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Rachel--24

Omg...i Might Be On To Something

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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.

Yeah, the traffic thing is the most worrisome to me...I'm SO NOT a happy-go-lucky, cheerful driver. :lol: :lol: :ph34r: None of those pleasant adjectives works for me! :lol:

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

I cut mine, but be very careful, lol. If you shave I wouldn't use any cream or anything that might stay on the hair. :P

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Donna,

I think either way it is not going to be fun lol. I have been cut down below before, dont ask. But if i shave I will have to do with no supplies and ill be scratching forever lol

I guess i better go figure this out, cause i want to overhight it and it has to be at the post office by noon and its almost 11:30 lol

paula

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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.

Oh, no, I don't use a tube!!! I use a tip that is only about three inches long! I've read about the tubes, they sound horrible!

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?

There would be NO POINT in going to a regular MD. I had everything you describe. I needed help walking. It does get better. Are you being treated for babs? It really sounds like a babs herx.

I had my wisdom teeth out when I was 20. I had a Lyme flare when I was 19, and it did not come back with wisdom teeth removal. Two were impacted. It's less risky to get them out sooner before the root develops.

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!

Wow, so soon!?

We're on about the same abx .... except I'm on Cedax and Mepron.

I've been thinking about you the past few days and wondering what happened to you. :) When's your next appt? I go up there July 14.

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.

Me, too.

Yeah, the traffic thing is the most worrisome to me...I'm SO NOT a happy-go-lucky, cheerful driver. :lol: :lol: :ph34r: None of those pleasant adjectives works for me! :lol:

I figure that bad drivers are God's way of pointing out to you which people need prayers. :D It saves on the frustration level when you say, "God, please bless that @$$." Okay, maybe I'm not that good at it ....

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Sherry,

I have been meaning to ask for weeks, what exactly do you do over in china. I have been so intrigued about this but always forget. I was just talking to a friend that wanted to adopt from china, and i remembered i wanted to know about what you did, and had to hurry back and here and type this before i forgot again lol.

Everyone,

I decided to cut and and cut and cut, if there is not enough this time then i dont know what to do lol

paula

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Oh, no, I don't use a tube!!! I use a tip that is only about three inches long! I've read about the tubes, they sound horrible!

There would be NO POINT in going to a regular MD. I had everything you describe. I needed help walking. It does get better. Are you being treated for babs? It really sounds like a babs herx.

I had my wisdom teeth out when I was 20. I had a Lyme flare when I was 19, and it did not come back with wisdom teeth removal. Two were impacted. It's less risky to get them out sooner before the root develops.

Carla, you made me feel better :) I think sometimes all I need to hear is that what I'm going through is normal, and that I'll live. I haven't been to a regular MD in two years, but i DID go to the ER a couple weeks ago before I was diagnosed with lyme and they did an EKG, a rectal exam and a little bloodwork and said I just had "a bug". Boy were they right...bet they didn't know though what KIND of bug! Well, of course they didnt know....

And yes, I have no official diagnosis for babesia but my LLMD really thinks I have it.

Hmm. My wisdom teeth are coming in sideways. Little impacted looking. I obviously cant get them out now because i cant even stand, but hopefully sometime soon.

Ugh the pressure in the back of my head and jaw is so bad...I feel like Im going to pass out...so I better go. But thanks again everyone.

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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,

The purpose of the LED for sulfa is to detox sulfa residuals from the body. Sulfa is not the same as sulfur. Sulfa residuals are chemicals that have accumulated in tissue from antibiotics and other sources.

Sulfur is essential for health....chemical sulfates such as sodium lauryl sulfate are not.

Those are the ones that can interfere with normal sulfur metabolism.

Dr. Cowden recommends that the LED for sulfa be done first....before all other LED's. I dont know of anyone who has had LED treatments without having had the sulfa treatment first.

Sulfa in the body can make it more difficult to detox metals and other toxins.....this is why they detox the sulfa first.

Pretty much everyone gets the sulfa treatment and it doesnt mean that there is a problem with the sulfation pathway (as far as I know).

Deficiencies in pathway function are identified and treated by other means. Asyra may be able to pinpoint some problems but I dont believe that an LED treatment can correct biochemical abnormalities....in most cases I think more things would need to be addressed.

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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.

I haven't had any treatment for sulfa detox whatever, lol. I'm on a sulfur free diet, but not being treated for anything right now as far as food goes.

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!

I'm supposed to have my wisdom teeth out, but my LLMD almost killed me when I asked him...he said NO WAY!!! :lol: When they started to grow in a few months ago, it was SO painful! I can totally relate to that...doesn't make herxing any easier. I will have to wait until my "lyme load" is down.

