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jerseyangel

Oxalates And Nightshades

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Amanda,

I'm curious about Vitamin C. What is your experience with it?

I've read that excess Vitamin C can convert to oxalate for up to 2 weeks!

Also, I have multiple chemical sensitivities which is significantly more noticeable after eating high oxalate or high mold containing foods. Other times its not as bad.

My inflammation seems to be mostly in my head/shoulders....particularly the sinuses and the jaw. I also have some problems in the gut. The rest of my body is affected but not as noticeably....I've been on restricted diets for a long time now and as a result I'm not having "all over" pain like I once did.

If I'm reacting to the Vitamin C because of oxalates....could the symptoms flare-up so quickly? Would it depend on the amount I'm consuming in food at the same time? In other words...is it the same as with salicylates and other intolerances....as far as having a threshold which would differ from one person to the next?

In the meantime I'm still trying to determine whether or not the reaction could have been related to oxalates. Do you know if the reaction can happen that quickly?? I was feeling the inflammation within 10 minutes of finishing my IV.

Hi,

Well, the specifics on the vitamin C issue are a bit out of my league. This will be the "autism mom" talking here! The autism doctors are very big on high-dose C. Susan Owens, the researcher who is leading the oxalate project, insists that, because C converts to oxalate, one should not take any additional beyond what's in the diet. And that view is heresy in the autism community!! I have been very concerned about removing it. I do not think there's a definative answer about that question just yet.

Now, so far as reacting to oxalates....this is one of the reasons I recommend the VP Foundation cookbook rather than the oxalate forum. It is the experience of the VP Foundation members, and my experience as well, that the oxalate symptoms are not really severe and immediate reactions, though they might happen the same day. And the symptoms generally relate to urinary issues, restless leg symptoms in the night, genital pain, and sometimes localized pain. On the oxalate forum, they talk of immediate behavior issues with their kids if the children "get oxalates." I am not convinced that they are seeing an oxalate reaction. I suspect there might be sensitivities beyond oxalates that they have not yet identified.

On the LOD yahoo group, in the files, is a list of physical issues that have been "fixed" for many by the LOD. I had many, many of the problems. Kidney issues, either with you or your family, are a flag that oxalates might be a problem. Urinary issues are a big flag--getting up in the night to urinate is a biggie. IC symptoms and restless leg come up a lot, too. It seems that many women have had life-long problems with bladder infections that they attributed to yeast, and that these were not yeast infections at all, but oxalate complications.

So how do you know? I think I'd go to the list and see if you are a good symptom match. But apparently there are many people who have benefitted from the diet who didn't match well....

The bottom line is probably that if your gut is damaged, there are probably oxalates sneaking through. And oxalates have probably attached to the damaged tissue. So you probably would benefit from the LOD. Sigh. I know that's general, but I think that's what the oxalate experts would say.

Now I'd like to give a personal opinion on the chemical sensitivity part, because I have that too. But this is just my own observations. I seem to get the neck and shoulder pain from exposure to molds and dust. THat is not an oxalate reaction with me. I have a friend who is also being treated by a good doctor for Candida/metals and her doctor says the shoulder pain is a toxic reaction, and shows that the liver is not able to detoxify the body correctly. I absolutely get neck and shoulder pain when I eat moldy food or clean a dusty room.

I think the whole autism community would agree that metals are probably the root of all these evils, or perhaps antibiotics. Chelation is HUGE in the autism community, but also can be somewhat dangerous, as a child can't tell you enough about how he feels to manage through the treatment. There are lots of kids who got very sick, and the parents and doctors thought they were just dumping metals, but they never regained any ground....enough scary stories that many autism doctors go to chelation later in the treatment rather than sooner unless the metals are really, really high. It is the opinion of my doctor, for instance, that the body should be able to dump the metals out on its own. She is working on rebuilding my son's detox pathways so the metals can be dumped out on his own naturally without having to chelate.

And that brings up an important oxalate point. Susan Owens is thinking that it's possible that the reason these kids, and many adults, are hanging onto such a high metal load is that the metals are trapped in the oxalate. We talk about metals "being trapped in tissues," but just how are they trapped there? She is wondering if the oxalates are the trapping mechanism. And then when oxalates are dumped out, the metals are not redistributed, but are dumped out as well. She speculates this because so many of the autistic kids are making such great gains on the diet. There is no evidence of metals just redistributing in the body, but it looks like the metals are being chelated. This is exciting stuff, but they don't have the research to prove it yet.

So much new territory here. I guess you have to try the diet to see if it helps. And that means at least a month of trial, I think, before you make a decision. And so many other factors come into play also. I wonder how many people saw gains on the LOD just because they were using soy, and removed it? Or how many people with mold sensitivity removed nuts, and got better? And maybe it wasn't oxalates at all? So hard to tell.

But EVERYONE IN MY FAMILY GAINED FROM THE DIET. So that means, to me, that this must be a very widespread problem.

The diet really isn't that hard to do once you find the foods....

Amanda

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Oh, let me add quickly..

