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Omg...i Might Be On To Something


Rachel--24

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happygirl Collaborator

Susan: Since there is no "standard" for what a Lyme "positive" is, there really isn't a way to say its negative, either (unless you have absolutely no bands, generally). I was kind of in the middle. I had enough positive/significant bands that I WAS clinically diagnosed with Lyme. I also originally tested positive for RMSF, and that has since gone to negative. And then she thinks that I have either babesia or bartonella bc of my clinical presentation. Hope that helps clear it up.

I don't know exactly if/what the difference is with a flare/herx, or if their the same thing...I call mine flares, because its what happens. I go from somewhat normal to all my symptoms come back for a day-to a few days, then it eases.


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CarlaB Enthusiast
OMGosh...I may be singing my first SOLO this summer. I tried to weasel out of it, but I don't think they'll let me. :o Just came back from my small group practice and really, really tried to weasel...but nothing doing. :P

You can do it! Practice in the Church where you will be singing. There's a certain comfort in singing (for me playing) in a place with familiar surroundings. If you practice there frequently, it will be "normal" for you to sing there, so you will be comfortable.

Maybe they could let you have a couple mini-solos prior to the big solo so that it's not the first time you've sang alone ... just a line or two.

Then, just remember to BREATHE!

When I first started playing at Church ... I took a homeopathic remedy for stage fright. It worked great. It comes in one of those blue and white tubes.

Every time I see that thread I think of a parade. :lol: One would think I would think of food first, but no...I was thinking they were talking about a big parade. :lol:

Me, too.

happygirl Collaborator

btw-the hth conference is down the street from me---and I'll be out of town! :(

CarlaB Enthusiast
How come dog and cat ticks don't usually :unsure: carry lyme?

I've also read that they do ... who knows. All the ticks I ever saw on me were dog ticks.

CarlaB Enthusiast
yes you WILL be keeping more than ticks away in your getup, but better safe than sorry, eh?

And, to add to the ensemble, be sure you duct tape where the pants are tucked into the socks, and be sure ALL your hair is in a tightfitting hat. :lol:

CarlaB Enthusiast
Flares are like herxes in a way I think. I'm assuming it's part of the cycle of the critters. Flares are worsening of pain.

A flare is when the Lyme symptoms worsen. A herx is a reaction from the die off of the bacteria.

Sometimes you can't tell them apart, but technically there's a difference. I refer to a flare if it's not a normal time for a herx ... my herxes are 24 days apart ...

CarlaB Enthusiast
btw-the hth conference is down the street from me---and I'll be out of town! :(

Darn. I was thinking of going ... if one of you were going to be there, I'd definately go!

Rinne, I think you're right. I lived for years and years with this and had only minor symptoms. After having my amalgams out, I had minimal symptoms for over 10 years. It was definately something that my immune system was handling on its own.

The sweats were part of my decline. They started when my symptoms started to worsen from stress and another illness. I don't want to scare you, yet at the same time I want you to take them seriously. In your case, could they be menopausal symptoms? Do you have any cycle irregularity that may be signaling a change?

If not, you might want to look into Artemisia Annua (I take Zhang's) and I think Donna's taking noni for it.


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dlp252 Apprentice
BTW, this Questran my doc has me taking has worked wonders for my GI problems. Google Questran and toxins-- it's interesting.

Rachel, this too is on page 1087...

I must go search for this. :P

Ok by the way you guys are all gonna think i am a freak but even though I can't take it right now When i did I really did not mind the taste of chlorella- I kind of liked it. I know I am a weirdo

Okay, well, yes, that is slightly weird, but I say that in full love. :lol:

You can do it! Practice in the Church where you will be singing. There's a certain comfort in singing (for me playing) in a place with familiar surroundings. If you practice there frequently, it will be "normal" for you to sing there, so you will be comfortable.

Maybe they could let you have a couple mini-solos prior to the big solo so that it's not the first time you've sang alone ... just a line or two.

Then, just remember to BREATHE!

When I first started playing at Church ... I took a homeopathic remedy for stage fright. It worked great. It comes in one of those blue and white tubes.

Me, too.

I may need that homeopathic remedy :lol: Actually, I will be singing at my own church. I am going to ask the choir director if he can come listen and maybe ask a few of the people from choir...I told the girls last night that the more people I can sing in front of before then the better. :P They're brainstorming ways to help me, but they're not letting me out of it. :lol:

And, to add to the ensemble, be sure you duct tape where the pants are tucked into the socks, and be sure ALL your hair is in a tightfitting hat.