Nyxie,

What IV med are you starting on? Are you getting a PICC or a port? I'm sorry you have to start on IV, but I'm really hopeful that it will help you! :)

Everyone,

I started Lyrica last night, and woah...just woke up. It's noon here. I slept 12 hours. I only took 50 mg, instead of the 100 mg Dr H wants me to take 3x/day! I think I'm going to be good for nothing for a little while. <_<

I think I'm in my 2 week herx cycle because last night I had a strange emotional break down. Someone who I really look up to said "you have a lot going on" and I almost died. It was so reassuring to hear that from someone else, because I just feel like this constant craziness is my life!

And I have a lot of other stuff going on with family and school so it was really amazing to hear that from somebody else. Then I broke down in my car. :( It was like I finally talked to someone who cares about what is going on and doesn't need me to be strong around her. I'm so used to pretending everything is okay (I've talked about this before) but with some people, I need to NOT do that.

So today I have a bit of an emotional hangover, LOL! :lol:

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I'm a clean freak ... of course, Lyme has made it so I'm not nearly so bad .... but, I don't like lying down on the bathroom floor when it has hair all over it ... your floor might not be as bad as mine since you don't share your bathroom with a man! :lol: I then use a towel on the clean floor for comfort. :)

And, you don't have to clean it afterward .... it's just not messy like that. :P And when you're cleaning it daily, it's never a big chore anyway.

Okay, herx kicked in. God must have wanted me to play at the funeral this morning because I took two Advil with my thyroid meds, and felt FINE. Last night I started having neck/shoulder/upper back pain. This morning it hurt, so I took the Advil. As soon as I got back from the funeral, I lied down on the bed and haven't been able to hardly more. I took a Vicodin I've been saving for a time like this .... it's barely making a dent in the pain. :(

I was feeling so much better on the new meds. :) This is my "day four flare" but it's day five .... my monthly flare is due about the 30th. After that, I'm planning on being able to play racquetball again. B)

I've done enemas before but I had taken a break from them becasue I was not feeling good after them any more I was actually feeling bad. But I ahv ebeen thinking about reintroducing them. I guess I just wanted to hear how long the take the more "normal" person. They take me a while sometimes thats why.

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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.

Kassandra-

are you still going to colon therapy?

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I figure that bad drivers are God's way of pointing out to you which people need prayers. :D It saves on the frustration level when you say, "God, please bless that @$$." Okay, maybe I'm not that good at it ....

I've tried that for a while...but I'm probably one of those drivers that needs the prayer. :lol::P:ph34r:

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Kassandra-

are you still going to colon therapy?

I keep forgetting to call the lady Dr H suggested to me. I haven't had another colonic since that first horrible experience. I must admit, I'm not surprised I'm forgetting...don't want to go have another bad experience, LOL! :P

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

Took a break for awhile. Decided to give others the benefit of my rant/whine sessions. :D

Spent the last week selling at a flea market. Don't know how I did it, but I did it. :P

Hope that's not something serious.

Thanks. I'm having funky premature heartbeats. Funny thing is they're regular - every third one. While PACs usually aren't anything to worry about in a healthy person, I'm not sure what it means for a lymie.

Wow, so soon!?

We're on about the same abx .... except I'm on Cedax and Mepron.

I've been thinking about you the past few days and wondering what happened to you. :) When's your next appt? I go up there July 14.

Yeah. L said she's concerned about my brain stuff. That, and they found lesions on my MRI. There's also the issue of insurance. Apparently, they tend to be more willing to pay for IV abx when they're rx'd closer to the original dx date.

My next appt is with L on June 19th. Then I have one with Dr H on July 23rd.

Nyxie,

What IV med are you starting on? Are you getting a PICC or a port? I'm sorry you have to start on IV, but I'm really hopeful that it will help you! :)

L wants to start me on IV Rocephin. Looking at a PICC line right now. Trying to figure out how I'm going to manage the 2-week camping trip with that thing in me. :huh:

Thanks! Hope they help you too! :)

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L wants to start me on IV Rocephin. Looking at a PICC line right now. Trying to figure out how I'm going to manage the 2-week camping trip with that thing in me. :huh:

Thanks! Hope they help you too! :)

I would definitely ask "L" about PICC's and camping! I don't think I would have been comfortable camping with a PICC line. Well, I KNOW I wouldn't be comfortable. I'm going to Lake Tahoe in July, and I'm freaked out about not being in my house with all my stuff. Although I will have a port, so it's a little different than a PICC, and easier to maintain.

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Well folks, I am so discouraged :(

The LED treatment for the sulpha went ok at first, just felt extremely tired in the afternoon and next morning, then I started to have an angioedema outbreak and now it's full blown all over my body.

I can't seem to get anywhere with anything. I'm going to have to travel out of state now to see my Dr and go back to the drawing board.

