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

Rachel--24 Collaborator
cannot......get.....sucked.......back.....into the vortex..... ;)

:lol::lol:

OMG....and what a vortex it was last summer!!! :blink:

Glad your back Susan....and I love that new picture of the Dingos. :)

You must get baby pictures scanned...we have to see Mini DingoGirl. :D


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
NoGluGirl Contributor

Dear Patti, Bev, and Donna,

Your pics are so cute! I am going to try and get some more to put up. I have a Glamour Shot photo from when I was 13. I will try and load that in here. Alison wants to see a pic of my dad.

Dear Andrea,

I think the only one you missed was Laura.

Dear Susan,

Weed eating pigs! ROFLMAO! :lol: Now that is hilarious! Can you imagine trying to explain that on your taxes? I bet that guy had to be very creative on his W-2! :lol:

Dear Bev,

I know Claire is familiar with how you feel. It is a tough call to make. Having a child is a big decision. When your health is poor, you feel like you are stuck. My mother is complaining about grandchildren, and it is like "I told you I was going to adopt from China!" I am not well enough to care for a child at the moment. I was sort of hoping to have a husband first, too. A baby is a lot of work for two healthy people, let alone a sick one!

Here is something interesting about adoption. Jimmy Durante (actor, comedian, songwriter, singer) and his second wife adopted. He was already older in 1960 when he and his second wife married. Exactly one year later on Christmas Day, 1961, they wanted to adopt. However, it was brought up that they believed he was too old to care for a child. The judge ignored that argument, saying "I have heard this man sing "Young at Heart!" Mr. Durante and his wife were granted the adoption. :) He doted on Cecelia (he called her CeCe), until the day he died in 1980.

You are welcome for the info on PPIs. Nexium made me nauseous. I could not tolerate it. PPIs tend to have a rebound effect on your system a lot. Once you go off of them, or try to, your stomach overcompensates by producing an acid surge. I think I know something you might be able to have. As long as you do not have an ulcer, you could get orange peel extract in capsules at the healthfood store for reflux. It is supposed to be very helpful. From what you said, your big trouble is the sphincter of your esophagus not closing all the way. There is your primary cause, you just have to find soething that relaxes it so it closes when it is supposed to.

Dear Donna,

The pain under your ribcage could be your gallbladder. You said you have had difficulty with your duct before. That is exactly where mine hurts when I eat too much fat. The other possibility is yeast. It can cause bad reflux, D, and stomach problems in general. Nausea is known to be common with it. Also, here is something interesting I read in one of the books about yeast. It said that women who are pregnant who have bad morning sickness likely have Candida.

Dear Claire,

I need to start taking a multivitamin at the very least a day. The chocolate makes me feel better. There must be magnesium or something in it that I need. It is just, my trouble with the cravings is, I have a period off and on all the time! :( This has been going on for more than two years.

I am always menstrual! :blink: If I had to guess, I would say Candida is to blame! :angry:

Dear Laura,

I am sorry to hear you are herxing. That is always miserable. Hopefully, you will be better soon. This stuff always tends to get you down. Maybe cuddling with your boyfriend will make you feel better! Oh, yeah, you do look like a model in that photo!

RACHELVILLE NEWS

Today there were new additions to the dictionary. They are:

Weed-eating pigs - pigs which consume marijuana and become intoxicated

Lyme-Centric - Centered around, related to Lyme Disease

The trial date for the Auxigro Lawsuit has been set. It has been arranged some of the Redneck Deer defending the town shall testify. Buck is the first to volunteer. His comment was "Git-R-Done!" Bongo, my favorite purple glittery bat wanted to testify, but I explained to him that the pink glittery berry scented tirds are not allowed in the courtroom by law. He was very disappointed. I told him he can make the statement to the press, though. He was happy. :lol:

Sincerely,

NoGluGirl

DingoGirl Enthusiast
You must get baby pictures scanned...we have to see Mini DingoGirl. :D

oh holy loooooooooord...... ;) I will see what I can do. Also have some photos that I think I'll scan of a certain angry little singer that I once dated. no names at this point, please. :P But y'all will like it, I think.

Dear Susan,

Weed eating pigs! ROFLMAO! :lol: Now that is hilarious! Can you imagine trying to explain that on your taxes? I bet that guy had to be very creative on his W-2! :lol:

Hi Jin, have we met? :) Um, TAXES? W-2's? in Big Sur? now that did make me crack up! That boy, I assure you, did not even file taxes.....I am not sure he had an address...the yert was on someone's property......over 40 minutes off the main road, on a very windy adn dangerous cliff-side road - - perilous driving - he could hide there forever.......with his weed-eating tweedle pigs!

can't sleep......but going back to try!