If you are eating a LOT of the high oxalate foods, you probably have an oxalate problem. We ate spinach daily (yikes!) and baked with almond flour for the SCD before going on the diet.

If you start the LOD and get sick, that is a good sign. A "positive negative," Susan Owens says. It shows you're dumping toxins.

There is a blood test from Great Plains lab that tests for hyperoxaluria. I don't know how much it is, but I guess it's accurate.

Have a good day, all!

Amanda

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Hey there!

This is a wonderful thread!!! i am in the process of reading all 24 pgs from a Blackberry so it is taking some time.

I was able to locate on the internet which foods are considered oxylates. But i could not locate which foods are considered nightshades. Would someone post a list of nightshad foods for me please? I'm sorry if it is already posted in here but like i said, im reading slowly from a blackberry so i havent found it yet.

Thank u so much! This is very interesting information. I have been gluten-free for ten months and doing very well until 6 weeks ago. Now i am trying to figure out what i could be intolerant of now! It gets frustrating!

Thanks again!

-Ali :)

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On the LOD yahoo group, in the files, is a list of physical issues that have been "fixed" for many by the LOD. I had many, many of the problems. Kidney issues, either with you or your family, are a flag that oxalates might be a problem. Urinary issues are a big flag--getting up in the night to urinate is a biggie. IC symptoms and restless leg come up a lot, too. It seems that many women have had life-long problems with bladder infections that they attributed to yeast, and that these were not yeast infections at all, but oxalate complications.

I'm glad you mentioned restless leg because I've wanted to call it that right away. This is a big symptom of mine. Also the bladder pain. It'll also affect my joints or what seems like the ligaments in and around joints. Especially up around the skull and jaw area. I know that's because I have a mouth full of metal. Still have my fillings. It might be that I feel stress in my neck and shoulders and those muscles tighten pulling on the ligaments. I don't know. I know this area has improved so much since being on this diet. It really amazes me.

The bottom line is probably that if your gut is damaged, there are probably oxalates sneaking through. And oxalates have probably attached to the damaged tissue. So you probably would benefit from the LOD.

This seems to make sense to me. I've been looking all my life for a diet to heal a damaged gut and this is the first time a diet for healing it makes sense to me.

Now I'd like to give a personal opinion on the chemical sensitivity part, because I have that too. But this is just my own observations. I seem to get the neck and shoulder pain from exposure to molds and dust. THat is not an oxalate reaction with me. I have a friend who is also being treated by a good doctor for Candida/metals and her doctor says the shoulder pain is a toxic reaction, and shows that the liver is not able to detoxify the body correctly. I absolutely get neck and shoulder pain when I eat moldy food or clean a dusty room.

Amanda

All of this is mind blowing for me. I've know for years I have the candida problem and went on candida diets and nystatin for years also paying expensive doctor fees for weekly tests and food sensitivites etc. That was many years ago and they know so much more now. I still have the mold problem and this is the worse time of year for me with all the decay of plants and leaves in the air. We also live in the woods and mushrooms are all around our house. :P

Thank you so much Amanda with all your help. I'm still learning so many new things and it helps to hear from someone who has been through it. Thats what we really needed in this thread. I have to learn to lower my load alittle more. I was worried about eating white rice and having the white rice/tapioca bread as my only grain being that its high glycemic and that causing candida syptoms. You said mention that its ok and that's a relief. I will be getting that book by dr. semon. and I'm going to break down and by the vp foundation.

My biggest battle is what to eat. I just want to know "what".

Gail

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Well, the specifics on the vitamin C issue are a bit out of my league. This will be the "autism mom" talking here! The autism doctors are very big on high-dose C. Susan Owens, the researcher who is leading the oxalate project, insists that, because C converts to oxalate, one should not take any additional beyond what's in the diet. And that view is heresy in the autism community!! I have been very concerned about removing it. I do not think there's a definative answer about that question just yet.

Amanda,

Thanks so much for your response. :)

I had my IV yesterday and the Dr. decided to leave out everything and just do the DMPS....if theres a reaction he wanted to be sure its not the DMPS casusing it. Yesterday was my first time with it and it went really well...so it was definately the vitamin c or something else (glutathione or minerals) in my last IV that caused problems.

I was really relieved to not have the vitamin c included. :)

Now, so far as reacting to oxalates....this is one of the reasons I recommend the VP Foundation cookbook rather than the oxalate forum. It is the experience of the VP Foundation members, and my experience as well, that the oxalate symptoms are not really severe and immediate reactions, though they might happen the same day. And the symptoms generally relate to urinary issues, restless leg symptoms in the night, genital pain, and sometimes localized pain. On the oxalate forum, they talk of immediate behavior issues with their kids if the children "get oxalates." I am not convinced that they are seeing an oxalate reaction. I suspect there might be sensitivities beyond oxalates that they have not yet identified.

My symptoms are not urinary related....I have had that vulvar pain thats been mentioned but its very rare and probably only if I'm eating alot of something which is high in oxalate. I've been on a low oxalate diet for so long (without being aware that it was LOD) that its not possible for me to really get a dramatic reduction in symptoms or "dumping" episodes now.

