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Rachel--24

Omg...i Might Be On To Something

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Julie,

Can you tell us what foods you're reacting to? What are your red foods? I am supposed to go have my food test done, but I know once I get the results back, I will have to cut out more food, so I keep avoiding it. :lol::ph34r:

Mia,

I haven't done a coffee enema lately...too much back pain to be able to lay on the floor and do one. I just got my Lyrica approved from insurance, so hopefully that will help with the pain. And then I'll be able to do ecoffee again. :rolleyes:

Carla,

I'm sorry you're in so much pain. :( No fun at all. I have been having lots of pain lately too. It sucks! Although, like I said to Mia, Lyrica just got approved so hopefully that will help. Although the prescriptions is for 100mg pills and it says to take 3x/day, but when I used to take it before, I only took 50 mg at night! :o So, I will have to work up VERY slowly.

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can i just ask you how long does the whole enema procedure usually take you

Yep, 30 min to an hour. I usually split the coffee into two times, and hold. Seems like the second time helps because the first time clears things somewhat.

Sherry

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:lol: Another good reason no ecoffee for me, lol. If I had to clean the bathroom floor FIRST, well, let's just say that's not going to happen. :lol: (Besides, couldn't lay down on the floor if I wanted to--it's not big enough. :P

Ah Donna, not a problem, LOL! You can hang in on a doorknob near the bathroom since you live alone, no worries! Hang it on a towel rack, a coat hanger attached to a door, or a string attached to something higher. My hubby carries a cord when we travel, for a clothesline or whatever he needs. He fixes it so I can hang my bed in a hotel room....there are endless possibilities. Never fear, ecoffe is here!

Sherry

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OMG

This is insanely ironic.

Yes, always ask here about anything. I've been doing ecoffee (we coined that term on this thread....) since I was diagnosed with lyme in 2000. Mainly because it is the one thing that made such a difference.

The way I do it is almost exactly how Carla described. Just a few little differences:

-I boil the coffee in a pot of water on the stove for 10 minutes the night before, then heat it up in the morning. I pour it through a small seive into a quart glass pitcher, then fill my enema bag. (In a pinch when I am traveling I do it right into the bag).

-I am using an organic blend of coffee developed just for ecoffee (because in ART testing I tested poorly for other coffees I tried)

-I divide my coffee in half and do two times, 10-15 minutes each.

Tips:

-I buy a fountain enema bag, which is easier to use and rinse as you just pour it into the open top.

-The "accidents" I have had are always due to the connections on the bag coming loose. Some cheaper bags are worse. Just check these connections regularly. I also once had a plastic hook (that you hang the bag from) break and the bag fall down. I replaced it with a metal one!!

-keep some TP in reach. If you have trouble holding a little wad in place when you go from laying down to the toilet can keep the messiness down if you know what I mean.

-I rinse the bag and tube well every day. Occasionally I soak it in a pail with a little bleach, then rinse it very thoroughly. Depending on your water you might get a little buildup in the tube over time (if you see little flecks coming through when you rinse). Rinsing many times while "milking" the tube seems to work to loosen the buildup inside the tube. I don't seem to get this at all now using the green coffee.

Sherry

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Never fear, ecoffe is here!

:lol::lol: Yeah Donna....where there's a will there's a way!!

ummm...oh yeah....I guess in your case the *will* isn't quite there yet. :P

Dont worry though....not all ecoffee-er's clean the bathroom first. ;) I just hang it from whatever and thats about it. It feels like a "task" to me anyway.... I definately wouldnt wanna add to it by first cleaning the bathroom each time. :blink:

I havent done one in months anyway...I think my ecoffee days are over. :)

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The first phase has been the hardest, but I have one more day and then I am on to phase 2.

I also had and ASYRA and LED treatment done yesterday. We cleared sulpher, which my practitioner thinks that is going to make a significant difference for me.

Julie, exciting stuff. :)

Cant wait to hear how the food phases go....hopefully you notice some positive results by rotating the foods.

My LED for sulfa was the one that wiped me out the most. Sulfa and mercury were my biggest.....didnt really feel anything after my other LED treatments.

