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

happygirl Collaborator

I would just like to add that I still don't believe that Susie is 45. I just don't buy it!!!!!!!!!!!


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast

Okay, I'm going to try to remember all the questions, but if I forget, I'll only be able to check the last ten posts while I'm posting!

Charlie, I've checked all the meds I've taken before I took them for their gluten-free status, but I forgot to for the minocycline. I'm taking it now. I don't worry about the other stuff, but if you're really concerned, you could go to a compounding pharmacy.

Susan, yeah, Laura and I seem to herx about the same time. I don't know if we'll continue that way, but mine are every 24 days.

And, you know, I have receding gums, too. I don't know why ... I follow all the "rules" of taking care of my teeth. Adams' are perfect, but my gums recede. Dentists always tell me I brush too hard with too hard of a toothbrush ... but I don't. When I get the braces off, I want to get them fixed ... don't know how, but I'm going to talk to a cosmetic dentist. After the braces, I want them to look GREAT! :D

Bev -- WOW! :o Now I wonder what mine was ... I'll need to put it on my list of questions for the doctor.

dlp252 Apprentice

Charlie - I don't take any prescriptions at the moment except for the ocassional Zyrtec for allergy symptoms, so I haven't had to worry about fillers and such.

I know Rachel was having some of her stuff done at a compounding pharmacy...I think her thyroid stuff, but I'm not sure she's on any other prescription stuff either yet.

I buy most of my supplements at Whole Foods or my doctors' offices, so those are pretty allergen free.

Lately I've been taking the capsules apart too...figure it's just one less burden on my body. :P

AndreaB Contributor

Donna,

Just noticed your new avatar and I'm sure you'll be telling us about it when you get back over here. :P

Another cute one btw.

AndreaB Contributor

Susan,

I love all the photos of you and the girls (or girl :P )

Have to agree with Laura.......you don't look 45!

jerseyangel Proficient
Donna,

Just noticed your new avatar and I'm sure you'll be telling us about it when you get back over here. :P

Another cute one btw.

Susan,

I love all the photos of you and the girls (or girl :P )

Have to agree with Laura.......you don't look 45!

Double ditto :lol:

dlp252 Apprentice
Donna,

Just noticed your new avatar and I'm sure you'll be telling us about it when you get back over here. :P

Another cute one btw.

Not sure on the details of this one...like why I would be so dressed up. These were the sons of one of my mom's good friends. I think we lived very close by and I used to play with these guys all the time. Can't even remember their names, lol. My mom liked to dress me up, but generally only dresses when we went visiting, lol. I'll have to ask her more about this. :lol:

You can't make it out, but I'm holding a cat... not my cat either I don't think, lol.


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor
You can't make it out, but I'm holding a cat... not my cat either I don't think, lol.

I wouldn't have known if you hadn't told me. I think I can make it out now that I know what it is. :P

DingoGirl Enthusiast
I would just like to add that I still don't believe that Susie is 45. I just don't buy it!!!!!!!!!!!

bless you, dear girl. But, if you saw me up close :ph34r: you could see it - fine lines and such.

A few weeks ago, I was out with my young and gorgeous nieces at a pub. The CUTEST "boy" (man child) kept staring, and I thought he was interested in my nieces. So, finally he comes over, says, can I sit here? my friends are being mean to me. And guess who he was interested in? :o that's right. So, he is adorable, and he sees my jewelry and says, "are you a Christian? so am I? :wub: (my love for him deepens), and we are flirting, and he tells me he is 30 (dang). And he thinks I am 36. HAH!! So I let him think that for the next half hour, and then made the MOST EGREGIOUS ERROR of telling him my real age. :blink: And within five minutes, he left our table. HARRUMPH! He revisited again later, but he had lost that lovin' feeling.

AND THAT IS THE LAST TIME I REVEAL MY AGE TO ANYONE!!!!!

:angry::lol:

Okay, now, WHY do I have energy today? It was like three weeks of pure heinosity, and today - - I am cleaning - no choice - like a tornado, my niece has been here for a couple of days, and her boyfriend is coming to stay also either today or tomorrow......and I am furiously preparing. Cleaning out closets, drawers, sterilizing everything - it smells fabulous in here. WHERE did this energy come from? Maybe all of the sleep? I don't know. But I will tell you something, I feel almost elated at how much I"m getting done - after letting these things go for so long - and how organized everything is becoming.

