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Omg...i Might Be On To Something

Rachel--24

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Green12 Enthusiast
Green12
Posted

Lori,

Any possibility you can find a dentist in your area that has knowledge about and lots of experience with safe amalgam removal??

Forgot to mention something random earlier, we talked about heartburn a while back (how so many here on the forum had developed it).

I started to get really bad heartburn within the last 5 years along with the progression of my angioedma condition and it got worse with time. I had it regularly, pretty severe with esophogial spasms.

Since I started taking the charcoal I haven't had one episode. :huh:

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AndreaB Contributor
AndreaB
Posted
I started to get really bad heartburn within the last 5 years along with the progression of my angioedma condition and it got worse with time. I had it regularly, pretty severe with esophogial spasms.

Since I started taking the charcoal I haven't had one episode. :huh:

Wow! :o So what do you make of that? Sounds like the charcoal likes you.......or you like it. :)

mftnchn Explorer
mftnchn
Posted

Hello, everyone. Trying to keep up reading along to some degree, I've just had too much going on to post.

Welcome Lori. You've gotten some good advice here. Just a couple of things to add: It will not really be possible to chelate effectively as long as you have dental amalgams. So I'd probably look at a plan to begin removing and replacing those before heavy chelation.

Meanwhile, along with chlorella which binds mercury really well, I'd suggest trying activated charcoal at bedtime or the middle of the night away from other things. It isn't terribly expensive and it will help bind the metals.

The fatigue is a hard one to trace because of so many possible causes. Food allergies can cause it too, so I'd keep working along with your nutritionist because you might just hit on something that helps.

You could try ecoffee and see if it helps. Recent posts here talked about why it helps and maybe that would be a clue to you if you responded.

I have some similarity to you, but I have also had joint and muscle pain, and have lyme disease. I have celiac, lyme, metal toxicity as my major issues, plus allergies.

Sherry

mftnchn Explorer
mftnchn
Posted

Quick update. I'm dealing with a lot of stress just from multiple demands. Meanwhile some further progress on testing and treatment:

Feeling a bit better, with a little bit of herx symptoms here and there. Had a huge hassle trying to get Zithromax or a generic that the pharmacy could (or would) confirm was gluten free. That whole situation had me hopping mad. My hubby says the US medicine is become like a third world country.

Anyway, my Vitamin D, 1, 25 Dihydroxy was 16 (Range 15-75). So also points to very low normal. Also my LLMD gave me another test kit today to do further stool malabsorption testing. He said the Enterolab is only testing fat, which is good so far as it goes. He wants to see the proteins, sugars, etc. So I sent that off today. I see him next week to review everything, that is an important appointment and my last with him before I leave for China. My last appointment with Dr. E is 3/12.

Off the Levaquin, I am sleeping better (first ambien free night last night), better BMs, less yucky feeling all the time, and no nausea. Had a couple of spells of significant pain since starting the zith, but don't last too long. The binders seem to help, so I think it is detox.

I ran out of the andrographis capsules over a week ago and am still waiting for delivery, hopefully tomorrow. When I get that in, I'll be on the full protocol Dr. E found tested well, and maybe I'll have even more herxing.

My LLMD also suggested I check to see if there is hyperbaric oxygen chamber treatments in China. One of his autism patients is Chinese, and apparently they were able to go back to China and get these done really cheaply.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

mftnchn Explorer
mftnchn
Posted

Got a busy weekend ahead. Our kids have planned an anniversary celebration for us on Sunday. It was going to be a surprise but that proved to difficult to plan. I'll likely have my son and family here for the weekend again too.

Also busy trying to help my daughter with wedding planning, as much as she is ready for and we can sandwich in before I leave. I am grieving not being able to be here for it all. It is something I knew for years would be likely but when I actually face it, I am feeling lots of feelings, believe me!

Seems like every day I have something health wise too. Today was an IV, tomorrow a mammogram, etc.

We're also still dealing daily with my husband's parents needs.

Then work is piling up because I am unable to attend to it.

Anyway, I am thinking of you all even if you don't see me much.

