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Rachel--24

For All The Gene Experts...

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I would at times miss door jams and hit as I was going past--things like this.

I did this too! I crashed into things constantly....lots of "owies" during that time. I havent had that problem in quite awhile now. If I totally loaded up on processed foods and such I think I would notice some of those problems returning. I'd be bumping into dressers and door jams again.

I was tested for MS early on. I had many visits with the neurologist in the beginning and I think MS was the first thing I was tested for. I had a brain MRI and the results were normal.

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Here is what I have found so far. You know, when I went into the book store a couple of weekends ago looking for "gluten free cookbooks". I found the section and "The MS Recovery Diet" literally jumped out at me. I bought it. I pray to God that this is the answer I have been looking for. As I research now, it is all adding up. I have the right gene for it and many of the neuro symptoms.

Multiple sclerosis - DQA1*0102 was the most frequent allele in the MS patients and DQB1*0602 increased significantly in the MS patients (11)(12)

# ^ Amirzargar AA, Tabasi A, Khosravi F, et al (2005). "Optic neuritis, multiple sclerosis and human leukocyte antigen: results of a 4-year follow-up study". Eur. J. Neurol. 12 (1): 25-30. doi:10.1111/j.1468-1331.2004.00901.x. PMID 15613143.

# ^ Fern

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I may not have MS. But this diet is worth a shot to me.

Good luck! I'll keep my fingers crossed for you. :)

Keep us posted!

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Fascinating, I am interested in how symptoms group according to genotype and wish we could have a separate thread for each on this forum. I don't have DQ1, so can't contribute to your question.

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Rachel.

The doctors say I am celiac, but who knows without the biopsy lol. I was really looking for something that would help me be able to eat casein again. I honestly dont mess gluten, but i really miss my cheese. Is there an enzyme just for that.

paula

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Rachel.

The doctors say I am celiac, but who knows without the biopsy lol. I was really looking for something that would help me be able to eat casein again. I honestly dont mess gluten, but i really miss my cheese. Is there an enzyme just for that.

paula

If the reason you cant tolerate dairy is because you need help digesting it then the enzyme would be helpful. I have other problems with dairy which are seperate from the casein issue (phenols and amines)...so even with the enzyme I can still have problems with milk, cheese, etc.

There is one enzyme that I know of which has worked wonders for the autistic kids. The enzyme is specially formulated with high amounts of DPPIV...which is necessary for the digestion of gluten and casein. In many cases (not Celiac) the enzymes are taking the place of the gluten-free/cf diet and the kids are doing even better then they did while on the diet.

This is the enzyme I've been taking for awhile now and I'm able to eat gluten and some dairy.

Obviously you should remain gluten-free if you have Celiac. The only way to find out if it'll help with casein is to try it. I take AFP Peptizyde. There are two formulas of Peptizyde...The only difference is the "AFP" version doesnt contain enzymes derived from fruit...which some people are sensitive to.

Heres some info. I posted in another thread.

Whereas orthodox digestive enzymes fail to sufficiently break up resistant dietary proteins like gluten and casein found in wheat and dairy products, Peptizyde contains a family of enzymes designed to target their digestion.

It has been championed from the work of Dr Karl Reichelt a Biochemist in the U.S. who found that certain pancreatic and stomach enzymes namely pepsin, trypsin and elastase were not only insufficient to break down gluten and casein but could actually mis-digest these problem-proteins into narcotic-like chemicals known as exorphins.

Under these conditions exorphins are readily transmitted from the gut, to the bloodstream where they trigger a cascade of immune reactions like inflammation, congestion and swelling. Ultimately they also enter the brain where they can induce anything from dysphoria (low mood) and sluggishness to the serious behavioural problems seen in conditions like Autism, Depression and even Schizophrenia

Peptizyde contains a combination of powerful enzymes designed to predigest gluten and casein while they are still in the stomach. By "pre-digesting" troublesome proteins found in wheat and dairy products prior to contact with pancreatic enzymes in the intestine, it ensures they are broken down and converted to the proper compounds needed for healthy metabolism.

Fortunately Peptizyde not only deftly deals with the principle allergy-forming foods like wheat and dairy products but it also renders all other problem-proteins harmless such as those present in soy, corn, yeast, beef and eggs. Peptizyde proteases can manage all these different foodstuffs because each has a different specificity for breaking apart proteins.

Like extra pairs of scissors cutting at different parts of a ribbon each acts independently so the process is quicker and allows different smaller lengths of "ribbon" to be produced that are not allergenic. Not only that but peptizyde contains DPP IV one of only two peptidases which specifically destroys casomorphin (an exorphin) yielded from incomplete breakdown of dairy products.

It also consists of two other peptidases leucin amino peptidase and carboxypeptidase which similarly destroy exorphins remaining from the action of the proteases.

Studies published in April last year in the Journal of Agriculture and Food Chemistry prove that peptidases as an additional line of defence are particularly effective in the enzymatic hydrolysis (breakdown) of casein, soy and gluten proteins and act synergistically to achieve an effect unobtainable with individual enzymes.