You know something, I think part of the depression is about feeling so overwhelmed by my house and environment at times. Things pile up when you're exhausted, and you get more and more overwhelmed, and then more depressed, and then it all just seems impossible to do, so you let it go....and then it gets WORSE - and then it's like climbing Everest without supplemental oxygen, so you just bail and go back to basecamp :lol: .......it's a vicious cycle to which I"m sure we can all relate!

BTW niece's boyfriend John is quite strong (a very ardent climber) and handy - he's goign to be helping me with some stuff here. :) I am ecstatic!

okay......back to work.

jerseyangel Proficient

I see the cat--very cute :D

AndreaB Contributor
Okay, now, WHY do I have energy today?

But I will tell you something, I feel almost elated at how much I"m getting done - after letting these things go for so long - and how organized everything is becoming.

You know something, I think part of the depression is about feeling so overwhelmed by my house and environment at times. Things pile up when you're exhausted, and you get more and more overwhelmed, and then more depressed, and then it all just seems impossible to do, so you let it go....and then it gets WORSE - and then it's like climbing Everest without supplemental oxygen, so you just bail and go back to basecamp :lol: .......it's a vicious cycle to which I"m sure we can all relate!

BTW niece's boyfriend John is quite strong (a very ardent climber) and handy - he's goign to be helping me with some stuff here. :) I am ecstatic!

okay......back to work.

I can definately relate.

School......we haven't finished and Seth is down for a nap. I don't like doing school during nap time so I guess we'll wait. She can do her paperwork but I've got to go over the book part.

Mtndog Collaborator

Hello loves- gotta make this another quickie as we are having major thunderstorms and the internet keeps going in and out :angry:

Susie- I don't give a rat's patootie.....even if you have fine lines you look 35 and gorgeous. You MAY NOT disagree, you may simply and HENCEFORTH accept all compliments with a thank you :P

So, uhm, I DO have Lyme, right? I mean the C*D* 57 only tests for those killer cells that are impacted by Lyme so I guess I'm a Lymie. It was pretty funny...I was sipping barium while talking to my LLMD's nurse who's a hoot. She was cracking up!

I just want to say thank you ALL (every last one of you) for all the support you have given me. I know I had to step away for a bit and really think about it and listen to my own body and I'm glad i did, but I'm glad to be back.

CarlaB Enthusiast

We're glad to have you back. :rolleyes:

I hope the barium tastes good!

I don't know whether the C D 57 proves Lyme ... seems like a sure thing for you at this point ... it's a clinical diagnosis, and the sickest tend to have negative blood tests ... so your blood tests could be negative and your LLMD might still determine you have it.

Oh, and Susan, we've earned these fine lines and wrinkles! ;)

AndreaB Contributor
I just want to say thank you ALL (every last one of you) for all the support you have given me. I know I had to step away for a bit and really think about it and listen to my own body and I'm glad i did, but I'm glad to be back.

We are glad you're back as well. :D

I think the CD57 is pretty specific for lyme. It's used as an indicator of how the lyme infection is doing. Rachel and Charlie would probably be able to say more about it.......maybe Donna too. :)

Rachel--24 Collaborator

Well....I think I'm locked out of page 1051. :rolleyes:

I read the page but cant recall what I wanted to respond to except Miamia was saying something about rice cakes feeding candida??

I did wanna say that lots of other things you're eating will also feed candida...like those chicken nuggets. If you get a particularly strong reaction to a certain food....like the rice cakes...its more likely you are reacting to something in the food. Yes...it would still feed candida but I doubt thats why you reacted.

Its mostly white starches (i.e. white rice, potatoes) that rapidly turn to sugar. My candida situation is pretty bad but I still ate potatoes, and dont forget the ice cream (with actual cane sugar and milk sugar), plus apples and popcorn. I was feeding the candida plenty but I did not get reactions to these foods because apparantly they were pretty safe as far as molds and chemicals.

However, a single bite of a rice cake and I'm reacting pretty noticeably...half of a rice cake has me pretty messed up for at least 2 days. :angry:

Its like this with alot of foods. The more I ate the ice cream and fed the candida...the more sensitive I became to molds and chemicals. I've come to learn that the reactions are not actually from "feeding" the candida. If candida is consistently causing a problem...its not going to cause dramatic symptoms after one meal or snack. Those reactions are occurring because having the candida means you get alot of sensitivities to various things.

You especially become sensitive to yeast and molds. If you eat something with vinegar...or drink wine (which is loaded with yeast).....you will react quite strongly and most likely feel bad for days.

I dont think the candida got especially happy with the rice cakes...I think its more likely you are sensitive to them.