:lol: Lovely!

The sweats were part of my decline. They started when my symptoms started to worsen from stress and another illness. I don't want to scare you, yet at the same time I want you to take them seriously. In your case, could they be menopausal symptoms? Do you have any cycle irregularity that may be signaling a change?

If not, you might want to look into Artemisia Annua (I take Zhang's) and I think Donna's taking noni for it.

I haven't had the night sweats in a while, and they've come back in the last week. I thought it was because it's been warmer, but it's not THAT warm. Last night I didn't sleep well cuz I'd have to throw the covers off, then I'd get cold, then have to throw the covers off.

rinne Apprentice

Part 1. :o:lol:

Rachel, I am not having any problems with the board either, in the mean time we can always go back for you. :)

...I think the combo of the estrogen and the diflucan is hard for my body but I think if I am going to take the estrogen I need to take the diflucan because of the candida. Its very frustrating. But I want to give the estrogen a chance to help me if it can.

Ok by the way you guys are all gonna think i am a freak but even though I can't take it right now When i did I really did not mind the taste of chlorella- I kind of liked it. I know I am a weirdo

Miamia, I hope it will help.

Not a solo weirdo :P I like the taste too. :lol:

A flare is when the Lyme symptoms worsen. A herx is a reaction from the die off of the bacteria.

Sometimes you can't tell them apart, but technically there's a difference. I refer to a flare if it's not a normal time for a herx ... my herxes are 24 days apart ...

That's my understanding too. I also thought that flares associated with Lyme could happen over time in different parts of the body and that that is part of what can make diagnosis so difficult. In my own case I think of the first flare being the intense hip pain I went through for about seven months nearly 4 years ago. The last major flare I had was last winter before I went on the salt/C. That was also before I changed my diet drastically and cut gluten and dairy from it.

It is amazing to me that over a year has gone by without my volunteering to consume gluten and I do not miss it, you could put pizza, bread or cake in front of me, give me a choice between it and chewing on nails and I would choose nails. :P

I recommend the gluten free diet to anyone with health issues regardless of whether or not I think they may have Celiac or Lyme :ph34r::lol: because I really do think that most of the population has become sensitized to gluten as a result of overconsumption.

rinne Apprentice

You did know part 2 was coming. :P:ph34r:

Rinne, I think you're right. I lived for years and years with this and had only minor symptoms. After having my amalgams out, I had minimal symptoms for over 10 years. It was definately something that my immune system was handling on its own.

The sweats were part of my decline. They started when my symptoms started to worsen from stress and another illness. I don't want to scare you, yet at the same time I want you to take them seriously. In your case, could they be menopausal symptoms? Do you have any cycle irregularity that may be signaling a change?

If not, you might want to look into Artemisia Annua (I take Zhang's) and I think Donna's taking noni for it.

Thanks Carla, I appreciate your opinion and your concern. :)

I am wondering about menopause too as I am definitely menopausal. I haven't had a period in months now, :unsure: I can't remember. :lol: I was also having night sweats last spring though and the salt/c really changed a lot for me. The other thing is the Rinne bars :ph34r: I know I am eating too many of them and I know the sugar is feeding the candida and I wonder if the candida could be connected to the night sweats. ;)

I tend to think it is F Babs, :angry::lol: and that I need to look at taking Noni or the Artimisa Annua, I don't think I can get the Artimisia in Canada though.

I'm kind of thinking of myself like my dog, she is a Border Collie/Blue Heeler cross and she will herd anything that moves. :lol: When we had our farm we bought her sheep to herd and was that ever funny, we'd look out the window and all three of them would be eating grass together. :lol: Every once in a while when she was just too bossy to bear, the mother sheep would give her a good head butt. :lol: I feel like I am herding my "illnesses", bringing them in closer where I have more control over them.

I've come to a place where I know that the rest of my life will require me to pay attention to this, that when I was younger I did bounce back but I am not younger anymore. :(:lol: I do think Lyme has been with me for a long time but I don't think it is Lyme that is really messing with me now.