I tried eating alot of chocolate the past couple weeks and I did notice some very mild vulvar pain which is not ongoing...I'll feel it for only a second and then its gone. Mainly any symptoms I get are in the gut and always in the jaw/head (where the metals are). I did get increased inflammation in those areas after a few days....once it started occurring it became noticeable as I was eating the chocolate...it wasnt delayed.

I also noticed the chemical sensitivities increasing significantly while eating alot of chocolate. This was very obvious to me. My urine was also more clear...which is not a good sign. It means the kidney's are struggling/overloaded. It happened to me once before when I didnt listen to my Dr. and tried to detox metals too rapidly.

I agree that alot of reactions are caused by other sensitivities unrelated to oxalates. Its very difficult to determine this when alot of high oxalate foods are also high in salicylates or contain mold, or have perservatives, or pesticides, or just about anything else that can be causing the reaction.

I get changes in behavior from exposure to yeast/molds....I'm not sure what other foods might also trigger that in me but I'm quite sure any neurotoxins would do it. I havent knowingly consumed anything containing neurotoxins in over 2 years now.

I have been doing really well for awhile now. I feel really good most days but I'm still extremely sensitive to foods and chemicals. I do well because I stick to only a few foods. I do believe that these food sensitivities will all diminish with treatment of the metals. I'm working with some very knowledgeable Dr.'s as far as heavy metal detox and I've been assured by all of them that these things are occurring mainly because of the toxic burden. Mercury inactivates so many enzymes, impairs detoxification, etc.

So how do you know? I think I'd go to the list and see if you are a good symptom match. But apparently there are many people who have benefitted from the diet who didn't match well....

I think I benefit from the diet but I wouldnt say that oxalates are my only problem...far from it. I still have to avoid so many additional foods...it would be impossible to say how much of it is related to oxalates.

At this point my main interest in LOD is to hopefully reduce both the oxalate and yeast burden in the areas where they seem to be accumulating. These things can make chelation more difficult so I'm hoping by lowering that burden the metals will come out much easier. The more things which are binding with them in the tissue....the more difficult it becomes to get them out.

Now I'd like to give a personal opinion on the chemical sensitivity part, because I have that too. But this is just my own observations. I seem to get the neck and shoulder pain from exposure to molds and dust. THat is not an oxalate reaction with me. I have a friend who is also being treated by a good doctor for Candida/metals and her doctor says the shoulder pain is a toxic reaction, and shows that the liver is not able to detoxify the body correctly. I absolutely get neck and shoulder pain when I eat moldy food or clean a dusty room.

I agree with your friends Dr....and its pretty much the same thing my own Dr.'s have told me. Its not specific to mold or dust in my case...it can be *anything* which contributes to the toxicity already in my body.

Since the heaviest burden is in my head this area for me is most symptomatic and inflamed. My jaw, neck and shoulder pain can be aggravated by foods, molds, chemicals...just about anything...including antimicrobial or antifungal treatment.

In my case its not just the liver but also my lymphatic system. The lymphatics and the liver are responsible for the majority of detoxification in our bodies. My lymph system is pretty clogged up right now...its not able to deal with all the toxins. Drainage is very poor and so that "build-up" sets off the symptoms...especially in my upper body where the toxic burden is really heavy.

My Dr.'s have me on a homeopathic to help with drainage and I'm suppossed to be doing things to increase the flow...exercise...especially stuff like rebounding or jumping up and down, jogging, etc. I feel alot better and less clogged up when I exercise or do things to increase circulation and raise the body temp.

I think the whole autism community would agree that metals are probably the root of all these evils, or perhaps antibiotics. Chelation is HUGE in the autism community, but also can be somewhat dangerous, as a child can't tell you enough about how he feels to manage through the treatment. There are lots of kids who got very sick, and the parents and doctors thought they were just dumping metals, but they never regained any ground....enough scary stories that many autism doctors go to chelation later in the treatment rather than sooner unless the metals are really, really high. It is the opinion of my doctor, for instance, that the body should be able to dump the metals out on its own. She is working on rebuilding my son's detox pathways so the metals can be dumped out on his own naturally without having to chelate.

Yes...chelation can be extremely dangerous if not done properly. I'm fortunate to be working with some really good Dr.'s who have alot of experience and were trained by the best in this country. I think I would be very scared and apprehensive if not for that. I'm very proactive and dont take any Dr.'s word for it...but my Dr.'s have so far not given me any reason to doubt them. My experience has been amazing so far. :)

My own Dr.'s dont believe that my body can recover on its own...they all told me in the beginning that chelation would be necessary for me when I got to the point that I could tolerate it. They were not willing to start me on chelation without first doing alot of other things to make sure I would not suffer from it. Its been a year and I was not even able to take the "challenge" test for heavy metals until my Dr. finally OK'd it last week. That was what I had done yesterday. I was also tested for the DMPS to make sure I would not react to it (small amount under the tongue).

If the Dr.'s arent taking *everything* into consideration, including infections, pathway function, vit/min deficiencies, thyroid function, food intolerances, liver and kidney support, etc. etc....alot can go wrong.

