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    Do you have questions about celiac disease or the gluten-free diet?

Rachel--24

Omg...i Might Be On To Something

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Donna,

What is COQ-10 for? All I remember is my LLMD's PA told me NOT to take it. LOL! I don't know what it's for?

One of the tests the LLMD ran showed I was definicient in COQ10, so I've been on it since last year. It is produced in the body...something to do with cells. It's also an antioxidant and is good for the heart.

Here's a couple links:

http://en.wikipedia.org/wiki/Coenzyme_Q10

http://www.nlm.nih.gov/medlineplus/druginf...oenzymeq10.html

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Yeah supplement cost is expensive. Everything about this illness is expensive. I can only eat organic chicken. 5 bucks for 1 breast! :o I can only afford to eat once a day. Not only supplements but food is expensive to. We don't have a lot of farmers markets aroud fresno area.

Whole Foods an organic lemon is about 80 cents. I need one everyday and thats expensive. I eat apricots to S#!t and they are expensive too. :angry:

I don't take chlorella no more. I hear a lot of horror stories about it. Can it mobilize metals and cause brain damage. I mean I can tolerate it. I take bentonite clay. Does anyone know if this is good?

My Dr. gave me some King Chlorella. Can't tolerate that one. It has Russian Immune in it. Makes my stomach hurt.

Miamia sorry about the sonogram too.

Andrea hope and pray you do better.

Rachel what about this new something? ;)

Carla hope you have a good rest of the day.

Donna yeah need to get on the truck again. I just keep falling off. :rolleyes:

Oh yeah is a probiotic good to take anyone if you still have fillings in your mouth?

Lisa

I see you JIN

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Lisa,

I'm on probiotics and have amalgams, but I'm not as toxic as you are. I'm also taking King Chlorella as a toxin binder so that may be helping with that.

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Donna,

What is COQ-10 for? All I remember is my LLMD's PA told me NOT to take it. LOL! I don't know what it's for?

It's really a good supplement, but you can't take it with Mepron.

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Susie,

I'll go anywhere from 3-5 days. :phe34r: The ionic mag just started to get me going once a day, but then I cheated and had casein and got bad C again. :ph34r:

April,

Congratulations on your appointment with the LLMD!

Everyone,

I had another EAV appointment today. We covered, again, a lot of ground. This time copper and mercury tested normal (and copper was bioavaiable), but aluminum and nickel came back high. H. pylori also went away, but I think it's just that my body's decided other things are more important now. Babesia showed up this time. :o As well as mycoplasma for arthritis and pneumonia.

I also started on the humaworm yesterday and nothing has happened yet. :ph34r:

Hey Birdy!

Does your ionic magn have other ingredients in there. Did I ask you this already!? Sorry if I did. Anyway, mine has a few other trace minerals. I am having a hard time getting past the taste. UGH! Its horrible!

Also, what is EAV?

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Also, what is EAV?

April,

EAV = electro-acupuncture by Voll

Electrodermal Screening :)

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Oh yeah is a probiotic good to take anyone if you still have fillings in your mouth?

Yes, you can take probiotics with fillings assuming you don't react to the probiotics.

It's really a good supplement, but you can't take it with Mepron.

Yeah, I figured it must have something to do with something she was taking. I'm not on any prescriptions, except the B12 injections (if that can even be considered prescription, lol), so I guess that's why my LLMD didn't say anything.

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Do you all find that your friends don't quite understand your situations?

I don't even know why I bother talking about it with any of them. Its like I have to pretend it doesn't exist. What is the deal with that?

I mentioned to one of my friends who has been around during the past 3 1/2 years of my ups and downs - and although she doesn't know a lot about them (because I don't/can't talk about it) I mentioned today that I thought the mold that was behind the living room walls *contributed* to my situation.

She proceeds to tell me that mold *THEN* wouldn't have anything to do with NOW and I shouldn't stress or have anxiety about it because I can't control everything in my life. And from what she learned from all her doctors a good diet and exercise helps us deal with the normal toxins in the world, blah, blah, blah.

