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

AndreaB Contributor
We will be leaving here tomorrow to head to Portland, and maybe see Andrea on the way!!!

Hope so. :D

So I had to clean the bathroom my brother and I used to share, but since it's now mine, I am re-doing it. Well, since there was all kinds of nasty stuff in there, I had to use scrubbing bubbles since it's the only thing that really cleans well. I'm now shaking really badly. I used a mask and gloves, but I guess my body doesn't like that! :ph34r:

That doesn't sound good. :( At least it will stay cleaner with just you using it.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast
Carla, that's a funny story! LOL! Well, it's scary, but funny. It's funny because lately I keep swearing my brother is talking to me! But, as we all know, he is at the hospital! LOL! Even before that though, I kept thinking someone was at the top of the stairs (I can see it from my bed if my door is open) but there isn't anyone there! I wonder if it's a Lyme symptom?!

It only happens for me the evening I take the Lariam .... it's once every five days .... and it's happened twice ... so, for me I think it's a Lariam side-effect. Some people see things like bugs crawling on the ceiling .... I'm glad I'm "just" seeing my husband telling me he loves me and to sleep! :lol:

So I had to clean the bathroom my brother and I used to share, but since it's now mine, I am re-doing it. Well, since there was all kinds of nasty stuff in there, I had to use scrubbing bubbles since it's the only thing that really cleans well. I'm now shaking really badly. I used a mask and gloves, but I guess my body doesn't like that! :ph34r:

I use those. :ph34r: I clean the kids' shower with them before I take an epsom salt bath ... they keep it pretty clean, but I still clean if first .... Once in a while I use it one ours, probably once per month as I keep it pretty clean on a daily basis.

The cleanser makes me sneeze, but other than that, no issues. I try not to breathe it in when I spray it. Once it settles, it doesn't seem to bother me as bad.

Nyxie63 Apprentice

Quick note...

Finally talked to someone in Dr H's office. I have an appt on March 4th at 1:45.

On the bright side, at least I'll have the results from the stool testing and blood tests by that point and can take them with me.

CarlaB Enthusiast
Quick note...

Finally talked to someone in Dr H's office. I have an appt on March 4th at 1:45.

On the bright side, at least I'll have the results from the stool testing and blood tests by that point and can take them with me.

That will be here before you know it!

You can always try Samento and Cumanda while you're waiting. :) Also, parsley and burbur for detox. That's the limited Cowden he had me on while I was on heavy abx. If you are going to do it, let me know and I'll tell you what he had me taking.

BTW, he sells the products to his patients at a discount ... I don't know how that would work if you haven't been in before ... it's about a $10 savings on the Samento ... but I have bought it from Nutramedix before, too.

Nyxie63 Apprentice

Carla,

Thanks! Will PM you in a bit about detox stuff.

Now that I've made the appt, I'm having all kinds of doubts about lyme and stuff. Guess I'm so used to negative results and drs just looking at me funny, I expect it, even from good docs. Does help that I just read Dr J's essay on interpreting WBs and, according to him, my results aren't even in the ballpark for lyme. *sigh*

Think I'll go try to sew for awhile. Seems to help keep my mind from going places it shouldn't.

AndreaB Contributor

Nxyie,

Hang in there. Dr H won't look at you funny.

March 4th will be here before you know it! :D

dlp252 Apprentice

Morning everyone! I've been awake since 2:00 a.m...my first sleepless night in a few weeks now. I have still been waking up, but I've been falling back asleep pretty quickly...not last night apparently! :) Of course once I was awake, my mind starting thinking about the stupid dentist bill, then it went to our new little choir, then it went to the fire drill we're having at work today (I'm a searcher and so was thinking of my plan of action), lol. Stupid errant bill! See what it caused. :lol:

I think I've had a sinus infection this week. I can't believe I hardly had any symptoms...two years ago this would have laid me out for a week. I think that's why I felt dizzy and nauseated the other night, and why I sneezed like 12 times in a row yesterday morning. TMI ALERT: But I also that that shook things up because yesterday evening I blew my nose and yellow was present, lol. So I AM improving in little ways, lol.

Sherry,

Hope you are feeling better soon, AND hope you get to meet up with Andrea!!

Carla,

Wow, funny halluncinations, lol!

Kassandra,

A few months ago, I sprayed my bathroom tile with Tilex or whatever, and normally I leave the area right away, but that day I didn't...I got so sick!

it's just disgusting the amount of money these people make/charge!

It's truly insane!

Donna.... from what I know of you, I think it's better that you called when you did. I think if you'd waited till you'd calmed down, you would have been too NICE! That totally stinks. They need to agree NOT to turn you over to collections and work out a payment plan with you, even if they don't normally do that- because you specifically asked them if you owed anything, and they said no. Stuff like this burns me up!

