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Omg...i Might Be On To Something

Rachel--24

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dlp252 Apprentice
dlp252
Posted
Donna...remember when you said you were geting a massage and suddenly felt like crying?? I was thinking it was because toxins were being mobilized and your reaction was due to that.....a detox reaction.

Yeah, I didn't think of that, but maybe! Makes sense.

Didnt you say you've been taking the Transfer Factor 3 nights now?? For me the crawling thing seems to be caused by yeast/mold. I'm having it alot today for some reason.

Now I'm even more scared of the TF..cuz of the brewers yeast.

Yep, I've been taking it for 3 nights now, but I've had the crawling thing before, and even when I was on strict anti-candida diet, although, not often. Hum, I'll have to think on this some more.

OMG....my boss probably knows almost every detail of yeast, mercury, Lyme, etc. If I'm even the tinitest bit not happy or if I'm tired everyones asking me "Did you take too many drops??" "What did you eat??"

So yeah...I guess I talk about it at work.

I dont talk to everyone though cuz there are people that I just dont speak to very often. Those are the people that offer me food in the breakroom and everyone turns and looks at them like "What the heck are you thinking??"

Don't get me wrong...I'll usually tell ANYONE ANYTHING, lol. Even complete strangers will hear my life story if they ask. :lol: It's just that this one likes to gossip and I can just imagine that my whole story would be all over the office. :P A lady who works in the office here just heard my life story. :lol:

Nope. It's De Nile, otherwise known as denial.

:lol:

Oh...and I'm not happy that I can pick any movie EXCEPT "Disturbia".....which is the movie I MOST wanna see.

Disturbia looks disturbing. :lol: It looks too scarey for me. :P

Donna, you are sounding better. I think it's more than just the fact that it's Friday ... maybe you're feeling better? Or have you been flirting again?

No flirting, so it must be that I'm feeling better. :lol::P I think the NT Factor is working and something else must also be working...I've been sitting in the sun for at least 10-15 minutes each day and I've been sleeping better. Connection? I don't know and I don't care, lol. I definitely feel better. I've actually even been able to up my intensity slightly when on the treadmill.

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AndreaB Contributor
AndreaB
Posted
I think the NT Factor is working and something else must also be working...I've been sitting in the sun for at least 10-15 minutes each day and I've been sleeping better. Connection? I don't know and I don't care, lol. I definitely feel better. I've actually even been able to up my intensity slightly when on the treadmill.

WooHoo!!! The sun does wonders. :)

AndreaB Contributor
AndreaB
Posted
Rinne had already mentioned some things about Lyme shortly before I got tested...I remember her and Robbin talking about it.....I think they were talking about Salt/C??

I still wish Robbin would try to get the funds together for Igenex testing. :(

Does anyone else think lyme could be behind her illnesses?

NoGluGirl Contributor
NoGluGirl
Posted

Dear Rinne,

"The Rachelville Chronicles" it is! :) My Dad came up with another cool word for us. We can also call ourselves Rachelites! ;) It is so funny, because I was talking about we are going to have yurts, and he had no idea what I was talking about! :lol: You should have seen his face! Anytime you say the word yurt, no one has a clue! :lol:

Dear Carla,

Believe it or not, the GI doc I had at IU was a woman! :o She was evil! Everyone hated her. When the techs doing my test asked who my doc was, and I told them, they made this face. She was one of those who really defined the B-word! She was even rude to my parents. It is also apparent she did not know as much about Celiac as she thought she did. I have had my fill of these supposed experts. :angry: Most of them have major God complexes. No matter what, even if they are killing you, they are right.

I am glad you have such a good attitude about the herx. Attitude really is everything. I get into depressed states a lot off and on. Some days I do really well, but if it rains a lot for a long time I get depressed. My mother and grandfather are like that, too. I also feel worse on those days (like today) because of the high mold content.)

I have another question about Lyme. Does it cause hyper reflexes? Last year, when I went to the doctor, she said my reflexes were hyper. When she tapped my foot, it was only supposed to bounce once, not twice. I know that Lyme has neurological effects on you. Could that be what is causing this? Now, I even jerk when the dog licks my toe! :blink:

Dear Laura,

I hope that your flare is over soon.

