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Rachel--24

Omg...i Might Be On To Something

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I have trouble remembering to take my Lariam every fifth day .... so I took it today .... that means I need to take it again Tues ..... hope I remember! Ugh. If it were once a week, that would be easy!

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I agree with the whole Dr thing, as far as finding a Dr other than your LLMD. My LLMD's office said I needed to see my PCP for something and well, my PCP thinks Lyme doesn't exist in CA! :o:lol: Needless to say, I'm not going back to him. So that leaves us looking for another Dr and we think we found one who is very open minded and into alternative stuff, but still a DO, so he can write prescriptions.

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I have trouble remembering to take my Lariam every fifth day .... so I took it today .... that means I need to take it again Tues ..... hope I remember! Ugh. If it were once a week, that would be easy!

Ugh is right! I'll try and help you to remember. :)

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Julie...heres some links to info. on PST deficiency, salicylates, sulfation etc.

http://www.autismcanada.org/sulfate.htm

http://www.enzymestuff.com/nofenolfile.htm

http://www.treatingautism.ik.com/p_ESBATHS1.ikml

http://www.henryspink.org/feingold_food_programme.htm

http://www.sensory-processing-disorder.com...alts-Baths.html

In my case I can be feeling pretty good until I start adding in foods. Depending on the phenol content of the foods I'm eating I might fel ok for a day or two before I start feeling toxic.

Other things besides foods also contribute to the total load including cosmetics, hair/skin products, fragrances and other things I come into contact with. I dont really use anything with alot of natural ingredients because they have high salicylates and I end up getting worse. :(

Also the chemicals my own body releases when I get upset or stressed out tend to cause a reaction not any different from the food reactions but usually worse.

It doesnt take much for my "bucket" to become full and start spilling over. I think at that point there are alot of reactions occuring due to the overload of toxins....and as a result increased sensitivity and excess histamine.

I think for me the salicylates are the worst because not only do they require PST for detoxification but they also inhibit the PST enzymes up to 50%.

Salicylates seem to make me feel toxic very quickly.

----------

My Doctors Data results are in so I get to keep my appt with Dr. S. for tomorrow and I'll have the results in-hand when I see Amy on Monday. :)

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Ugh is right! I'll try and help you to remember. :)

Thank you!

I posted some pics of Kassandra and I on my myspace. My myspace page name is the same as my LN screen name .... I don't want to post that name here, not so you don't know it, but so people can't Google my LN name and get my real name. :D It's www.Lame Advertisement/LNscreenname .... PM me if you don't know my screen name. ;)

Some pics are taken as recently as yesterday .... from my daughter's ensemble concert. More goofy pics of my hubby! LOL

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Ok i just had an idea. Do you think my malabsorption could of been higher cause of the bacteria in the water. That maybe the water had been contaimated longer then they think and that when these people went to the dr they said it was stomach flu when in actuality it was this bacteria(they have not confirmed its salmonella).

paula

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Rachel, where do we get PST from?

Rinne....PST = phenol sulfur-transferase. PST are enzymes which are involved in the sulfation pathway...a *key* detoxification pathway. Usually if there is a deficiency its because the body is lacking sulfates and the enzymes require adequate sulfate in order to function.

The lack of sulfates inhibits the enzymes and slows down detoxification.

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And Rachel, I feel like an evil genius in the kitchen, :lol: I've even come up with something which resembles an icecream sandwich and it is made with vegetables.

Yes Rinne....definately an evil genius!!

You've figured out exactly how to keep me from racheling the ice cream sandwiches! :P

Vegetables??? :huh: EEEEEK!!!! :o

Veggies are evil....they are worse for me than sugar!! I knew there was a reason I avoided them all my life....it was my "intuition" telling me NOT to eat broccoli and to go for the McDonald's #1 meal instead (with nuggets of course).:D

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Veggies are evil....they are worse for me than sugar!! I knew there was a reason I avoided them all my life....it was my "intuition" telling me NOT to eat broccoli and to go for the McDonald's #1 meal instead (with nuggets of course).:D

Ha! #1 at McDonalds. I use to work at McDonalds off and on for 3 years. Where didn't I work? :huh:

I sold sssooo many extra value meals that I remember they were $3.25 back then. And it was like a quarter to super size it.

We promoted things like Batman the movie. IT was cool because I remeber the fry cartons were black with a bat symbol on them. Yeah Good TImes....

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My Doctors Data results are in so I get to keep my appt with Dr. S. for tomorrow and I'll have the results in-hand when I see Amy on Monday. :)

Can't wait for both updates! :D

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I've had doubts about this guy from the beginning, but was hoping he could give me some answers anway. I mean, what GI has never heard the term "bazooka barf" before? :lol:<_<

:lol:

Probably won't be me for a while, lol. I actually TRIED this once, but gave up because my lymie brain couldn't deal with it all. :P

Well at least you TRIED! More than I can say for myself :lol:

ME TOO JUST HEARD ABOUT YOU.