Donna, Its good you called when you were mad. They should definately set up a payment plan for you and I am sure if you talked to the dentist directly he would, since he didn't seemed worried about it when you were in there last. Threatening collections on the first notice is pretty crappy!

Yeah, I let them have it. :unsure::P After explaining that I hadn't received ANY bills and that I've asked in PERSON many times if I owed anything, I said: "Please don't send me to a collection agency, I think that is highly unfair." :lol::lol: See how rude I was! :P Of course I DID point out that they still had their Christmas/New Years office hours message on the machine, lol. That was probably pretty snipey. :P

Geopathic stress came up in my ART session so she suggested I move my bed to a different wall.

That's interesting...yeah, what is geopathic stress. :P Whatever it is, it sounds like I probably MUST have it. I think I need new makeup...oh wait, wrong thread. :P

Do you think avacados can be highly toxic? <_<

Does anyone react to sea salt?I eat it but it makes my teeth crack and pop. I wonder if it's some kind of chemicals or mineral reaction.

I've come to realize that ANYTHING can be toxic to ANYBODY who is susceptible to it, lol.

Re the sea salt. I don't react, but if I get the course kind, the granules of salt hurt my teeth...not the pressure, but it's like the reaction of the salt with my teeth make them hurt.

Finally talked to someone in Dr H's office. I have an appt on March 4th at 1:45.

Yay!!!

Now that I've made the appt, I'm having all kinds of doubts about lyme and stuff. Guess I'm so used to negative results and drs just looking at me funny, I expect it, even from good docs. Does help that I just read Dr J's essay on interpreting WBs and, according to him, my results aren't even in the ballpark for lyme. *sigh*

Lyme is a weird disease...I think MOST of us had those doubts, even after it was made pretty clear to us that we had it. I know I did, and I remember a couple of others mentioning it too.


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



Celiac.com Sponsor (A8-M):



confusedks Enthusiast

Nyxie,

That's GREAT about your appt! Let Dr. H decide if you have Lyme or not. You don't need to worry about it! :) For a while I didn't think I had Lyme either, but once I got to my Dr. H, I was convinced I did.

Everyone,

So, we are supposed to hear back from the insurance company today to see if they are going to cover the Mepron. We don't think they are, so my mom wants to go and pick it up anyway. It is still almost $600 so we will have to pay that stupidly high amount of money! :angry: I guess the bottom line is I hope it does work and soon we get new insurance! :lol:;)

Also, I got the results from the Hematologists' office 2 days ago and I found out my B-12 went from 344 to more than 1500!!! The range is 211-911! Needless to say, I panicked, so when I sent the results to the LLMD (they wanted copies) I wrote a note asking if I needed to stop the shots and Dr. H wrote back saying no need to stop, only if I feel too "revved" up! YAY!!!

Another thing that's strange is my white blood cell count is really low, even lower than it was about 2 months ago. I don't know what could be causing this, but it's strange!

AndreaB Contributor

Kassandra,

Good news on the b12. I'm glad you ran it by your doctor though.

Hopefully insurance will pick up a good portion of the meds.......don't hold your breath though.

I met Sherry! :D We had a short visit as she has much to do today still, but I'm looking forward to another visit when there is time. :D

confusedks Enthusiast

Andrea,

That's so cool you got to meed Sherry! I want to meet people from this board! That would be so cool! :D

nora-n Rookie

Geopathic stress could be something like water or magnetic fields below the house where the bedroom is. If you always feel better sleepitn in other houses or hotels you probably have geopatic stress under your bed.

There is this magnetic grid everywhere too and at the crossings the engery is too much I think I remember. In addition there are water and other things that can cause disturbances. Some companies sell things that are supposed to help. I read about someone who re-used a copper net (you can only use them for so-ans so many years) or stored it close to a yucca plant and it died from all the bad energy it had caught in all the years. I have not tried this myself....

I finally startet to get better about two years agon after we moved the bed to the opposite wall (after me nagging for seven years I think) because of the feng shui directions based on our birth years and the direction of the doors in the house. Different theory again but has to do with energy too.

nora

dlp252 Apprentice

Thanks for the information Nora!

I think my house has bag feng shui, lol

I met Sherry! :D We had a short visit as she has much to do today still, but I'm looking forward to another visit when there is time. :D

OMGosh....HOW FUN!!!

CarlaB Enthusiast
Lyme is a weird disease...I think MOST of us had those doubts, even after it was made pretty clear to us that we had it. I know I did, and I remember a couple of others mentioning it too.

