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Rachel--24

Omg...i Might Be On To Something

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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

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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.

Julie,

I'm sorry that you're having to go through another attack right now! How frusterating! Hang in there and I hope that you can get to see your Dr. soon.

I'll be thinking of you. :wub:

Do you think the sulfa treatment triggered your outbreak? I think that as Sherry pointed out...it could be a clue as to what the origin of the outbreaks might be.

I've read alot about sulfa/sulfite sensitivity in relationship to angioedema. It seems like angioedema is a pretty common symptom. I saw that it was mentioned alot when I was reading through all the sulfite scientificness. It might be worth looking into....especially since you also have copper toxicity. High copper can trigger a sulfite sensitivity by causing a deficiency of molybdenum.

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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:

It is so important to our health to be able to be real with at least some people in our life. I don't think we should tell everyone--that's not having appropriate boundaries. But being able to tell at least some people and welcoming their support is important. Sometimes if we play the hero all the time, others don't realize we need a kind word or an affirmation.

Sherry

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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.

Hmm, thanks for this. Seems like I need to read it over and over--and still get confused.

:unsure:

So, if Dr. E. said there was no problem showing up in my pathways, I could still need to detox sulfa? I don't know why she decided not to do LED; is the LED more for sensitivities to things?

Sherry

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Finally slept slightly better last night...at least I got to sleep quicker...still woke up a lot more than normal, but getting to sleep quickly just seems to make it all right, lol.

Well folks, I am so discouraged :(

I'm so sorry my friend! Stupid outbreaks! :angry:

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. :(

Hope that does the trick.

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.

I have a bunion on my right foot. Visually, it doesn't look like it, but an xray confirmed it. My toe has REALLY been hurting a lot lately. It's hard to walk sometimes, so I decided to ask my doctor about whether she could tell if it was gout, bunion or arthritis. They did an xray and a blood test to check for gout...the xray showed a bunion.

I already wear good supportive shoes that are fairly wide and have good arch support (from my stint with plantar faciitis several years ago--since then I only wear good shoes except for a couple of hours on Sunday where I have worn dress shoes, lol), so I'm not sure what else can be done other than surgery. I'm not anxious for surgery but I want the pain to stop so I can walk normally and do my workouts. I've gained 15 pounds since August, and it's like a vicious cycle...the extra weight isn't helping the foot situation, and the foot situation isn't helping the weight situation because I can't exercise like I need and want to.

It is so important to our health to be able to be real with at least some people in our life. I don't think we should tell everyone--that's not having appropriate boundaries. But being able to tell at least some people and welcoming their support is important. Sometimes if we play the hero all the time, others don't realize we need a kind word or an affirmation.

Yeah, I rarely tell anyone the whole story, lol. I figure they wouldn't believe me anyway. :lol: I have two friends who know MOST of it, but still not all. You all here are probably the closest ones to hear the whole thing. :P Thanks for that! :D Having now met some of you in person, it makes it a little more "real" here. Thanks again! :wub:

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So, if Dr. E. said there was no problem showing up in my pathways, I could still need to detox sulfa? I don't know why she decided not to do LED; is the LED more for sensitivities to things?

Could be that she wanted to focus more on the infections at this point since they came up as the most problematic. It may be that you won't need any LED's but can do everything through supplementation/support.

Yeah, I rarely tell anyone the whole story, lol. I figure they wouldn't believe me anyway. :lol: I have two friends who know MOST of it, but still not all. You all here are probably the closest ones to hear the whole thing. :P Thanks for that! :D Having now met some of you in person, it makes it a little more "real" here. Thanks again! :wub:

I still want to meet you gals that are closer to me.....unless the ones that are further come over this away. Not that I have any money whatsoever to travel. Maybe someday......

If you come up here I'll still be your chauffer. :)

Yay on better sleep, although still quite interupted.

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Sorry you're feeling bad Julie. It sounds suspicious that the LED stirred up so much. You must be onto something. :)

My herx is still horrible. I skipped my morning meds .... and you guys know I almost never do that. I'm getting ready for some ecoffee (forgot to make it last night), then I'm taking an epsom salt bath. Last night I took Advil and Vicodin and it didn't touch the pain.