The night sweats seem to be the worst of it though I have been getting some of the burning/tingling sensations, I am not exhausted in the daytime, my digestion is improving still, I have less pain and some air hunger but not so bad ;) the more I think about it the more Noni seems to be the way to go.

I think it wonderful that we are different and taking different paths to wellness and supporting to each other. I am really glad for those of you who have insurance plans that cover your treatment or can simply afford treatment but I also want people to know that there are simple things they can do if they think they are dealing with Lyme and don't have insurance.

I know we want answers but sometimes answers can just be other problems, I think there is a real risk in diagnosis, in self-diagnosis and in every other kind of diagnosis. Suddenly I am hearing all these diagnosis of ALS in women in their forties, a good friend of mine has two dear friends of hers diagnosed with this. I am hearing of others too. It is like the new MS, the part of the country I am from is considered a hotspot for MS and has been since I was a child. MS, as some know, is a common misdiagnosis for Lyme. :rolleyes:

What is health? What is illness? How is it that we move from one to the other? Could it be that it is not so much that our health fails and we become ill but that our bodies are overwhelmed with toxins and start to fail because we have asked too much of them? Could the first step to wellness be letting go of those things which poison us? Not just food poisons, but mental poisons like bitterness.

I feel that here in Rachelville, our "bitter-free zone" we experience happiness in the midst of our misery and that supports our healing. :wub:

CarlaB Enthusiast

Donna, the stage fright cure is in those blue and white tubes by Boiron. It's called Gelsemium Sempervirens. It works. I start taking it the day before. I was taking it during a convention that I was leading with another person ... he wanted to know why I was so calm! :lol: I showed him what I was taking. We both had to give talks ... I can't believe I did it ... it was when I was at my lowest weight (which I'm at again), and was feeling bad ... I think I still had energy though, I must have.

I had started the gluten-free diet. Food was part of the convention, so they brought mine up separately ... mine was prepared in the restaurant. This guy had all kinds of health issues, so we talked about them. Ends up his dad is a celiac. Now he eats gluten-free and never went through the testing.

One night the head of a religious order in this country was dining with about 12 of us. They brought everyone a dessert, and mine was always different, but similar. This particular night they brought me a PLATTER of fruit! :o It looked like it was for the whole table until they set it in front of me! :lol: The priest looked over, I just said, "I'm allergic to wheat." Then the conversation continued. I shared. ;)

Rinne, I agree with you on gluten. I think it's difficult to digest, and as Rachel's scientificness has shown us, it's loaded with toxins -- mold, pesticides, etc. I think everyone should avoid it, but some don't need to avoid it entirely. I certainly don't think our diet should be as dependent on it as it is.

jerseyangel Proficient

Hi Rinne,

I agree with you! If given the choice between gluten and nails, I'd take the nails, too :lol:

Hi Donna,

I keep forgetting to mention this--I'm so excited for you that you'll be singing a solo! Wow--I don't blame you for being nervous, but I have a feeling that you'll be just fine. :)

I wish I could hear you sing--I'll bet you have a lovely voice.

Are you home again today? With this being a long weekend, at least you have Monday to get some extra rest.

OK--as I was going about my mundane daily chores, I thought of a name for Andrea and me-------Lyme-ettes! I know, I really need to get a life :ph34r::lol:

Whaddya think, Andrea?

CarlaB Enthusiast

Rinne, my LLMD asked me about menopausal symptoms and cycle irregularity. It was a a condition that he wanted to rule out before assuming my sweats were from babs. Yours, even the ones last summer could be from menopausal symptoms.

You can buy artemisia online. Actually, we can't find the annua variety here either ... not in the stores. I use zhang's, which also has astragalus. Usually art is not used alone, so I'd use it with the noni. See if you herx ... if you don't, then I'd assume it was a hormonal symptom.

Donna, the Questran is by prescription. Apparently it's a common one for those with Lyme. I need to read more about it.

Oh, and Rinne, at least nails have iron!!

diamondheart Newbie
I don't care WHAT diagnosis or disease I might have, nothing would ever, ever keep me out of the wilderness......ever.

Ditto. You can't keep me out of the woods. It's part of my job anyways. When West Nile Virus came through here, they were saying use DEET :o and stay away from standing water. Well, I work by rivers and wetlands, so it was pretty much impossible for me to do that. I did end up testing positive for WNV. I never even knew I had it until I got mono and they were testing me for everything to find out what I had. I think the WNV screwed up my immune system, and then I started getting sick all that next winter.

silly, it's only Colorado to California, is that halfway? :P Not that far....

