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Rachel--24

Omg...i Might Be On To Something

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oh i know the bioset woman does, but i'm wondering if anybody knows how...what exactly do they do to help it, in a time where you're very toxic and sensitive? helping that i'm sure will help issues though which is good

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I don't know what all they do, I just know they helped clear Rachel's pathways. I forget whether Donna's pathways were blocked.

Rachel's were done with bioset, don't remember about anything supplement wise.

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She had to clear my pathways...they weren't totally blocked but they weren't good either.

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Hi Mia, looking forward to your update :)

Hope the MRI goes well.

rpm, typically with EAV when you can't detox then you support, support, support your organs/body systems until you can detox.

Carla, could you tell us more about the sauna turning lyme into cyst form, something you mentioned yesterday??? That sounded interesting, is it better to have it in cyst form? And why? That got my brain turning :lol:

Sherry, know you are busy just post when you are able.

Kass, I had all kinds of stomach issues with enemas. Not only bloating, but lots of pain throughout the day.

I have really broken out thev last few days. I think I am going to have to stop with the sauna :(:( Everything seems to be too much right now.

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Rpm,

I agree with Julie- have them test you to see what nutritional support would help and also see if maybe daily epsom baths might help. I would highly recommend Magnesium from some stuff I recently read. I'll have to dig up the information.

April

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I have really broken out thev last few days. I think I am going to have to stop with the sauna :(:( Everything seems to be too much right now.

Awww Julie, I'm sorry. :(

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I really need advice! I am going to that natural doc now to get the Myers Cocktail. As I'm not sure where to proceed from here as far as working with her, I asked her what she'd do for me that hasn't already been done. I've been trying to get well now for 2 years to no avail!! I'm pretty sure I'm dealing with: Celiac's, Hashimoto's, Adrenal Fatigue, Chronic Virus, possible food allergies, possible candida, possible mercury.

Well, she said we will start with the provoked urine test to see if it is mercury. Then she asked me if anyone has ever treated my gut? I said not really. I've been going around in circles with my hashimoto's and adrenal fatigue and now celiac's. Of course I'm not eating gluten, grains, or dairy and taking tons of probiotics. She said I could take all of the probiotics in the world, but if there are bad guys in there we need to address that w/ antimicrosomals/antifungals?! She said she'd recommend the Elisa food test to see how bad my gut is based on how many foods I'm reacting to, i.e. leaky gut. I asked about treating candida w/ mercury and that vicious cycle. She said you have to treat both because with mercury you won't ever get rid of candida. They do blood chelation there, but she said I'm too sick for that and there are other ways to chelate more gently. I told her how I'm on armour thyroid for my thyroid. She said sometimes people w/ autoimmune, that the body thinks armour is foreign and can cause more problems. She's not sure if that is what is going on with me & offered to talk to my MD about switching me over to something else. She said she'd definitely look at my immune system and gut. Possibly a stool test.

I really need to know what you all think if she sounds decent. I could end up spending a ton of money seeing her and am so sick to make clear decisions. What would you do? I had looked into Dr. Mercola but he's a fortune ($2700 just to go there first visit). I don't know where else to go. I do work with a nutritionist, too.

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Well I like what she said about the mercury/candida thing, so that is encouraging to me.

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Lori,

It sounds like she really knows what she is doing. I'd stick with her plan. Healing the gut sounds like a good idea, because it should not be a life long thing to have multiple food intolerances.

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Julie, no, the cyst form is not good either, but I know I have the cyst form and I am symptom-free of Lyme. We tried to go after it with Tindamax, but that was too harsh for me, so now we are getting it with grapefruit seed extract.

Abx and saunas will push the Lyme into the cyst form.

Lori, sounds good to me. I had a bacterial overgrowth of the intestines along with parasites, once treated my gut healed and my food intolerances went away.

I also used more gentle chelators, but I was toxic in lead, not mercury.

I think mercury, candida, and the leaky gut will all need to be treated regardless of whether or not something else is going on ... at least that was my experience.

