Jump to content
  • 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 Jhona's topic in Introduce Yourself / Share Stuff
      32

      Does anyone here also have Afib

    2. - knitty kitty replied to lehum's topic in Super Sensitive People
      9

      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

    3. - Scott Adams replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    4. - Theresa2407 replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?

    5. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,939
    • Most Online (within 30 mins)
      7,748

    Michelle C.
    Newest Member
    Michelle C.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
    • knitty kitty
      Healthy Omega Three fats.  Olive oil or flaxseed oil, oily fish, fatty cuts of meat.   Our bodies run much better on burning fats as fuel.  Diets based on carbohydrates require an increased amount of thiamine to process the carbs into fuel for the body.  Unfortunately, thiamine mononitrate is used to enrich rice.  Thiamine mononitrate is relatively unusable in the body.  So a high carb diet can further decrease thiamine stores in the body.  Insufficient thiamine in the body causes the body to burn body fat and muscle for fuel, so weight loss and muscle wasting occurs.  Those extra carbohydrates can lead to Candida (often confused with mold toxicity) and SIBO (Small Intestinal Bacterial Overgrowth).   Losing weight quickly is a symptom of thiamine insufficiency.  Muscle wasting is a symptom of thiamine insufficiency.  I lost sixty pounds in a month.   Having difficulty putting weight on and keeping it on is a symptom of thiamine insufficiency.   The AIP diet works because it eliminates all grains and grasses, rice, quinoa, all the carbs.  Without the carbs, the Candida and SIBO get starved and die off.  Easy way to change your microbiome is to change what you feed it.  With the rowdy neighbors gone, the intestine can heal and absorb more nutrients.   Supplementing with essential vitamins and minerals is beneficial.  Talk to your doctor and nutritionist.  Benfotiamine is a form of thiamine that promotes intestinal healing.  The eight B vitamins are water soluble, so if you don't need them, they can be gotten rid of easily.   Night shades are excluded on the AIP diet.  Potatoes, tomatoes, peppers and eggplant are not allowed on the AIP diet.  They contain alkaloids that promote "a leaky gut".  Benfotiamine can help here. Sweet potatoes are avoided because they contain thiaminases, chemicals that break thiamine so that the body cannot use it.   The AIP diet has helped me.
    • Scott Adams
      The reaction one gets when they get glutened varies a lot from person to person.  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Theresa2407
      A gluten ingestion can last for many months.  Many years ago there was a celiac conference in Fl.  Everyone there got contaminated with some having difficulty 6 months to recover.  It will hit your Lympatic system and spread  through the body and effect your nevous system as well. Most times when I get glutened it is from a prescription med that wasn't checked close enough.  the Pharmacuticals change vendors all the time.
    • Hmart
      Thank you so much for the responses. Every piece of information helps.  I only knowingly ate gluten once, that was four days ago. I had the reaction about 3-4 hours after consuming it. I’m concerned that after 4 days the symptoms aren’t abating and almost seem worse today than yesterday.  I haven’t had either breath test. I did ask about additional testing but the PA recommended me to a celiac specialist. Unfortunately the first available is mid-December.  As far as diet, I am a pescatarian (have been for 25+ years) and I stopped eating dairy mid-last week as my stomach discomfort continued. Right now, I’m having trouble eating anything. Have mostly been focused on bananas, grapes, nut butters, DF yogurt, eggs, veggie broth.   I ordered some gluten-free meal replacements to help.  But I’ll get all the items (thank goodness for Instacart) and try the diet you recommended to get me past this period of feeling completely awful.  Yes, my doctor diagnosed celiac. I was concerned it wasn’t right based on the negative blood test and my continued symptoms.  Even if you are ‘glutened’ it shouldn’t last forever, right? Is four days too long?   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.