I'm thinking about getting a massage today .... there's a new place here that does an introductory massage for $39. Then, if you sign up for their monthly program, you get one a month for $49. Seems SO worth it!

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Sorry about the bad herx Carla. :(

The massage sounds good. :)

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I still want to meet you gals that are closer to me.....unless the ones that are further come over this away. Not that I have any money whatsoever to travel. Maybe someday......

If you come up here I'll still be your chauffer. :)

I'm still thinking about flying up there to see Dr. Amy... :P

I'm thinking about getting a massage today .... there's a new place here that does an introductory massage for $39. Then, if you sign up for their monthly program, you get one a month for $49. Seems SO worth it!

That's a great price! I pay $75 for 1 hour! It's so worth it even at that price, lol! I'm thinking I should skip tires on Saturday and go for a massage. At least if I don't feel well I could probably still make it to the massage, whereas if I don't feel well, it'd be hard to wait through tires. :P

Speaking of herxes...I've been having bad D the past 2 days...it might be part of a little herx...so far so good with the Tindamax.

Sorry you're having a tough time this time!

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I'm still thinking about flying up there to see Dr. Amy... :P

You're still welcome to stay here if you'd like. It may be easier to get in with her down there if you establish yourself as a patient up here. :D

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Yeah, I normally pay $75 (includes tip) for a massage. This is a new place, so they're trying to establish themselves. Plus, you pay the $49 per month whether you get a massage or not, so that's why it's good for them, too ... each additional massage is $39. Still sounds like a good deal.

I did the ecoffee, took and epsom salt bath, used glutathione cream, took Cowden detox herbs, and now I'm feeling MUCH better. I skipped morning meds. I think I'm going to go to the gym because exercise is good for detox, too. I feel much better, though a little tired from the bath. I don't think I'll need to splurge on the massage.

All the pain is in my left side, so I'd say that means this is a Lyme herx. We've only been using intracellular abx for months now, and I started on a cell wall deficient abx last week, so I'm blaming it on the zith. Really, other than pain, I don't feel bad.

A massage does sound better than tires .... BUT last time Adam put off getting tires, he got in a wreck on the freeway during a rainstorm. Don't risk it. He was just too busy and kept putting it off.

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Massage won out, lol! Just made the appointment. I'll call in a minute to see if the tire place is open on Monday...if so I'll make it for then. :P

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So, if Dr. E. said there was no problem showing up in my pathways, I could still need to detox sulfa? I don't know why she decided not to do LED; is the LED more for sensitivities to things?

Yes...you could still need to detox sulfa. I'm guessing that after so many years of abx you would probably benefit from sulfa detox.

LED is not for sensitivities. Its for detoxification of specific toxins present in the body. Mercury, other metals, Dioxin, PCB's, etc......a long long list of toxins that either show up in Asyra, muscle testing, ART...whatever method they use to test.

The LED will target a toxin and there will be rapid detox of that toxin in the first 24 hours. Following the treatment specific supplements are used to keep the process going. An LED treatment can start a cascade that goes on for months...the supplements are necessary to assist in the detoxification process.

I had 5 LED treatments. Sulfa was first and mercury was last. In between I had LED's for Candida, aspergillus, PCB's, Dioxin, 3 viruses, Lyme, Babesia, phenols and a few other things which I cant recall right now.

Personally, I think its kind of pointless to treat the bugs while major toxins are still in the body ....but thats the way this Dr. did it. Cowden does not treat bugs with LED because they come right back unless the body is detoxed of heavy metals and other toxins first.

I didnt feel any type of detox symptoms after the LED's for bugs...however I did feel very tired after the sulfa and mercury treatments. Since my LED treatments...Lyme and Babesia have never shown up in another ART session.....so maybe the treatments helped?? I'm not really sure. :unsure:

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Guest LittleMissAllergy

Hi everyone- im still herxing too :( I'm happy to hear that you are feeling better now Carla.