Well, I wasn't stressed or having anxiety about it, I was just stating a fact that I figured out in my events of things. I don't even ever talk about it to anyone that much except for people on the computer. :P

UGH! So frustrating!

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April, yeah, no one gets it. I just tell people in generalities how I'm doing.

I have a question for those who have done LED. I have a green laser from nurse Andi .... I used the metals the other night because my LLMD mentioned wanting to get the rest of them out .... all were below "safe" range so there are not a lot, but there are still some there.

Well, every third night I take Zeolite (metal binder). I also sauna daily and have been better about doing it every day and staying in for at least 30 minutes.

So, the night before last I used the metals detox in the laser the same night I took Zeolite (since it binds metals). Yesterday I was dragging all day! I was so tired! I had no Lyme symptoms at all, so it wasn't a flare from the Lyme, I was just unreasonably fatigued.

I thought it might be because we've changed my thyroid meds and I'm taking stuff for adrenals ... but today I felt FINE. I was bushed this morning and dragged like I always do in the morning, which is why I'm on the thyroid and adrenal meds to begin with, but I had a very productive day after that.

So, has LED made any of you fatigued?

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So, has LED made any of you fatigued?

I haven't had LED done yet, but the children were fatiqued.

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April,

Not just friends, but family too I find just don't get it. Really nobody does unless they are going through it, that's why the support on these community forums are so helpful.

I don't really talk about it with anyone because they always think they know what will fix it, if I would just go on a vacation and get away, yeah right. Or they assume I am not doing enough to get better since it's been so many years of struggling with this. It ends up just making me upset and more frustrated, I have enough to worry about and battle with with the health issues as it is, I don't need to deal with all that other stuff on top of it.

So yes, I completely understand your feelings.

Carla,

I haven't done LED yet so hopefully some of the others can jump in and share their experiences.

Hi Birdy, thanks for the update :)

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Quick drive by, and I'll try to catch up in the next few days.

Good appointment with Dr. E, lasted 4 hours! No LED today.

Nutshell: main issues are lyme with all co-infections including bart (8 varieties of borrelia), rickettsia, strep, and h pylori.

Metals are a big problem too and are hindering things.

But with the right combo against the bugs and a couple more detox things, by ART all my organs ceased to be stressed. So the bugs are major. Zithromax is good and I still need it but it is not adequate.

No parasites showed up :) and my body really likes humaworm. Dr. E was impressed and told her assistant to order some to try on others.

PM me if you want more details on what she is suggesting that I take.

Oh, I brought in a small sample of the water I drink at home...and my body doesn't like it. She is going to try to figure out what is in it that is a problem.

Okay, my jet lagged body has to get to bed...ambien here I come!!

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It's really a good supplement, but you can't take it with Mepron.

I wonder why? Yea, all she told me was not to take it! :)

Sherry,

Sounds like a great appt! YAY! :D

Everyone,

I saw my brother today and we had a great talk! We cleared up some things and I feel really good about his progress and willingness to talk to me. He said in a family therapy thing in front of a ton of people that he wanted to get close to his "little sister." It was really sweet. :wub::) I am going to try not taking anything for sleep tonight...we'll see how it goes. ;)

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thanks for everyone chiming in on the BR issue I know i don't go enough right now. It really seems to be one of my main problems and the antibiotics are making it worse!!

Ok so i had a doc appt. yesturday -

I will continue on the levaquin for another 2 weeks that will make it 6 weeks in total and then we will evaluate it he would love for me to be able to stayt on it for the whole 3 months. I would love it to.

after we wil deal with babs and that will be with something else but i don't know what yet.

I got my sonogram results back and the pelvic was normal but the abdominal was unclear so i have tog et a CT scan done. I called to make the appt. but my insurance company is giving me a really hard time so i have to try to work it out today if i can.

I got my liver and kidney tested yesturday becasue you need these in order to get the CT done but i was also due for a check on those things so its good hopefully those results will be in really soon they never take to long.

We talked about charcoal and i may try it.

