happygirl Collaborator

x

jerseyangel Proficient

Laura,

If you tested neg for leaky gut, I probably would, too. I don't know how reliable those tests are, anyway. They may be-- I just don't know much about them.

I did get an appt with the Gyn Thursday at 3. It's not with the doctor I had seen the previous 2 times (my doctor before her decided to be a stay at home mom)--it's with the guy who started the practice. He's supposed to be the best, and hard to get into see. I lucked out!

If we don't see you around tonight--we'll know where you are :lol: Have fun :D

AndreaB Contributor
Andrea-

no major appts for me this week just biofeedback, but hopefully fingers crossed some of my test results. And I finish my candida mediciene-

oh Rachel I am on diflucan and I did have my liver checked when I had the other blood work done and everything came back fine- thank god

Yay for finishing your medicine and for your liver being ok! :D

Hi Andrea :)

I have an appt with a new doctor on Wednesday. Over the phone I was told they would discuss leaky gut with me. We'll see...

Also, I'm calling the Gyn this morning about this hideous pain. I'm thinking it's due to either my fibroid or the ovarian cysts. I was doing some research, and both can cause this kind of pain. Can't blame this on food or anything--it comes in cycles.

I will probably end up having surgery, but I'm at the point where I'll do it.

I'll be curious to hear what this new doctor says.

I hope you can get the fibroids or cysts taken care of quickly. That doesn't sound like fun. :(

OMG--I hope Donna's alright! Did any of you see this? She's in the Caribbean, too.

Open Original Shared Link

There's gotta be more than one ship there--right? :unsure:

Carla already answered.....this wouldn't be Donna as they boarded on the 26th.

Rachel--24 Collaborator

Wow...thank God Donna is safe. :)

I was scared but then saw that they said something about Nov. 26th. Donna was still on land at that time. :)

Carla....I'm super slow at figuring stuff out too. :unsure:

Patti...Good luck at your appt. today. :)

I'm not sure how reliable those leaky gut tests are either.

Laura...I'm assuming you got tested by mainstream Dr.'s?? I wasnt even aware they tested for leaky gut. :huh: I wonder if its the same type of test the other doctors use?? :unsure:

I got a newsletter from the BetterHealthGuy. It mostly talked about his journey through Lyme treatment this past year. I think he's maybe been doing treatment for a year now....maybe a little longer. The end of the letter sounded promising...gives me some hope.

2006 has been a year of continued progress. Fortunately, I am very functional at this point.Though a few symptoms remain, I am ready for a winter of snowboarding in Tahoe once again! I also recently started an hour long Turbo Kick Boxing class which is amazing. The only challenge is my lack of coordination. Sadly, that is not from Lyme!

This part of his letter was very important....its about the restrictions they are putting on doctors as far as treating chronic lyme.

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.

I would like to post a link to this petition in case anyone here wants to sign it and hopefully pass it on to others.

I'm not sure if its in violation of board rules so will have to check with Scott on that.

Patti...do you have any idea if its ok???

This is a really serious issue for those of us who have Lyme.

For now....anyone who wishes to sign this petition....please pm me and I'll send it to you. :)

jerseyangel Proficient

Rachel,

I don't see where it violates any board rules. I'd be happy to sign it--I'll send you my email address :)

I think I told you that my husband's cousin's daughter has a terrible case of Lyme and was on IV antibiotics. Disrupted her life in a major way. My husband, himself, had it last summer.

What with so many affected, and the unreliable testing that's out there, it's a shame that they now want to limit the treatment options. <_<

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....

    2. - badastronaut replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....

    3. - knitty kitty replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....

    4. - badastronaut replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....

    5. - knitty kitty replied to badastronaut's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Still unsure.....


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,739
    • Most Online (within 30 mins)
      7,748

