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
I'll have to check my dosage, but she wanted to start me on the full dose, even though "I'm a tiny person."

Yes, I started theralac probiotic. Also, she has some others that she wants me to use, but I wasn't able to get those today. I think I'm about to be popping stuff like its my job. Today I did the probiotic, the vitamin B sublingual, and something else for my poor digestive track.

My doc is aggressive with it, too. I didn't ease into any meds ... just started at full-dose. This one seems to be getting to my head more than others ... I feel like I'm a little intoxicated :P ... at least it doesn't hurt and I won't be hungover tomorrow! :lol:

I take Therelac, too. Also ultraflora, and I'm starting on vsl#3, which I ordered online. It looks interesting. There was an article about it and gluten that was very interesting. They don't claim to cure celiac, but it does change the gliandin protein. Open Original Shared Link

I haven't counted my pills ... I think I take about 40.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor
I haven't counted my pills ... I think I take about 40.

:o:blink::huh::o:blink::huh:

Rachel--24 Collaborator

I couldnt get on the board for awhile....was I the only one?? :unsure:

Just wanted to give you a quick update....made a big change today.

Had an app't with my doctor and based on my symtpoms, my equivocal testing, my + RMSF, + mycoplasma, that we are going to start treating for LD and its other issues. I actually was able to start today. This afternoon, I went in for my first IV Vitamin C (and other goodies) treatment. I am planned to go 2x a week for three weeks to start. She prescribed an oral abx but I am not going to start it until next week (I want to see how I do on the IVs first before introducing something like that, so I know if I have problems, which one it is.) She said my presentation is consistent with a clinical dx of LD.

Laura,

Thanks for the update....WOW.....its alot to digest I'm sure. I'll be thinking of you and sending some positive vibes your way as you get started on the treatment.

I think with the RMSF and also mycoplasma your doctors are making the right decision....not to mention the symptoms. Its better to get started then to wait and do nothing...especially since you've ruled everything else out. It sounds like your Dr.'s know what they're doing so I'm really glad that you will be in good hands.

I hope this is it for you.....no more questions and now you can just concentrate on getting well and enjoying life with Eric. :)

I hope you keep posting and letting us know how things are going. I'm not on any treatment for Lyme at this time (except Cats Claw) but I cant say I wont be there at some point. Right now I'm not showing up for anything and all co-infections are neg. Its not ruled out...they think it might be there...just maybe not causing me as much problems as some other things.

I'm getting treated for mercury toxicity and fungal/candida issues so thats where I'm at. I just started too. :)

I'm really glad you got a diagnosis!! :)

You and Carla are moving really fast compared to me. My Dr. has me on like 1/2 a drop of meds. :lol:

I guess my liver cant handle too much though...the chemical sensitivities are a pretty good indicator of my toxicity level. :(

Hang in there and good luck with ABX. I'm glad you are not starting the same time as IV vit C....so that you can really see how each is affecting you.

Its definately overwhelming stuff...glad Eric was there with you.

Keep us updated. :)

Rachel--24 Collaborator
I think I'm about to be popping stuff like its my job.

Yeah...no kidding. I think my Dr. wants me to be popping stuff like its my job...but here I am taking 1/2 a drop every other day. :rolleyes:

Rachel--24 Collaborator
PRAYERS FOR ALL YOU LADIES..

SO MUCH GOING ON HERE. JUST WANT YOU TO KNOW I CARE.

Judy...thanks!

Prayers and hugs right back at ya! :wub:

Rachel--24 Collaborator

I went in for my blood draw earlier...I got tested for Aspergillus. We'll see what happens with that....my Dr. didnt think it was anything to worry about but I feel better having had the test.

Now thats out of the way and I just wish it was the 18th. I have some anxiety about seeing Dr. Derksen and having Lyme show up when she tests me.

When I go for my blood draws I'm always in one room with the nurses and there is another BIG room with alot of chairs with the IV hooks hanging from the ceiling. Usually I dont see but maybe one person in there but tonight it was packed with people lying in the chairs getting IV's.

I was wondering if one day I'll be in there....maybe getting DMPS or Vit C or something else. :unsure:

I wonder if this is how some people are getting their antibiotics for Lyme? I was a little bit intimidated by it....I'm scared of IV's. :(

I'm scared of the blood draws too but they are quick and the nurses are really nice and I havent been hurt by any of them....she even hid the tube so that I wouldnt have to see the blood she drew. :)

Rachel--24 Collaborator

Oh....I got one of the shower filters at Bed Bath and Beyond. They didnt have the tub ones but I'm set for my shower head....gotta order the other one online.