I've been told there should be NO symptoms during chelation....if things are going smoothly we should not be feeling it. Getting worse means that something is wrong and metals are being redistributed. My Dr.'s treat each patient individually...its been baby steps for me from the start. They havent been agressive with anything and I'm tested for tolerance as well as dosage prior to starting any treatment. I only take what my body can handle.

I started DMSA about 6 weeks ago and have not had any problems with it. I only take one pill every 3 days...whereas most Dr.'s are doing 1 pill every 4-6 hours for several days.

I think every complication which occurs during chelation is a direct result of the Dr. not being aware of everything going in the patient, not covering all the bases, giving a higher dose than what that individual can handle.

The #1 thing is that the mobilization of metals *cannot* exceed the patients ability to excrete. If that happens you will feel worse from the circulation and redistribution of the metals. Each person will be different in how much they can handle...there needs to be careful consideration with regards to that.

Chelation can go very smoothly or it can be a very rough and dangerous ride...it all depends on the experience and knowledge of the Dr.

And that brings up an important oxalate point. Susan Owens is thinking that it's possible that the reason these kids, and many adults, are hanging onto such a high metal load is that the metals are trapped in the oxalate. We talk about metals "being trapped in tissues," but just how are they trapped there? She is wondering if the oxalates are the trapping mechanism. And then when oxalates are dumped out, the metals are not redistributed, but are dumped out as well. She speculates this because so many of the autistic kids are making such great gains on the diet. There is no evidence of metals just redistributing in the body, but it looks like the metals are being chelated. This is exciting stuff, but they don't have the research to prove it yet.

Its all very interesting and exciting to learn about. I hope more research will be done.

My personal opinion is that the metals are the main problem but as problems with the sulfation/methylation pathways, leaky gut, etc begin to take place...other things tend to add to it.

With some of the alternative Dr.'s its become known that sulfa residuals tend to accumulate in the tissue. This comes primarily from the sulfa in antibiotics and would include all dairy, meat, eggs, etc...which are not organic. Other things such as chemical sulfites in foods, hair products, toothpaste etc...also contribute.

These residuals also trap metals because they bind with them the same way that sulfur would. It can cause a disruption in the way that sulfur should work in the body and it can also prevent a chelator from getting to the metals. I had an alternative type treatment to detox sulfa residuals before I started any chelation. This is supposed to allow chelation to be much more effective.

I cant imagine that kids on the spectrum have been here long enough to accumulate so many things that would trap metals in the body. It seems like the metals would be the primary issue....that and an impaired detoxification system. Once that happens there is alot of damage and so many other things become problematic as well.

I suppose its easy for me to see it this way. I have a one-track mind when it comes to the metals because of my own experience. I did not have *any* problems with foods, chemicals or anything else...ever in my life. I would have rated my health a 15 (on a scale of 1-10). Then I had unsafe dental work done and from then on my life changed drastically. Everything points to the mercury.

I wonder how many people saw gains on the LOD just because they were using soy, and removed it? Or how many people with mold sensitivity removed nuts, and got better? And maybe it wasn't oxalates at all? So hard to tell.

Yeah....I agree...its really hard to tell. Its a guessing game.

I pretty much only eat organic grass fed beef, lamb and frozen peas on a regular basis. Everything else pretty much leads to problems for me. I can eat some things occasionally but not everyday. I dont eat soy, dairy, all grains, all nuts, most veggies and fruits, etc. etc.

Its pretty crazy how much stuff I react to considering that for 31 years (and prior to my dental work) I could eat whatever I wanted and never even gave it a thought. :huh:

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Amanda!

Thank you SO much for visiting us over here. I hope you come often! You are such a source of experience and information!

You had responded to one of my postings over at Yahoo group -- about the yeast diet.

I'm so glad you said what you did about the VP book because someone over at the yahoo group said basically "if you know how to cook, you don't need this book." And because I knew it wasn't gluten-free, I didn't bother to get it. But now I will! And the one by the yeast-diet doc too.

It's true the yahoo group is a little chaotic -- not so well organized and I can't follow a lot of the discussion about supplements. But there are good nuggets in there every so often. The "files" are probably better for someone looking for an overview.

One question for you and the rest of the folks here: I am still having daily shin burning. It gets worse in the evening, but seems to flare up after I eat any time. Does this ring any bells for you guys? The shin burning was really bad in the first couple of weeks and now it's not so intense, but it's continuous and getting old.

Another question for the group: someone over at the yahoo group asked why we had reason to believe that the oxalates would "dump" (through GI or urinary tract or skin, I guess) rather than just relocating and causing trouble elsewhere. This obviously relates to the metal dumping -- absent chelation -- as well. Susan didn't respond to that question and I was curious if there was a theory about it? I guess improvements long-term maybe are confirmation enough that the stuff is leaving the body?

Thanks!

Florence

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One question for you and the rest of the folks here: I am still having daily shin burning. It gets worse in the evening, but seems to flare up after I eat any time. Does this ring any bells for you guys? The shin burning was really bad in the first couple of weeks and now it's not so intense, but it's continuous and getting old.