Thanks for the warm welcome back to R-ville. I can assure you, I won't be around like last summer's madness (but what FUN did we have!!) but will pop in more regularly and thanks, Andrea, I WILL ask questions.

g'night!

NoGluGirl Contributor
oh holy loooooooooord...... ;) I will see what I can do. Also have some photos that I think I'll scan of a certain angry little singer that I once dated. no names at this point, please. :P But y'all will like it, I think.

Hi Jin, have we met? :) Um, TAXES? W-2's? in Big Sur? now that did make me crack up! That boy, I assure you, did not even file taxes.....I am not sure he had an address...the yert was on someone's property......over 40 minutes off the main road, on a very windy adn dangerous cliff-side road - - perilous driving - he could hide there forever.......with his weed-eating tweedle pigs!

can't sleep......but going back to try!

Thanks for the warm welcome back to R-ville. I can assure you, I won't be around like last summer's madness (but what FUN did we have!!) but will pop in more regularly and thanks, Andrea, I WILL ask questions.

g'night!

Dear Susan,

You never know! We could have met somewhere! :lol: So the yert was on someone else's property. Somehow, Tommy Chong comes to mind! :P I love him! Leo on That 70's Show! :lol: If the yert was in Colorado, he and his weed eating Tweedle pigs would bring a whole new meaning to "Rocky Mountain High"! :lol:

Sincerely,

Jin

P.S. Rinne - I see you! :)

rinne Apprentice

I'm back at page 980, just catching up and suddenly realized that I missed the one year celebration of this thread. Darn.

So glad to find old friends wandering back in and new ones finding Rachelville too. :wub:

Really sleepy, it has been a busy couple of days and all is well. My little business is registered, my caterer's license is on the way and small contracts for the "Rinne Bars" are beginning to happen.

I'll be back tomorrow after I've caught up.

Just one thing, anything that stops acid production in your stomach stops the absorption of Vitamin B, neurological problems can result from this. It is a good idea to get your doctor to check you Vitamin B levels. The standard chart that doctors refer to as to the acceptable levels of B12 say from 178 - 788 (approx) but anything lower than 400 should give you cause for concern.

This fast reply won't let me use emoticons ): oh well LOL :wub:

AndreaB Contributor
Awww...poor T. :(

I hope shes feeling alot better today.

Stupid banana. :angry:

She's fine now. She was better yesterday afternoon.

I don't know what it is about bananas and this family. Micah is the only one that can tolerate them. I gave Seth some and he seemed to do ok but I'm not going to push it. He had gotten to the point where he wouldn't eat baby food that had banana in it. He does have a diaper rash again so it's either that or the orange. Talitha is highly intolerant to citrus (according to ELISA) so I'm wondering if Seth will follow suit if the mercury is behind it. :unsure:

Thanks for the mercury posting. :) I sure wish we could afford ART sooner rather than later. :(

AndreaB Contributor

Night Rinne.

Sounds like you had a good launch with your bars. :)

Look forward to updates as you have them.


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



Celiac.com Sponsor (A8-M):



NoGluGirl Contributor
I'm back at page 980, just catching up and suddenly realized that I missed the one year celebration of this thread. Darn.

So glad to find old friends wandering back in and new ones finding Rachelville too. :wub:

Really sleepy, it has been a busy couple of days and all is well. My little business is registered, my caterer's license is on the way and small contracts for the "Rinne Bars" are beginning to happen.

I'll be back tomorrow after I've caught up.

Just one thing, anything that stops acid production in your stomach stops the absorption of Vitamin B, neurological problems can result from this. It is a good idea to get your doctor to check you Vitamin B levels. The standard chart that doctors refer to as to the acceptable levels of B12 say from 178 - 788 (approx) but anything lower than 400 should give you cause for concern.

This fast reply won't let me use emoticons ): oh well LOL :wub:

Dear Rinne,

This is so exciting! Our very own resident taifun! :P Rachelville is so excited! Congratulations on your catering license! Also, regarding the vitamin levels, I have been concerned about that. I have been on PPIs for so long, and am aware that if you are too alkaline in your stomach it can actually cause further problems. I have never had mine checked. Supplements would likely do no good, unless they are sublingual or injected.