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Oh, come one, I don't clean the whole bathroom, I just wipe the hair off the floor!!!! :lol: :lol: Obviously, I lie down on the floor for mine. :D

I use RO water, so have never had that problem you mention with build up, Sherry. Maybe it has to do with hard water. Interesting that you don't get it with the green coffee.

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Carla, I am not using R/O water too, since I got my unit. But yeah, it could have to do with the water.

Julie, I am really curious about the sulfur pathways and food intolerances. I did not test with ASYRA of having any problems with sulfur. But some things are suspicious and others don't fit that.

But now you, Kassandra, Donna, Rachel (others?) have had that treatment. I wish I could understand why some and not others.

Sherry

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But now you, Kassandra, Donna, Rachel (others?) have had that treatment. I wish I could understand why some and not others.

Didn't you have any LED's done when you were here? I know Dr E always does the sulfa group first as that is what Dr. Cowden recommends, even if it doesn't come up on the first ASYRA run. All the children had that one done first but T was the only one who had any problems afterwards. It wiped her out. Mitch and I haven't had any LED's yet and won't be able to this year as I've got to get my teeth done.

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Julie,

Congrats on startign phase 2. I have been wondering were you have been lol.

I still havent got my results. Im thinking maybe they meant 7-10 business days lol

paula

who is very red and sunburnt today lol

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Never fear, ecoffe is here!

No, never! :lol: :lol:

I havent done one in months anyway...I think my ecoffee days are over. :)

See, that's good enough for me! :P

But now you, Kassandra, Donna, Rachel (others?) have had that treatment. I wish I could understand why some and not others.

Mine wasn't by LED, but yeah, mine was cleared with BioSET. The pathway has remained clear too...she retests me every once in a while.

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Grrrr, ANOTHER sleepless night. It's got to be one of the two parasite things, lol. Course I'm also taking a couple of new neurotransmitter supplements, but the new ones I'm taking are supposed to calm me, lol. I guess I'll know for sure in a couple of weeks when I stop taking the antibiotic/antifungal stuff.

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Guest LittleMissAllergy

Thanks for all the tips on the "ecoffee" you guys :) (love the name.)

Seems like we've got everything down except actually getting the tube in. We've got to figure out human anatomy to figure out what we're doing wrong.

Hopefully when we figure this out, it'll help. I feel sicker than I've ever felt in my life. But that's normal for the first couple of weeks on Biaxin (my first antibiotic), right? I've only been on it like 11 days and I can't breathe...the air hunger is SO bad...my heart races...I get this dizzy feeling and horrible weird pressure in my jaw and the back of my head and I feel like I'm going to pass out. I can't walk much :( Is this normal or do I need to go back to a regular MD and start from square one? It's so hard not to freak out and feel like you're TOO sick...I've never had all of THESE symptoms before.

You know what's not making the pressure and woozy feeling better? The fact that my wisdom teeth are coming in, looking a teeny bit impacted. I don't think I could survive getting them out though now. It wouldn't be safe. Have you all had yours out?

I hope you all are feeling well today!

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Guest LittleMissAllergy

P.S.

I'm sorry about your sleepless nights Donna, that's frustrating :( I hope you get some rest soon!

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Hopefully when we figure this out, it'll help. I feel sicker than I've ever felt in my life. But that's normal for the first couple of weeks on Biaxin (my first antibiotic), right? I've only been on it like 11 days and I can't breathe...the air hunger is SO bad...my heart races...I get this dizzy feeling and horrible weird pressure in my jaw and the back of my head and I feel like I'm going to pass out. I can't walk much :( Is this normal or do I need to go back to a regular MD and start from square one? It's so hard not to freak out and feel like you're TOO sick...I've never had all of THESE symptoms before.

Well, I've not been on antibiotics for Lyme, but I can say that in the past, using antibiotics for other things, sometimes I felt pretty bad on them. I did okay on Biaxin, but was only on it for 14 days. Judging from what others here have posted, yeah, it can be like what you've described.