As of this writing Peptizyde has only been tested in Autistics but given that the severity of this condition is largely determined by the intake of offending allergenic foods the results speak for themselves. Over 1500 families have tried Peptizyde on their own children and nearly all have reported better focus, awareness, socialization and learning and the absence of any regressive allergic symptoms associated with forbidden foods.

Follow up studies conducted by the Enzymes and Autism Board have confirmed these findings with 92% of participants reporting significant improvements in allergic symptoms like anxiety, sleep, aggression, short term memory, problem solving, pain and headaches after 6 months and no regression in symptoms. For this reason the manufacturers claim Peptizyde can produce as good or even better results as a Gluten and Casein free diet and that, they believe, can be extended to other food allergies.

According to Dr Houston "Peptizyde helps to not only reduce or inhibit the production of exorphins from food proteins, but supports digestion, insures complete degradation of food proteins such that they are not allergenic, and increases bioavailability of food proteins"

One of my doctors (who primarily treats autistic children) has found that these enzymes have been well tolerated and very helpful.

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hi,

I am DQ1,5(DQ5) and DQ 2,2(DQ2.2).

I did not have blood tests or biopsies. Tested positive for gluten intolerance and tTg antibodies through enterolabI have been sick to some degree forever.

Gluten symptoms:

I had chronic constipation and "attacks" of pooping(hard bulky) a ton and feeling sick. These attacks made me feel sick, weak, naseous, cold, lightheaded.

I also had "spells" which made things appear further than they were, difficulty thinking, difficulty thinking of the right word to say, feeling stoned.

sometimes the spells proceeded the attacks. sometimes they happened all at once. AWFUL

depression, anxiety, horrible pms, anger, bitterness, moody, sensitive to cold and heat, low libido

Anemia, rashes on hands, itching all over, muscle pain, joint problems, fatigue, very difficult to lose weight and maintain weight, low blood pressure

Since going off gluten I have had NO SPELLS at all. yea!!! My Constipation is gone and my poops look normal. Itching has subsided tons, and I have lost 6 pounds without trying. My blood pressure has gone up to 100/72(high for me)

I still get rashes on my hands when I do have some intestional unhappiness. Unable to pinpoint the cause, but very mild compared to before.

I have had months with no pms at all!!!! My libido is coming back!!!!!!!!!!!!!!!!

I feel sooooo much better.

I do still get depressed at times ,but nothing like this winter when I was eating a lot more wheat(usually didn't eat it). I still have anxiety but most of it revolves around my health and traveling.

The main problem I still have is muscle and joint problems. I just got diagnosed with Facet Joint Syndrome though. I have experimented with corn, nightshades, and soy and found no connection at all. My DR says mine is genetic. BOO!My spine gets stuck out of place. It sucks. My dr. says the pain could cause depression and fatigue.

I am still sensitive to heat and cold.

I also don't eat dairy. Cheese constipates me and butter and ice cream gave me D the last time I ate them. Tested positive for casein intolerance through enterolab.

Dont know if this helps at all. I do feel my neurological symptoms are much much better. No spells at all, but the depression and anxiety were around for over a decade before I had speech and vision symptoms.

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first went wheat free for months in 1995

Then went wheat free again in 2003, but cheated on and off for years, this winter cheated a lot and got worse in every area of life.

Gluten free no cheating at all!!!since mid january, so 4 1/2 months

I noticed improvements right away

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Rachel,

You might find this interesting. I just got my test results back and they were elevated for mercury, but not by much. I guess if it's been there for a long time the test may show low, but the levels really could really be higher. Years ago when I was in Junior High my ankles and feet began swelling. My parents took me to an alternative med. Dr. and he said it was from pesticides and treated it and it went away. At that time my parents also got a reverse osmosis water filtration system. It would be interesting if my chronic edema was for the same reason just that it's worse now and my edema is mostly abdominal.

In the area we are in we have well water and I know with all the farming around here it's been contaminated for years. We have a RO water purifier, but we changed the RO filter way past when we should have and that was when my swelling began to get worse. Guess we'll see as I treat this if there's a connection. My problems also began after we moved into this house so I've always wondered if there was a connection, but I also found out I was pregnant the day I moved in so I've never known for sure if it was the house or the pregnancy. I think the stress of the pregnancy did trigger some things. BTW, my dd that I was pregnant with that was the trigger is named Rachel so every time I see your name I think of that, lol.

So we'll see as I treat this if it helps. I've never had mercury fillings which I am so grateful for. The dentist I went to when we lived in VA was not happy about it, but I insisted and I'm glad I did. I've always been sensitive to metals and I didn't want to have them in my mouth of all places and have a reaction. I was so mad because after he got me set up to where I couldn't talk he makes the statement he doesn't believe in any of that. I remember I had a welt on my stomach at the time from my button on my jeans touching my skin which itched and hurt terribly and he's sitting there saying he doesn't believe in it. Still makes me mad. I have a great dentist now who does not believe in mercury at all which is a refreshing change!

As you've treated your metals have you noticed any improvements especially with the edema?