I think my thyroid is all out of whack, because the intense pressure in my jaw/neck is right where the thyroid is. It makes me feel like I'm going to pass out. The heart palpitations and dizziness and shortness of breath is terrible. So I called my LLMD and he agreed, he said that it could be my thyroid so he has me rubbing just a little bit of iodine tincture on my arm once a day. He says that he suspects my methylation/detox pathways are closed, despite the supplements im using to open them. I thought I'd bring this up because I noticed everyone mentioning pathways. He thinks that my herx is lasting so long and im so sick because we are trying to detox metals right now too, and instead they may just be moving around, making me feel sicker than I've ever felt in my life. Too bad I can't just tolerate DMPS/Chelation.

I assume that you all have metal issues as well..? I know I've heard you talk A LOT about Copper Rachel :)

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Carla,

I'm glad you're feeling better! I have been really slacking on the detox lately. Ever since I went on flagyl and can't take any tinctures, I haven't been keeping up. And, the energy it takes to do ecoffee is a lot! It's a vicious cycle...take the energy I don't have, but I might get more energy for doing it.

Sherry,

I know what you mean about telling some people. The hard part is, I'm so used to my mom complaining so much about her stuff that I don't want to sound like I'm complaining. <_< And a LOT has happened in the past year or two, so I am still in shock I think.

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I'm going to post exactly what needs to be run for a hematology work up for Sherry, but since people PM me a lot asking, I'm going to bookmark this page so I can give the link to people when they need it.

Hematology:

WBC

RBC

HGB

HCT

MCV

MCH

MCHC

RDW

MPV

Platelets

Granulocytes %

Granulocytes #

Lymphocytes %

Lymphocytes #

Monocytes %

Monocytes #

Manual Differential

Seg Neutrophils

Bands

Lymphocytes

Monocytes

Eosinophils

Basophils

Atypical Lymphs

Metamyelocytes

Myelocytes

Blasts

Special Order:

Folate

Vitamin B12

Ferritin

Iron Total

Iron Binding Capacity

% Saturation

The ones under special order are the most important along with the Hematology panel. The Dr has to locate the ones under special order on the requisite form, it usually doesn't have its own name.

Along with all that my Dr usually orders a chemisty panel which includes:

Chemistry:

SGOT (AST)

SGPT (ALT)

ALK Phosphatase

Total Bilirubin

Direct Bilirubin

Total Protein

Albumin

Sodium

Potassium

Chloride

CO2

Bun

Creatinine

Glucose

Calcium

Globulin

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I assume that you all have metal issues as well..? I know I've heard you talk A LOT about Copper Rachel :)

Not anymore. :) I still take Zeolite to keep it that way.

Carla,

I'm glad you're feeling better! I have been really slacking on the detox lately. Ever since I went on flagyl and can't take any tinctures, I haven't been keeping up. And, the energy it takes to do ecoffee is a lot! It's a vicious cycle...take the energy I don't have, but I might get more energy for doing it.

Thanks. I went out and played one game of racquetball with Morgan today ... she beat me for the first time, but I played a respectable game 15-13 was the final score. Then I lifted weights and went to the grocery. I'm not feeling great, that's for sure, but all the pain is gone. Obviously it's the meds causing it. <_<

Get to the detox Kassandra!!!! You can make the coffee way before, you don't have to wait till you're ready to do the ecoffee. At least go for a walk or something. :)

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Guest LittleMissAllergy

Carla- hmmm zeolite...never heard of it! I could ask my LLMD about it though. Glad to hear your metals are gone!! My LLMD is trying to do it through TMG, B12, B6 and IV glutathione. I dont think its working though. We just sent out a stool test to see. Then for some reason he wants us to send out a urine amino acid test.

Kassandra- I havent done my ecoffee either :( I tried last night and it DID take a lot of energy, and I didnt even end up successfully doing it because I couldnt get myself to insert it. I there was like an nenema hotline where you could call up a nurse to come over and do it for you. I'd call it ehotline. hehe. I do take epsom salt and baking soda detox baths, did you do one Kassandra?

Do those baths make toxins come out, or draw them out, or are they just relieving symptoms of detox...im hoping that it actually DETOXES me...

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Finally slept slightly better last night...at least I got to sleep quicker...still woke up a lot more than normal, but getting to sleep quickly just seems to make it all right, lol.

