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Rachel--24

Omg...i Might Be On To Something

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Glad to hear Kassandra is doing well and no further surgery is needed! Pain meds don't work well on me either, so I'll be praying for her.

I've had that leg cramp thing happen too...hasn't happened in a long time though...I'll have to remember the soap thing, lol.

I'm being run all over town and getting a makeover.......my friend mentioned bringing flip flops so I don't ruin my toes though, :P Also going to dinner at a place that says they can handle gluten free. :)

OMGosh, I am sooooooo happy you are doing this!!!! This sounds like a great fun relaxing day for you (will pray for Mitch, but you aren't allowed to think about them!!!)! And, yes...NO CONSERVATIVE COLORS!!!! Right now I've got on bright royal purple polish with silver glitter stars, lol.

I am feeling horrible. I feel like I have the flu. I've been reading a lot about Lyme and mold toxins and learned that they cause cytokines, as we have talked about before. I think that's part of the reason I have felt better on abx as I believe abx have anti-inflammatory properties.

Gosh Carla, I hope this all clears up soon...you've kind of been suffering for a while now.

I'm taking the EM makeup with me.....thanks Donna. :)

You're welcome!

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April,

Hope the convention goes well with the kids today. That leg pain doesn't sound good.....being woken from a sound sleep. I get pain once in awhile to. Not sure how to expain it. It's been happening for 9 years now. I used to just get up and walk around for awhile. The heating pad works for me too. Can't do leg massage as that makes it worse.

Eating breakfast (that hubby fixed) and waiting for the hot water heater to get warmed back up (the breaker tripped again). Then I've got to shower and get out of here. "See" you all tomorrow. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Thanks, Donna. I took the tumeric this morning and it helped a little, but I had to take a Norco. It's the inflammation. I'm only eating "easy" foods. Yesterday it was just toast, broth, and smoothies.

I wanted to update you all on Kassandra. She won't be going home as expected. She's still on the highest dose of morphine, so she needs to stay. So, keep her in your prayers still.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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The tumeric/curcumin Adam bought me last night seems to help with the inflammation. I didn't need a third pain killer yesterday. We'll see how it does today.

Carla, this is what Dr. P. wants me to try. What brand did you get? I havent found it yet (but I havent really tried too hard either :P ).

I'm not supposed to start it until I get all my tests done. I'm done with my bloodwork. Got a nice big bruise....still there from last Monday. :rolleyes:

I still gotta take a urine test (on hold cuz of my monthly visitor).....and then I can start on the curcumin...if i can FIND it. :P

I hope it helps with my inflammation too! My fear is that it will actually cause MORE inflammation. :rolleyes:


Rachel

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Rachel, I think you make a very good argument. But, when you are having such reactions, how do you NOT take out the foods? I think I did became deficient in calcium over time by taking dairy out of my diet for so long. I figure if I would have done the SCD diet from the get go, I might have healed more by now. I would have been able to eventually eat all that yogurt at least!

April,

I think you DO have to take out the foods. The only way I could have seen myself keeping the foods in would be if I had started proper supplementation (providing my body with whatever its needing to clear the pathway)....BEFORE I got down to a really restricted diet.

It wouldnt have been possible unless I'd been doing all of these tests and having a better idea of whats going on way back when all of this began.

Supposing that when they ran tests 5 years ago I was found to have very high levels of cysteine...or that there was an obvious block in the sulfation pathway. Then they might have put me on a diet which restricts sulfur bearing foods.....and supplemented whatever my body needs to try to correct that problem.

Thats just an example....but from what I understand if they are able to identify specific problems....a specific diet and supplementation protocol can help improve the impaired function of the methylation cycle.

Diet is a part of it....so definately its gonna help to remove certain problematic foods....but which ones??? Some people might need MORE sulfur....and some people need to restrict it. I think for me (a non-celiac) I got less nutrients after going gluten-free.....because even though I was eating mostly processed foods...most of it was fortified. I felt better because my system wasnt so overwhelmed with all the chemicals I was dumping into it....but I also got more sensitive because I lost nutrition.