Paulette

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Mercury is a funny thing. I had all of my mercury fillings removed (12) about 11 years ago. I painstakingly found a dentist that would do it right. I had to drive an hour to get to him, but it was well worth it. Dental Dam, special filters for the room on top of an open window and a special mask for me. I was blood tested ahead of time to make sure the composite used was biocompatible for me. He did them 2 at a time every two weeks, so it took some time to get them all out.

Interestingly at the time my body temperature went from about 97 to normal 98.6 after the last ones were removed.

Then I took 1 DMSA pill and thought I would kill myself. I felt absolutely insane as the mercury was being pulled out of my brain. So I never took another pill. Instead, I took a lot of Vitamin C, cilantro and gave it time.

I do not know how much I still have in my system. But I know that I am unwilling to do the chelation challenge like my new doctor wants. You get the EDTA IV and then 24 hour urine. Then based on that, more chelation.

It just scares the hell out of me based on my experience with DMSA.

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^i don't blame you because that sounds terrifying, but rachel went through all of that so i'm sure she'll be a help to you :)

luckily i've never had fillings and neither has my mom, but i'm thankful that i know the dangers now...i still need a lot of work done on my teeth that's fore sure :lol:

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Rachel,

You might find this interesting. I just got my test results back and they were elevated for mercury, but not by much. I guess if it's been there for a long time the test may show low, but the levels really could really be higher. Years ago when I was in Junior High my ankles and feet began swelling. My parents took me to an alternative med. Dr. and he said it was from pesticides and treated it and it went away. At that time my parents also got a reverse osmosis water filtration system. It would be interesting if my chronic edema was for the same reason just that it's worse now and my edema is mostly abdominal.

Paulette,

I'm pretty sure my edema is related to toxicity because its been a constant thing since I got sick after my dental work. The edema worsens when I'm exposed to toxins...whether its from processed foods, chemicals etc. Mercury messes with enzyme systems and just really causes everything to go out of whack. It causes problems with mineral transport in the body so even if the minerals are there....they are often unable to get into the cells.

I'm not sure *exactly* what is causing the edema...other than the fact that my body is extremely sensitive and fluid retention is one of the symptoms I get from any incoming toxins.

I have no doubt that it will resolve when the heavy metals come out and things are able to get back into balance. Right now I realize that theres nothing I can do about it....just gotta work on ridding myself of this toxic load.

Its all very interesting. I have lots more to say but first I have to run a bunch of errands. :)

Shay,

EDTA isnt a good chelator for mercury. Its pretty weak for mercury and is usually used for chelating lead. Personally, I wouldnt use EDTA for a challenge test or for any continued treatments (unless lead is a significant problem).

I can share some of the stuff I've learned about mercury, chelators, etc. when I get back.

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I Have not been gene-tested (nor blood-tested nor scoped), not realising the implications of not doing so, that is not being aware of all the other possibilities of damage in the body other than the gluten, and just concentrating on eliminating that. Now I am beginning to wonder...

I have had a constant edema problem since my twenties, much worse now than ever before. Sometimes I can look like I have elephantiasis with my ankles drooping over my shoes--not a pretty sight (lol).

The other constant in my life has been mercury amalgam fillings in my mouth from the age of about 5. The school dental nurse used to give us wee ones little balls of mercury to take home in a matchbox to play with. These amalgams were replaced over and over and over again, with fillings in practically every tooth. At one point when I was 15 and we had been going to a rather aged dentist (he died about 10 minutes after I left his office one day) I had to have practically every single filling redone because they were not up to snuff. When I quit smoking at age 29 my gums became very inflamed and bled all over the place and I had perio surgery in my 30's. Starting in my 20's when they removed the amalgam they started putting crowns on, gold where they showed and a combination of gold and metal at the back, eventually porcelain/ceramic. My perio problems continued with my gums inflamed wherever the metals touched them and even though my periodontist didn't really believe that the metals were causing the problem he eventually recommended that all my crowns be replaced with porcelain/ceramic. I finally got rid of all the amalgam and metal in my mouth about 10 years ago, and no longer have that constant horrible metallic taste in my mouth. And of course my gums have healed. None of the amalgams nor metals were ever removed with any precautions, and as I have been reading Rachel's problems with mercury I am really now wondering if I should be tested for it, and how. Frankly I don't know a lot about this issue despite reading most of Rachel's posts (although admitting not all 1000 pages of the mercury thread).

Does anyone have any thoughts?

Neroli

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Frankly I don't know a lot about this issue despite reading most of Rachel's posts (although admitting not all 1000 pages of the mercury thread).

I dont actually have a mercury thread (yet ;) ). The OMG thread is almost 2000 pages but many topics are discussed there....not just mercury. I thought about possibly starting a thread dedicated to mercury so that anyone interested can easily find the info. I'm still thinking about that and will try to get some info. together since I'm on vacation next week and will have some extra time for that. I think it would be easier than re-posting alot of the same info. on several threads whenever the topic comes up.

Neroli,

I'm thinking mercury is probably a big issue for you. Unfortunately, it sounds like you've had ALOT of exposure! Everytime they are removed and replaced the exposure is significant (when the dentist doesnt follow a protocol for safety) and from what you're saying you had this done numerous times.