I'm about to be chlorine-free. :D

Sheeesh my list of "free's" is really really long. :blink:

EDIT:

I ordered my bath ball....I am soooo set. The bath ball is easy...I can carry it back and forth from my mom's to my house. :)


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor
I couldnt get on the board for awhile....was I the only one?? :unsure:

I don't know.

Talitha was playing Oregon Trail 5 and it took her almost 3 hours. :blink: I told her that's the last time she plays a whole game through in one sitting.

NoGluGirl Contributor

Dear CarlaB,

I would be more than happy to shorten my posts for you! It took me forever to type that! I am a quick typest at 65 wpm, but my brain needs more time to think about what to say! LOL! Maybe I have Lymebrain too! I have to take frequent breaks as well when reading. I get double vision and stuff, which hinders my concentration further.

Dear Laura,

We are all so happy you finally were diagnosed! Sorry it is something so nasty, though! Your head is probably spinning right now! All of this information you are being bombarded with about supplements and treatment can get confusing and overwhelming. Of course, you are probably just ecstatic to have an answer, as anyone would be!

Dear lonewolf,

Good luck on finding a dentist! We will be watching for a reply about your amalgams. These things are complex. It is worth taking the initiative, though. Health is more important than people normally realize. Those who have good teeth, eyesight, and health should stop taking it for granted!

Sincerely,

NoGluGirl

Rachel--24 Collaborator
Dear CarlaB,

I would be more than happy to shorten my posts for you! It took me forever to type that! I am a quick typest at 65 wpm, but my brain needs more time to think about what to say! LOL! Maybe I have Lymebrain too! I have to take frequent breaks as well when reading. I get double vision and stuff, which hinders my concentration further.

NoGluGirl,

I dont think Carla was asking you to shorten your posts....just to break them up. I have a hard time reading also when all the words arent broken up into smaller paragraphs.

If you look back at my posts you will find that they are all broken up into only a few sentences and then a "break". I think this is what Carla meant.

Some of my posts are very long....but when they are broken up its easier to follow. I get kind of lost and unfocused with big paragraphs.

CarlaB Enthusiast
NoGluGirl,

I dont think Carla was asking you to shorten your posts....just to break them up. I have a hard time reading also when all the words arent broken up into smaller paragraphs.

If you look back at my posts you will find that they are all broken up into only a few sentences and then a "break". I think this is what Carla meant.

Some of my posts are very long....but when they are broken up its easier to follow. I get kind of lost and unfocused with big paragraphs.

Yes, this is what I meant. If you ever look at a Lyme board, everyone posts this way because for some reason it's hard to read the big blocks of information. If I was asking anyone to shorten posts it would have been Rachel! Hers are the longest. ;):lol::lol::lol: But they're really easy for me to read, and I don't want her to shorten them or you either, both of you have good information.

I couldn't get on the board for a while either. <_<

Andrea, a lot of the pills are supplements and probiotics ... but a lot are meds, too. Then with my braces there's a bar going across the roof of my mouth to expand my palate, and the little pills get stuck under it, which makes them hard to swallow. :blink:

Rachel, I think most Lyme docs use IV abx as a last resort. It's a tip off to insurance companies, so from what I've read, most try orals first. Most people I hear about being in IV have picc lines and do it themselves at home.

Judging by the herx in my head yesterday, I think it's getting to the bugs in my brain! :P I felt very intoxicated last night, like I'd been drinking. Adam had trouble following what I talked about because it was so incoherent.

The funny thing is, I always do fine when I type things out, it's the talking I have trouble with sometimes. Maybe it's because I can go back and read what I wrote! :lol:

Rachel, I remember someone on Lymenet mentioning that they were taking Mepron by the drop, while the rest of us take it by the tsp. I don't think you're alone on needing to go slow.

Plus, I don't work, so if the meds make me feel like I need to stay in bed all day, I can. I think that probably makes a difference, too ... and that's how I've felt ever since starting this new one! I didn't move to the couch yesterday till the kids started coming home from school!

AndreaB Contributor

Carla,

I'm glad you are able to stay home. The bar in your mouth doesn't sound to comfortable.

I made mac and cheese last night with our typical cashew cheese sauce and Talitha's tummy started hurting pretty quick. I was hoping we could have it once in awhile if she wasn't on any other nuts.