You know what's not making the pressure and woozy feeling better? The fact that my wisdom teeth are coming in, looking a teeny bit impacted. I don't think I could survive getting them out though now. It wouldn't be safe. Have you all had yours out?

I had my wisdom teeth out when I was a teenager, so wasn't sick back then. I'm not sure I could do it now, lol.

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P.S.

I'm sorry about your sleepless nights Donna, that's frustrating :( I hope you get some rest soon!

Thanks...yes, it hasn't been this bad in quite a few months, and when it was, it wasn't usually that I couldn't GET to sleep, so this is new for me, lol. Usually I fall asleep just fine, but wake up at 1:00, and when it was really bad, I just wouldn't fall back asleep at that point.

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Kass,

Looks like we're going to be joining the IV abx club together. Saw L at my Dr H's office yesterday and she wants me to start on them asap. Fun!

Maybe we can come up with a password and a funny handshake or somesuch. :D

-------------

In other news, finished the flea market. I felt better than I thought, but was still in pain and tired all the time. But I did it and that's the important thing.

L also wants me to get a holter monitor because of some arrythmia (sp?) she noticed during yesterday's appt. Finally, it happened when someone was there to listen! Pick up the monitor tomorrow.

Massive abx changes. She's starting me back on the Malarone, adding Probenecid, and changed the Cedax to Ceftin. Still on Zith and Plaquenil. This should be interesting.

That's all for now. Just wanted to update folks and let you know I'm still alive, kicking, and cranky. ;)

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Hey Nyxie! Glad to see you are still alive and cranky! :P Was wondering where you were!

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You know what's not making the pressure and woozy feeling better? The fact that my wisdom teeth are coming in, looking a teeny bit impacted. I don't think I could survive getting them out though now. It wouldn't be safe. Have you all had yours out?

My dentist doesn't agree with having them pulled. He would have to have a good reason to pull them and then he wouldn't pull any more than was necessary.

I don't know what constitutes normal lyme reactions and allergic type reactions so I can't help you there.

L also wants me to get a holter monitor because of some arrythmia (sp?) she noticed during yesterday's appt. Finally, it happened when someone was there to listen! Pick up the monitor tomorrow.

Hope that's not something serious.

Donna,

Sorry about the sleepless nights. :(

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Just made an appointment for next month to see the gastroenterologist for a followup to all the ampulla business, lol. It was a good day to make the appointment since I'm having pain in the upper abdominal area today...right below the left ribcage.

Also made an appointment with a podiatrist for the stupid foot.

AND, I'm changing my work hours starting next week. I'll be coming in a lot later which is good for days like today when I could probably use a little extra time in bed, but not so good for appointments and stuff. Dr. S should be happy though! He wanted me to start work much later than I do. So, instead of getting up at 4 a.m. and starting at 6:30, I can probably sleep until 5:30 or 6:00 even to be at work by 8:00. Yay. I'll absolutely HATE getting off at 4:00, but them's the price ya pay, lol. I think my boss would be agreeable to letting me cut my hours too, so first I'll see how this goes and if I just can't handle the late hour I'll see if I can cut my hours back a bit.

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I am so upset right now. I have been emailing with the hair people this morning, seeing when they would be in. I just got an email saying I did not send enough hair in, and i know i did, cause i put it in a tablespoon and it was over the amount. I just dyed my hair this weekend so i cant use the hair off my head.

paula

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OMGosh Paula, that is so frustrating!!!!!! I'd be upset too!

With my test they had a little "weigher" thingy...it was a piece of cardboard basically that was folded in such a way that when you put enough hair on it, it tipped to the side that the hair was placed on.

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Donna,

The new hours sound better to me since I absolutely HATE getting up early. I hope the end work time doesn't cause you a lot of problems....seems like there would be more traffic on the road at that hour.

Paula,

I'm sorry. :( They can't do anything?

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They told me that i had to wait 6 weeks for hair head or use pubic hair, and i really didnt want to do that cause it is not as accurate.

But i guess i have no other choice. Would it be best to shave off hair from below or cut it. So much for hiding my c=section scar lol

paula

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