TAKE CARE.

I'M OK.

JUDY

Thanks Judy :)

Also thinking about dumping the holistic MD and letting them deal with my endocrine issues. Trying to simplify, and all that.

Simplifying is good :)

Can your LLMD refer you to some of these people that specialize in different things (that is if your LLMD isn't a one stop shop so to speak)??

It's nice to have everyone on the same page, or at least working towards working together, if at all possible.

I wrestle with this too because my LLMD doesn't necessarily cover the basics that a good GP should do, but finding one to trust is an issue.

I hate having to educate them and then be viewed as hypochondriac. It seems like it comes down to educating yourself and then going in to ask for what you think you need.

So true Sherry.

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I've done the same thing though not lately :ph34r::lol: so if we are crazy I know I am in good company.

:P We have to get our vegetables someway, why not with chocolate? :lol:

I've served these and watched peoples' faces change from a reluctant willingness to taste them to astonishment at how delicious they are. I love to blow peoples' tiny little minds, mine snapped years ago. :rolleyes::lol:

:D rinne

I bet they taste great, like those cookbooks that are out that hide veggies in the recipes for kids.....i.e. spinach in brownies. It supposedly gives lots of flavor and depth to the baked goods.

Julie...heres some links to info. on PST deficiency, salicylates, sulfation etc.

It doesnt take much for my "bucket" to become full and start spilling over. I think at that point there are alot of reactions occuring due to the overload of toxins....and as a result increased sensitivity and excess histamine.

----------

My Doctors Data results are in so I get to keep my appt with Dr. S. for tomorrow and I'll have the results in-hand when I see Amy on Monday. :)

Thanks so much Rachel :)

Isn't that the truth about the "bucket" getting full, mine seems to overflow very easily these days :(

Glad you got your test results in time! Have a great appt.

I posted some pics of Kassandra and I on my myspace.

Oh yay! I'll take a look :)

Ok i just had an idea. Do you think my malabsorption could of been higher cause of the bacteria in the water. That maybe the water had been contaimated longer then they think and that when these people went to the dr they said it was stomach flu when in actuality it was this bacteria(they have not confirmed its salmonella).

I don't know Paula.

I heard about that on the news, I'm, sorry this happened in your area :(

We promoted things like Batman the movie. IT was cool because I remeber the fry cartons were black with a bat symbol on them. Yeah Good TImes....

:lol: Lisa

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L Rocks!!!!! I just got a fax from her excusing me from jury duty. Was wondering how in the world I was going to juggle the protocol I'm on AND the court's schedule.

I see the holistic MD on Monday. I'm so hoping that Dr H's office has gotten ahold of her with their recommendations (and follows them). If not, then I'll be dumping another doc. That'll leave me with 2 - the LLMD and the idiot ENT who's handling the possible thyroid cancer issue.

I have a PCP, but haven't seen her since March of last year. She's the one who refused to run tests for Lyme because I didn't have joint pain or intermittent fevers. I use her as a lab report receptical. I haven't told her at all about the lyme, although I forward the holistic MDs test results to her on an intermittant basis, just in case. She's handy to have because she has local hospital affiliations.

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I just read through the first 100 pages of this thread :o I was getting a little nostalgic I guess with Rachel mentioning it was near the 2 year anniversary of the thread, and then Rinne's recent posts.

It seems like a life time ago, yet I remember all of that like it was yesterday.

When I have more time I'm gonna read those pages too....how FUN!! :D

I remember it like it was yesterday too. So many good memories in those pages....lots of laughs. We all just really connected and almost from the start it felt like this was a really "cozy" place to be. Just like a pajama party. :)

I had some real problems with just a very small amount of IV cysteine that they tested me with today. So I'm not going to be supplementing any cysteine for now. I'm afraid of it.

So no glutathione and no cysteine, both of which tested as very low.

Sherry, I have problems with both cysteine and glutathione as well. I've only tried oral cysteine but it never went well for me and those supplements tested poorly. I had a negative reaction to IV glutathione as well as oral and it tested as a major stressor for me in ART.

I'm wondering if I'm unable to convert sulfur compunds to sulfates. That would explain the negative reactions and it would also explain why I would have problems with PST and the sulfation pathway.

The second method of enhancing the detoxification process is to supply more sulfate. This increases the amount of toxins processed out. Sulfate ions may not be absorbed well from the gut, so simply giving more sulfur directly by swallowing supplements may not produce satisfactory results.

Some people have seen improvements by supplementing with the sulfur-containing amino acids cysteine and taurine, or MSM (methysulfonylmethane), or by using one of the many commercially available MSM creams. However, others have not found this tolerable. This may be because their body is unable to convert the sulfur to the needed sulfate form.