I'm pretty sure my candida was feeling pretty darn good having 1-2 pints of chocolate ice cream everyday....I dont think my problems with rice and rice cakes comes from the candida consuming sugar. If that was the case I'd have been pretty miserable those 8 months I ate ice cream everyday. :blink:

If you can eat homemade pizza, chicken nuggets and other foods and be ok....then theres something about the rice cakes. If it had to do with feeding candida you would have the same problem with these other foods....because they feed candida as well.

Thats my guess. :)

I dont eat ice cream, popcorn or apples anymore....(yeah..I know....it about time I got smart about this :rolleyes: ) but I still do eat some potatoes and oatmeal...which are very starchy. I also had yams. :ph34r:

Anna told me to never eat the starches like potatoes by themselves...this is when they will rapidly turn to sugar. She said to always eat them with protein...which slows it down and allows less sugar for the yeast. There must be truth in it because if I eat the potato by itself...I get more head "fullness". If I eat it with meat...I barely notice anything after eating. :)

This would not work for me with rice cakes because I'm actually reacting to the rice cake itself....its nothing to do with it turning to sugar. Plus I always ate brown rice cakes...never white.

Rachel--24 Collaborator
I think the CD57 is pretty specific for lyme. It's used as an indicator of how the lyme infection is doing. Rachel and Charlie would probably be able to say more about it.......maybe Donna too. :)

There is no scientific evidence proving that low CD57 can *only* be caused by Lyme. They do not know this for sure. All that is really known is that people with Lyme do tend to have low CD57....which then goes up with treatment.

However....this is not always the case. For some people the CD57 is right on target with how they're feeling....and it stays on target...showing gains when symptoms improve and showing a decline when they are feeling bad.

Other times the numbers dont sem to correlate. They dont know all that can affect the CD57 cells but also those whos numbers dont correlate....may have symptoms which are unrelated to Lyme....most likely co-infections or mercury.

I'm sure if I treated Lyme very aggresively my numbers might increase indicating well being...but I can pretty much guarantee I'd still feel like crap because Lyme isnt the main reason for my symptoms to begin with.

Rachel--24 Collaborator
Rachel - - I can totally identify with this. When I moved in here, into Stepford, two years ago, I think my neighbors were waiting for a mattress or refrigerator to show up on my front lawn. :ph34r:

:lol::lol:

Yeah....my neighbors are probably totally confused by my inconsistency with maintaining the yard. :ph34r:

At times I was out there everyday...meticulously grooming, cutting and making evrything perfect....then I just let it all go. :huh:

Sometimes one of my neighbors will mow my lawn for me.....I'll come home and its been mowed. He probably just doesnt know what to expect from me anymore. :P

He only mows half the lawn though...I have two lawns in the front so one will be neat and tidy (the one on his side) and the other....well...not so neat and tidy. :P

I would just like to add that I still don't believe that Susie is 45. I just don't buy it!!!!!!!!!!!

Yeah....I'm not buying it either!! <_<

I know Rachel was having some of her stuff done at a compounding pharmacy...I think her thyroid stuff, but I'm not sure she's on any other prescription stuff either yet.

My only rx's are my thyroid meds and Nystatin. I dont use the compounding pharmacy anymore....I only did that when I was tring to see if corn was causing all this. Obviously it wasnt corn...so I dont worry about it anymore.

The Nystatin is the same exact stuff whether I get it from the compounding pharmacy or not...only thing is that they put it in capsules and I have to pay $50 instead of $10. :unsure:

My co-pay for compounded stuff is $40 more...so I dont see the point.

Its hard to get the *right* Nystatin from a regular pharmacy...they never get orders for it....have no idea what it is...and I always have to inform the pharmacist on how to get it, how to store it, and how its taken. :blink:

Charlie....if you take Nystatin do not take those little orange tablets and definately do not take suspension (liquid). The suspension has sugar in it...kinda defeats the purpose. :rolleyes:

The tablets arent effective. I use oral powder...one time they tried to give me "topical" powder....like for athletes foot fungal issues :blink: .....the pharmacists arent familiar with the oral powder at all.

Its very bitter tasting but way more effective than the other stuff. It has to be refridgerated. I get the stuff which is actually used for compounding...so its not in capsules yet. I measure it myself. Even my Dr. didnt know I could get it from a regular pharmacy this way. Its safer than Diflucin which is hard on the liver and you need liver testing while on it.

Nystatin can be taken long term and is known to be safe.