It only took ONE time for me. Two fillings removed unsafely and I felt very "off" afterwards. I actually think I might have gotten past this episode but my immune system never had a chance to recover and I never had a chance to deal with what I'd been exposed to that day.

Once the fillings came out the dentist gave me an option of porcelain or gold crowns. I chose porcelain because they're white. He gave me a speech about how gold is much better, porcelain breaks and needs replacing often, blah, blah blah. So I went ahead and took his advice.

I had temporaries in while I waited for my crowns. Holidays were coming and it took a few extra weeks to get into the office for my new crowns. Once the crowns went in I lost my health....in a matter of weeks I was on disability.

It started with the unsafe removals and then the crowns totally pushed me over the edge. I still had 2 amalgams left in my mouth (I only had 4 to begin with)...both on the bottom...one on each side. Directly above both of those amalgams were my two new gold crowns.

I didnt know it at the time but the amalgams contain mercury (how could I not know this??!!) and when dissimilar metals come into contact with each other in the mouth there is an electrical current that is conducted by the saliva. Its called galvanic reaction and it causes the most effective release of mercury from the amalgams....its NOT a good thing! All of the metals are released in high amounts during galvanic reaction.

To make matters worse metals act synergistically with one another. Mercury is toxic by itself but in the presence of other metals (and other neurotoxins) the toxicity of mercury is increased dramatically. I also smoked which exposed me to alot of cadmium. Cadmium and mercury are very toxic seperately....but much moreso together.

I do have alot of cadmium. It showed up elevated in my hair analysis and its been present in all of my urine tests.

Its good that you are now free of the metals...unfortunate that it wasnt done safely but good that they are out now. It sounds like your body wasnt dealing with the metals very well and alot of those oral symptoms improved when the metals were removed.

After my crowns went in I tasted metal and I had a feeling of shocks in my mouth...it also felt as if my teeth were being clenched together constantly. It was like there was an attraction with the metals and I couldnt keep myself from clenching them together and also grinding (which I'd never done before). I never noticed swelling with my gums but in a very short period of time the bone above each gold filing grew out quite a bit on each side. It was very bizarre but none of the dentists I saw were concerned.

I saw several dentists the first couple years, had constant problems with my teeth, one of the crowns was always hot and I could feel heat coming out all around it. It kept getting pushed out so that it was messing up my bite and the dentist had to shave it down a few times until it finally broke and had to be replaced. Then came a root canal on that same tooth. I continued having inexplicable pain and problems with the root canaled tooth and eventually after seeing a biological dentist I decided to pull the tooth. I never had ANY problems with my teeth prior to all of this.

I told my dentist that the crowns were causing galvanic reaction and I believed I might be getting alot of mercury exposure. I had read it online and immediately went in to see him about having them removed. He told me that the galvanic reaction is not any different from licking a 9 volt battery and that there was no danger in this!

I'm sorry but I would not even consider walking around with a 9 volt battery in my mouth for a full year! On top of that we're talking about a reaction between metals and one of them is mercury! The rest of the conversation did not go well but I had the crowns removed and went to a biological dentist to have my 2 remaining amalgams taken out.

After everything came out...including the root canal...my oral symptoms improved. The bone growth is still there but the other problems went away.

I would strongly recommend getting some tests done. I posted a few days ago a little info. about each of the tests available. I'll try to find it and re-post it here.

The mercury that you still have in your body would be stored away...it may or may not show up in some of these tests but I'm sure its there. It's easily absorbed into the system but it does not come out quite as easily or readily....thats why testing isnt always black and white. It depends how tightly your body is holding onto it. Some of the problems caused by mercury (mineral imbalances) can also make it harder for the body to release it.

I can give you alot more detail on the tests and other info. that might be helpful when I have more time tomorrow.

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I am a skin biopsy (DH) confirmed celiac. My 3 year old son has not had a biopsy and I don't plan to push for one because his Enterolab scores were VERY high. These were his genes:

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0603

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

I am sure he got the DQ2 from me but does that mean that he got the DQ1 from my husband? My freshman year of college I took human reproduction class rather than genetics. Darn it!

It is interesting to hear about all of your experiences with DQ1. Hopefully we will all figure this out! I pray that going gluten free at age 3 will help my son avoid the many problems that could have been in his future!

Good health to us all!!!

Meredith

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Oh my God! This post should probably be in that thread rather than here. So that metallic taste I had in my mouth for all those years was the galvanic response to the different metals. This went on for about 20 years! And yes, during this time I clenched my teeth something fierce, something I had never done before and no longer do. That's amazing! Yes, please, if you can find the info about testing. I will be in the U.S. in July and August if it has to be done in some specific place or manner. The only person I have known here who had metal detox had lead chelation. I have not spoken with my PCP here about this issue, so don't know what's available here.

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I just got my test results back and they were elevated for mercury, but not by much. I guess if it's been there for a long time the test may show low, but the levels really could really be higher.