Oh, somehow I though you were in Massechuttes (sp?)? Hope your poochie is ok!

Claire

CarlaB Enthusiast

Rinne, I just finished the rest of your post ... with the air hunger, I'd assume it's the babs. You might look into Buhner's book Healing Lyme. My LLMD's assistant just recommended it to me to show Morgan, who doesn't want to be tested.

It is good that all of us are going through different treatments and that all of us are healing. I think no matter what treatment we go through we will deal with working on staying healthy our whole lives.

I am in a fortunate position that we are in a place where we can afford treatment. I KNOW this is a huge blessing. There was a time where I wouldn't have been able to afford the diet, much less herbs or doctors, especially ones that required travel.

Mtndog Collaborator
What are pipcs?

I like the idea of a kiosk and I would add poetry and other books to your wares unless there is another bookstore too close.

Rinne- I CAN"T believe you don't know what pipcs are :huh: You've NEVER heard of them? Where have you been living? :lol: :lol: :lol: :lol: It was my Lymey brain trying to spell pics (photos) but yesterday was so bad, I put the iced tea in the pantry instead of the fridge and didn't find it for over an hour!! Oy!

Mtndog Collaborator
If you are interested, I can post my simple castor oil treatment. It's easier than messing with the flannel soaked in castor oil. Yes, you can do it yourself. That's the beauty of it.

Claire

Yes yes yes-please! Thank you for posting the info on Mayan abdominal massage too. I had heard of it before for fertility. It sounds very cool. Thanks Claire!

dlp252 Apprentice
Donna, the stage fright cure is in those blue and white tubes by Boiron. It's called Gelsemium Sempervirens. It works. I start taking it the day before. I was taking it during a convention that I was leading with another person ... he wanted to know why I was so calm! :lol: I showed him what I was taking. We both had to give talks ... I can't believe I did it ... it was when I was at my lowest weight (which I'm at again), and was feeling bad ... I think I still had energy though, I must have.

Thanks for the info...can't hurt to look for it. :P

I wish I could hear you sing--I'll bet you have a lovely voice.

Are you home again today? With this being a long weekend, at least you have Monday to get some extra rest.

Lyme-ettes! :P Nope, not a lovely voice, LOL. :lol: Don't really know how I came to sing in the choir and a smaller group, but definitely not a lovely voice. :P

Nope, I'm at work. The other lady took a day off today and so I decided yesterday that I would come in unless I felt really bad. So far so good. I didn't take the Vit C crystals this morning...guess that's not a truly good test cuz I got pretty cleaned out yesterday, but I decided to see if it made a difference. I'll take my usual dose later when I get home.

Rinne, my LLMD asked me about menopausal symptoms and cycle irregularity. It was a a condition that he wanted to rule out before assuming my sweats were from babs. Yours, even the ones last summer could be from menopausal symptoms.

At least I can rule out menopause...I've been tested twice now for it and seems it's not happening yet, so my sweats are something else.

jerseyangel Proficient
Rinne- I CAN"T believe you don't know what pipcs are :huh: You've NEVER heard of them? Where have you been living? :lol: :lol: :lol: :lol: It was my Lymey brain trying to spell pics (photos) but yesterday was so bad, I put the iced tea in the pantry instead of the fridge and didn't find it for over an hour!! Oy!

I hate to say it, but I knew exactly what you were talking about :lol:

Thanks for the info...can't hurt to look for it. :P

Lyme-ettes! :P Nope, not a lovely voice, LOL. :lol: Don't really know how I came to sing in the choir and a smaller group, but definitely not a lovely voice. :P

Nope, I'm at work.

Hope they day goes by fast for you!

Don't sell yourself short ;) Hey-- The Lyme-ettes could sing back up for you on our off time :D

CarlaB Enthusiast

I Googled Questran and Lyme ... came across this article. It's written by a DMV with Lyme Disease. So far, it's a great article. Open Original Shared Link I've only gotten as far as I've quoted.

There is a tremendous misunderstanding regarding the vector (carrier) that transmits Lyme disease.

First of all, the familiar tick vector called the deer tick (Ixodes dammini) and black-legged ticks (commonly called deer ticks) (Ixodes scapularis) are more prevalent and spreading wider than reported.