I cant say for sure but my own experience with burning skin seems to always be related to neurotoxins. I think in my case its mostly caused by mobilization of the metals. For me the burning can be anywhere but its primarily on my upper body...face, shoulders, arms and upper back. Occasionally I might feel it on my shins or feet.

Dr. Klinghardt is probably the most experienced Dr. in the world when it comes to mercury detox.

These are his words:

When the pain is burning in quality or numb-like; there are areas you can touch and still feel, but it doesn't feel quite right; that is mercury unless proven otherwise.

The key neurological symptoms are pain that is either combined with areas of numbness or is burning in quality. These are my criteria. I had a pain clinic for 12 years. I got onto the mercury issue through having a pain clinic and realizing that the patients that were not getting well were usually mercury toxic patients.

He also says this...

By doing detox, very often we find that allergies go away. It goes hand in hand.

GI effects - the whole list of food sensitivities - : that's been the big joke in our family of practitioners, when you do a food allergy diagnosis with a mercury patient, you are going to have out of 600 foods that you test, they are going to be allergic to 485 or 520.; there are very few foods left. The route that everybody else is going down is to leave the foods away. We detox the patient and let them eat what they want to eat. Because you will see that when you detox the patient that one food after another drops off the list of allergic foods.

That was from a talk that he gave....I can provide a link to the whole thing if you're interested.

Another question for the group: someone over at the yahoo group asked why we had reason to believe that the oxalates would "dump" (through GI or urinary tract or skin, I guess) rather than just relocating and causing trouble elsewhere. This obviously relates to the metal dumping -- absent chelation -- as well. Susan didn't respond to that question and I was curious if there was a theory about it? I guess improvements long-term maybe are confirmation enough that the stuff is leaving the body?

Personally, I dont think that a flare-up of symptoms followed by "feeling better" proves that toxins were effectively eliminated. There is some amount of mercury that is *always* redistributed on a detox program....if there is no detox program taking place then its more likely that most of it will be redistributed.

Once the metals are out of the bloodstream and not on the move....because they've settled somewhere else...the "flare-up" would subside. This obviously doesnt mean that there is improvement overall....in fact things could be worse if the metals are redistributed to areas where they're causing more damage to organs or to the brain.

I think it would be the same with oxalates as with any other toxin in the body....if the body isnt able to eliminate them....they get reabsorbed and redistributed. If the body was able to efficiently detox these things...we wouldnt be sick in the first place....second, we would not be having symptoms if everything was moving out w/out any redistribution.

I know for sure that I *feel* alot better by eliminating so many foods/toxins and I appear to be "normal". I'm not even close to where I was a few years ago...when I couldnt even get out bed. I work 40 hours, I run around laughing and joking, I look healthy, I have tons of energy....YET I still cant eat anything. The problem is *still* there...I'm just managing it. Yes, it seems like I've gained alot of ground but I know that I'm not healthy...I definately still have major issues.

It doesnt make sense to me that I'd have to stay on restricted diets to feel good...unless there was something occuring in my body preventing me from tolerating things as I once did. I dont think that after 31 years of good health my body suddenly couldnt tolerate all these foods...including the oxalates...why would that happen??

Antibiotics werent a factor in my case. I was never taking antibiotics prior to becoming symptomatic.

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And that brings up an important oxalate point. Susan Owens is thinking that it's possible that the reason these kids, and many adults, are hanging onto such a high metal load is that the metals are trapped in the oxalate. We talk about metals "being trapped in tissues," but just how are they trapped there? She is wondering if the oxalates are the trapping mechanism. And then when oxalates are dumped out, the metals are not redistributed, but are dumped out as well. She speculates this because so many of the autistic kids are making such great gains on the diet. There is no evidence of metals just redistributing in the body, but it looks like the metals are being chelated. This is exciting stuff, but they don't have the research to prove it yet.

I think this can easily be determined with both provoked urine challenges and hair analysis while embarking on the LOD. Same as with chelation....progress can be determined with these tests...the hair analysis can be extremely valuable.

In a mercury toxic patient the hair analysis may not show elevated levels if the person is not excreting and if all mercury is stored away. In this case the essential minerals would most likely be totally out of balance. Essential minerals are thrown out of balance when a person is mercury toxic. That was the case with my own hair anaysis results.

Once you begin an effective chelation therapy you can monitor the levels through the urine tests as well as repeating the hair analysis every so often. If you see that the mercury levels are going up and at the same time the good minerals are getting more into the normal range....it means the treatment is working. Once you can see those mercury levels peak...and then come down and the good minerals are well balanced in the normal range...you can be pretty sure the treatment was effective. If at the same time theres nothing else coming out in the urine challenges theres a good chance you've successfully chelated the metals.

I dont see any reason that this method would not work in determining whether or not the LOD is effectively chelating metals from the body.

It would be very easy to determine the effectiveness that LOD had on reducing metals in the body with proper testing by a Dr. who is very knowledgable with understanding these tests.