I am definitly going to start to take fish oil.

I asked him to talked to the gastro who is doing the endoscopy/ colonoscopy to tell him certain things to look for that can indicate parasites, etc. and he said no problem he will do this.

There is also this parastie test but NY state dosen't permit it( for no good reason) so we are going to work on me getting it ordered by an out of state doc. I have a few #'s to call today.

Okay overall that was the appt. I felt it was a pretty good one. So today i will probably spend the whole day on the phone which is probably my idea of hell but hopefully it will prove fruitful and I'll get all this stuff sorted out.

Miamia

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PM me if you want more details on what she is suggesting that I take.
I'd like to know. :)

I wonder why? Yea, all she told me was not to take it! :)

It interferes with the absorption ... and as much as Mepron costs, you want to get your money's worth!

I saw my brother today and we had a great talk! We cleared up some things and I feel really good about his progress and willingness to talk to me. He said in a family therapy thing in front of a ton of people that he wanted to get close to his "little sister." It was really sweet. :wub::)

very nice!

So today i will probably spend the whole day on the phone which is probably my idea of hell
Mine, too. I hate the phone.

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What kind of vit C and Mag do you all take to keep "things moving?" Maybe this is what I need. And what brands.

Thanks!

April

I take Thorne buffered C powder that has magnesium in it. Currently I take a rounded scoop in the mornhing, and then two at night. I was down to two a day then the constipation got worse again.

everyone...jet lag woes, I'm up in the middle of the night. But I caught up reading anyway. Glad for the good news for several people.

Sherry

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Sherry, they say one day per hour of time change .... it's pretty much right on the money for me and jet lag ... you probably already knew that. Just try to get as much rest as you can!

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Do you all find that your friends don't quite understand your situations?

Well, I don't think they truly understand, but they also don't try to tell me what I should do to fix it (well, not seriously anyway, I've gotten the "you need to eat a ton of chocolate" thing, but that was in a joking manner, not seriously, lol). I think I am one of the truly fortunate people in regards to friends and family. My friends are pretty protective of me. When we go out they are the ones that grill the wait staff and make sure they understand I can't have whatever. I don't think they know all the whys of what's going on with me, but they just know I was really sick for almost 5 years and now I'm not, so they are very protective.

My family doesn't truly understand it all either, but almost all of them are suffering with ongoing whatever, so they don't question or try to tell me what they think I should do. It's very nice really.

So, has LED made any of you fatigued?

I haven't done LED yet, but I was talking to Scott about it a couple of months ago and I think he said in the beginning it made him tired--but it was only like the first session or two if I recall correctly. I think Rachel's first session or two did also, if I'm not totally mixing that up, lol.

Good appointment with Dr. E, lasted 4 hours! No LED today.

Oh Sherry, I definitely want to hear more. Do you have my email address?

I saw my brother today and we had a great talk! We cleared up some things and I feel really good about his progress and willingness to talk to me. He said in a family therapy thing in front of a ton of people that he wanted to get close to his "little sister." It was really sweet. :wub::) I am going to try not taking anything for sleep tonight...we'll see how it goes. ;)

I'm so happy for you!!! Sounds like a GREAT visit! Let us know how the no-sleep aid things went. I took my melatonin last night, but I'm considering NOT taking it tonight...I may try every other night and see what happens.

So today i will probably spend the whole day on the phone which is probably my idea of hell but hopefully it will prove fruitful and I'll get all this stuff sorted out.

You and me both!! :lol: I HATE the phone, lol.

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Thanks, Donna and Andrea for the comments on LED. My laser is similar, but I only have four vials covering all the toxins! So, all the metals/metal salts get done in one shot! I guess I need to detox more with that one!

When I did the drugs vial a week or so ago (twice), I had no reaction at all. Strange, since I've been on meds for a year! Maybe I'm just detoxing the meds pretty well.

I don't have ART/ASYRIA or anything to tell me which vials to do, but it doesn't cost me anything but lost time to do one I don't need. ;0

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Sherry, sounds like a very good appt. Thanks for the update.