I would have been losing nutrition regardless....because of malabsorption issues....but it probably became a bigger issue overtime (as I took in less and less).

Things just seem to get complicated because once the body is impaired (as far as its ability to detoxify)....the slightest change in ANYTHING can make things either better or worse. Figuring out how to make things better WITHOUT making them worse is the real challenge.

Even though I became more sensitive....I do feel I had to remove foods that were causing me problems. I am functioning much better.....the trade off is that I cant expand my diet until the other issues (biochemistry) are addressed.


Rachel

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Rachel, I think Anna has Curcumin. I bought some from her several months ago, but have never tried it. :ph34r: She really wanted me to take it, but I'm afraid, lol.

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Rachel, I think Anna has Curcumin. I bought some from her several months ago, but have never tried it. :ph34r: She really wanted me to take it, but I'm afraid, lol.

Yeah....thats how I feel too....afraid. :ph34r:

I havent been to Anna's new clinic...I'm not even sure where she's at exactly. Dr. P. said I could get it at Whole Foods....but I didnt see it there. Which brand is it? If its got less "ingredients" than the one Dr. P. recommended....I'd rather try that one. The less "stuff" the better. I just want the curcumin. :)

Btw.....so far I really like Dr. P. He seems to be more proactive with the tests, getting answers and getting me on the right treatment program. I dont feel like he's sending me to the new voodoo lady so that she can "take over"....but rather so that she can give him more insight as far as how he's gonna treat me. So far so good....the cost (as far as appt.'s) has been exactly the same as Dr. S.

We'll see what happens in the next few months. ;)

If he can get me better....I'll recommend him to EVERYONE. :P


Rachel

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I wanted to update you all on Kassandra. She won't be going home as expected. She's still on the highest dose of morphine, so she needs to stay. So, keep her in your prayers still.

Thanks for the update Carla. I'm still thinking about her...I hope everything is ok.


Rachel

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Tonight I woke up with the worst leg cramp. Then I almost passed out! :o Leg cramp woke me from a dead sleep and I jumped up out of the bed so fast. Then I got real dizzy and almost passed out!

I dont know if what I was experiencing with leg cramps was the same thing but I had this for short period of time. It was mainly happening in the middle of the night....when I was stretching my leg in my sleep. I would suddenly wake up with major pain in my leg....and it would last maybe a minute and then I'd be fine.

I remember it happening once in the bathtub and once walking up the stairs....but mostly it was during my sleep. This was actually before I got sick.....it went away on its own so I'm not sure what caused it. One thing I was told was potassium....but I dont know because I didnt do anything different to make it start and then stop.

It happened occassionaly since I got sick too....I'm pretty sure from the food issues. Its been a really long time now since I've experienced it.

They were very painful though. All I could do was hold my leg and just not move until it subsided.


Rachel

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I have heard of the soap thing many times, LOL.

I never heard of using soap until now. Where was this info. when I was needing it. :P

Does it only work for cramps?? I dont get those anymore. I think my mom might freak out if I put a bar of soap under the covers while I'm at her house. :lol:

Oh...there is no more "DECORATION" towel on the sink in the bathroom. Its GONE.

My mom said she read my post about using it to clean up the baking soda....and took it away. So now I cant use it to wipe up my "excess" deoderant. :lol::lol:

Hmmm...I wonder when she's sneaking on here and reading?? :huh:


Rachel

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Today is the convention....I think I am going to have to take my 2 kids by myself.

April,

Hope you have a good time. Cant wait to hear about it. :)


Rachel

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Oh...there is no more "DECORATION" towel on the sink in the bathroom. Its GONE.

My mom said she read my post about using it to clean up the baking soda....and took it away. So now I cant use it to wipe up my "excess" deoderant. :lol::lol:

Hmmm...I wonder when she's sneaking on here and reading?? :huh:

HAHAH!!! I could just picture your mom reading alone, then jumping up out of her seat to go get the towel from the bathroom and then hide it from you..HAHA!!