Secondly, these ticks are not the only vector able to transmit Borrelia species. Several other tick species such as the Lone Star ticks (Ammblyoma americanum), western black-legged ticks (Ixodes pacificus), and wood ticks or dog ticks (Dermacentor variabilis) can transmit it too.

Unfortunately, this critical information is not being reported by health officials to the public and medical community. The widespread distribution of these tick vectors greatly increases the prevalence of Lyme disease well beyond that of official reports. The public needs to understand the potential danger of all tick bites, not only that from the deer tick.

dlp252 Apprentice
Hey-- The Lyme-ettes could sing back up for you on our off time :D

Now THAT I'd like! :)

I Googled Questran and Lyme ... came across this article. It's written by a DMV with Lyme Disease. So far, it's a great article. Open Original Shared Link I've only gotten as far as I've quoted.

Wow, interesting article...didn't read the entire thing, but much of the first part and it's very nicely written.

rinne Apprentice
I may need that homeopathic remedy :lol: Actually, I will be singing at my own church. I am going to ask the choir director if he can come listen and maybe ask a few of the people from choir...I told the girls last night that the more people I can sing in front of before then the better. :P They're brainstorming ways to help me, but they're not letting me out of it. :lol:

:lol: Lovely!

I haven't had the night sweats in a while, and they've come back in the last week. I thought it was because it's been warmer, but it's not THAT warm. Last night I didn't sleep well cuz I'd have to throw the covers off, then I'd get cold, then have to throw the covers off.

How wonderful, I think you must have a lovely voice. I've been meaning to congratulate you about it but I tend to dingo all things connected to singing. :ph34r: I was the kid who they wouldn't even let lip sync in the choir. :ph34r: It seems they knew back then I had a hard time keeping silent. :lol:

Rinne, my LLMD asked me about menopausal symptoms and cycle irregularity. It was a a condition that he wanted to rule out before assuming my sweats were from babs. Yours, even the ones last summer could be from menopausal symptoms.

You can buy artemisia online. Actually, we can't find the annua variety here either ... not in the stores. I use zhang's, which also has astragalus. Usually art is not used alone, so I'd use it with the noni. See if you herx ... if you don't, then I'd assume it was a hormonal symptom.

.....

Oh, and Rinne, at least nails have iron!!

Excellent suggestion, thanks.

:lol:

Rinne, I just finished the rest of your post ... with the air hunger, I'd assume it's the babs. You might look into Buhner's book Healing Lyme. My LLMD's assistant just recommended it to me to show Morgan, who doesn't want to be tested.

It is good that all of us are going through different treatments and that all of us are healing. I think no matter what treatment we go through we will deal with working on staying healthy our whole lives.

I am in a fortunate position that we are in a place where we can afford treatment. I KNOW this is a huge blessing. There was a time where I wouldn't have been able to afford the diet, much less herbs or doctors, especially ones that required travel.

It is funny how we go in circles on this board, I think it is great that information is repeated, I suggested Buhner's book last fall. :P:lol:

Rinne- I CAN"T believe you don't know what pipcs are :huh: You've NEVER heard of them? Where have you been living? :lol: :lol: :lol: :lol: It was my Lymey brain trying to spell pics (photos) but yesterday was so bad, I put the iced tea in the pantry instead of the fridge and didn't find it for over an hour!! Oy!

ROTFLMAO

I hate to say it, but I knew exactly what you were talking about :lol:

Hope they day goes by fast for you!

Don't sell yourself short ;) Hey-- The Lyme-ettes could sing back up for you on our off time :D

Okay, now I can't get off the floor. :lol:

I think the Lymettes need a theme song. ;)

AndreaB Contributor
Ok by the way you guys are all gonna think i am a freak but even though I can't take it right now When i did I really did not mind the taste of chlorella- I kind of liked it. I know I am a weirdo

Nah, not a weirdo. I like it with apple juice. :P

I'm thinking I should stop taking it though because Seth has two little pinpoints of eczema on his face again (eyebrow area). His big eczema rash befor going gluten free was his forehead and sides of his face.

I'm taking so little I can't imagine it would be doing much (only 1/16-1/8 tsp a day).

Now I'm wondering if I should wait another year to get my teeth done. I can't afford testing for him along with my teeth, but maybe I should try to split my teeth into 2 years. Get the worse done now and finish up next year. I know I want to get the root canal pulled this year.