There's not really any test which can determine total body load of mercury. Whatever shows up in the test could only be one very tiny fraction of whats actually inside the body. Some people will have more problems excreting it so it might show up low but the body burden is actually very high.

Typically when Dr.'s do repeat provoked urine tests (or "challenge tests") the results will show a bell curve. The first 6 or 7 tests might be low (or nothing) and then mercury starts to show up more and more...eventually it starts to drop....and then back down to nothing.

Thats not always the case though....each person is different. Sometimes a person might dump alot of mercury on the first test and sometimes not until WAY later does the mercury show up. Could be test #1...or it could be test #30. I think the bell curve is more common though.

My problems also began after we moved into this house so I've always wondered if there was a connection, but I also found out I was pregnant the day I moved in so I've never known for sure if it was the house or the pregnancy. I think the stress of the pregnancy did trigger some things. BTW, my dd that I was pregnant with that was the trigger is named Rachel so every time I see your name I think of that, lol.

I really dont come accross alot of Rachel's but I've always been happy with the name. I guess I just FEEL like a Rachel. :lol:

Could be the pregnancy that triggered the problems. Did the house have mold issues? Thats a big trigger for chronic illness. It was one of the things my Dr. wanted to rule out before we moved onto the possibility of mercury/heavy metals.

One thing that I've learned is that its never just one thing that causes us to become sick like this. It might be one thing that pushes us over the edge but things are building up long before we get to the point where we're really affected by all of it.

We all have toxins such as heavy metals and pesticides...none of us is free from that but some of us can handle it better. The problems start when the load becomes too great and the immune system can no longer cope with it. Everyone has a threshold...some people never reach theirs and some of us are more susceptible to the toxic exposures. Its all about genetics, the immune system, the total load, etc. etc....lots of factors come into play.

One of my Dr.'s told me of a study which was done where they took random people off the street to be tested for a long list of toxins. The only requirement was that they had to be healthy (free of symptoms). They tested hair, blood, urine, tissue and found that EVERY person had all of these toxins...and in large amounts.

Some people get sick and some people dont. As long as the immune system can deal with it we're not having symptoms...the scales can tip at any time and we end up chronically ill. Sometimes the scales may tip slightly but then the immune system handles it and it balances itself out...symptoms can come and go when we're under heavy stress or dealing with infection. Eventually we get hit hard enough and the immune system becomes too burdened.

I never really had periods of illness...for me it just happened all at once. For most people its more of a gradual thing.

I've always been sensitive to metals and I didn't want to have them in my mouth of all places and have a reaction. I was so mad because after he got me set up to where I couldn't talk he makes the statement he doesn't believe in any of that. I remember I had a welt on my stomach at the time from my button on my jeans touching my skin which itched and hurt terribly and he's sitting there saying he doesn't believe in it. Still makes me mad. I have a great dentist now who does not believe in mercury at all which is a refreshing change!

You were smart to avoid the metals! I really didnt have that option since I got my fillings as a child. As a teenager I became sensitive to any earrings which were not 14kt gold. Everything else infected my ears. In my late 20's I noticed that anklets and bracelets sometimes caused rashes if I wore them for too many days. My tolerance seemed to be getting less and less but I could still wear stuff for a day or two.

After I got sick I noticed that I cant wear anything at all...not even for a short time. I can still tolerate 14kt but nothing else....and occassionally I'll start having reactions to the gold earrings but it usually clears up pretty quickly. I cant have metal buttons or belt buckles touching my skin or I get rashes now.

Did your mom have fillings? My mom had 11 while she was pregnant with me. Even though I had no early signs of illness my Dr.'s feel that the exposure from my mom's amalgams was very likely having some effect early on. I had odd behaviors such as head banging (only on my pillow though) and rocking (which I still do). My Dr.'s treat Autism and these are 2 of the most common symptoms they see in the children and its directly linked to mercury. Even if these were early signs I was never ill.

As you've treated your metals have you noticed any improvements especially with the edema?

I started treatment in Oct. 07....I was having chelation treatments every two weeks for about 5 months. I think I had a total of 11 treatments. The first treatment was only a very tiny dose and my urine was tested. I excreted 9 toxic metals...including mercury. All but one were within the reference range.

The chelator does not only pull out toxic metals but also essential minerals. During chelation those have to be supplemented so that nothing gets depleted. The test results include the levels of good minerals in the urine.

My copper was very elevated on my first test but I didnt think much of it because I understood that the chelator has a higher attraction for copper and will pull it out before all other metals. The Dr. said the same...that it was normal.

After we got those results my Dr. felt that the metals were a huge issue so I continued with chelation...on the weeks that I wasnt having a treatment I would get mineral IV's to replace essential minerals. All minerals were included in the IV...so I was getting more copper.

My next urine test showed the same 9 toxic metals...still coming out in low amounts only. The copper was still off the charts...I excreted more copper than I had previously.

I was feeling pretty good after my first few chelation treatments but once they started increasing the minerals in my IV's I felt like I was going backwards. I started becoming even more sensitive to foods.