You know something, I think part of the depression is about feeling so overwhelmed by my house and environment at times. Things pile up when you're exhausted, and you get more and more overwhelmed, and then more depressed, and then it all just seems impossible to do, so you let it go....and then it gets WORSE

Yup...thats exactly what happens to me..whether its home, work, bills, the yard, etc. I cant allow myself to get overwhelmed in any way or my health declines...along with my mood. :(

My mom helps me out with the bills now since that was one of the most overwhelming things for me.

I hope the barium tastes good!

I loved the stuff I had to drink for my last barium.

I would drink it everyday. :P

CarlaB Enthusiast
if you take Nystatin do not take those little orange tablets

I take the tablets ... why are they ineffective?

dlp252 Apprentice

Fun and games at the clinic today, lol.

So I have my PT/chiro/prolotherapy session today. I give copies of all my tests results to Nancy who gives them to Dr. Carrie. Dr. Carrie looks them over and says, oh good, your lyme test was negative. :lol: So eventually I say, well I DID have past infection show up as positive. In fairness, she only glanced quickly at them and showed them to Dr. Rick. They were both concerned about the mold results though. :(

Then, I'm getting my prolotherapy injections and she's doing my elbow area, and hits a nerve. Shot shooting pain down my entire arm into my fingers. After that my arm went numb and I couldn't open my hand! I could close my fist, but I couldn't open my hand past just barely open and I had no strength in my arm. She walked me back to the PT area and told the guy who would work on me about it and gave him some special instructions. It was quite scarey because I couldn't pick anything up...like my purse, lol. Anyway, while I was getting adjusted my fingers opened up a bit more and after the PT guy worked on me I was able to open and close my hand like normal...my arm just felt weak. It feels pretty normal now though.

I also soaked in a nice hot bathtub with some epsom salts...Had my own little sauna going. :P

AND THAT IS THE LAST TIME I REVEAL MY AGE TO ANYONE!!!!!

Yep, I always feel the need for full disclosure and I'm always sorry afterwards. :P

You know something, I think part of the depression is about feeling so overwhelmed by my house and environment at times. Things pile up when you're exhausted, and you get more and more overwhelmed, and then more depressed, and then it all just seems impossible to do, so you let it go....and then it gets WORSE - and then it's like climbing Everest without supplemental oxygen, so you just bail and go back to basecamp .......it's a vicious cycle to which I"m sure we can all relate!

This is actually very true! I've heard it from a number of sources. It's exactly what's happening to me...the place is so bad here that it's absolutely overwhelming. Basecamp wasn't enough...I've had to go back to the village. :P

So, uhm, I DO have Lyme, right? I mean the C*D* 57 only tests for those killer cells that are impacted by Lyme so I guess I'm a Lymie. It was pretty funny...I was sipping barium while talking to my LLMD's nurse who's a hoot. She was cracking up!

I just want to say thank you ALL (every last one of you) for all the support you have given me. I know I had to step away for a bit and really think about it and listen to my own body and I'm glad i did, but I'm glad to be back.

You're welcome! I don't know if the killer cells are ONLY impacted by lyme, but from what I read, they are more specific to lyme than the other types of cells. I don't think my LLMD would have made a lyme diagnosis based on that alone, but he's using it together with the other test results and my symptoms and my energy level.

We are glad you're back as well.

Ditto!

Its like this with alot of foods. The more I ate the ice cream and fed the candida...the more sensitive I became to molds and chemicals. I've come to learn that the reactions are not actually from "feeding" the candida. If candida is consistently causing a problem...its not going to cause dramatic symptoms after one meal or snack. Those reactions are occurring because having the candida means you get alot of sensitivities to various things.

Oh for pete's sake, lol. It's like my eyes have just been opened... :lol: I'm thinking my candida isn't a big problem because I've had no die off, cuz Scott said it didn't look bad in ART and because I haven't had any big reactions. DUH, Donna, what the heck are you thinking. :P This is exactly what is happening to me. Where's the head banging icon when you need it! :P

Rachel--24 Collaborator
I take the tablets ... why are they ineffective?

I'm pretty sure they're mostly for oral candida...and not infection of the GI tract. I had first read about the oral powder (and instructions on how to take it) in one of my Candida books "The Yeast Syndrome). The book recommends only taking the oral powder as it is far more effective.

I asked my Kaiser Dr. for Nystatin and ended up getting the little orange tablets. The ones you suck on right?? I got those and they didnt do anything. My Dr. wasnt familiar with Nystatin...let alone the powder stuff...it wasnt listed in his little rx book. :rolleyes:

I showed him what it said in my candida book and eventually he was able to figure it out and get me the script. It works....I used it while I was doing my anti-candida stuff 2 years ago. That guy Groovy2 from LN would often post on the candida board about using only oral powder and about how strong it was in comparison. Thats been my experience with it as well.