Miamia, sounds like you had a good appt with your doc as well and that a good plan has been put into place :)

Good news Kass about you and your brother!

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Oh, I brought in a small sample of the water I drink at home...and my body doesn't like it. She is going to try to figure out what is in it that is a problem.

That doesn't sound good. I'll be curious as to what she comes up with.

I saw my brother today and we had a great talk!

That is great! :D How'd the no ambien go?

Okay overall that was the appt. I felt it was a pretty good one. So today i will probably spend the whole day on the phone which is probably my idea of hell but hopefully it will prove fruitful and I'll get all this stuff sorted out.

I don't mind the phone for fun calls, but I'm in there with the rest of you on having to make a lot of hassling calls.....insurance! :angry:

Sounds like a productive appointment though Mia. :)

Carla,

I don't think all the LED's made the children fatigued and there were times when they were fine by the time they got home. So, yes, I do think if you're burdened by something it's going to make more of a difference in the level of fatigue.

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Carla,

Is the machine you have to detox or kill bugs? Is it like a rife machine?

I can't find any LED or ART near me.

And the doc I went to see recently has a UV machine. Its a machine that takes blood out, runs it through a uv light to kill bugs, then puts it back in you. I don't know if I am up for that! Sounds invasive to me! Anyone else heard of that kind of machine?

April

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April, mine is a laser like LED. LED is the same philosophy, but probably more sophisticated .... from what I've read, it's done essentially the same way, but with my laser, I only have four detox vials that are used after you've "balance" yourself with the laser for a few weeks.

Here's the website. http://nurseandi.com/greenlaser.html

I don't know how much it's helping me .... it has helped my parakeet who has liver disease, lol. But I don't think there's any way to really tell what's helping and what's not. But I can say I was tired after I treated for metals, which surprised me as my metals are low since I've already chelated for several months. I guess it's reaching them at a different level?

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Everyone,

So much for no ambien. :lol: After laying in bed for about an hour I decided I didn't want to take it too late, so I took it! LOL! I just don't want to be hooked on sleep aids for the rest of my life, especially since I'm so young! ;) But, sleep was never a problem, I think it's just because I don't have enough energy to get really tired, if that makes any sense. :wacko:

Thanks for your nice comments on my brother. :) Did I tell you guys my dad and stepmom are coming out from NZ on Saturday....that should be interesting. ;)

Mia,

I hope all these tests you're going through give you some answers. I understand about the phone, I usually like it unless it's not productive when I call places....for example my STUPID insurance company! :angry::P

April,

I don't talk to a lot of my friends about a lot of the stuff I go through because it's really heavy for them, and me. It's almost like a burden to them, but keep in mind I'm 17, lol. That's why I love this board! :D It's really hard though...but my best friend listens to me rant about the medical system, doctors, etc. ALL THE TIME! She is amazing! I didn't think she would ever want to listen, but now she cares so much. :wub:

Keep in mind though, it took her about a year to finally come around...when we didn't know why I was so tired, before we knew I was really anemic. When we finally found out, she felt awful because she didn't believe me all the way. Now, when I say I'm tired, she totally is nice about it.

Most of my friends actually slowly are coming around in their own ways. Some would try my gluten-free food, one brought me skittles when I was in the ER, they all show their care in different ways. And some don't want to talk about it, so they really don't understand what's going on, but oh well! That's their loss, not mine. It is hard to deal with, but that's why I have made other areas of my life support groups, such as seeing a therapist because it gets to be really lonely sometimes, and she makes a huge difference. And ironically I don't talk about my illness a lot of times, because I have learned to accept it. It takes time, but eventually you won't be so upset about friends lack of understanding.

Carla,

Yea, I thought that's why I couldn't take COQ-10. Speaking of the cost of Mepron, hope that the stupid insurance company calls today! UGH! I called them 2x yesterday and the lady didn't call me back! She was supposed to call ME yesterday. :angry:

Sherry,

I'd love to hear about what she wanted you to take! :D Do you have my email?

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