After 5 months my third test showed that the same 9 toxic metals were still coming out...but instead of increasing (like they would in a bellcurve) they were decreasing. So now the results were very low. Again the copper was off the charts...this time it was more than 4 times the normal reference range....but nobody was looking at that.

My Dr. said that either I dont have a problem with metals at all...or they arent coming out for some reason. There are alot of reasons why mercury can get locked up in the body. Blocked detox pathways can cause metals to not be excreted but this would likely cause me some symptoms if I was mobilizing the mercury and then unable to excrete it. I would feel very bad during chelation if that were the case...but I didnt have symptoms that would indicate that was occuring.

I have a very good Dr. who uses an advanced (and highly accurate) form of muscle testing to determine whats going on exactly. She has been testing me all through my treatment process....not only for figuring out what needs to be treated but also what method of treatment will work best and at what dosage.

She said if the chelation had been effective I would have been feeling improvements in the first couple months...so either the chelation worked but I'm still having other issues (besides mercury) or the mercury is still there but my body isnt letting go of it.

She tested me again and said that mercury was still my primary problem but for some reason I'm not excreting it. So I had to relay that to my other Dr. and there was no more chelation until we could figure out why mercury is not coming out.

In the meantime I started researching alot and figuring some things out (too complicated to get into here but some of it having to do with copper). I also kept reviewing my urine results looking for clues. I ended up asking my Dr. to run a red blood cell test for copper and all other minerals. My copper was elevated (which is what I had suspected).

Mercury throws all the minerals out of balance and it also interferes with copper metabolism....so I have toxic levels of copper. It wasnt obvious in the urine test and cant be determined that way...so I had to do bloodwork to get reliable results as far as copper levels.

Once I found that out I talked to both of the Dr.'s about the possibility of copper interfering with mercury excretion....simply because the majority of the chelator was pulling out copper. It wasnt getting to the other metals because my copper levels remained high throughout chelation. They never came down because I was getting alot of copper put back in with my mineral IV treatments.

The Dr.'s agreed that I should resume chelation to pull out the copper and see what happens from there. Maybe we will start to see the other metals come out in higher levels but if not we still have to figure out why mercury is "stuck". I may have to have some tests for genetic weaknesses if thats the case but I'm really optimistic that once the copper is out of the way we will start seeing more of the other metals. I'm no longer supplementing any copper at all and I'm avoiding foods which are high in copper as well.

After all of this I read that people who are toxic from mercury should avoid supplementing copper. So now I know. :rolleyes:

To answer your question...I dont know yet if its gonna help with the edema or not because I just resumed my treatments. I'm gonna wait until I've had at least 5 treatments and then repeat the urine test to see whats going on with the metals. Hopefully I wont be seeing copper off the page and I'll be seing lots of mercury instead. :)

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Oh my God! This post should probably be in that thread rather than here.

I can copy and paste. :D

So that metallic taste I had in my mouth for all those years was the galvanic response to the different metals. This went on for about 20 years! And yes, during this time I clenched my teeth something fierce, something I had never done before and no longer do.

Wow...so you had some of the same problems! For some reason I got hit really hard right away. I think if I'd left it alone I'd never make it 20 years! :blink:

I was totally pain free, totally normal, could eat whatever I wanted....I was really active and just happy in my life....all of that was taken away in only a few weeks!

I think I got the crowns around Thanksgiving 2002....and by the end of January I was on disability with a TON of symptoms. It happened so fast. In a way I'm glad it happened the way it did because if it had been slow and gradual I dont know if I would have ever connected it to the dental work.

It wasnt all that hard to figure it out since it happened so quickly and the symptoms were severe.

Heres the info. I posted on another thread.

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

Mercury (from amalgams) is not easy to test for. It doesnt usually show up in standard urine, blood or hair. There is only a short period of time that it remains in the blood...and then it gets stored in different areas of the body (kidneys, brain, etc).

There are tests that can help identify the problem.

These are some of the tests I've had (I think its pretty much every method available at this time).

Hair analysis:

Usually mercury doesnt show up...if it does you can be certain that its a problem....however, no mercury in the hair doesnt mean its not there. A person can be extremely mercury toxic and yet have very low levels in hair. Actually the most toxic people will not have anything showing up....this is because they have more difficulty excreting it.

A hair analysis will not only check toxic elements...but also the essential elements. This is where a knowledgeable Dr. (or patient) can get clues as to whether or not mercury is an issue. Mercury causes the essential minerals to be skewed...they are usually out of balance when mercury is a problem. Other toxic metals dont cause the minerals to be skewed....only mercury does that (as far as they know).

So if no mercury is showing up in the hair....but the minerals are not in balance....this indicates that mercury is probably an issue.

My own results showed very low levels of mercury, calcium was elevated and a few other minerals were either too high or too low. This indicates impaired mineral transport...and mercury causes that problem.

Mercury usually interferes with the body's ability to use, process, and store minerals. Regular minerals: stuff like calcium, magnesium and sodium. (On a hair test, these are called "essential elements".) While this is a very bad thing in terms of health effects, it is "helpful" for the purpose of determining mercury poisoning, because it is a pretty predictable result.