Bad Rachel. :angry:

Speaking of leg cramps, I also use to get those all the time also.... when I woke up in the morning to stretch my legs. I use to get them in the calve muscle. All you do is pull your toes upward and it will take that cramp away. More magnesium is better for cramps also.

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Yeah....thats how I feel too....afraid. :ph34r:

I havent been to Anna's new clinic...I'm not even sure where she's at exactly. Dr. P. said I could get it at Whole Foods....but I didnt see it there. Which brand is it? If its got less "ingredients" than the one Dr. P. recommended....I'd rather try that one. The less "stuff" the better. I just want the curcumin. :)

Btw.....so far I really like Dr. P. He seems to be more proactive with the tests, getting answers and getting me on the right treatment program. I dont feel like he's sending me to the new voodoo lady so that she can "take over"....but rather so that she can give him more insight as far as how he's gonna treat me. So far so good....the cost (as far as appt.'s) has been exactly the same as Dr. S.

We'll see what happens in the next few months. ;)

If he can get me better....I'll recommend him to EVERYONE. :P

Your mom!!! :lol:

Good to hear about Dr. P...I'm still thinking about going to see him, but I'm just waiting until after this next surgery before starting anything new or seeing anyone new. That'll give me at least a few months for you to tell how MUCH you really like him, lol.

I haven't been to Anna's new place either. Their website (at least a few weeks ago) still had the mall address, unless they just moved somewhere else in the mall. I wouldn't mind being tested for a few more things...the precancer thing, and I had the cancer miasm... :rolleyes:

Okay, the curcumin...

It's liquid and the ingredients are: Curcuma, Bupleurum, distilled water and grain alcohol. The alcohol scares me...I contacted them to make sure it wasn't wheat/gluten, and they said no it wasn't. And, what's up with that bupleurum....looks like a bad accident between burp, bubblegum and rum. :lol:

Anyway, the blurb on the bottle says: This product contains Chinese herbs traditionally used to stimulate energy circulation, relieve congestion, and resolve bruises and clots.

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It's liquid and the ingredients are: Curcuma, Bupleurum, distilled water and grain alcohol. The alcohol scares me...I contacted them to make sure it wasn't wheat/gluten, and they said no it wasn't. And, what's up with that bupleurum....looks like a bad accident between burp, bubblegum and rum. :lol:

Anyway, the blurb on the bottle says: This product contains Chinese herbs traditionally used to stimulate energy circulation, relieve congestion, and resolve bruises and clots.

Ah ha! see there Rachel, you need some of that burpy bubblerum to take care of your bruiseses.

I have seen Curcumin at Whole Foods in bulk in whole body. I haven't really noticed it anywhere else but I'm sure it's their.

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Carla, this is what Dr. P. wants me to try. What brand did you get? I havent found it yet (but I havent really tried too hard either :P ).

I got (well, Adam bought it for me :P ) Solaray Tumeric. It's just Tumeric and gelatin capsule. Whole Foods didn't carry curcumin, but this is guaranteed to be 95% curcumin). It's supposed to be anti-inflammatory. I'm still on Norco .... so I don't know how much it's doing.

But, Dr. Shoemakers says to pre-treat with Actos before using cholestyramine .... so with the curcumin, maybe it will take a while to counter-act the inflammation that's already there. I feel like I have the flu. It's not like I felt with Lyme .... I don't have all those other symptoms, "just" inflammation type stuff.

If I weren't going to Germany, I would be really concerned with how to get rid of these recirculating mold toxins. Dr. Shoemaker says that some just can't detox them without help and that cholestyramine is the only binder that he's had work effectively. I guess I could try peach tree extract when I get back if it's still a problem. Between now and Germany, I just want to try to be a little more comfortable. Gosh, haven't worked out in weeks, I'd really like to get back to the gym, too.