He was the one that mentioned that it must be kept cold or it will lose some of its strength. It says it right on the bottle but my pharmacy had never kept it refridgerated. :angry:

Now I always make sure to let the pharmacist know how it should be stored. In the past there have been times I forgot to put it back in the fridge and yeah....I could tell it wasnt as strong anymore. I've ruined many bottles this way. :(

Most people who are familiar with Nystatin would definately tell you to use the oral powder for GI infection. My LLMD prescribed the oral stuff...but he was under the impression it only came from compounding pharmacies....which isnt the case....you can get it....but apparantly not many people do cuz the pharmacies are pretty dumb about it. :rolleyes:

dlp252 Apprentice

My ENT (now retired) prescribed Nystatin for me during the midst of my sinus infection cycle thing and I think I had white tablets...I didn't suck on them. I wonder if they would still work the same though. Good to know that when Dr. S prescribes (and he did say he might down the line) antifungals that it will be the good stuff.

CarlaB Enthusiast
The ones you suck on right??

No, you swallow these.

AndreaB Contributor

Boy Donna! You're appointment sounded scary. I would have been scared too.

I had an incident when Talitha was a baby (I think it was her and not Micah) where I couldn't move my hands, couldn't make a fist. Scared me to death. I think it lasted around 20 minutes. I called the doctor but they were no help. :angry:

Rachel--24 Collaborator
No, you swallow these.

Hmmm...

I only know of 3 kinds of Nystatin.

Pure Nystatin Oral powder....mix with water.

Oral liquid suspension...tastes sweet cuz of sugar.

Tablets which you suck on.

Are you sure you're directions said to swallow them?? I never heard of a nystatin pill that you swallow....will have to look that one up.

I was trying to find out more about the powder stuff and found this post from that guy who emailed me....telling me I may have Lyme. I had to laugh. :lol:

When I had candida at its worst-

every thing would bother me--

smells-perfume gasoline- cleaning

products--

Things I would eat--any thing with

yeast or mold in it--

You have to do the No carb diet

--If you cheat you will pay- I did-

Nystatin powder by far worked the

best the best for me--Must be

kept cold.

Take probiotics and yogert

Go to Yeast Connection .org

it is a good site for candida

--Also notice how many

of the people on this site sound

like they have Lyme.

Candida was one of my early lyme

symptoms

Yup...this post was written in June 2005.....thats when I was on the Yeast Connection.....and thats also when he emailed me. :lol:

I should let him know he was right. :P

AndreaB Contributor
I should let him know he was right. :P

Wouldn't be a bad idea. :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,816
    • Most Online (within 30 mins)
      7,748

    Shamrock HVAC Services
    Newest Member
    Shamrock HVAC Services
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @Kiwifruit, I agree further testing is needed.  Disaccharidase deficiency is a symptom of Celiac disease.   On your test results, this line  "IgA: 0.9 g/l (norm 0.8 - 4.0)" is referring to Total IgA and it's very low.  People with low or deficient Total IgA should also have DGP IgG test done.  Low Total IgA means you are making low levels of tTg  IgA as well, leading to false negatives or "weak positives".  Maybe a DNA test for known Celiac genes.   Anemia, diabetes, and thiamine deficiency can cause test results like these.  Get checked for B12 deficiency anemia and have your iron (ferritin) checked.  Vitamin D deficiency is common, too.   Might be time to find a gastrointestinal doctor who is more familiar with diagnosing Celiac Disease.   Best wishes on your journey!  Please keep us posted on your progress.  
    • trents
      Yes, there is a trend in the medical community to forego the endoscopy/biopsy and grant an official celiac diagnosis based on high tTG-IGA antibody scores alone. This trend started in the UK and is spreading to the USA medical community. And yes, 5-10x the normal level is what I have been seeing as the threshold as well. Here is the relevant section dealing from the article above dealing with the importance of the total IGA test being ordered. See the embedded attachment.
    • hmkr
      Ok, interesting. Not what I was thinking that meant. I'm reading the article and trying to understand. I see this “According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy” My IgG is 90, which is 6 times. So to me that means it's highly likely I do have it. 
    • trents
      It just means you aren't IGA deficient, i.e., that IGA deficiency cannot have given you artificially low scores in the individual IGA celiac antibody tests. This is explained in the article Scott linked above.
    • hmkr
      Normal range: 70 - 400 mg/dL, a little above middle of the range. So what does that mean? Thank you! I will check out that page you linked. Appreciate it! 
×
×
  • Create New...