Sherry

LoriG Contributor
LoriG
Posted

Where do I get the provoked urine test? Do I have to order it from a doctor? Online? Thanks.

aprilh Apprentice
aprilh
Posted
My LLMD also suggested I check to see if there is hyperbaric oxygen chamber treatments in China. One of his autism patients is Chinese, and apparently they were able to go back to China and get these done really cheaply.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

Sherry,

The environmental medical doc (treats lyme) has this. They said it forces oxygen into your cells. But that is about all i know about it.

April

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aprilh Apprentice
aprilh
Posted
Where do I get the provoked urine test? Do I have to order it from a doctor? Online? Thanks.

An MD or ND would be able to order this for you. It would need to be an MD that recognizes heavy metals, because many of them don't. I other words, an MD that is not "mainstream".

Julie,

So glad the charcoal is helping! That is great! Do you think it will reduce the angioedema symptoms?

CarlaB Enthusiast
CarlaB
Posted

Julie, I'm glad the charcoal is helping.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

I've heard of it being used. Some LLMD's use it others don't. It helps some, it doesn't help others .... just like everything else. :D If it's cheap, it's certainly worth a try!

It is something I knew for years would be likely but when I actually face it, I am feeling lots of feelings, believe me!

I can't imagine. I don't think I could do it, Sherry. I think I could give a couple years to the work you do, but after that, I would have to come home.

I gave ten years to doing youth work before I got sick. I traveled, I oversaw a lot .... but I'm thinking that now it's a good time to move onto something else. I miss it, but I'm ready to move on to the next stage for me. :)

At some point, perhaps you will be ready for moving on to something different ..... in the meantime, do the best you can. You've been generous with your work and being so far away .....

mftnchn Explorer
mftnchn
Posted

Lori, you'll need to get it from an MD or someone who can give an IV medication probably. At least when I do the provoked urine, they give me an IV DMPS to "push" out the metals, then I collect for 6 hours afterward. They give me a collection kit and then I send it in by Fed Ex or whatever it says.

mftnchn Explorer
mftnchn
Posted

Thanks Carla. I think we've been given a gift of doing this work, and many times have been blessed so that it does not seem like a sacrifice. When I remember that, I know that it will all work out okay.

I think you are right though, when it is time to come home, we'll know it.

Sherry

CarlaB Enthusiast
CarlaB
Posted
Lori, you'll need to get it from an MD or someone who can give an IV medication probably. At least when I do the provoked urine, they give me an IV DMPS to "push" out the metals, then I collect for 6 hours afterward. They give me a collection kit and then I send it in by Fed Ex or whatever it says.

Mine was provoked by oral DMPS, so it can be done both ways. I also did a six hour collection.

confusedks Enthusiast
confusedks
Posted
My LLMD also suggested I check to see if there is hyperbaric oxygen chamber treatments in China. One of his autism patients is Chinese, and apparently they were able to go back to China and get these done really cheaply.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

Yea, I went to a Lyme Support group and the speaker talked about HBOT (Hyperbaric Oxygen Therapy). Since the spirochetes die when they hit oxygen, when you put oxygen into your cells/blood/body it in theory kills the spirochetes.

Some people have a lot of luck with it, some don't notice anything. They say you need to do 30-60 treatments. 5 days on, 2 days off. So, it can also be a time thing. If you can fit it into your schedule. The place here charges $150 per treatment. That adds up very quickly, lol. It is about an hour per treatment.

Green12 Enthusiast
Green12
Posted
Wow! :o So what do you make of that?

I don't exactly know Andrea :lol: I do agree though it seems to like me, or I like it :lol:

I think something can be said about the source of heartburn coming from toxins rather than what is typically thought, or something along those lines. Or possibly charcoal does a great dela more than bind toxins.

Quick update. I'm dealing with a lot of stress just from multiple demands. Meanwhile some further progress on testing and treatment:

My LLMD also suggested I check to see if there is hyperbaric oxygen chamber treatments in China. One of his autism patients is Chinese, and apparently they were able to go back to China and get these done really cheaply.

Anybody know anything about this for lyme? I think my LLMD wants to move to focus less on the "torpedo approach" he called it, and more on general healing because we have been at this so long.

Sherry

Sherry, good to hear an update.