Oh...there is no more "DECORATION" towel on the sink in the bathroom. Its GONE.
Yeah, she didn't want baking soda falling from your pits onto the decoration towel! ROFLMAO, that is SO funny that she removed the towel!

I keep paper towels in the bathroom. The kids use them. Do you have any idea how impossible it is to have a decent hand towel when six kids share a bathroom?


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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HAHAH!!! I could just picture your mom reading alone, then jumping up out of her seat to go get the towel from the bathroom and then hide it from you..HAHA!!

:lol::lol:

Lisa.....yeah....and then she couldnt WAIT for me ask what happened to the towel. :lol:

She was really proud of herself I think. :lol:

There is NO MORE "decoration" towel. :P

I guess when I was little it was enough to just say "dont touch".....now that I'm an adult she actually has to take it away from me. :lol:

See.....I'm just "backwards" in every way! :rolleyes:

Bad Rachel. :angry:

Yes, very bad Rachel!! :lol:

Speaking of leg cramps, I also use to get those all the time also.... when I woke up in the morning to stretch my legs. I use to get them in the calve muscle. All you do is pull your toes upward and it will take that cramp away. More magnesium is better for cramps also.

My cramps were usually in my thigh....I've gotten them in my calves too but those really bad ones I was getting were in my thighs. I dont think I could have pulled on my toes because I was pretty much immobilized by those "attack charlie horses". Moving was just not an option. :P


Rachel

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I would get cramps in my lower legs including feet and toes. ANY stretching, toe pointing or whatever, immediately made it far far worse. Walking it out helped some. It was happening several times a night and lasting 5 minutes or more so I went searching for answers....

The soap worked but there was discussion of what brands were best.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Your mom!!! :lol:

Yeah.....she's been really extra FUNNY these days. :rolleyes::P

Good to hear about Dr. P...I'm still thinking about going to see him, but I'm just waiting until after this next surgery before starting anything new or seeing anyone new. That'll give me at least a few months for you to tell how MUCH you really like him, lol.

Yeah....I should know in a few months if he's a keeper or not. ;)

It was a good sign that he was really excited about figuring this out. He had all of my test results and a map of the methylation cycle spread across his desk. He was kind of "pumped up" toward the end of the appt. He clenched his fists and was like "I can't WAIT until we get these new test results in!!"

Ummmm.....it seemed like a positive thing to me. :lol:

It seems like he's up for the challenge. Thats what I really like in a doctor....someone who gets excited and really feels that they CAN figure things out. As long as I know that he really WANTS to be the one the one to improve my health....then I feel like he's gonna give it his best shot. :)

So I'll keep you posted. :)

I haven't been to Anna's new place either. Their website (at least a few weeks ago) still had the mall address, unless they just moved somewhere else in the mall.

I know that wherever she moved to.....its definately AWAY from the mall....and I think thats a good thing. :lol:

It was kind of funny. One of the times I was there to see Amy....the mall was closed. I think it was a holiday or something (cant remember).....but Amy and Scott couldnt get in....neither could the patients. She was like "Its so weird that we're in the mall". :lol:

So yeah....I think the new place is probably much better as far as alot of things...including parking. It was heinous trying to make it on time for my appt. when I couldnt park ANYWHERE. I think I was almost in tears once because of that. :rolleyes:

It's liquid and the ingredients are: Curcuma, Bupleurum, distilled water and grain alcohol. The alcohol scares me...I contacted them to make sure it wasn't wheat/gluten, and they said no it wasn't. And, what's up with that bupleurum....looks like a bad accident between burp, bubblegum and rum. :lol:

Anyway, the blurb on the bottle says: This product contains Chinese herbs traditionally used to stimulate energy circulation, relieve congestion, and resolve bruises and clots.