To be just slightly more technical about it, mercury poisoning usually causes impaired "mineral transport". Mineral transport is the ability of cells to pull minerals into themselves and pump minerals out of themselves selectively.

If mineral transport is normal then someone with too much mercury will have high hair mercury levels. This happens with about 1 person in 10 who have a mercury problem. This person will have a HIGH reading for mercury. In this case, it is easy to see they have a problem with mercury. These people have normal mineral transport, and can move mercury from the large pool in the body into the hair.

For the other 9 people who are mercury toxic, it is harder to figure out if they have a problem or not. The normal level of mercury present in their hair could mean they don't have much mercury in their body (they are okay), or it could mean they have impaired mineral transport due to mercury poisoning, and that is why there is little mercury in their hair.

Since mercury impairs mineral transport, examining hair for the level of many minerals lets us determine if mercury has left its signature in the hair's biochemistry even if the mercury itself doesn't show up.

Provoked Urine Challenge:

A chelator is taken prior to 6 hour collection of urine and the urine is then tested for toxic metals. This test is not always accurate as it sometimes takes several doses of a chelator in order for mercury to start showing up. It is also more difficult to excrete mercury when mineral transport is messed up.

A chelator is a drug which binds very tightly with heavy metals and pulls them out of the body. Detoxification of mercury is somewhat complicated...so I would not rule out mercury toxicity if low levels are in the urine. Sometimes mercury isnt showing up at all during chelation therapy....and it may be weeks or months into the therapy that suddenly large amounts of mercury start showing up.

I have done 3 urine challenges using IV DMPS as the provactive agent. 9 toxic metals were excreted in all 3 tests. So far I have not had significant levels of mercury showing up (although it is still showing up in normal ranges even after 5 months of chelation treatments) and one of my Dr.'s began to question whether or not mercury was the problem. It was then discovered that I have excessive copper levels which were preventing the chelator from reaching mercury and other metals....because the chelator has a strong preference for copper and will always pull that metal out first.

We had to confirm this with a red blood cell test to check copper levels...which were indeed high. I now have to avoid any supplemenation of copper (as well as high copper foods).

There are many things which can prevent mercury from showing up....this is just one scenario.

IV DMPS should NOT be given to anyone who still has filings in place. This can increase toxicity significantly. Chealtion can only be done after fillings are safely removed. Some Dr.'s will give a small dose of an oral chelator (only for the purpose of testing) while a person still has fillings. I think its best to wait until fillings are removed.

Porphyrin testing:

This test has been used alot recently to help determine heavy metal toxicity in autistic children.

Its a urine test which does not involve taking a chelator. This test does not look for mercury itself...but rather specific porphyrins naturally produced by the body. These porphyrins become elevated when the body is toxic from mercury and other heavy metals.

I was suppossed to take this test a couple weeks ago but I've been sidetracked by other things. I have the urine kit and will hopefully take it on Monday....should have the results within 2 weeks.

Alternative testing:

Aside from those tests I just mentioned I've also had quite a bit of alternative testing done and I continue to be tested throughout my treatment.

I've been tested by 4 different practitioners using different methods. I was tested for just about everything under the sun including many different pathogens (viruses, bacteria, fungi, parasites), hundreds of toxins and many other things that can cause chronic disease symptoms. Although I do have other issues the main issue has always been the same....no matter which method of testing...and no matter which practitioner was doing the testing. Mercury always shows up as the #1 problem.

My favorite method of testing has been something called autonomic response testing (ART) which is an advanced form of muscle testing. Its around 90% accurate (very reliable) and for me has been extremely valuable. The lab tests dont always tell the whole story...but with ART I feel as if we're getting a "peek" inside and a more clear picture. With this type of testing the accuracy does depend on the skills of the practitioner.

All methods of testing have identified mercury as a huge problem but ART is the only method that can actually locate mercury in the body...as in...specific body compartments which are storing toxic levels of mercury (or other metals).

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The dentist I used, said that cilantro is one of the most powerful chelators of Mercury. So powerful that he said he would never even eat it. He did mercury fillings for many years 3 decades. He knew he was toxic. He now spends his time removing them from people's mouths.

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The dentist I used, said that cilantro is one of the most powerful chelators of Mercury. So powerful that he said he would never even eat it. He did mercury fillings for many years 3 decades. He knew he was toxic. He now spends his time removing them from people's mouths.

Two of the dentists I've seen were treated for mercury toxicity. One of them has since totally switched his practice and is now mercury-free and safely removing fillings from his patients. From what I understand ALOT of dentists are mercury toxic. A couple of the most expeirenced Dr.'s in the country who treat mercury toxicity have said that they get alot of dentists coming in because they are toxic....they see ALOT of dentists coming to them for help. Dentists also have the highest suicide rate of any profession.

I'm pretty sure the dentist who was drilling out my fillings unsafely (he didnt even use a rubber dam!) had some issues. He did not look healthy...I remember thinking that the first time I saw him. He very much believed that mercury fillings are safe and totally dismissed anything that would suggest otherwise. I told him I'd learned that in other countries mercury fillings were banned from use in dentistry. He told me it was all propaganda.