Trying to get her to start probiotics but she wants in blended into frozen strawberries like a smoothie. Does anyone know how these taste outside the capsule? My doctor had said that they are doing a study in Europe/England with babies and probiotics so I'm assuming the taste must not be bad or the baby wouldn't nurse. I don't know that those will help but we thought we'd try.

Still think we need to do bioSET or something but don't have the funds right now. :(

dlp252 Apprentice

Stupid lack of money! :angry::lol:

My friend emailed me a great cruise a couple of days ago...I spent all day yesterday researching and looking stuff up to see if I could afford to go. It's actually a great deal for a 17 day cruise to Italy, France, Spain and Portugal. But it's the other stuff that is going to be a deal breaker...I added up the air fare, shore excursions, spending money etc. and I don't think I can afford it.

Stupid lack of money! :angry::lol:

I have money in my savings to cover it already, but who knows what's coming up this year healthwise, so I don't want to use that, and I could save more than half of the money, but that means I wouldn't be able to pay down my credit cards.

Stupid lack of money! :lol:

AndreaB Contributor
Stupid lack of money! :angry::lol:

I hear you loud and clear.:(

That cruise sounds good though. :)

CarlaB Enthusiast
The bar in your mouth doesn't sound to comfortable.

It's been there since I got the braces, so I'm used to it, but it does make it hard to swallow pills ... or eat spinach. :lol:

Sorry the mac and cheese didn't work out.

Cruise sounds GREAT! Health sounds even better though! ;)

Andrea, what do you think is causing all these food sensitivities with your family?

AndreaB Contributor
It's been there since I got the braces, so I'm used to it, but it does make it hard to swallow pills ... or eat spinach. :lol:

Andrea, what do you think is causing all these food sensitivities with your family?

I would think all greens would be a problem. :)

I'm suspecting metals with our sensitivities. I really want to get bioSET testing done but we maxed out our credit cards with everything last year and now our funds our maxed out paying on them. We'll have to see if this autumn we can work anything in although things will still be extremely tight. Hubby wants me to take care of my teeth first but that's more of a money outlay than I want right now. I'm more concerned about Talitha's growing intolerances and next would be Seth. I have 4 more crowns I need and the teeth are a little cracked but they aren't bothering me....yet. :)

I could be wrong but with my amalgams (which I've had for over 20 years), the fluoridated water before our filter in the kitchen, hubby's massive shots in the military......just seems like that would be it.

Rachel--24 Collaborator
Health is more important than people normally realize. Those who have good teeth, eyesight, and health should stop taking it for granted!

YEAH!! I agree.....nobody realizes it until its gone.

Stupid healthy people! :angry:

:lol::lol::lol:

Just kidding.....I couldnt resist that one. :P

CarlaB Enthusiast

Yes, Andrea, that's true. All greens are a problem. :lol:

You are probably right about the metals, and the kids could have been exposed through you. What I wonder, though, is what pushes someone over the edge? So many people have amalgams and never get sick, then there are others who do. I know it can be because of Lyme, but I wonder what else can do it?

Rachel--24 Collaborator
If I was asking anyone to shorten posts it would have been Rachel! Hers are the longest.

Mine are long?? :unsure:

:lol: Seriously....I would get lost in my own posts if I didnt break everything up! Even the stuff that I copy over gets broken up....otherwise I'll try to read it and end up like this :wacko:

CarlaB Enthusiast
Mine are long?? :unsure:

:lol: Seriously....I would get lost in my own posts if I didnt break everything up! Even the stuff that I copy over gets broken up....otherwise I'll try to read it and end up like this :wacko:

Me, too. I like that you do that.

AndreaB Contributor
You are probably right about the metals, and the kids could have been exposed through you. What I wonder, though, is what pushes someone over the edge? So many people have amalgams and never get sick, then there are others who do. I know it can be because of Lyme, but I wonder what else can do it?

I don't know the answer to that either. We all do have a celiac gene. Micah and hubby have 2, don't know about Seth and Talitha and I have 1. Micah has very little intolerances, so I'm clueless. I wasn't tested for candida although I could have been with the allergy testing.

I don't really think my amalgams are causing me much of a problem and I'd probably be ok if I just get the crowns done and leave the others alone until they would need to be replaced. I guess I'll find out more whenever I can get bioSET done. The water where I grew up was very good. Maybe part of it is deteriorating water quality and more metals from that.