Sincerely,

NoGluGirl

happygirl Collaborator
happygirl
Posted

I hate life today. Came home from work early. i hate this :(

bev....let us know when you are home. xxoo

Mtndog Collaborator
Mtndog
Posted

Hi Everyone- I KNOW I posted when I got home this morning- it started with HIGH there (pun intended) butit seems to have mysteriously disappeared :(

I'm home...wow those drugs are relaxing! Hope they don't wear off for like 2 months! Prelim results do NOT look like refractory sprue :) Have to wait for the biopsies. She also biopsied me for H Pylori and sent a biopsy to Igenix for Lyme testing. I do have a hiatal hernia and something called Schatzki's rings (she mentioned doing a dilation to stretch my esophagus).

I have to go back for the small intestine X ray for Crohn's but I don't think it's Crohn's.

Yay! No refractory.

Thank you ALL for thinking of me!!!!!!!!!!!!!!!!!!!! Patti- Hope your appt went well. Laura- Hope your flare subsides fast. I'm sure I'm forgetting a million people but you know I love you all!

rinne Apprentice
rinne
Posted
Rinne, yes I have to deal with Candida. I seem to be strong enough now though that it doesn't cause such systemic issues. I still take one antifungal though. No yogurt now as I have to be off milk.

Also I know how frustrating doctors can be. I saw a rheumie right around the time I found out I had lyme. He showed me some information that the test I had was not reliable and that I didn't have lyme, that he was an expert who taught about it at the med school. (scary thought). The only thing that made him wonder was I had started having herxes (between 2 appointments with him, I saw the doc that diagnosed and treated me). I left there very angry and frustrated, because he basically said he didn't know what I had (multiple joint arthritis was the dx) and said he had nothing further to offer me. What he had offered didn't work of course.

But I have had two wonderful docs, my allergist and the MD who treats me for lyme. The allergist once said to me, "anything that helps one person is worth taking a look at." Now that is the kind of doctor I can trust!! Yet both of these men are really up on the science end of things.

Yes my doctor agrees about not totally eradicating lyme; he said it is a matter of getting it to the point where our body can take over fighting it. Mine could come back, though I hope it won't!

So yes, like you said Carla, there are many pieces to address and many different symptoms. Also there seem to be different strains of Bb and the others. I figure I have the Asian strain so treatment may be a bit different. Who knows though? With the world becoming smaller the bugs all intermingle anyway!

Hi Sherry, I am thinking I may have to take some kind of antifungal too. I'm glad you have some good doctors now, the bad ones make me crazy.

As to the bugs intermingling, yes they do and each time they do they create a variation.

Okay, back to your regularly scheduled programming.

:lol:

Yay on getting almost through another herx. :D

Yep, it was after the crazyness. If I remember correctly Rinne was the first one to head for a lyme diagnosis, but Rachel was right behind her. I want to say September. Was that when you went to the clinic Rinne?

I started the salt/c sometime in August I think, I have a record book somewhere but that would mean remembering where I put it. :ph34r: It was a friend who had emailed me the information about salt and when I looked at the symptoms for Lyme saw myself and everyone else I refer to as the "Lyme Clan". :P Rachel was tested first, my tests were in the middle of October.

She may be interested in some alternative stuff, but I'm not sure she would believe it unless her mainstream doctor said it was okay. She did ask me about the HN doctors though, so that was encouraging.

I'm sure you'll feel it out as you go along. I think that people tend to minimize our illness if we are seeing alternative health care providers, perhaps it is still the attitude that if it were REALLY serious we'd see real doctors.

Dialysis......I don't like that word very well anymore.......but it's better than not having it at all. :(

:( Hugs.

:unsure: Do I have a friend in Egypt?? :unsure:

ROTFLMAO

Yeah...Carla was in Lyme denial back then. :lol:

and she's the one who said she had tons of ticks on her all the time!! :blink:

They were "Lyme-free" ticks though. :P:lol:

Still on the floor.