Any opinions anyone.

Rachel, Donna. Would it be beneficial to have Seth tested by ART or Bioset (with computer)? I'd hate to go through with my teeth if per chance he already has problems with pathways etc. He may be able to handle what he's getting through breastmilk but not be able to handle a large hit with amalgam removal. I was hoping to bone up on chlorella and then also use some charcoal at removal time to help with the uptake of mercury. He doesn't do well with salmon either and I think it's the low level of mercury in that as well.

btw-the hth conference is down the street from me---and I'll be out of town! :(

:huh: What's hth?

I've also read that they do ... who knows. All the ticks I ever saw on me were dog ticks.

You just don't hear much about anything aside from deer ticks.

I was bit by a rat when I was little so that's why I questioned the rodents. I know ticks feed off of them before they move to bigger hosts......at least that's what I read last night.

They're brainstorming ways to help me, but they're not letting me out of it. :lol:

I haven't had the night sweats in a while, and they've come back in the last week. I thought it was because it's been warmer, but it's not THAT warm. Last night I didn't sleep well cuz I'd have to throw the covers off, then I'd get cold, then have to throw the covers off.

The other girls..... :lol:

Sweats, Sounds like things may be getting stirred up?

I recommend the gluten free diet to anyone with health issues regardless of whether or not I think they may have Celiac or Lyme :ph34r::lol: because I really do think that most of the population has become sensitized to gluten as a result of overconsumption.

I also believe alot of people have become sensitized to it due to overconsumption.......raises hand. ;)

I'm kind of thinking of myself like my dog, she is a Border Collie/Blue Heeler cross and she will herd anything that moves. :lol:

I wouldn' t mind seeing a picture. :D

OK--as I was going about my mundane daily chores, I thought of a name for Andrea and me-------Lyme-ettes! I know, I really need to get a life :ph34r::lol:

Whaddya think, Andrea?

:lol::lol: I can go with that. :P

Oh, somehow I though you were in Massechuttes (sp?)? Hope your poochie is ok!

Bev with the black poochie is over Massechusettes way.

CarlaB Enthusiast

Andrea, I vote for the amalgam removal when you are finished breastfeeding.

Kids are very resilient, and except for T's current issues, it seems they're doing pretty well.

After having my health deteriorate as I got older, and Rinne has said the same thing, I would be more concerned about you getting your issues treated first.

Also, ART seems to be more ongoing, whereas amalgam removal is done when it's done.

AndreaB Contributor
There was a time where I wouldn't have been able to afford the diet, much less herbs or doctors, especially ones that required travel.

We are still there. We are doing the diet, but can't afford anything more....at least not much.

We have state insurance for low income families but you have to see there people which I don't want to do anymore. We are just keeping it for the 3 boys we are still carrying on insurance and for any emergencies (kinda like car insurance).

It was my Lymey brain trying to spell pics (photos) but yesterday was so bad, I put the iced tea in the pantry instead of the fridge and didn't find it for over an hour!! Oy!

Don't you hate that! :ph34r::lol:

At least I can rule out menopause...I've been tested twice now for it and seems it's not happening yet, so my sweats are something else.

I didn't think you went through menopause after a hysterectomy. Not that I know anything, that was just my assumption. :ph34r:

Hey-- The Lyme-ettes could sing back up for you on our off time :D

Hee hee......Donna you must have a pretty voice or they wouldn't ask you to sing a solo.

I Googled Questran and Lyme ... came across this article. It's written by a DMV with Lyme Disease. So far, it's a great article. Open Original Shared Link I've only gotten as far as I've quoted.

I will have to look at this later. Just scurrying to catch up and I really need to head out grocery shopping now.

We could have been bit by a dog tick, who knows. I know our old neighbors we visited didn't flea their dog and one time when we came home we had fleas jumping all over us. This would have been when Talitha was little. Still don't know what caused that attack I had where I couldn't move when Talitha was little. Deer tick was also possible from when I was young.

Again though, we aren't real sick and I still think mercury is behind things with us. Only time will tell.

It seems they knew back then I had a hard time keeping silent. :lol:

:lol::lol:

I think the Lymettes need a theme song. ;)

The theme song of Rachelville is from the West Side Story. Don't think I know the tune but that must be the lymettes theme song.

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    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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