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I think mercury, candida, and the leaky gut will all need to be treated regardless of whether or not something else is going on ... at least that was my experience.

I agree with this. If you have adrenal fatigue, dysbiosis, thyroid problems etc...those would likely be symptoms of an underlying problem. If you have chronic candida because of mercury the gut will not heal until mercury is addressed and no longer suppressing the immune system.

You might find improvement during candida treatments, diet, parasite treaments, etc....but if those problems persist while not on any type of treatment there is likely something else going on which is continuing to burden your immune system.

I think its a cgood sign that she recognizes you can go round and round with candida but not ever get rid of it if you have mercury toxicity. Some Dr.'s will just diagnose the candida and you can end up spending a fortune trying to treat that without ever having lasting improvement. I think its good that she isnt going that route with you. Chronic candida is a consequence of a suppressed immune system.

I think treating the gut is a priority....definately. However, I think the ELISA food test is expensive and not very useful....at least that was my experience.

If you're reacting to most foods you can assume that you have a leaky gut problem....regardless of what shows up on an ELISA test. Nothing showed up on my ELISA and yet I do have major gut issues.

There is a urine test specifically for diagnosing leaky gut...that might be a better way to test....but still I would save the money because if you find that you're reacting to alot of foods there is definately a problem. Having a positive test for leaky gut wont really change anything with regards to treatment IMO.

I think you would benefit more from tests that help to identify the causes of leaky gut...parasites, heavy metals, candida, etc. I think blood antibody tests are more useful for candida then stool tests...which can be unreliable. Parasites are very difficult to diagnose....maybe some type of alternative testing can help pinpoint infections.

If you have problems detoxing...your provoked urine challenge may not show significant levels of mercury....even if you're highly toxic. I would get a hair analysis as well so that you can see if your essential minerals are deranged. If they are that would point to mercury....even when you're not seeing it in the urine.

I would want to get the clearest picture possible since underlying issues such as heavy metals are hard to diagnose and yet if left unattented can make recovery extremely difficult...if not impossible.

You are already addressing celiac with the diet...if funds are limited I would first focus on the root problems and go from there. Its very likely that you do have parasites...especially with celiac and ongoing gut problems. One of my previous Dr.'s said he finds infections in every person who is gluten intolerant/celiac and does not heal from the diet alone.

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oh i know the bioset woman does, but i'm wondering if anybody knows how...what exactly do they do to help it, in a time where you're very toxic and sensitive? helping that i'm sure will help issues though which is good

The way to help your pathways is to identify where there is weakness and to support that. It might be by supporting methylation with B12, Folate, B6...or it might be something else that you need to support detox. Its highly individual.

My Bioset practitioner helped pathway function by testing everything needed for proper functioning of each pathway. Bioset indetifies things which the immune sysatem has become sensitive to....and when the immune system is in overdrive this can be almost anything...including things which we NEED in our bodies.

If the immune system is reacting to normal things that are part of the process of methylation or other things necessary for pathway function....then the pathway might become faulty. She treated me by identifying those things I was sensitive to and then desensitizing them. My chelation Dr. has said that when some of his patients are not able to excrete the metals...he sends them to the bioset practitioner...who treats the problem areas and then the chelation treatments are much more effective.

In my case the problems were mostly with my sulfation pathway...and even after being treated the problems would come back. I was treated for the same pathway I think about 3 times. They didnt know why the treatments kept reversing but had said that most likely something was overwhelming the pathway and causing it to become blocked again...which stressed out my immune system.

Now I'm focusing on the PST enzyme (I posted about it recently) as the cause for that...since this enzyme is needed for breaking down phenols (food chemicals) and I have major problems with phenols. I did test badly for all phenols in energetic testing but since I also reacted to just about everything I was tested for we didnt really focus on phenols or a cause for that problem specifically.

If the PST enzyme is deficient there will be problems with the sulfation pathway and detoxification will be significantly impaired.