Dear Rachel,

Okay, I have a suggestion. For the Lyme Group, in case I end up joining, I must say we need to be stylish. I was thinking we could wear white suits and fedoras, with a Lyme green band on the hat. Since there is a guy in the group now, how about calling it the Borrelia Buddies? Just because we are sick does not mean we cannot look good meanwhile! ;)

Sincerely,

NoGluGirl

happygirl Collaborator

Goodmorning ladies! Hope that everyone is having a good weekend so far! Its nice to see everyone back on here.

Susan, the picture you were referring to was taken in 2002 while I was in school....needless to say, I was at a more normal weight, and um, certain parts :) of me were um, larger than what they are now. :) Happy to have you back on here, my dear!

Rinne, good luck with your bars...and please keep us updated. So exciting for you!!!! It really is good to have everyone back on.

Bev, you'll have to email me and let me know who your doc is. I'm excited for you. The good news with many LLMDs is that they don't "just" look for Lyme...they look for other infections, etc that could be causing problems. I was positive for other non-co-infections, and part of my treatment includes fixing those problems.

Which leads me to my update:

I see my LLMD or NP every two weeks (usually 2 NP and then a MD). I have blood draw at least once a week. I am on Omnicef and now Zithromax.

I go in 2x a week, every week, for IVs (Vit C and other vitamins, minerals, etc). Unfortunately, I have had increasing trouble tolerating the IVs. My right arm (the regular vein used for blood draws, etc) has a vein that has now hardened and I have a dark streak where you can see it. It is painful but luckily, it is starting to lessen. We now use multiple veins up and down my arms, some of which like me more than others. They have 3 'med tech/LPN' level technicians and 1 RN...because of my sensitivity, the pain that I have some days, the trouble with my veins, etc., only the RN actually does my IVs and gets me started. If it weren't for their comfort, I think I would have given up. I was really ready to quit some weeks, after having the IVs started multiple times in multiple veins, and none of them working/being extremely painful. But, the past few times I have tolerated pretty well. Luckily, my job is great about it, as the IVs take 2-3 hours (my body is really slow in absorbing it). 2x a week, plus doctors appts, etc.

I've developed some other problems, yeast wise, because of the abx. I've been on diflucan for a few weeks now. They are re-testing me to see if they need to switch the meds.

My original co-infections tests (jan/feb?) were positive for RMSF, but no others. Because of some of the symptoms I was having, the NP re-ran the tests this month. I am no longer positive for RMSF!!!!

My bilirubin (liver) levels have been elevated since my pre-celiac diagnosis, with no explanation why. In recent months, it began rising again. This latest round of bloodwork reported that it dropped to WELL within normal ranges...not even "high" normal, but right smack dab in the middle of normal. Considering that it has been high for at 3+ years (I went through my records and they were all elevated), I was really excited about it!!!

We haven't re-tested my Lyme numbers yet...probably in May/June. They are adding an anti-viral since my EBV IgG titers were so extremely high. I'll probably start that today.

I'm having the blood test run this week for HHV-6, which has been linked to various issues. I'm also going to ask (at my next app't) to have the C D 57 test run.

We FINALLY got my biopsy samples from my endoscopy in VB and they were sent to MDL to do a PCR on the samples. Turns out, they sent the slides of my biopsies, and they actually need the paraffin blocks of my samples. So, now I have to find out if they can send them, and then start the process all over again.

Although day to day, I don't see a lot of a noticeable difference, over time (I've been on Omnicef and IVs for two months now), I have seen a difference. My weight is pretty stable, around 104-106 (although it did peak at 109 at one point!!!) I can eat food pretty normal, except for gluten and eggs (even though I tested normal for eggs, I know I can't tolerate it!). My energy is better, but I still get knocked down pretty hard when I apparently overdo it. This was my first flare in a week and a half or so, so it doesn't surprise me. I would say I am on a steady, but gradual, incline!

Ok, that is enough of my ramble, but that is my update....

dlp252 Apprentice
I always like black and whites for some reason. I change alot of my photos to b&w cuz they just have a whole different "feel" to them.

:lol: I have no choice, remember, cameras weren't invented yet when I was young--only B&W available then. :lol:

cannot......get.....sucked.......back.....into the vortex..... ;)

Too late sweetie! :lol: You're sucked!

thereitness

:lol: you said thereitness

Yup...my coinfections test was negative but ART reveals Babesia. <_<

I asked my Doc tonight what he thought about ART.