People with low or no ability to convert compounds to sulfate have problems handling environmental chemicals, some medications, and even some chemicals produced within the body.

Most people do see improvement with Epsom salts because the form of sulfur in the Epsom salts is already sulfate and readily available to the body.

Rachel-

you know me I cannot handle anything!!!! but i have been able to tolerate the MSM thats why i suggested it.

Mia...thats great! Do you think its helping you? Have you noticed any improvement?

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Regarding GI Dr.'s....I had seen 3 different GI's and had alot of testing done....which led to nowhere. I was given the IBS label after all was said and done. I didnt get any answers and I'm positive that if I'd continued to see GI Dr.'s I'd still be at square one...never moving forward. :(

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Patti....very cute avatar! :)

Its nice to "see" both you and Judy....I miss you two. :)

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A properly seasoned cast iron skillet is so much better than non-stick!! I just rinse mine and dry it with a paper towel! It doesn't even need washing!

Non-stick is horrible for you .... the fumes will kill a bird!

Remember the Le Creuset stuff I got for my birthday last year?? I use it everyday and I LOVE it....and its not toxic...it wont kill birds. :D

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Ha! #1 at McDonalds. I use to work at McDonalds off and on for 3 years. Where didn't I work? :huh:

I sold sssooo many extra value meals that I remember they were $3.25 back then. And it was like a quarter to super size it.

We promoted things like Batman the movie. IT was cool because I remeber the fry cartons were black with a bat symbol on them. Yeah Good TImes....

Lisa...I never worked at McDonalds. :(

Imagine how many Big Macs I missed out on!!!

I was working at Togo's which is *almost* as good...but nothing beats the Big Mac!!

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Can't wait for both updates! :D

I cant wait either!! Is it monday yet?? :lol:

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Remember the Le Creuset stuff I got for my birthday last year?? I use it everyday and I LOVE it....and its not toxic...it wont kill birds. :D

Yes, I do! I have some Le Creuset and love it, too! But my skillets are old fashioned Lodge skillets .... well, one is my great, great grandma's old skillet, LOL.

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I wish I had LE creuset stuff. But no work, no money. I told my mom that I feel better to go to work and that I want to work. She said she doesn't agree. Wait I'm 35 years old I live at home and want to work so I can get stuff like this.

Tomorrow I go see Dr. M. :D I'm going to take my camcorder so I can tape our road trip. I am making a documentary you know. I journal everything.

My mom was eating ice cream and it started melting. She asked me to hold it. Well yeah, it wasn't melting anymore it got real, real cold though. Go figure. :unsure:

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I told my mom that I feel better to go to work and that I want to work. She said she doesn't agree. Wait I'm 35 years old I live at home and want to work so I can get stuff like this.

Tomorrow I go see Dr. M. :D I'm going to take my camcorder so I can tape our road trip. I am making a documentary you know. I journal everything.

Wow Lisa...I'm so happy to read this! :D

You feel good enough to go to work?? Thats AWESOME!! Its clear from reading your posts that you're in a much better place now...compared to awhile back. It makes me really happy....cant help but smile. :)

It seems like you have alot less worries since you started seeing Dr. M?? I'm glad you like him and Dee. I'm sure your mom is really happy you're feeling better but just doesnt want you to overdo it with trying to work already.

When did you start journaling? Taping your road trip sounds like it'll be fun. One of these days we'll have to meet up while you're over here. :)

Tomorrow I see Dr. S....I havent seen Dr. M. since summer....but tell them I said "Hi". :)

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You do sound a lot better Lisa! Your myspace is cute, too. :) Is that really you in the picture that says "me before I got sick"? It's so small I couldn't tell .... if it is, your hair was really long.

Well, my herx may not have been as bad as I thought. I had a fever, sore throat and diarrhea as part of it. One of my kids just got up and has a fever, nausea (not vomiting yet, but thinks it's coming) and sore throat. So, maybe I was just SICK! Well, part was herx, but the bigger part could have been a virus.

I hate to be happy about a kid being sick .... well I'm not happy she's sick ... but I am happy to know I didn't backslide as far as I thought.

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Lisa,

I have to agree with the others. You do sound like you are feeling better. I'm also glad that Dr. M has been good for you.

Carla,

Viruses are awful but it is nice to know that your herx wasn't as bad as you thought. Hopefully your daughter will be up and feeling much better by the end of the weekend.

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i need some help, i just remembered in bioset my thyroid came up as high...i had t4, t3 and tsh come back fine, is this surprising? the bioset lady said i should see somebody she knows that's a holistic thyroid doctor, but i just feel like my thyroid is cause of something...what things are possible to cause an overactive thyroid? because those tests coming back fine surprises me

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