I'm not a camper and was only around deer areas a few times so I don't really suspect lyme. We have had numerous flea bites over the years, including when we moved to this place before the situation was resolved. From what you guys have written that is extremely slim as well.

None of us (except Micah) tested through enterolab for malabsorption so I would assume our intestines are ok. I haven't had a yeast infection for I don't know how long. I would think if it were candida that it would be worse but maybe that is becoming a problem.

AndreaB Contributor
:lol: Seriously....I would get lost in my own posts if I didnt break everything up! Even the stuff that I copy over gets broken up....otherwise I'll try to read it and end up like this :wacko:

I like them broken up for a reference point when I get interupted, which is frequently. :rolleyes:

CarlaB Enthusiast

Oh, I didn't mean to suggest you had Lyme! I was just wondering what else could cause the metals to be an overload on the system.

AndreaB Contributor
Oh, I didn't mean to suggest you had Lyme! I was just wondering what else could cause the metals to be an overload on the system.

I know you didn't. :) I just like to cover all the bases of what you guys have talked about to see if it might apply to us.

I went through this thinking with lyme a few months ago.

I just seems that for a lot of people, genetics must play a big part.

AndreaB Contributor

I just noticed you put up a new avatar. I like it. :)

The thing that clued me in is you and hubby were looking a big squished and blurry.

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. - Wheatwacked replied to plumbago's topic in Related Issues & Disorders
      8

      Anyone else with very high HDL?

    2. - plumbago replied to plumbago's topic in Related Issues & Disorders
      8

      Anyone else with very high HDL?

    3. - trents replied to plumbago's topic in Related Issues & Disorders
      8

      Anyone else with very high HDL?

    4. - knitty kitty replied to plumbago's topic in Related Issues & Disorders
      8

      Anyone else with very high HDL?

    5. - trents replied to Tyoung's topic in Related Issues & Disorders
      1

      Celiac Disease and Mild Chronic Gastritis


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,908
    • Most Online (within 30 mins)
      7,748

    Rhan
    Newest Member
    Rhan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      @plumbago, I found a good PDF on cholesterol:  Unlocking the mysteries of VLDL: exploring its production, intracellular trafficking, and metabolism as therapeutic targets I just started it, but it may have answers for us, with whacky cholesterol.  The pharmaceuticals don't seem to be interested in anything but statins.   "The nicotine in tobacco causes a decrease in the HDL cholesterol level. " Maybe you should start smoking? 🤪 I have high LDL and low HDL.  It is genetic mutations in the LDLR, APOB, PCSK9, or LDLRAP1 genes. My whole family is on statins for Familial Hyperliperdemia except me.  December I had ultrasound and cat scan for Carotid Artery blockage and both sides are above 85% blockage.  I started on Atorvastatin and that made me weaker than ever, even with CoQ10.  I asked for and got prescription for 2000 mg/day Nicotinic Acid B3 and in the 3 weeks my numbers changed. I am feeling realy good lately.  Stronger and more flexible.  Sleeping better.  Getting roto router (TCar) as soon as I get clearance from a cardiologist.  I expect that by my next blood panels in April to be even better. I am beginning to believe that like vitamin D where the RDA only accounts for preventing Rickets, the RDA for B3 is way underestimated.   From Oct 22 to Jan 17: A1c from 13.5 to 10.2 eGFR from 55 to 79 Triglyeride from 458 to 362 Total cholesterol from 245 to 264 HDL from 27 to 44 VLDL from 84 to 68 LDL from 134 to 154
    • plumbago
      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
    • knitty kitty
      Wow, @plumbago, Curiouser, and curioser... Have you been fasting?  Apparently HDL levels increase after fasting... https://ajcn.nutrition.org/article/S0002-9165(23)31185-7/abstract   I must say it, try taking some Thiamine.  Thiamine helps regulate lipoproteins... Thiamine helped lower HDL in this study whether they had diabetes or not. https://pmc.ncbi.nlm.nih.gov/articles/PMC3921172/#:~:text=Serum thiamine and its derivatives,supplementation (p %3D 0.009).
    • trents
      Welcome to the forum, @Tyoung! I would assume for the time being that the mild gastritis and the celiac disease are connected and that once you get a good handle on gluten free eating and experience significant healing in the lining of your duodenum, you will also see improvement in the gastritis as well. Gastritis is more often than not an accompanying finding that is commented on in the post scope/biopsy notes when people are positive for celiac disease. 
×
×
  • Create New...