He said he always prefers to actually *see* something definate...he prefers clinical laboratory results but because of the nature of these diseases its just not always possible. He does value these other more alternative methods of testing.....which may pick up what cant be found in the blood.

We discussed Babesia in particular....I told him even though my bloodwork was neg. I could have a different strain than what was tested.

He agreed....there are 20 strains of Babesia and we're only able to test for 2 of those strains. So yeah...that leaves 18 strains not even available for blood testing. He said from a clinical standpoint he feels I have Babesia....but its nice to have it confirmed with stuff like ART and BioSET.

This is encouraging! I'm sort of glad he thinks this way. I think I wouldn't be comfortable if he JUST treated me on the basis of what ART or BioSET said, but I'm glad he considers them and considers them in relation to the treatments. Did that make sense?! :lol: I finally got a little sleep last night and I think my body doesn't know what to do with it! :lol:

So are you getting the CD57?? :lol:

The pain under your ribcage could be your gallbladder. You said you have had difficulty with your duct before. That is exactly where mine hurts when I eat too much fat. The other possibility is yeast. It can cause bad reflux, D, and stomach problems in general. Nausea is known to be common with it. Also, here is something interesting I read in one of the books about yeast. It said that women who are pregnant who have bad morning sickness likely have Candida.

It could be I guess. Yes, I still have the enlarged duct too. I think my PCP will refer me back to the GI doc anytime I want...I actually don't NEED her to refer me, I can go on my own, but I think if she sends me he won't think twice about retesting me whereas if I go on my own I think he might think I'm being paranoid, lol.

Also have some photos that I think I'll scan of a certain angry little singer that I once dated. no names at this point, please. But y'all will like it, I think.

:lol: Ohhhhh goodie, can't wait. :lol:

Just one thing, anything that stops acid production in your stomach stops the absorption of Vitamin B, neurological problems can result from this. It is a good idea to get your doctor to check you Vitamin B levels. The standard chart that doctors refer to as to the acceptable levels of B12 say from 178 - 788 (approx) but anything lower than 400 should give you cause for concern.

Wow, sounds like your venture is off to a great start! That's interesting about the B vitamins and that makes sense. I was on the antacids last year for my scopes then again in Dec/Jan for the H.Pylori...no wonder Anna at BioSET said my body was craving the B vitamins, lol.

Okay, I have a suggestion. For the Lyme Group, in case I end up joining, I must say we need to be stylish. I was thinking we could wear white suits and fedoras, with a Lyme green band on the hat. Since there is a guy in the group now, how about calling it the Borrelia Buddies? Just because we are sick does not mean we cannot look good meanwhile! ;)

My head it too big for hats, lol. :lol: Seriously! Hats don't fit me, and well, me and suits don't mix...but I can wear white jeans and tee-shirt, lol. I have a lyme green purse though. :lol:

dlp252 Apprentice
Which leads me to my update:

...

I go in 2x a week, every week, for IVs (Vit C and other vitamins, minerals, etc). Unfortunately, I have had increasing trouble tolerating the IVs. My right arm (the regular vein used for blood draws, etc) has a vein that has now hardened and I have a dark streak where you can see it. It is painful but luckily, it is starting to lessen. We now use multiple veins up and down my arms, some of which like me more than others. They have 3 'med tech/LPN' level technicians and 1 RN...because of my sensitivity, the pain that I have some days, the trouble with my veins, etc., only the RN actually does my IVs and gets me started. If it weren't for their comfort, I think I would have given up. I was really ready to quit some weeks, after having the IVs started multiple times in multiple veins, and none of them working/being extremely painful. But, the past few times I have tolerated pretty well. Luckily, my job is great about it, as the IVs take 2-3 hours (my body is really slow in absorbing it). 2x a week, plus doctors appts, etc.

I've developed some other problems, yeast wise, because of the abx. I've been on diflucan for a few weeks now. They are re-testing me to see if they need to switch the meds.

My original co-infections tests (jan/feb?) were positive for RMSF, but no others. Because of some of the symptoms I was having, the NP re-ran the tests this month. I am no longer positive for RMSF!!!!

My bilirubin (liver) levels have been elevated since my pre-celiac diagnosis, with no explanation why. In recent months, it began rising again. This latest round of bloodwork reported that it dropped to WELL within normal ranges...not even "high" normal, but right smack dab in the middle of normal. Considering that it has been high for at 3+ years (I went through my records and they were all elevated), I was really excited about it!!!