Bupleurum......LOL.....thats a new one. :lol:

Whatever it is...I'm sure I cant have it. :P:lol:

It sounds like its a tincture. He was wanting me to try the capsules....but they have all that extra stuff (I looked up the ingredients online). Its just the curcumin....but then theres all the fillers and binders. :rolleyes:

I wonder if the tincture would be better....I cant tolerate the alcohol but at least I can let it evaportate first.

I guess I'll see what happens with the capsules first.


Rachel

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The soap worked but there was discussion of what brands were best.

If this starts happening again...I'm totally going for the soap. :D

Have to find out which brand is best though....my luck I'd buy the one that doesnt work. :rolleyes:


Rachel

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I got (well, Adam bought it for me :P ) Solaray Tumeric. It's just Tumeric and gelatin capsule. Whole Foods didn't carry curcumin, but this is guaranteed to be 95% curcumin). It's supposed to be anti-inflammatory. I'm still on Norco .... so I don't know how much it's doing.

Hmmm....this actually sounds better. Last time I was at Whole Foods I didnt ask for help....this time I'll ask someone. Theres a couple other really big supplement/health stores right next to whole foods....so between the 3 places I should be able to find it.

If I weren't going to Germany, I would be really concerned with how to get rid of these recirculating mold toxins. Dr. Shoemaker says that some just can't detox them without help and that cholestyramine is the only binder that he's had work effectively.

Yeah....thats what I had read as well. Scott talked about that alot too. I think its because the immune system doesnt recognize the toxins as being "toxic".....and so it doesnt do anything to get rid of them. They just get recirculated in those cases.

Will Dr. W's treatment address that?

Yeah, she didn't want baking soda falling from your pits onto the decoration towel! ROFLMAO, that is SO funny that she removed the towel!

Yeah.....she gave me some ugly rag looking thing to use instead. :lol:

Its not soft like the decoration towel was.

MOM...if you're reading this.....PUT THE TOWEL BACK!! :lol:

I keep paper towels in the bathroom. The kids use them. Do you have any idea how impossible it is to have a decent hand towel when six kids share a bathroom?

I dont think having a "decoration" towel is even a possibility in your house. :lol:


Rachel

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Cholestyramine sounds like one I better get tested in January. Dr. E may have tried it already, likely did. My body has been particular, LOL.

Yesterday we did some cleaning, sorting, reorganizing to move some stuff out of the bedroom. My allergies went crazy and still today. Feels like the mold reaction, but it could also be dust.

My DH's desk/office space is in our bedroom and he has a lot of stuff out on open shelves. I think we are going to have to address that, it is impossible to keep dusted. That's the next step.

We did check the mattress and all looks just fine. Washed all the mattress pad layers and stuff. I will wash the curtains soon too but I want to finish with moving stuff out and cleaning first.

Sorry to hear Kassandra is still hurting so much and still in the hospital. I am so hopeful the pain isn't from something different not yet addressed.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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My cramps were usually in my thigh....I've gotten them in my calves too but those really bad ones I was getting were in my thighs. I dont think I could have pulled on my toes because I was pretty much immobilized by those "attack charlie horses". Moving was just not an option. :P

Mine always happen in my calf. I haven't had them in a LONG time. The wierd thing was I couldn't stretch it out because then the front muscles started cramping. Feeling like I was going to pass out if I kept standing wasn't helpful at all!

I have been drinking lots of water today. I did a pinch of salt a few times with a big glass. I think I'll do the Cal/mag again before bed.

I'll post later about the convention today. I am too tired right now!

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I have been drinking lots of water today.

Drinking enough water has always been difficult for me....just reading your post right now made me realize that I havent yet drank ANY water today!

This is something that probably has an affect on how I feel each day. I bet if I kept track....I would notice that the more water I drink....the better I feel.

Do you think this could contribute to cramps?? I dont get them now....but before I got sick (and when I was getting the charlie horses) I did not drink ANY water....EVER. :blink:

I only drank milk, soda or juice....but never water.

I hope you enjoyed the convention. :)


Rachel

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