:lol::lol:

Nope. It's De Nile, otherwise known as denial. :P:lol:

Okay, I really must get ready and go out. :)

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dlp252 Apprentice
dlp252
Posted

I see Bev, and it looks like she's posting! :)

Does anyone else think lyme could be behind her illnesses?

Yeah, I wouldn't be surprised.

I have another question about Lyme. Does it cause hyper reflexes? Last year, when I went to the doctor, she said my reflexes were hyper. When she tapped my foot, it was only supposed to bounce once, not twice. I know that Lyme has neurological effects on you. Could that be what is causing this? Now, I even jerk when the dog licks my toe!

Hum, I do't remember reading that specifically, but I wouldn't be surprised.

I hate life today. Came home from work early. i hate this

Aw Laura...it's been a long time since I've seen you like this! Hoping it passes quickly.

CarlaB Enthusiast
CarlaB
Posted

Jin, if you are sensitive to the wet weather, you may have candida. That's a symptom.

I don't have hyper-reflexes ...

Laura, this sounds like a herx. I was in the "everybody hates me and I hate everything" mode yesterday. I will say that I'd rather be dead than deal with this ... not suicidal at all, but just thinking that the after-life without this Lyme infested body will be better ... so then Adam says, "Oh no, she's on her death wish again!"

I hope tomorrow's a better day for you. :)

dlp252 Apprentice
dlp252
Posted
I'm home...wow those drugs are relaxing! Hope they don't wear off for like 2 months! Prelim results do NOT look like refractory sprue :) Have to wait for the biopsies. She also biopsied me for H Pylori and sent a biopsy to Igenix for Lyme testing. I do have a hiatal hernia and something called Schatzki's rings (she mentioned doing a dilation to stretch my esophagus).

I have to go back for the small intestine X ray for Crohn's but I don't think it's Crohn's.

Yay! No refractory.

Thank you ALL for thinking of me!!!!!!!!!!!!!!!!!!!! Patti- Hope your appt went well. Laura- Hope your flare subsides fast. I'm sure I'm forgetting a million people but you know I love you all!

Yeah, them was some might fine drugs, lol. :lol: Mine wore off a few hours later, but it was good while it lasted... :P I think I slept really well after all three of my endoscopies last year. :lol:

Yay, the preliminary news sounds great!

CarlaB Enthusiast
CarlaB
Posted
Yeah...Carla was in Lyme denial back then. :lol::lol:

and she's the one who said she had tons of ticks on her all the time!! :blink:

They were "Lyme-free" ticks though. :P:lol:

It's my understanding that when we get bitten by a tick after we are infected, WE infect the tick! So, now they are not only a danger to me, but I'm dangerous to them! :P

CarlaB Enthusiast
CarlaB
Posted
Yay, the preliminary news sounds great!

Ditto.

Glad you enjoyed your endoscopy day so much! :lol:

AndreaB Contributor
AndreaB
Posted
I hate life today. Came home from work early. i hate this :(

I'm sorry Laura. :( Hope this weekend gets better for you.

Hi Everyone- I KNOW I posted when I got home this morning- it started with HIGH there (pun intended) butit seems to have mysteriously disappeared :(

You posted over at D/S......maybe you forgot us over here. :P Course posts have been known to disappear or not go through. That's happened to me but it was still on the reply screen.

Can't wait to hear your results and I'm thrilled (but not surprised) that you don't have refractory sprue.

I think that people tend to minimize our illness if we are seeing alternative health care providers, perhaps it is still the attitude that if it were REALLY serious we'd see real doctors.

That's one reason why I don't talk to my mom too terribly much. My current doctor is an MD though and also holistic so she can't argue with him. :P

AndreaB Contributor
AndreaB
Posted

I saw Patti when I went to post last time. Waiting to hear how your appointment went today....... :D

jerseyangel Proficient
jerseyangel
Posted

Hi Bev--good news about the refractory! Looks like you finally got some answers, and more to come :D I know what you mean about the endo drugs. I woke up feeling like I had a nice, long nap :P

Laura :( I'm sorry your day was so bad. You know I just hate this for you. Sending you a little hug :)

Rachel, I can't believe you're eating yams again :lol:

Hi everyone--just got through all of the posts--whew! :o

Had my appt with the new GI today--I liked him. Bottom line, "classic sprue". He agreed with the elimination diet I did--says he does that with many patients. Additional intolerances--could be SIBO--I'm having the hydrogen breath test in a couple of weeks. He did say that it would be more likely if I reacted to almost everything--as it is, he says I'm not intolerant to a great many things :blink:

He also sent me for antibody testing--even though I've been gluten-free for 2 years, he wants to check them. I went and had the blood drawn on my way home--just to get it done. BTW--it was probably the most painful blood draw I've ever had! She put the needle in and rotated it!!! :o:angry: It took SO long--I'm thinking "what the heck is she doing???" :lol:

I also have to have an upper GI to get a baseline and check for malignancies :( . He was surprised my former Dr never ordered it.

He spent about 30 minutes with me--and he didn't think I was crazy at all regarding the food intolerance (like my former GI did). He also obviously knew far more about Celiac than any other doctor that I've seen. Which actually isn't saying all that much ;)

AndreaB Contributor
AndreaB
Posted
Had my appt with the new GI today--I liked him.

I'm glad you like the new doc and glad that he's ordering more tests. It's good to go through them just to rule things in or out.

I didn't think intolerances were part of celiac (aside from initially during the healing time). :blink::unsure:

NoGluGirl Contributor
NoGluGirl
Posted

Dear Rinne,

I did not design the Web site myself. That was done by the company that defrauded me. They were supposed to advertise and promote my site as well as keep it updated. It is obvious they have not done so. Since the middle of December, they have had the same things on there. We have gotten a lot of new items in. Digiworld Technologies lied about being affiliated with my supplier. It turns out, my supplier had sued them about a year and a half ago.

Dear Bev,

I am so glad the procedure went well! Thank goodness refractory sprue does not seem to be the trouble! What a relief! That hiatal hernia probably is painful. They can cause a lot of trouble.

Dear Patti,

It is great you like your new GI doc. Every single one I saw pretty much assumed I was crazy.

That is so annoying! Most of them could not have known much if anything at all about Celiac. At least we know one out there is aware of it!

Dear Carla,

I am certain I have Candida. There is no way I do not have it! I always was sensitive to mold, but not to this point. Also, I have had a typical yeast infection driving me crazy for a long time. It has probably been about a year and a half. No matter what, it just comes back. I have not been eating yeast or mushrooms, and cut down on my sugar. I tried going low-carb, but could not tolerate it. I was shaking and my blood sugar got low. I have been on the trifecta from Hell for Candida. I was on antibiotics at least twice a year for upper respiratory and broncchitis from the time I was infant until the time I was 17. Then, I was on steroids for asthma from the time I was 10 until I was 17. Birth control was added to help get rid of the ovarian cysts (five in less than a year). After that, I did the Helidac therapy for four times as long as most people do. That is when things got so bad. It really began to screw things up.

Sincerely,

NoGluGirl

jerseyangel Proficient
jerseyangel
Posted

Andrea,

It's not that the intolerances are a part of the Celiac--it's just not that unusual evidently for us to have them.

We're still going to look for a cause--he said that I could have something going on in addition to Celiac. :)

happygirl Collaborator
happygirl
Posted
Hi Bev--good news about the refractory! Looks like you finally got some answers, and more to come :D I know what you mean about the endo drugs. I woke up feeling like I had a nice, long nap :P

Laura :( I'm sorry your day was so bad. You know I just hate this for you. Sending you a little hug :)

Rachel, I can't believe you're eating yams again :lol:

Hi everyone--just got through all of the posts--whew! :o

Had my appt with the new GI today--I liked him. Bottom line, "classic sprue". He agreed with the elimination diet I did--says he does that with many patients. Additional intolerances--could be SIBO--I'm having the hydrogen breath test in a couple of weeks. He did say that it would be more likely if I reacted to almost everything--as it is, he says I'm not intolerant to a great many things :blink:

He also sent me for antibody testing--even though I've been gluten-free for 2 years, he wants to check them. I went and had the blood drawn on my way home--just to get it done. BTW--it was probably the most painful blood draw I've ever had! She put the needle in and rotated it!!! :o:angry: It took SO long--I'm thinking "what the heck is she doing???" :lol:

I also have to have an upper GI to get a baseline and check for malignancies :( . He was surprised my former Dr never ordered it.