Sorry about all the stress :( You are juggling a lot before you leave again, I am sure it feels like so many things to tackle and not enough time.

A Naturopath I used to see years ago wanted me to do the hyperbaric oxygen chamber treatments, but I never followed through with them.

Magic Johnson used one and credits the oxygen therapy as the cure for his HIV, or at least from keeping it in remission and not progressing into AIDS. I think the oxygen therapy increases the overall oxygenation of the body tissues, increasing blood flow to compromised tissues and organs. Infections also can't survive in a high oxygen environment so that is probably why it is recommended for your lyme.

Happy Anniversary, I hope you have a nice celebration with family and friends!

Julie,

So glad the charcoal is helping! That is great! Do you think it will reduce the angioedema symptoms?

Hi April,

I defenitely think it's made the difference with my heartburn, I am doing everything else the same so I can only deduce it's the charcoal.

I do think it's helped also with my angioedma, at least it's reduced the outbreaks severity. But I have also been doing some other things for that, calming the immune response and liver detox so I think everything together has made a dent.

CarlaB Enthusiast
CarlaB
Posted

Sherry, forgot to wish you a happy anniversary!

Well, I stopped using the Humaworm for a couple days to see if my feeling bad is from it or a babs herx. So far, no difference in how I feel, so it must be a babs herx.

I also justified stopping it because after about a week I saw nothing .... I drank some Mangosteen juice this morning ... it just did it's job, and I saw something. :ph34r: I think I need to be drinking it more because this worm had obviously died a while ago .... mostly digested ... gross.

Yea, I went to a Lyme Support group and the speaker talked about HBOT (Hyperbaric Oxygen Therapy). Since the spirochetes die when they hit oxygen, when you put oxygen into your cells/blood/body it in theory kills the spirochetes.

Some people have a lot of luck with it, some don't notice anything. They say you need to do 30-60 treatments. 5 days on, 2 days off. So, it can also be a time thing. If you can fit it into your schedule. The place here charges $150 per treatment. That adds up very quickly, lol. It is about an hour per treatment.

This is also why exercise is so beneficial. Dr. B says to go after a specific muscle group -- strength, then stretch ... to work out systematically.

Obviously cardio is of benefit, but when you feel bad it takes too much energy away from healing ..... I'm not doing cardio right now, which upsets me as I had finally worked up to where I was before I was sick. :angry: I'm thinking at this point it will be one full herx cycle before I have the chance of feeling better, so that will be two more weeks of this.

Green12 Enthusiast
Green12
Posted
Well, I stopped using the Humaworm for a couple days to see if my feeling bad is from it or a babs herx. So far, no difference in how I feel, so it must be a babs herx.

I also justified stopping it because after about a week I saw nothing .... I drank some Mangosteen juice this morning ... it just did it's job, and I saw something. :ph34r: I think I need to be drinking it more because this worm had obviously died a while ago .... mostly digested ... gross.

This is also why exercise is so beneficial. Dr. B says to go after a specific muscle group -- strength, then stretch ... to work out systematically.

Obviously cardio is of benefit, but when you feel bad it takes too much energy away from healing ..... I'm not doing cardio right now, which upsets me as I had finally worked up to where I was before I was sick. :angry: I'm thinking at this point it will be one full herx cycle before I have the chance of feeling better, so that will be two more weeks of this.

Hope this herx doesn't take you down too far Carla.

That Mangosteen juice sounds like powerful stuff :lol:

You bring up good points about exercise. I struggle with how to balance that, not having any energy most of the time but knowing I need to get the oxygen flowing.

I've lost a lot of ground this year as I got sicker. I think we have to just do what we can, get it in when we can, get back what we can, baby steps like with everything else that we are dealing with.

CarlaB Enthusiast
CarlaB
Posted
I think we have to just do what we can, get it in when we can, get back what we can, baby steps like with everything else that we are dealing with.

Exactly. There have been days at the gym that in the past I wouldn't have even considered exercise! I at least try to lift light weights and stretch if I feel bad. Then I go home and go back to bed. :lol:

aprilh Apprentice
aprilh
Posted

Mangosteen juice is good for constipation? Am I understanding that right?