We haven't re-tested my Lyme numbers yet...probably in May/June. They are adding an anti-viral since my EBV IgG titers were so extremely high. I'll probably start that today.

I'm having the blood test run this week for HHV-6, which has been linked to various issues. I'm also going to ask (at my next app't) to have the C D 57 test run.

We FINALLY got my biopsy samples from my endoscopy in VB and they were sent to MDL to do a PCR on the samples. Turns out, they sent the slides of my biopsies, and they actually need the paraffin blocks of my samples. So, now I have to find out if they can send them, and then start the process all over again.

Although day to day, I don't see a lot of a noticeable difference, over time (I've been on Omnicef and IVs for two months now), I have seen a difference. My weight is pretty stable, around 104-106 (although it did peak at 109 at one point!!!) I can eat food pretty normal, except for gluten and eggs (even though I tested normal for eggs, I know I can't tolerate it!). My energy is better, but I still get knocked down pretty hard when I apparently overdo it. This was my first flare in a week and a half or so, so it doesn't surprise me. I would say I am on a steady, but gradual, incline!

Ok, that is enough of my ramble, but that is my update....

Wow, sounds like progress to me! The IVs don't sound fun. I had my appointment with the LLMD this week and while having my blood drawn, there was a girl getting an IV. It looked like she was there for a while and would be there for a while...I was wondering how long, now you've answered that question, lol. She had a cooler with food in it beside her...that made me nervous, lol. I'm scared of having to have the IVs. :(

Wow, your WEIGHT!!! That's fantastic! You were pretty low there for a while, this sounds much more healthy and fun, lol.

NoGluGirl Contributor
:lol: I have no choice, remember, cameras weren't invented yet when I was young--only B&W available then. :lol:

Too late sweetie! :lol: You're sucked!

:lol: you said thereitness

This is encouraging! I'm sort of glad he thinks this way. I think I wouldn't be comfortable if he JUST treated me on the basis of what ART or BioSET said, but I'm glad he considers them and considers them in relation to the treatments. Did that make sense?! :lol: I finally got a little sleep last night and I think my body doesn't know what to do with it! :lol:

So are you getting the CD57?? :lol:

It could be I guess. Yes, I still have the enlarged duct too. I think my PCP will refer me back to the GI doc anytime I want...I actually don't NEED her to refer me, I can go on my own, but I think if she sends me he won't think twice about retesting me whereas if I go on my own I think he might think I'm being paranoid, lol.

:lol: Ohhhhh goodie, can't wait. :lol:

Wow, sounds like your venture is off to a great start! That's interesting about the B vitamins and that makes sense. I was on the antacids last year for my scopes then again in Dec/Jan for the H.Pylori...no wonder Anna at BioSET said my body was craving the B vitamins, lol.

My head it too big for hats, lol. :lol: Seriously! Hats don't fit me, and well, me and suits don't mix...but I can wear white jeans and tee-shirt, lol. I have a lyme green purse though. :lol:

Dear Donna,

You are probably right to wait for a referral from your PCP. That way, you will get into the GI doctor quicker. Plus, as you said, those specialists have a bad habit of accusing people of being crazy. :angry:

I have seen 3 or 4 GI docs, probably 10 or more if you count the entire team up at IU Med that worked on me. God did that suck. Anyway, it could be that gallbladder or bile duct! You may have had gallstones pass through and mar the inside of it, making it swell.

White jeans and a t-shirt could work. I still have to have a fedora for me! My Mafia is going to be stylish! Afterall, they are cold-blooded, gorgeous women. They deserve the best! :lol: As a member of La Bella Mafia, I have a reputation to uphold. :lol:

Dear Laura,

Yay, no more RMSF! I bet you have felt rough off and on. Those meds can really throw your body through a loop! We were wondering how you were. We have not heard as much from you lately.

I know the misery with Candida can be tough. I cannot take Diflucan. I have no idea if there is anything I could tolerate. I would rather take an herbal approach if possible. I can tolerate Zithromax.

It is one of the few antibiotics that do not make me terribly ill.

Those IVs can really hurt! If you get someone that does not know what they are doing, they can really bruise you! People need to be careful! When you have to have them repeatedly, it can mess up your veins. This is a major issue at times. I am glad your job is good about allowing your treatments. By the way, your new pic is nice!