He spent about 30 minutes with me--and he didn't think I was crazy at all regarding the food intolerance (like my former GI did). He also obviously knew far more about Celiac than any other doctor that I've seen. Which actually isn't saying all that much ;)

Patti: Quick post. But, I am so happy that you had a good app't today...that he took you seriously. Isn't all that we ask for?! And, even though I was frustrated with some of my testing, I think its good that you are having the blood drawn, etc....because even IF this isn't it (which, we all know its not "celiac" that is causing your other problems at this point, since you are gluten-free), then you have proof that its not that. Sometimes, that is equally important. Rule it out and move on. I posted the same thing for Bev, about the endo and checking for malignancies. I think its good! (I like to tell people...well, here's what I DONT have....!!!) Hugs to you, and happy you are at least making some headway. xoxo

AndreaB Contributor
AndreaB
Posted
We're still going to look for a cause--he said that I could have something going on in addition to Celiac. :)

Ok, good. Sounds like you will be starting to get some answers. :)

dlp252 Apprentice
dlp252
Posted
Had my appt with the new GI today--I liked him. Bottom line, "classic sprue". He agreed with the elimination diet I did--says he does that with many patients. Additional intolerances--could be SIBO--I'm having the hydrogen breath test in a couple of weeks. He did say that it would be more likely if I reacted to almost everything--as it is, he says I'm not intolerant to a great many things

He also sent me for antibody testing--even though I've been gluten-free for 2 years, he wants to check them. I went and had the blood drawn on my way home--just to get it done. BTW--it was probably the most painful blood draw I've ever had! She put the needle in and rotated it!!! It took SO long--I'm thinking "what the heck is she doing???"

I also have to have an upper GI to get a baseline and check for malignancies He was surprised my former Dr never ordered it.

He spent about 30 minutes with me--and he didn't think I was crazy at all regarding the food intolerance (like my former GI did). He also obviously knew far more about Celiac than any other doctor that I've seen. Which actually isn't saying all that much

Wow, sounds like a great appointment!!!

Mtndog Collaborator
Mtndog
Posted
It's my understanding that when we get bitten by a tick after we are infected, WE infect the tick! So, now they are not only a danger to me, but I'm dangerous to them! :P

That would be great if it caused them excruciating joint pain, headaches, nausea and brain fog :P

Patti- Your doc sounds good and at least he's going to give you a thorough work up- sorry about the blood draw :( OUCH!

Hi to everyone else...thank you so much for the good wishes!

CarlaB Enthusiast
CarlaB
Posted

Patti, I'm glad you found a GI you like.

I thought I was feeling a bit better ... I drove Sadie to her softball game and didn't even last there until the game started! :o So, I'm back home and Adam is picking her up. He's going to buy or rent a movie for date night. :rolleyes:

I didn't hear anything last week about my c diff test ... they would have called if I had it. I meant to call them today to be sure they got the results, but I would have had to walk downstairs to get my cell phone. :ph34r: I don't even like to eat because it makes my stomach upset.

This is what happened when I went to see the GI about possible celiac almost two years ago ... it's the same thing exactly, so it may not have anything to do with the meds. I've lost about 5 pounds over the past month or so.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Disturbia looks disturbing. :lol: It looks too scarey for me. :P

My mom saw it and said it was really good...my friend said the same thing. I like suspense movies and when I saw the previews it looked like it would be good.

My friend said we're gonna see "The ex". I was like..."Hey!! I didnt even pick yet!! I dont even know what that movies about!!" :huh:

So yeah....my friend said that for sure...this is what I would have picked...so we're seeing "The ex". :rolleyes:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Does anyone else think lyme could be behind her illnesses?

I think so....but it doesnt really matter what anyone else thinks....she might not be wanting to know if it is or isnt. Kind of like what Bev went through. Whether its Lyme or not I do hope she gets to the bottom of things.....Robbin is a really sweet person....she deserves to be healthy too. :)

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      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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