Also....if you are open to alternative things...ART (autonomic response testing) which was developed by Dr. Klinghardt is very accurate at locating metals in the body....even when they arent coming out in challenge tests. One of my Dr.'s uses this method of testing and I will continue with it until I'm can know for sure that the metals are out.

As far as I know its the only test available to determine exactly where metals are located in the body. Its how they were able to tell me where the metals as well as certain infections were all hanging out...which was mostly in my head and gut.

These tests could give an answer to Susan Owens theory about the metals.

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The hyperoxaluria studies I read did these urine tests regularly and were able to map the rise and peak and fall of oxalates in the urine. In fact, I think the main studies I read were testing the efficacy of O. formagines -- that aneorobic probiotic that healthy guts have and is designed to break down oxalates. People given O. formagines who had either kidney stone-related or gut-related hyperoxaluria would dump the oxalates for a few weeks afterwards. I think it peaked like at 21 days.

There are a lot of folks over at the yahoo group who are eagerly awaiting the manufactured version of O. formagines, currently going through FDA approval.

In my case, it was almost certainly antibiotics combined with extreme exhaustion and a terrible case of rotavirus that did me in. No correlation to mercury that I can find, though of course I probably have it in my system, just that there was no new insult on that front that I can identify.

F

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Theres really no way to determine whether or not heavy metals are an issue without having the testing done...and even then its sometimes not clear.

We're all exposed to the heavy metals...its just a matter of how well we're able to detox them and how heavy the burden is.

If someone has a heavy load of mercury in the gut taking antibiotics can potentially have very damaging effects. Once I became symptomatic antibiotics I was given dramatically worsened things for me. In my case the problem was already there...and already starting to escalate....the antibiotics caused everything to explode....especially the candida. :(

I think I'm worse for having the antibiotics...but I was still sick to begin with....otherwise I wouldnt have even been getting the antibiotics from the Dr.'s in the first place. I never had prescriptions filled while I was healthy all those years...I never even took anything OTC. I was symptom-free and there was no need.

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Did I read somewhere there is urine test to show if your detoxing oxalates?

My dr was hesitant to do it so i think there is.

Florence is this what you were referning to?

"""""""""The hyperoxaluria studies I read did these urine tests regularly and were able to map the rise and peak and fall of oxalates in the urine. In fact, I think the main studies I read were testing the efficacy of O. formagines -- that aneorobic probiotic that healthy guts have and is designed to break down oxalates. People given O. formagines who had either kidney stone-related or gut-related hyperoxaluria would dump the oxalates for a few weeks afterwards. I think it peaked like at 21 days. """"""""""""""'

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I think the urine test is one of those that you save for a week in a jug, remember how fun the last one was for you? LOL.

I am one who is eagerly awaiting FDA approval for the o. formigenes. The longer I am on the LOD, the clearer it becomes to me that this is a very serious issue for me. If I even have a teeny bit of bell pepper, sweet pepper, or potatoes, the pain in my joints lets me know that I can't tolerate it even with the calcium citrate. The dumping episodes are becoming more of a pattern. One thing that I notice is that increased activity, with a lot of muscle use, seems to cause a sort of release in that muscle group sooner. For example, one day last week, I was using my hands a lot scraping a table I am refinishing, and that night I had extreme pain in that hand just like before with fibro, but the next morning, it was gone completely! It is almost like the activity, coupled with the LOD and the calcium citrate, is making it all looser and working its way out of the muscles and myofascia.

Regarding metals-if metals are the main problem, and you don't have a huge buildup of oxalates in your tissues and are not having chronic D from high oxalate foods, then that should be the focus of your treatments, but if you are like me and have FM and a severe intolerance of oxalate containing foods, then metals aren't your main issue--getting rid of the crystals that are filling your life with constant pain is the main issue. It becomes especially important to deal with oxalates first when you start to have liver, kidney, bladder, eye, or reproductive damage.

One real fear is more autoimmune diseases cropping up, which is what I am dealing with in the eyes-chronic uveitis, or sometimes called iritis.

I think we have just scratched the surface of the links with autoimmune disease and oxalates.

In a recent issue of National Geographic (this summer, I believe-will check if anyone is interested) the topic of metals, toxins, and the effects on our bodies was the focus --most Americans have metals of some kind in their tissues. It seems to me that the condition of your immune system and intestines would have a huge bearing on how they affect us individually. Getting the oxalates under control has made a huge difference not only in the way I look and feel, but also in my thinking and handling stress, so I am hoping to keep this momentum and continue to strengthen my immune system enough to then deal with whatever else is floating around in my body. The main thing is that brain fogginess is gone and that says a lot about what affect the oxalates are having--if you have this symptom, and you can suddenly think clearer and focus, then oxalates should be your main concern, Imho. Anything that attacks my nervous system in such a profound way can't be ignored. People joke about FM and celiac brain fog, but I sincerely believe it is something that potentially can lead to permanent damage of our nervous systems.

Keep strong friends and keep LO--we will get our o.formigenes back one day soon and when we do, I will be eating mashed potatoes with gravy every day, lol.