I'm so sorry my friend! Stupid outbreaks! :angry:

Hope that does the trick.

I have a bunion on my right foot. Visually, it doesn't look like it, but an xray confirmed it. My toe has REALLY been hurting a lot lately. It's hard to walk sometimes, so I decided to ask my doctor about whether she could tell if it was gout, bunion or arthritis. They did an xray and a blood test to check for gout...the xray showed a bunion.

I already wear good supportive shoes that are fairly wide and have good arch support (from my stint with plantar faciitis several years ago--since then I only wear good shoes except for a couple of hours on Sunday where I have worn dress shoes, lol), so I'm not sure what else can be done other than surgery. I'm not anxious for surgery but I want the pain to stop so I can walk normally and do my workouts. I've gained 15 pounds since August, and it's like a vicious cycle...the extra weight isn't helping the foot situation, and the foot situation isn't helping the weight situation because I can't exercise like I need and want to.

Yeah, I rarely tell anyone the whole story, lol. I figure they wouldn't believe me anyway. :lol: I have two friends who know MOST of it, but still not all. You all here are probably the closest ones to hear the whole thing. :P Thanks for that! :D Having now met some of you in person, it makes it a little more "real" here. Thanks again! :wub:

yeah my closest friends well one or two know most of the story but you guys here know more probably I usually omit things like info on colonics and enemas just becasue people are judgemental and don't always get it and I dont want to have to deal with explaining.

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Could be that she wanted to focus more on the infections at this point since they came up as the most problematic. It may be that you won't need any LED's but can do everything through supplementation/support.

I still want to meet you gals that are closer to me.....unless the ones that are further come over this away. Not that I have any money whatsoever to travel. Maybe someday......

If you come up here I'll still be your chauffer. :)

Yay on better sleep, although still quite interupted.

God i would love to meet you girls in person!!!!!!!!!!!!!!

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Finally slept slightly better last night...at least I got to sleep quicker...still woke up a lot more than normal, but getting to sleep quickly just seems to make it all right, lol.

Good! I'm having a little trouble lately too. This week it is stress--back on Ambien. :(

I have a bunion on my right foot. Visually, it doesn't look like it, but an xray confirmed it. My toe has REALLY been hurting a lot lately. It's hard to walk sometimes, so I decided to ask my doctor about whether she could tell if it was gout, bunion or arthritis. They did an xray and a blood test to check for gout...the xray showed a bunion.

I already wear good supportive shoes that are fairly wide and have good arch support (from my stint with plantar faciitis several years ago--since then I only wear good shoes except for a couple of hours on Sunday where I have worn dress shoes, lol), so I'm not sure what else can be done other than surgery. I'm not anxious for surgery but I want the pain to stop so I can walk normally and do my workouts. I've gained 15 pounds since August, and it's like a vicious cycle...the extra weight isn't helping the foot situation, and the foot situation isn't helping the weight situation because I can't exercise like I need and want to.

Yeah, I have some similar issues, with a bunion, but it hasn't been quite so painful except at times. I suspect but am not sure, this it is related to the systemic issues as it gets worse when the lyme is worse.

After my experience, I'd still suggest several opinions especially re: foot surgery. The man who just did my custom orthotics tho not a doctor, has worked with the medical school for many years in two departments, father is an orthopedic surgeon, and he is the trusted source of orthotics by this major athelete's doc I mentioned. Anyway, he was a great source of information!!! He told me 3/4 of foot surgeries are failures.

Yeah, I rarely tell anyone the whole story, lol. I figure they wouldn't believe me anyway. :lol: I have two friends who know MOST of it, but still not all. You all here are probably the closest ones to hear the whole thing. :P Thanks for that! :D Having now met some of you in person, it makes it a little more "real" here. Thanks again! :wub:

Yes, this is a special place for support, where we don't have to defend our choices or complaints, we aren't seen as "basket cases" and we can get ideas and help. Thanks again everyone! :wub:

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I'm still thinking about flying up there to see Dr. Amy... :P

Woohoo...how about this summer while I'm in the US? ;) You, Andrea and I could get together!! LOL

Sherry

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