Sincerely,

NoGluGirl

dlp252 Apprentice

Okay, loaded a slightly different picture of me and my boyfriend Timmy, lol...I actually have a little tinsy hint of a smile. :lol:

Judyin Philly Enthusiast

hi rinne and laura

saw you on

just got caught up on you laura...you sure have been through alot

glad this is helping and your weight is stable.

rinne...what post # is your report of the Rinne Bars

don't want to go and hunt it down

sun is in and out so going out to the garden b/f the rain.

hugs to all the rest of you guys in Rachelville

have a great day

Judy

CarlaB Enthusiast
Also you have said that you were healthy when you had your kids...even if you had Lyme...you said you were in good health. That makes a difference. If you were in the state you're in now the outcome may have been different....thankfully...you ended up having a all these wonderful and healthy kids.

its just way too risky now. I dont even think I would be able to become pregnant or carry a baby full term at this point in time. :(

I think everyone has the right to their own decisions but I also think it would be extremely risky and unwise for someone who is very sick with Lyme...newly diagnosed or even very sick and undiagnosed to go ahead and actively try to become pregnant.

I was in good health when I got pregnant, but I did become symptomatic during three of my pregnancies. Of course, at the time, we thought it was just severe pregnancy symptoms ... it got worse with each pregnancy .... I couldn't even get out of bed most of the time ... couldn't eat either (so Adam fed me bread, LOL). Adam recently read some notes I wrote when I was pregnant with #4 and said he couldn't believe we even decided to have #5. I had dangerously high blood pressure induced by labor after #5, and ultimately, it was that scare that made us not have more.

You've got to remember, I'm talking from a different perspective than you. I think pregnancy is much scarier when you haven't had kids -- on all levels.

I was VERY ill with my last three pregnancies (not when I conceived though), yet would do it all over again. However, I agree that if you're as sick as some of us are, it would be unhealthy for the mother to try to conceive ... I would be more worried about the mother ... in fact, the reason we don't have more kids is because of how sick I get ... recently we talked about how we wanted another, but know that I can't handle it ... plus, we really don't want me to have to get off the meds. We'll just have to push for Morgan to find her hubby in college because there are a lot of baby crazy people in this house!!! ;):lol::lol:

It will be different for each person -- is it worth the risk to the mother's personal health? Is it worth the risk of having a child exposed to Lyme/mercury?

I would NOT take fertility drugs if I had chronic illness as I truly believe that is the body's way of saying it cannot handle it. I got pregnant the first month we tried with each kid :P , no wonder we have so many :lol: !

Looks like we definately have two sides of the story for people to read about here!! :lol: I'm not saying it's a good idea for everyone ... I'm just saying that it's a personal decision ... none of the available info is cut and dry on this. The three autistic kids I know were born to "healthy" mothers. I would base my decision more on the mother's health than the potential health problems to the baby.

I think my kids have an advantage knowing they were exposed to Lyme through me ... if they have mystery health problems, they will have a good idea why. They will also know to take care of themselves because of the potential to develop symptoms.

CarlaB Enthusiast
OMG - - I'm goign to get kicked out of Rville just as soon as I'm back in........

I really do feel physically great. :)

JUDY - - - - YOU CRAZY LADY - - they're not begging you back because you DO post in here, don't you?????? OF COURSE WE WANT YOU HERE YOU NUT!!!!!!!!!!!!!!!!

That's right, Judy!!

Susan, celiac is exotic ... you do have an exotic illness. :P If it weren't exotic, it wouldn't be so hard to diagnose!

I'm glad you're feeling so much better. I know I feel much better when my iron levels are in range. Congrats on the good numbers!

Also, your off-the-wall stories are one thing we love about you, you will never get kicked out of Rachelville for them ... the only reason they need editing at all is to fit the forum rules!! ;)

That guy was probably the nicest because people high on mj seem to be pretty easy going! Wonder how the pigs fared that summer??? :lol: They were probably the nicest pigs around!

CarlaB Enthusiast
Thanks for all of your support this past year Andrea. :)

Thanks for your encouragement and motherly henliness. ;)

Ditto here, too!

jerseyangel Proficient

Laura--That is very encouraging news! Even though it's difficult and painful at times--aren't you glad they're *doing* something :D I think you're just gonna keep getting better and better. Be patient, and give it time. I'm just so happy that you found these doctors!

Donna--How darn cute were you!!! (Still georgeous, but come on...what a face!)