I have. Even with a CDC positive test (8 positive IgG bands), I still was in denial. Even after starting the meds. Even now I sometimes think maybe I don't have Lyme.

I thought you had some positive Lyme specific bands, Nyxie?

BTW, they do Lyme chat every day now .... it starts at 8PM EST, but I hear you can check in from time to time and people will be there. Oh, and they stay there for HOURS, so don't think that it's too far past 8 to jump in!!

The link is a few pages back in the thread ... or you can look at Medical Questions on LN .... there's a thread that says something like chat at 8.

Green12 Enthusiast

Nora pretty much summed up geopathic stress, for those of you who asked.

Thanks Nora :)

Simply moving around the firniture, and especially the bed to another wall in the room is suppose to make a little difference.

My bedroom actually has a much better energy flow feel to it now :)

Carla, should we be checking on you more while you are on this drug :huh: ?!?!

Glad you figured out your source of fatigue and that you were able to take something to make it better.

We do learn all kinds of little tidbits of info on this thread, don't we :D

Lisa, some people can't take chlorella, it isn't for everybody. I never was able to tolerate it in the past, and when I was recently checked for it it still did not test well for me.

So it is probably good to listen to your body when something isn't agreeing with you.

I don't really know what that would be with the sea salt.

Kass, good news on the B12, hopefully you will have good news to report about the insurance company too.

Nyxie, awesome about your upcoming appt!

Donna, were you one of the ones who got a netti pot? I used mine during sinus crud and it helped a lot.

I think I need new makeup...oh wait, wrong thread.

:lol::lol::lol:

Andrea and Sherry so glad you got to meet up!

CarlaB Enthusiast
Carla, should we be checking on you more while you are on this drug :huh: ?!?!

:lol: It's only once every five days and I generally take it at night because in the beginning I would herx from it. If the problems actually get bad, I'll talk to my LLMD ... but for now, it's always weird stuff that wakes me up at night ...

I think next month when Nutramedix comes out with their herb for babesia, I'll be switching over to it for babs maintenance. :)

Actually, I "feel" like the babs is gone. I "feel" like it's "just" the Lyme at this point and that most of it is in the cyst form because the only time I feel bad is on a cyst-buster. I also still flare once per month.

Nyxie63 Apprentice

Thanks for the encouragement. :)

I'm just all kinds of down and depressed and seriously irritable today. Dunno why. Would swear I was PMSing if anything else was pointing in that direction. Haven't seen Auntie Flo since October and no signs of her on the horizon. Probably why my ferritin is up. :D

Been having odd things happen lately the last couple of weeks. Pin pricks in my right big toe and left heel. And then a burning/itching that randomly comes and then goes away. No marks or rashes. Its painful and annoying. On the bright side, at least my brain seems to be a little better these days. Still have the abdominal pain. Harrumph!

My only positive band was 58 on the IgG. Bands 28, 37 and 41 on the IgG and 23 and 41 on the IgM were what I'm guessing is indeterminate or equivocal. MDL doesn't use the +/- system on their reports. All the PCRs and both ELISAs were negative - no surprise there.

I stopped by the chat for a little while last night, but it was late. Didn't chat much, just lurked for awhile. Still, it was nice to see signs of life if you know what I mean. Just having a real-time connection with other people means a lot. Not dissing you guys here. You've been great. More than great. Sometimes its just nice to have instant feedback, that's all. Will probably wonder through the room later on tonight.

Donna,

Ugh! on the sinus infection. At least its not hitting you hard this time. Neti pots are great. Lost mine in a move years ago. Been thinking about getting another one.

Kassandra,

Yay for your B12 level! Fortunately, its not one of those things we have to worry about ODing on. Your body will just get rid of what it doesn't need.

Carla,

Funky hallucinations! Wow! At least they were friendly ones. :)

Andrea and Sherry,

Neat that you guys got to meet up. What fun! :D

dlp252 Apprentice

Gave myself another B12 injection. My leg hurts. I think it will fall off for sure this time! :lol:

Um, netti pots. Well, I never bought a netti pot, but I did do the nasal rinsing thing. I did it to make my allergist happy. It actually didn't help me for some reason (figures). I would actually get MORE congested...and the stuff that was in there just didn't want to some out. So right about now, that's just about up there with e-coffee for me. :lol: :lol:

Been having odd things happen lately the last couple of weeks. Pin pricks in my right big toe and left heel. And then a burning/itching that randomly comes and then goes away. No marks or rashes. Its painful and annoying. On the bright side, at least my brain seems to be a little better these days. Still have the abdominal pain. Harrumph!