I think he must have lost his mind because of all the mercury vapor he's been exposed to! In my opinion anyone who thinks its OK to have an electrical current between mercury and other metals in the mouth is clearly not in their right mind.

Cilantro can be very dangesrous because it can pull mercury from the brain. Technically its not a chelator....a chelator has to have the ability to mobilize mercury AND the ability to tightly bind with mercury so that it can be safely excreted from the body.

Cilantro is a "mobilizer" of mercury...so it can pull mercury from the tissue but then it doesnt form a strong bond with it. It can be considered a "weak" chelator because it cant get the job done on its own. It can drop the mercury which causes it to be redistributed to other areas of the body or even worse....back into the brain. Thats one of the worst things that can happen during chelation. If the mercury cant be excreted it is redistributed....redistribution causes alot of stress on the body and can cause more damage to occur.

Garlic is also a mobilizer. There are alot of things that have the ability to move mercury around but an effective chelator has to have two sulfur atoms in order to form that tight bond with the mercury. The natural "chelators" only have one sulfur atom.

The mobilizers can be used together with a binder and that can be more effective. The mobilizer would pull mercury from the tissue and then a strong binder such as chlorella or activated charocal can absorb it and keep it from getting redistributed.

No kind of mercury detox should be attempted without being under the care of a knowledgeable doctor though. Personally, I dont think people can really clear out the mercury very effectively using natural detoxers. They are good for support but not for getting the whole job done.

I prefer natural treatments but in this case that really isnt an option if I want to get better before I'm like 80 yrs old. :)

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I am sure he got the DQ2 from me but does that mean that he got the DQ1 from my husband? My freshman year of college I took human reproduction class rather than genetics. Darn it!

Meredith

Meredith, I'm pretty sure it means your husband has to have a DQ1 gene....if you're sure the DQ2 came from you. You and your husband could both have a DQ1 gene. I'm not very knowledgable about the genes but I think thats right.

Your boys are cute...I'm sure having your 3 year old on the diet will make a difference. :)

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Mercury is a funny thing. I had all of my mercury fillings removed (12) about 11 years ago. I painstakingly found a dentist that would do it right. I had to drive an hour to get to him, but it was well worth it. Dental Dam, special filters for the room on top of an open window and a special mask for me. I was blood tested ahead of time to make sure the composite used was biocompatible for me. He did them 2 at a time every two weeks, so it took some time to get them all out.

Thats the right way to have it done! Too bad I didnt know any of this stuff ahead of time...I was so clueless!

When I went to a mercury free dentist for the removal of the remaining fillings I had the blood test for compatibility. He took everything out. The previous dentist put in composites after I told him to remove the gold crowns but we didnt know what meterials were in those composites. Since we didnt know what was in there I had those taken out too. Everything I have in there now was put in after we did the compatibility testing.

Interestingly at the time my body temperature went from about 97 to normal 98.6 after the last ones were removed.

I've read that its common for that to happen. Mercury lowers the body temp.

Then I took 1 DMSA pill and thought I would kill myself. I felt absolutely insane as the mercury was being pulled out of my brain. So I never took another pill. Instead, I took a lot of Vitamin C, cilantro and gave it time.

I do not know how much I still have in my system. But I know that I am unwilling to do the chelation challenge like my new doctor wants. You get the EDTA IV and then 24 hour urine. Then based on that, more chelation.

It just scares the hell out of me based on my experience with DMSA.

There is so much that needs to be taken into consideration prior to starting chelation. I had to wait a full year before my Dr. would even give me a baby dose of DMPS for my challenge test. I did alot of different things to try to build up my immune system, improve detoxification, increase tolerance for supplements, etc.

I had alot of energetic testing to see what I could tolerate and what I couldnt. In the beginning I really couldnt tolerate anything. Every supplement I tried caused me to react. My Dr. wasnt going to even consider giving me a chemical chelator until some of this had improved. I spent a year working on different issues and then finally I did the challenge test and he then started me on treatment....very slowly. He has never approved a full dose of DMPS for me. With energetic testing I was told my max. would be 3/5 the normal dose....so thats what I worked up to.

If your body is not ready for chelation you wont do well with it. There's different reasons why things can go wrong and usdually its because the patient is given too high a dose...or they are reactive to the chelator...or they still have fillings in their mouth.

Even the tiniest dose can be harmful if a person is having problems excreting it. If you get horrible symptoms its most likely because you mobilize more than you can excrete. When the amount of mercury you pull out exceeds what your body is able to excrete you get symptoms as the mercury gets redistributed.

Theres lots of things that can be done to minimize that kind of reaction. So far I havent had any symptoms of redistribution. If I start to have any problmes my Dr. will make me stop treatment and I'll have to work on other things until I'm in a better place. Hopefully I can continue without having problems.

The energetic testing has helped SO much.... without it we'd be kind of going about things blindly. Its helped me to avoid having setbacks from treatments or supplements that my body cant tolerate. Things have gone really smoothly because of that.

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