Rinne, please say your new bars don't have coconut in them.....either way, I wish you much luck with them :)

Andrea--Glad to hear T feels better. Sounds like your family has a banana thing going on. Probably best to stear clear of them with S. ;)

Hi Susie and Judy :D Susie--Such GREAT news about your tests! Yippee!!!

~~~~~~~~~~

I had another water problem 2 weekends ago. Mark and I were out, and instead of ordering tea, I got a bottle of San Pelligrino water. About 15 minutes after I drank it, I got the same nausea that I get with filtered water. It was awful--we were at least 20 minutes from home and I got paniky.

I emailed the Nestle company (who I found out owns them) and still haven't received an answer as to whether they filter the "mineral spring" water.... :angry:<_<

I tell ya--I go nowhere without my own water ;)

rinne Apprentice
Rinne, good luck with your bars...and please keep us updated. So exciting for you!!!! It really is good to have everyone back on.

......

Which leads me to my update:

.....

My original co-infections tests (jan/feb?) were positive for RMSF, but no others. Because of some of the symptoms I was having, the NP re-ran the tests this month. I am no longer positive for RMSF!!!!

.....

Although day to day, I don't see a lot of a noticeable difference, over time (I've been on Omnicef and IVs for two months now), I have seen a difference. My weight is pretty stable, around 104-106 (although it did peak at 109 at one point!!!) I can eat food pretty normal, except for gluten and eggs (even though I tested normal for eggs, I know I can't tolerate it!). My energy is better, but I still get knocked down pretty hard when I apparently overdo it. This was my first flare in a week and a half or so, so it doesn't surprise me. I would say I am on a steady, but gradual, incline!

That is really good news. :)

The "Rinne Bar" project is lots of fun and I intend on keeping it that way, thanks to everyone for your support. I'll be serving them in the Rachelville Juice Bar.

"Borrelia Buddies" :lol:

Andrea, I watched a friend encourage her grand-daughter to eat a sandwhich, her grandchild really didn't want it. This child's father has major gluten issues and in fact I suspect my friend does too but just won't look at it. It made me think about how as babies we are simply fed, and even when we, as babies, :lol: spit food out our parents keep trying to feed it to us. I think that this over-rides our natural intelligence about what is healthy for us and contributes to a lifetime of eating issues. I don't know why I wrote this, I'm sure you know it already. :)

Back to B Vitamins, until I started it sublingually and had B12shots my nerves were stretched beyond my ability to maintain an even state of mind. :ph34r: I would lose my tiny little mind regularly :lol: (it is only funny now), I felt like I was going crazy. B Vitamins have made a HUGE difference.

I still have to go back, three pages to catch up but I see our Dingo Girl dropped into our Lymecentric :P:lol: thread.

Susan you have been part of my healing process, the laughter we shared helped me want to live and more and more I understand how much the wanting is part of the healing but not only the wanting, the trusting that we can heal. :wub: Big Time.

It was Celia who invited me to Rachelville back about page 75, I am so sorry to hear she seems to have slipped away but then maybe she is just taking a break for a while.

Beverly, I know what you mean about just taking some time to pay attention to what our bodies are saying, it's important and I'm glad you did it but very glad to see you posting again.

Hi Rachel, Patti, Donna...... :D .....and everyone else too.

CarlaB Enthusiast
She replied that no woman in her right mind would raise children :lol: . I had to laugh at that!

Uh, yeah, if you have your right mind when you get pregnant, you certainly lose it once you have kids!! Someone just told me she thought you lost brain cells with each pregnancy! :lol: I've never been accused of being in my right mind!

Adopting a kid is the same in the end as having a kid. I've done both. I'd adopt before I went through IVF ... but that's just me. I just wish someone would walk up to my front door and hand me a baby! ;) That actually happened to a friend of mine ... except she was a waitress and they "gave" her the baby in the restaurant!

CarlaB Enthusiast
I still think Judy is battling lyme and or co-infections......just my opinion though mind you. :)

Didn't she have bull's eye rashes? I think she did ... in that case, she does have Lyme unless they were treated immediately for a month or so, even then, it still could be Lyme because that doesn't always work.

CarlaB Enthusiast
We discussed Babesia in particular....I told him even though my bloodwork was neg. I could have a different strain than what was tested.

He agreed....there are 20 strains of Babesia and we're only able to test for 2 of those strains. So yeah...that leaves 18 strains not even available for blood testing. He said from a clinical standpoint he feels I have Babesia....but its nice to have it confirmed with stuff like ART and BioSET.

I was also clinically diagnosed. The drenching sweats, air hunger, and heart palpitations I get are from the babs ... they're symptoms that I get all the time but don't bother me as much as the fatigue, so I don't often mention them.