Um, sounds a lot like some of my annoying symptoms. I get sudden stabbing pin prick feelings (and let me tell you that it is a HUGE pin, lol)--can be anywhere on my body...my right big toe hurts almost all the time...there's a thread about this on LN somewhere, lol. The burning/itching...the oldtimers here know my history with leg itching (which is BACK with a vengence in the last week!). And the burning...feels like my skin has a really BAD sunburn, but there is no redness or marks of any kind...hurts like heck when my clothing rubs against it...just like a sunburn would (I don't spend any time in the sun, lol).

Nyxie63 Apprentice

Oh good! Its not just me then.

Had a really bad batch of pinpricks in my heel yesterday morning. Tried making it go away by grinding my heel into the floor. Hubby walked up and started doing the twist. I'm like "huh?". He thought I was dancing. :lol::lol:

Its never dull around here.

dlp252 Apprentice
Hubby walked up and started doing the twist. I'm like "huh?". He thought I was dancing. :lol::lol:

Its never dull around here.

:lol: OMGosh!!! That's hilarious!!! :lol:

aprilh Apprentice

So I uploaded my pic the other day but it won't show up. It's on my control page but it won't show here.

Is there a secret to this?

AndreaB Contributor
So I uploaded my pic the other day but it won't show up. It's on my control page but it won't show here.

Is there a secret to this?

If you loaded it as a personal pic it will only show up on your user profile page. It needs to be loaded as avatar to show up by your posts.

dlp252 Apprentice
So I uploaded my pic the other day but it won't show up. It's on my control page but it won't show here.

Is there a secret to this?

I see a picture on your personal page...if that is the one you want to load, you'll need to load it as your "avatar". Um, I'm having a brain foggy moment so I can't think of the exact thing it's called, but look for something called Avatar. If that's what you did, it could be that the picture is too large and needs to be resized.

CarlaB Enthusiast
Oh good! Its not just me then.

Had a really bad batch of pinpricks in my heel yesterday morning. Tried making it go away by grinding my heel into the floor. Hubby walked up and started doing the twist. I'm like "huh?". He thought I was dancing. :lol::lol:

Its never dull around here.

No, not just you, I get them too.

You'll do fine with Dr. H. :)

aprilh Apprentice
If you loaded it as a personal pic it will only show up on your user profile page. It needs to be loaded as avatar to show up by your posts.

Ok....I don't know how to do an avatar. :lol:

aprilh Apprentice

I figured it out!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,090
    • Most Online (within 30 mins)
      7,748

    Kerischultz
    Newest Member
    Kerischultz
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kiwifruit
    • trents
      Thanks for following up with us on the results. This might be helpful to you now:  
    • Kiwifruit
      Hi I just wanted to update you all and let you know that I finally have my diagnosis. 2 weeks ago I had my third gastroscopy and the biopsy confirmed the damage. Thank you for giving me the information I needed to advocate for myself when I a was a feeling so lost!
    • Scott Adams
      I agree that the gastritis may go away after you've been on a gluten-free diet for a while. If you are concerned, it might make sense for you to do a follow up biopsy after  a year or so on a gluten-free diet. 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.):    
    • Scott Adams
      Getting tested for celiac disease is a valid concern, especially given your history of microscopic colitis and the potential risks associated with undiagnosed celiac disease, such as cross-contamination, nutrient malabsorption, and increased cancer risk. Since you’ve been gluten-free for years, reintroducing gluten for the standard celiac blood tests or endoscopy would be challenging, as it requires consuming gluten for several weeks to months, which could worsen your symptoms and disrupt your daily life. Gene testing (HLA-DQ2 and HLA-DQ8) through a lab like EnteroLab could be a helpful first step. While these genes are present in nearly all celiac patients, having them doesn’t confirm celiac disease—it only indicates genetic susceptibility. If you don’t have these genes, celiac disease is highly unlikely, which could provide some peace of mind. However, if you do have the genes, it doesn’t confirm celiac disease but suggests further testing might be warranted if you’re willing to undergo a gluten challenge. Another option is to discuss with your doctor whether a follow-up endoscopy or other non-invasive tests (like stool tests for gluten antibodies) could provide insights without requiring a gluten challenge. While a formal celiac diagnosis can be important for ensuring strict dietary adherence, access to gluten-free options in hospitals, and monitoring for complications, it’s also worth weighing the risks and benefits of reintroducing gluten. If you’re already strictly gluten-free and managing your symptoms well, the urgency of a formal diagnosis may depend on your personal health goals and concerns. Consulting a gastroenterologist familiar with celiac disease and Microscopic Colitis can help guide your decision.
×
×
  • Create New...