I'm looking at that as my biggest obstacle to overcome right now. The cause of the deficiency is more than likely mercury since it ties up sulfates making them unavailable to the body. The PST enzyme requires sulfates to function.

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Julie, no, the cyst form is not good either, but I know I have the cyst form and I am symptom-free of Lyme. We tried to go after it with Tindamax, but that was too harsh for me, so now we are getting it with grapefruit seed extract.

Abx and saunas will push the Lyme into the cyst form.

Do you have a link where you found the sauna/lyme cyst info? I would like to read more scientificness.

Lori, I agree wth Rachel about the ELISA test, or any type of food allergy testing, it might be a good idea to put that money elsewhere.

Otherwise it sounds like she has agood plan of action.

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Wow, this is a long thread. Just wondering, did anybody get pancreatic insufficency in here at any point. Its a very common side effect of celiac but does not seem to be addressed on the board much, if my search is any indication. Unless the search feature is wonky, of course. Mercola is a pretty cool guy, do you get to see him for the $2700 or an associate?

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Well, called the holistic MD to see if she really thinks it's necessary that I continue with "Pincushion Mondays" aka allergy testing. Hopefully, she'll call me back before I have to go back in. If I'm going to react to everything I eat, what's the point of further testing?

Got a call from the GI yesterday. It's not my gallbladder. The Hida scan was "normal". Unfortunately, I wasn't home at the time so I couldn't ask what my ejection fraction was. He wants to see me in 2 weeks. Have no idea why.

And I started the doxy this morning. Any idea how soon I should start feeling anything if "something" is going to happen?

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Hi Itchygirl! Welcome! :D

Last time it was tested, my Lipase was really low. The other enzymes seemed to be ok tho. Don't know what to make of that or if that indicates pancreatic insufficiency.

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Thank you all for the help. I think I am going to go with her, but need to come armed w/ info.

Rachel, the problem is I don't know what foods I am or am not reacting to at all because I feel bad all day, every day. I don't notice anything different when I eat things. I really don't want to spend a ton of money on Elisa, but could I suggest we just treat my "gut" as if I am reacting to a lot of foods. She said using natural antifungals and antibacteria things. Yet it would be nice to know which foods to stay away from right now.

I think she seems to get the whole immune system and food connection, but I don't want to spend a fortune on useless tests. So...... what is the name of the most accurate blood test for candida? What test for parasites or bacterial infections? What would be the best type of chelation at this point if I have mercury? Definitely a hair analysis test too? Ugh! I am considering what she said about armour, too. I am getting worse and worse. Maybe because I'm so depressed, too. Thanks for all f the help everyone.

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Welcome, itchygirl. I never had that problem ....

Carla,

What brand are your multi vitamins? I think Dr H assumes I'm taking a multi, but he's wrong. :ph34r: And, do they have iron in them? Oh, and do you like them? LOL!

Mine are one my LLMD carries that he puts his name on. Yes I like them. :)

In the past I've really liked Source of Life products for multiple vitamins .... particularly this one http://www.sourceoflife.com/products/produ...amp;category=15

It does have barley leaves though.

Do you have a link where you found the sauna/lyme cyst info? I would like to read more scientificness.
Sorry, no I don't, it's something my LLMD told me. He mentioned that at some point we may revisit using Tindamax in conjuction with saunas .... take a sauna, then immediately take some Tindamax.

And I started the doxy this morning. Any idea how soon I should start feeling anything if "something" is going to happen?

It varies from person to person. I immediately saw improvement when I started supplementing .... I herxed at day 24. Some people herx within a short time (hours .... minutes).

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I don't know about the lipase levels, how is your fat digestion (fecal fat).

trypsinogen is what they usually test.

http://pediatrics.aappublications.org/cgi/...stract/80/6/924

http://www.ncbi.nlm.nih.gov/pubmed/7924748

http://www.blackwell-synergy.com/doi/abs/1...journalCode=apt

Low faecal elastase is common in patients with coeliac disease and chronic diarrhoea, suggesting exocrine pancreatic insufficiency. In this group of patients, pancreatic enzyme supplementation may provide symptomatic benefit.