CarlaB Enthusiast
CarlaB
Posted
Mangosteen juice is good for constipation? Am I understanding that right?

Uh, seems to get things moving for me. I don't know if that's its purpose, but that certainly is its effect!

mftnchn Explorer
mftnchn
Posted
Yea, I went to a Lyme Support group and the speaker talked about HBOT (Hyperbaric Oxygen Therapy). Since the spirochetes die when they hit oxygen, when you put oxygen into your cells/blood/body it in theory kills the spirochetes.

Some people have a lot of luck with it, some don't notice anything. They say you need to do 30-60 treatments. 5 days on, 2 days off. So, it can also be a time thing. If you can fit it into your schedule. The place here charges $150 per treatment. That adds up very quickly, lol. It is about an hour per treatment.

Wow, thanks for the specific info! My LLMD said these folks paid like $5 a session for the treatment, but probably that was an exaggeration. I am going to see what I can find out about it. That schedule would be rough to follow though, unless I just take 6 weeks to 3 months and stay in one place! Now wouldn't that be novel???

Sherry

mftnchn Explorer
mftnchn
Posted

Thanks for the well-wishes; its nice having our kids do something for us like this.

Julie, I am where you are with the exercise. I struggle with it. Once I feel a little better I just want to go about my day and get at my work. Just doing the daily routine is about what I can handle.

I am noticing now that though I am feeling better, late in the day I get the achiness in the back area. I wonder how much is due to just more moving around.

However, the increased oxygen to areas of the body and what that does completely makes sense.

Sherry

confusedks Enthusiast
confusedks
Posted
Mangosteen juice is good for constipation? Am I understanding that right?

It didn't do anything for me. Lol. Didn't notice I had taken it. ;)

Nyxie63 Apprentice
Nyxie63
Posted

Hmmm... I've see portable hyperbaric chambers. My Holistic MD's office has one.

Sherry, wonder if you can rent one?

Nyxie63 Apprentice
Nyxie63
Posted

Updatey stuff....

Had a day out yesterday. Got out of the house for a couple of hours. Had to run down to the ex-LLMD's office and pick up my records. There's a way to burn 3 hours.

Then I hit the local Trader Joe's. Not impressed at all. For some reason, I'd been expecting more of an interntional market kind of thing. They did have some good prices on raw nuts, so I picked up some of those. Was hoping for a good-sized asian food section.. but no. There's one not far from where I'm heading today, so might stop by there.

And I got my hair chopped off! Yes! Its really cute. Jin, think "the Major", but longer in front instead of bangs. Will have to get a pic done.

Came home and fell into a coma on the sofa until hubby got home. Oh yeah, and didn't get lost even once! Thought I was lost on the way down to the LLMDs but no. Found it.

Today, I'm taking a friend out for a birthday lunch (his). It's our annual sushi run. Taking a small bottle of Bragg's aminos with me. There's a wonderful sushi buffet down where he lives. All kinds of sushi (and they list all the ingredients on every dish), different sea veggie salads, sashimi, and a hot bar. Yum!

I've decided I don't like this allergy testing. As part of the first screening, they do a spot with Candida to test your immune response (everyone reacts or is supposed to. if you don't, then your immune response is compromised). I figured, ok maybe red bump. No. Painful itchy blisters that still haven't gone away yet. Bleah. Guess my immune response is working... maybe too well.

Oh! And I picked up a juicer last week. Finally! Its a monster. I think my fave combo so far has been kale/cucumber/celery. I really like the "green" taste. Its refreshing. Not exactly a smootie substitute, but good.

Next week is looming closer. Sort of excited but scared too.

AndreaB Contributor
AndreaB
Posted
Next week is looming closer. Sort of excited but scared too.

I can understand that. Is your appointment Tuesday?

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    • Dora77
      Ocd making gluten fears unmanageable. Need advice

      By Dora77 · Posted

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    • lmemsm
      beans in dessert recipes

      By lmemsm · Posted

      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      Gluten free/ non dairy , low calorie pudding

      By lmemsm · Posted

      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Finding gluten free ingredients

      By lmemsm · Posted

      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      Doctors and Celiac.com

      By chrish42 · Posted

      All I can say is this site is great!
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