I want to respond to the latest posts, but am typing with my only finger that isn't broken out and it's taking me forever. I will return when my breakout is better.

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Well folks, I am so discouraged :(

The LED treatment for the sulpha went ok at first, just felt extremely tired in the afternoon and next morning, then I started to have an angioedema outbreak and now it's full blown all over my body.

I can't seem to get anywhere with anything. I'm going to have to travel out of state now to see my Dr and go back to the drawing board.

I want to respond to the latest posts, but am typing with my only finger that isn't broken out and it's taking me forever. I will return when my breakout is better.

Julie,

I'm so sorry to hear this :( I hear the frustration and I feel so badly for you.

I hope your breakout is over very soon :)

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Well folks, I am so discouraged :(

The LED treatment for the sulpha went ok at first, just felt extremely tired in the afternoon and next morning, then I started to have an angioedema outbreak and now it's full blown all over my body.

I can't seem to get anywhere with anything. I'm going to have to travel out of state now to see my Dr and go back to the drawing board.

I want to respond to the latest posts, but am typing with my only finger that isn't broken out and it's taking me forever. I will return when my breakout is better.

I'm so sorry Julie. :(

I'll be thinking of you.

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Im so sorry julie, I hope you can make it out of state to see your dr and figure out what to do. So since you had an attack, are you able to go back to regular eating.

paula

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Julie,

I'm so sorry. :( I hope it goes away soon. :wub: :wub:

Nyxie! :D :D :wub: Great to see you around! Sorry about the IVs, though.

Everyone,

I called the LLMD yesterday and he wants me off the sucralfate and when I start the supplement to raise my seratonin levels he wants me off the tramadol and to take Tylenol instead (risk of seratonin syndrome with the tramadol and I'm allergic to NSAIDs). I'm not happy about this to say the least, but the only other option would be narcotics, and none of us are willing to do that. :(

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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.

No she said she wasn't going to do any LED treatment on me at this point, but I am not sure why. The ASYRA didn't bring up much of anything which surprised her, maybe that is why? Seemed like the infections were the major things.

Sherry

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

Remind me about what is happening with your foot? Just wanted to mention that I went to two different podiatrists for several visits, they ordered orthotics, one gave me shots :huh: . Both were bringing up surgery.

Last winter I finally went to an orthopedic surgeon specializing in the foot, who also treats the top athletes in our area. He said no surgery--but when he was younger he would have done surgery more readily. He sent me to a person who makes the orthotics himself--and these are much much better! This guy measured, did the molds, made the orthotic, and spent two separate times fitting and changing them with me trying them on. He kept asking where there was any discomfort, etc., and kept changing them until they worked. Huge difference from what the podiatrists did.

I had no idea there would be such a difference between various foot doctors!

Sherry

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Sherry,

I have been meaning to ask for weeks, what exactly do you do over in china. I have been so intrigued about this but always forget. I was just talking to a friend that wanted to adopt from china, and i remembered i wanted to know about what you did, and had to hurry back and here and type this before i forgot again lol.

Everyone,

I decided to cut and and cut and cut, if there is not enough this time then i dont know what to do lol

paula

Paula, I'll PM you.

Sherry

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I've done enemas before but I had taken a break from them becasue I was not feeling good after them any more I was actually feeling bad. But I ahv ebeen thinking about reintroducing them. I guess I just wanted to hear how long the take the more "normal" person. They take me a while sometimes thats why.

It took me a lot longer at first than it does now, it was weird and awkward at first.

Sherry

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Well folks, I am so discouraged :(

The LED treatment for the sulpha went ok at first, just felt extremely tired in the afternoon and next morning, then I started to have an angioedema outbreak and now it's full blown all over my body.

I can't seem to get anywhere with anything. I'm going to have to travel out of state now to see my Dr and go back to the drawing board.

I want to respond to the latest posts, but am typing with my only finger that isn't broken out and it's taking me forever. I will return when my breakout is better.

Julie, I am so sorry to hear this news. Could this be a clue? Between the sulpha treatment and the change in diet? I will be thinking of you and hoping it will resolve quickly.

Sherry

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Well folks, I am so discouraged :(

The LED treatment for the sulpha went ok at first, just felt extremely tired in the afternoon and next morning, then I started to have an angioedema outbreak and now it's full blown all over my body.

I can't seem to get anywhere with anything. I'm going to have to travel out of state now to see my Dr and go back to the drawing board.

I want to respond to the latest posts, but am typing with my only finger that isn't broken out and it's taking me forever. I will return when my breakout is better.

Oh no! UGH! So frustrating! I hope you feel well enough to go see the dr.

April

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Well folks, I am so discouraged :(

:( So sorry Julie

Have noticed you've been AWOL from Sillyville. Rarely a good sign.

Hope you can get back to making progress soon, one way or another. :)

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