    gexewib
    Newest Member
    gexewib
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      If you're more comfortable starting slow, that's fine, but do increase your dose to 500 mg per day as quickly as possible.  The World Health Organization recommends 500 mg thiamine HCl per day when deficiency is suspected.  Dr. Lonsdale had researched high dose thiamine for decades, and he has used higher doses, 1 to 3 grams in some cases.   Like I explained above, it's at that 500 mg level or higher that passive diffusion happens and thiamine can get into cells.  Inside the cells, thiamine turns the mitochondria back on.  Mitochondria produce energy the cells use to function.  I had been taking a multivitamin containing thiamine HCl regularly and still had become deficient.  Malabsorption of celiac disease really affects vitamin absorption.  I bought a bottle of thiamine HCl.  I was skeptical, too. I thought it couldn't be that easy.  I took 500 mg all at once.  I had improvement within minutes.  I couldn't believe the sensation of energy spreading to all parts of my body.  My brain felt like it was lifted out of a sub-sub-basement by an elevator and lights were coming on, floor by floor, of a skyscraper.  It was mental improvement, mental clarity.  Thiamine is needed for nerves to transmit electrical impulses, so the more nerves transmitting electrical impulses, the more my brain started working better.  The better my brain started working, the better I felt physically.  My muscles had more energy.  I wanted to get up and do stuff.   P.S. Questions are welcome.  "there's no poverty like ignorance, no wealth like knowledge". Keep learning!
    • badastronaut
      Thanks! I think I'll start slow. See what happens. Should I notice the thiamine working almost straight away if I'm really deficient? What kinda of difference did you notice? More mental? Of also physical in the sense of more energy?    Sorry for all the questions! 
    • knitty kitty
      Absolutely no danger of overdosing on the stuff.  Thiamine is nontoxic, and safe.  I had gotten to 1000 mg of Thiamine HCl a day at one point.   Do continue taking the multivitamin with the other B vitamins.  You may want to add a magnesium supplement because magnesium and thiamine make enzymes together.  I like Magnesium l-Threonate (Neuro-Mag by life extension).  You may want to add a B Complex in addition to the multivitamin (take them at different times).  All the B vitamins are water soluble.   With Thiamine HCl, there's a "magic moment" about 500 mg, where sufficient thiamine can get into the cells by passive diffusion, and the difference is amazing.  In thiamine insufficiency, the thiamine transporters (special gates into the cell) shut down.  Thiamine cannot get into the cells until there's a higher concentration outside of the cell.  Once that happens, the  thiamine can get through and go to work inside the cells.   If you're brave, start with 300 mg at one meal and 200 mg at the next meal.  Increase as you feel comfortable.  You may want to stay at one amount for a few days before increasing again.  Just keep adding another 100 mg as long as you keep feeling improvement.  If you feel uncomfortable, skip the next dose.  Thiamine HCL is water soluble and excess is easily excreted.  Don't take thiamine close to bedtime because you may feel too energized to sleep.   Thiamine HCl may feel like riding in the back of a pick up truck on a gravel road.  Benfotiamine feels like you're in a chauffeur driven Rolls Royce.  TTFD feels like you're driving a Lamborghini.  You'll get there no matter what kind of thiamine is taking you there.  Just keep taking it.  The health improvements can be very subtle, but you'll notice in the long run.   I started with 500 mg of Thiamine HCl, to see what would happen and had amazing improvement within an hour.  I took 300 mg with each of two meals and 100 mg with snacks.  I eventually added in Benfotiamine (250 mg  a couple of times a day) and reduced the thiamine HCl.  Later I added in TTFD (50 mg) several times a day.  Just experiment and see what feels right for you. Everyone is different and has a different level of deficiency.   I kept having additional improvement with each type of thiamine.  I've taken thiamine for almost fifteen years now.  I still take all three kinds on maintenance doses.  You have to experiment and see which ones work best for you in which combination.   I'm right here if you need anything.   You'll be fine.
    • badastronaut
      Thanks so much for your replies! no danger of overdosing on the stuff? or having the other B levels going out of whack? I do take a multivitamin with all te other B vitamins at the RDA level. I have bought the HCL version of Thiamine. How long do you need to use the Thiamine? a short periode on high levels and then back to a maintenance dosage?
    • knitty kitty
      Kudos for trying thiamine! On the ingredients label it should say if it's thiamine hydrochloride (thiamine HCl) or thiamine mononitrate or something else.   Thiamine mononitrate is shelf stable and not easily utilized in the body.   Yes, go ahead and try a whole 100 mg tablet.   Take with a meal.  Don't take close to bedtime.  Tomorrow take a 100 mg tablet with two meals. The next day take two 100mg tablets at one meal and 100 mg at second meal.  Keep increasing in this manner as long as you notice improvement.   When I first started with thiamine hydrochloride, I felt like the lights in my head were being turned on floor by floor like in a tall skyscraper.  It's just the brain working properly with sufficient thiamine.  I worked up to 1000 mg a day.  Lots if tablets.  Benfotiamine and TTFD are stronger and are utilized easier, so not as many milligrams ate needed.   I'm happy to answer any further questions!  
×
×
  • Create New...