I probably need to stick this topic somewhere else, but it seems to relate to ongoing symptoms. Sorry about the lymes :(

My mind is so far gone I'm not even sure how to post :D

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Itchy, we talk about just about all topics here, but I do think that your information would be of benefit to those on the rest of the board since it specifically relates to celiac disease. Because of the length of this thread, most don't even look here. ;)

Well, I'm feeling much better today ... Adam only needed me for two hours at the office, so I came home and kiltzed the bathroom (when I painted it originally I thought the paint would cover the wallpaper paste, but it didn't), I'll paint it tomorrow. I also repainted a little hallway, a wall in my room, and touched up the mud room and basement hallway .... so I've been busy! Now I'm vegging on the couch (dinner's in the oven)!

Remember the 27 picture frames I bought a while back? Well, the pictures have been in them for a few weeks now, but the Malarone messed up my plans with the herx it caused .... so now that the wall is painted in my bedroom, I can hang the pics!

I hope everyone else is doing well. Kassandra, I hope you get dinner tonight. ;)

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Sorry, another question: should I continue the Myer's cocktail? My nutritionist highly recommends it.

Couldn't I just assume I have parasites, infections etc. and do humaworm?

I want to make it clear that I don't know if I am reacting to foods at all or all. Why I'm not getting better being gluten and dairy free is a mystery. Is it my hashimoto's?

This ND says we have to address the immune system. What is the name of the urine test for leaky gut?

Sorry so many questions. I just need some direction!

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I don't know about the lipase levels, how is your fat digestion (fecal fat).

trypsinogen is what they usually test.

I had a stool test run, but didn't see the fine print about eating 60 grams of fat a day while on the test, so fecal fat came back fine. *headsmack*

Never had trypsinogen tested.

I do, however, have gallbladder-like symptoms when eating higher fat meals although tests can't find anything wrong with my gallbladder.

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Couldn't I just assume I have parasites, infections etc. and do humaworm?

I want to make it clear that I don't know if I am reacting to foods at all or all. Why I'm not getting better being gluten and dairy free is a mystery. Is it my hashimoto's?

Heres the info about testing for leaky gut.

The standard test for leaky gut syndrome is the mannitol and lactulose test. Both are water soluble molecules that the body can't use. Mannitol is easily absorbed by people with healthy intestinal linings.

Lactulose is a larger molecule and is only slightly absorbed. A person drinks a solution contain both mannitol and lactulose. Urine is collected for six hours and the amount present in urine reflects how much was absorbed by the body. A healthy test shows high levels of mannitol and low levels of lactulose.

If high levels of both molecules are found, it indicates a leaky gut condition. If low levels of both molecules are found, it indicatioes general malabsorption of all nutrients.

Its impossible to say why you're not getting better....it could be any number of things....and it's most likely not just one thing going on. Personally, I think the only way to narrow it down is to test for all of the most likely culprits.

You could assume just about anything but you can also worsen your condition by self-treating if you dont have a good idea of what you're dealing with.

If you have leaky gut whatever foods you are eating on a regular basis will become problematic...so if you change your diet according to ELISA results...you will then become reactive to the foods you replace those with. Thats why its more useful to test for the things that cause the leaky gut...so that you can treat those things and hopefully heal your gut.

With leaky gut undigested food particles pass through the intestinal lining and into the gut....causing the immune system to react to those foods. It will continue to happen with any foods you introduce...unless you actually treat the underlying cause so that healing can take place.

There are some tests that can give you clear answers and direction as far as how to proceed with treatment. My opinion is that food intolerance testing doesnt really give us clear answers as to why we're sick and why we're reacting to foods in the first place.

Unless you dont mind spending the money you could do an elimination diet to get an idea of whether or not you are reacting to foods. This is a more reliable method of testing...and its also more affordable. :)

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