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tHANKS SOOOOOOOOOOOOOOOOOO MUCH GLUELESS FOR YOUR THOUGHTFUL POST ;)

IT IS JUST WHAT I NEEDED TO READ BEFORE I WENT TO BED.

iT REALLY HELPED ME. :)

LOVE YA

JUDY

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The hyperoxaluria studies I read did these urine tests regularly and were able to map the rise and peak and fall of oxalates in the urine. In fact, I think the main studies I read were testing the efficacy of O. formagines -- that aneorobic probiotic that healthy guts have and is designed to break down oxalates. People given O. formagines who had either kidney stone-related or gut-related hyperoxaluria would dump the oxalates for a few weeks afterwards. I think it peaked like at 21 days.

What I'm curious about is whether or not the oxalates continue to be problematic?? Taking something that would help to eliminate them would definately cause a rise in the testing....same with chelation. If I kill yeast there will be an increase of dead yeast that my body needs to eliminate.....however it doesnt totally solve my yeast problem. I'd have to still avoid the foods which fuel it in order to not have it come raging back.

So what I'm wondering is does anyone on LOD ever go back to consuming these foods without having problems??

If not...it would seem that theres something else going on to prevent that from happening. I know that as long as metals are in the body the yeast problems are never completely resolved. So would it be the same with oxalates or do people who take O. formagines regain their health and no longer need to keep a restricted diet??

When metals are in the body any toxins or "bugs" can get hung up in the areas where there are lots of metals....this is what ultimately ends up increasing the toxic load. Its an inability to detoxify and the problem of these toxins and infections really locking each other up in the body. They're all tied in together. I cant imagine that there would be a heavy load of oxalates in the tissue without these other things which go along with it...particularly the metals.

Even with the probiotic it seems like oxalates would still be a problem if everything else is still left untreated. If the gut is still leaky and if the metals are still there....wouldnt some oxalates continue to bind with them just as the yeast and molds do??

I feel like my gut instinct says that none of these problems go away as long as the root cause remains. I will definately do anything to improve my situation and I've come very far with what I've already done. LOD is one more thing that helps but I just wanna be able to eat again..without all of these restrictions. I dont think its healthy to have to avoid so many foods. :(

I see that people get better and lose these intolerances when they detox the metals and treat the infections. I'm not saying it cant happen any other way but I just never see it. I do hope that the probiotic can make a difference for alot of people but I dont think it would be *the* answer for me. I would definately take it if it helped with the food intolerances.

What are the details about the probiotic?? When does it become available?? Has anyone with the issues of leaky gut, yeast, food intolerances, etc...taken this with good results?? Have they tried it with any of the autistic kids? My situation isnt related to kidney stones or vulvodynia so I'm not sure if I would have the same benefit.

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Keep strong friends and keep LO--we will get our o.formigenes back one day soon and when we do, I will be eating mashed potatoes with gravy every day, lol.

Robbin...mashed potatoes and gravy sounds REALLY good!!! :D

I'm glad to hear that you're continuing to feel better and better...I can *feel* your excitement in your posts! :)

When does the probiotic become available?

My brainfogginess is pretty much gone too!! My mom was just pointing this out today...because I had headphones on (listening to music) as I typed out a post. There is NO WAY I could do that awhile back....if someone even spoke to me I would lose all focus...it would take me awhile to get "back on track".

I dont have problems concentrating at work either. I do really well with everything compared to a year ago.

Theres alot of foods that are not high in oxalates which still cause me problems....so I've had to eliminate MANY things....but I feel pretty good. I very much look forward to getting off these restricted diets though. Thats when I'll really start LIVING again cuz I'll have so much more freedom. :)

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Here's a quick sample of the lit on O. formagines...

It's is undergoing FDA approval and we don't know when it will be ready -- though maybe I"ll contact the FDA and see if they can say anything about timeline. It will be prescription only and approved for kidney stone prevention. Other treatments will be off-label use -- which I imgagine there will be a lot of. So it hasn't been tested on ASD kids or people with gut problems, but the research already done shows that people with oxalate-related gut problems (enteric hyperoxaluria) -- including people with IBD, Crohn's, celiac, bypass surgery, etc -- should get relief from it.

1. Here's a study basically saying that taking antibiotics kills O. formagines:

http://www.liebertonline.com/doi/abs/10.1089/end.2005.19.102

2. This one says kidney-stone formers have low O.formagines in their guts and that colonization by this bacteria works to re-introduce it from oral doses:

http://www.liebertonline.com/doi/abs/10.10...277903321618743

3. This one talks about an easy fecal test that can determine precise levels of O. formagines in the gut:

http://www.pubmedcentral.nih.gov/articlere...cgi?artid=84815

4. This one's a good overview and also shows how they confirm that O.formagines is doing it's job in breaking down oxalates in the gut -- comparing how it's excreted before and after. Conclusion: A single oral ingestion of O. formigenes by adult volunteers was, for the first time, shown to result in (i) reduced urinary oxalate excretion following administration of an oxalate load, (ii) the recovery of oxalate-degrading activity in feces, and (iii) prolonged retention of colonization.

http://www.pubmedcentral.nih.gov/articlere...gi?artid=124017

If you google "enteric hyperoxaluria" it will give other studies that hook up the oxalate stuff to the gut stuff, as opposed to the kidney stone stuff.