Not only do we not test for all of them, but like in Lyme testing, there are also false negatives because they check for immune reactions rather than the bugs themselves.

dlp252 Apprentice
I had another water problem 2 weekends ago. Mark and I were out, and instead of ordering tea, I got a bottle of San Pelligrino water. About 15 minutes after I drank it, I got the same nausea that I get with filtered water. It was awful--we were at least 20 minutes from home and I got paniky.

I emailed the Nestle company (who I found out owns them) and still haven't received an answer as to whether they filter the "mineral spring" water.... :angry:<_<

I tell ya--I go nowhere without my own water ;)

Wow!!! That's just amazing to me! A little scarey too, I might add. Thanks for the compliment, lol!!! I have one childhood photo which I'll post later this weekend...I have the most HUGEST smile on my face...I'm actually unrecognizable. :lol:

CarlaB Enthusiast
My head it too big for hats, lol. :lol: Seriously! Hats don't fit me, and well, me and suits don't mix...but I can wear white jeans and tee-shirt, lol. I have a lyme green purse though. :lol:

I agree, no suits for me. We can be like the red hat ladies and all pick out our own hats ... that way there will be some fun variety!

I have Lyme green nail polish. :lol: Seriously.

Laura, I'm glad things are going better for you and that you're making progress. :)

CarlaB Enthusiast

There's a funny cartoon on Lymenet. Go to Lymenet's forum, general support, "remember this" is the name of the thread.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,853
    • Most Online (within 30 mins)
      7,748

    Judy Ryder
    Newest Member
    Judy Ryder
    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
      The intestinal tract can be as long as twenty-two feet long, so intestinal damage may be out of the reach of endoscopy tools.  Some people have had more success with capsule endoscopy, but this method cannot take biopsies.  
    • knitty kitty
      @Jack Common, It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ For clarification, the weight of your slice of bread is not equal to the amount of gluten in it.   Gluten helps form those big holes in breads, so breads like thick chewy pizza crust and artisan breads contain more gluten than cakes and cookies.  
    • knitty kitty
      Sorry about that link.  It was meant for a different post.   Do consider taking high dose Vitamin D in order to get your level up to around 80 nm/l quickly.   This is the level where Vitamin D can properly work like a hormone and can improve the immune system and lower inflammation.  It makes a big difference.   I took high dose Vitamin D and really improved quickly.  I ate Vitamin D supplements throughout the day like m&ms.  My body craved them.  Very strange, I know, but it worked.   Before you have surgery, you really need to improve your vitamins and minerals.  Vitamins A and D, Vitamin C and Niacin are extremely important to skin health and repair.  Without these, the body does not repair itself neatly.  I've got a scar worthy of a horror movie.  My doctors were clueless about nutritional deficiencies. A sublingual Vitamin B12 supplement will work better for boosting levels.  Tablets or liquid drops in the mouth are easily absorbed directly into the blood stream.   Do bear in mind that about half of Celiac people react to the protein in dairy, Casein, the same as they react to gluten because segments of the protein in Casein resembles segments of the protein Gluten.  Some people lose the ability to produce lactase, the enzyme that digests Lactose, the sugar in dairy, as they age.  Others lose the ability to produce lactase because the intestinal Villi become damaged during the autoimmune response against gluten, and damaged chili can't produce lactase.   Do try Benfotiamine.  It has been shown to improve gastrointestinal health and neuropathy. Keep us posted on your progress!
    • ABP2025
      Thanks sending me additional links including how to test for thiamine deficiency. With regards to your first link, I wasn't diagnosed with giardiasis and I didn't take antibiotic for it. I try to generally stay away from antibiotic unless absolutely necessary as it might affect gut health. For treating phimosis, the doctor didn't give me antibiotics. I need to have a circumcision surgery which I haven't got around to schedule it.
    • ABP2025
      I'm not vegan, just vegetarian. I consume dairy but not egg. So I have started including some Vitamin D fortified milk as well as a multivitamin with 2000 IU daily. For Vitamin B12, like you said it's very difficult to get it from just vegetarian sources and have started consuming Vitamin B Complex daily. My PCP was worried when my Vitamin D result came out as It was 3.7 ng/ml last year. He said that being low for a lengthy time could have done some damage to the body over the years. Now, though Vitamin D level has improved after the supplements, I'm not sure if the neurological damage has already been done. I'll continue including the supplements and see if my symptoms improve. I'll also get tested for celiac to see if I need to be in gluten-free diet.
×
×
  • Create New...