My own uneducated opinion is that whether this oxalate diet is a permanent thing or temporary depends on WHAT made you sick in the first place. If it's antibiotic damage and the LOD combined with supplements and eventually with O. formagines colonization, then it seems to me the gut could heal and the body's ecology could be restored to normal and could therefore go on to eat whatever you ate before.

If there are other factors, like you say Rachael, viral load, heavy metals, etc, then those have to be dealth with too I guess. Though I do think SOME of this stuff has synergistic effects -- like that people have been able to rid their bodies of yeast and parasites through balancing gut ecology nutritionally without having to directly kill the yeast or parasites with poisons.

Some people with genetic auto-immune disorders may manufacture oxalates endogenously -- some people suspect that some ASD kids fall into this category -- in which case LOD may be a forever thing just like for celiacs and gluten. Anyway, I think there's no answer to that question except the specific ones we find in each of our individual cases based on how we got sick and how well we heal.

xoxo

Florence

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Reluctantly, because I'm tired of having problems with food, I looked at this thread and it is exceedingly interesting. I guess I will remove a few more things from my already lackluster diet to see if I see benefit in the end. I have been gluten, soy, legume, dairy, corn , nightshade free for one year and a half. But I continue to have some issues. Recently eating more almonds, berries, cheddar cheese, tomatoes and rice . Much of this makes sense in terms of things I've known always to bother me. My persistent symptoms are bloating and abdominal pain and deep left hip pain; I also have a fibroid which has grown in six months fro 4 cm to 7cm and Gyn wants hysterectomy- I DON'T!!! But I'm sick of pain and food issues.

Thank you for the thread and the astounding amount of info here. I guess I'll give it a go.

lisa

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Lisa,

Keep us posted how it goes!

I also have chronic deep left hip pain -- I guess it's trocanteric bursitis for me, also elevated rheumatoid factor and sore knuckles. It comes and goes with the gut problems. Some days no pain, some days debilitating.

I've had a setback after over a month on this diet -- sick the last few days like in the old days. Diarrhea, bloating, pain, cranky. I can't tell if it's from adding corn back in or starting on capryl a few days ago or from some cheese inadvertently stuck into eggs I ate.

Have you tried MSM for the joint pain?

Best to you,

Florence

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Thank you, Florence!

What is MSM? Yes, my left hip issue is sometimes gone, sometimes there with a vengeance. (especially at night) The bloating has just been ridiculous for about 3 weeks after 3 glorious months with just a few "glutenings" and predominantly feeling well! Sheesh- it doesn't end, eh? But I know people have it worse than me. I have to have another transvaginal ultrasound Friday (every six months) to find my unfindable ovaries and see what it all looks like in there and to measure the stupid fibroid.

Thank you for this thread.

lisa

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MSM - I don't remember what it stands for and the bottle is downstairs. But you'll find it in the joint/bone health section of any health food store, along with the glucosamine and chondriton and stuff like that.

By they way, seems that melatonin, naturally elevated in our bodies at night, is what makes the pain worse at night. I took melatonin to help me sleep for months before I read that it was making my joint pain worse -- and it did indeed get better by at least half when I stopped.

Hey you all, I can't find the VP Foundation online anymore! There were just there last week! Their 2005 version of their book is called Low Oxalate Diet Cookbook #2 -- I just ordered it through Amazon, but sheesh it was OVER $50. Isn't that excessive?!?

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MSM - I don't remember what it stands for and the bottle is downstairs. But you'll find it in the joint/bone health section of any health food store, along with the glucosamine and chondriton and stuff like that.

By they way, seems that melatonin, naturally elevated in our bodies at night, is what makes the pain worse at night. I took melatonin to help me sleep for months before I read that it was making my joint pain worse -- and it did indeed get better by at least half when I stopped.

Hey you all, I can't find the VP Foundation online anymore! There were just there last week! Their 2005 version of their book is called Low Oxalate Diet Cookbook #2 -- I just ordered it through Amazon, but sheesh it was OVER $50. Isn't that excessive?!?

Welcome Lisa.......glad to see some new folks joining us..........

Florence i just looked it up on amazon too........i agree :ph34r:

First they screw us with gluten-free food and now this..................yaaaaaa.........(as she throughs a temper tantrum on the floor) :lol:

I was trying to find out when it was published and see if it's that new and if the food lists are the same.

if it was gluten-free and dairy/casein free........I'd be tempted but geess..........

Hey......Florence is that book really worth the $50.00? Do you have it or have you actually scene it?

oh by the way......if you have a shell fish allergy........one or the other of the glucosamine and chondriton supplement is made from shell fish shells.......? at least that's what my research found years ago. Couldn't figure out why I was itching all over..........

love you guys

Judy

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