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jerseyangel

Oxalates And Nightshades

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Hi Robbin, good to see you "back"! Thanks for the link!

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Oh and there was some discussion about tissue growth...I had that enlarged ampulla (it's the opening in the intestine where the bile and pancreatic ducts meet and empty into the intestine) that they found last year...so the discussion on the possible connection between oxalates and tissue growth is pretty interesting to me. I don't eat a lot of oxalates normally, but I crave foods with them in it. I'm pretty sure many of my 30 or so supplements are also high in it. :(

thanks for your personal story too

i think these really really help us all.

were you ever tested or the 'sphincter of oddi' mentioned to you?

San is having these issues too.

learning so much from you all

thanks

judy

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Wow, after reading Donna's story (which I actually already knew, but had never read it like that all in one place :D ), it's unreal how a lot of these things overlap and also affect so many of us.

Donna--you know that I had those horrible sinus problems--that what all of the antibiotics I took were for. The hysterectomy--same thing.

Robbin--Thanks for the confirmation. That this keeps coming back was a little unnerving :unsure: I ate some chocolate yesterday along with some popcorn and am in pain today. I didn't realize about the popcorn--I had to look it up :P Florence, my shins are killing me right now--especially down low.

All I can say is thank you to all of you for joining forces and trying to make some sense of this thing. I'm so grateful to each and every one of you :)

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thanks for your personal story too

i think these really really help us all.

were you ever tested or the 'sphincter of oddi' mentioned to you?

San is having these issues too.

learning so much from you all

thanks

judy

Thanks Judy...nope never been tested for it and don't remember the GI even mentioning it. He found it by "accident" while doing an endoscopy (checking for celiac damage). Mine was HUGE. He couldn't reach it with the equipment he was using so I had a second endoscopy a week later so he could get a biopsy. That biospy showed that my cells looked possibly pre-cancerous, but after showing it to three different pathologists they weren't sure. He put me on Prilosec for a couple of months to see if it would affect how the cells looked. So after 3 months of the Prilosec I had another endoscopy for another biopsy. I never saw the results of the last one, but he said they concluded it was not precancer. I've not had any pain that I could specifically link with that area, but I've had that burning hunger feeling that I've seen described--mine happens in the middle of the night mostly but sometimes during the day. Eating does make it feel better, but I can tell that it's not hunger.

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Thanks Judy...nope never been tested for it and don't remember the GI even mentioning it. He found it by "accident" while doing an endoscopy (checking for celiac damage). Mine was HUGE. He couldn't reach it with the equipment he was using so I had a second endoscopy a week later so he could get a biopsy. That biospy showed that my cells looked possibly pre-cancerous, but after showing it to three different pathologists they weren't sure. He put me on Prilosec for a couple of months to see if it would affect how the cells looked. So after 3 months of the Prilosec I had another endoscopy for another biopsy. I never saw the results of the last one, but he said they concluded it was not precancer. I've not had any pain that I could specifically link with that area, but I've had that burning hunger feeling that I've seen described--mine happens in the middle of the night mostly but sometimes during the day. Eating does make it feel better, but I can tell that it's not hunger.

WOW DONNA.

JUST SPENT 2 HRS TRYING TO DO A LIST SERV POST FOR HER AND IF YOU SEND ME YOUR EMAIL ADDRESS I CAN SEND TO YOU TO LOOK AT THIS LIST SERV IS SO HARD FOR ME TO USE AND DIDN'T PRINT OUT LIKE I SENT IN.

MINE WILL BE EASIER FOR YOU TO READ AND MAYBE YOUR INFO CAN HELP HER.

THANKS SO MUCH DONNA MAYBE WILL HELP HER AVOID THIS AWFUL AND DANGEROUS TESTING.

JUDY

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Thanks Judy, pm'd you my email address.

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Oxalates, gout and bone pain!

Hi you all, I was googling around to see what this shin burning pain might be about and came across some stuff about gout and "pseudogout."

It seems to me that the oxalate dumping might be bringing on gout-like inflammation and also that prior to LOD, joint inflammation could very well be oxalate-related in the same way gout causes joint pain.

Gout and pseudogout deal with other chemicals forming painful crystals (like uric acid) -- but they also lead to kidney stones and sore joints -- most notably that base of the big toe and big thumb joints! Seems like the same process at work here.

In our cases, let's hope it's transient while the oxalates get out. But I think that might be the shin pain as well. My left hip bursitis is also hurting more today.

The gout info online says it mimics rheumatoid arthritis symptoms.

Interesting!

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Please forgive the info overload -- I'm out scouring for new stuff.

Below is an abstract from a 2005 Kidney International journal article...the probiotic they use in the study is made by the same folks (VSL) who make the VSL#3 that the "trying low oxalates" yahoo group recommends (and that just arrived on my doorstep and I'm going to start taking tomorrow).

"Use of a probiotic to decrease enteric hyperoxaluria.

Background

Patients with inflammatory bowel disease have a 10- to 100-fold increased risk of nephrolithiasis, with enteric hyperoxaluria being the major risk factor for these and other patients with fat malabsorptive states. Endogenous components of the intestinal microflora can potentially limit dietary oxalate absorption.

Methods

Ten patients were studied with chronic fat malabsorption, calcium oxalate stones, and hyperoxaluria thought to be caused by jejunoileal bypass (1) and Roux-en-Y gastric bypass surgery for obesity (4), dumping syndrome secondary to gastrectomy (2), celiac sprue (1), chronic pancreatitis (1), and ulcerative colitis in remission (1). For 3 months, patients received increasing doses of a lactic acid bacteria mixture (Oxadrop

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FLORENCE,

:::Manipulation of gastrointestinal (GI) flora can influence urinary oxalate excretion to reduce urinary supersaturation levels. These changes could have a salutary effect on stone formation rates. Further studies will be needed to establish the optimal dosing regimen." """

DO YOU THINK THIS CAN THE BE CAUSE OF THE 'NITE' URINE DUMPING I HAD LAST NITE??? :blink: DON'T EVEN KNOW IF IT'S RELATED..............JUST A THOUGHT

ANXIOUS TO HEAR HOW THE

VSL#3 WORKS FOR YOU

HUGS

JUDY

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I got some high potency biotin (5mg)....I'll be trying it to see if there is any improvement.

I dont usually take anything that hasnt been muscle tested for me first but I'm just gonna try it out and have them test me for it later.

I'm doing it to try to reduce fungal yeast because of studies showing that Biotin deficiency causes yeast to change to the fungal form....and high doses of biotin prevents this.

I'm not holding my breath but I'm definately gonna try it. :)

Heres some quotes..

A primary source of Biotin is the healthy bacteria in the intestinal tract. Because these are often comprimised by a Candida Albicans overgrowth, candida sufferers are particularly prone to a Biotin deficiency.

From "Candida, The Symptoms, The Causes, The Cure" by Dr. Luc DeShepper "in order....to avoid the spreading to the bloodstream, and thus giving the opportunity for the yeast cells to invade almost all of the organs, the interruption of the vicious cycle is a must and a priority.

Yamaguchi reported that extensive mycelial formation of c. albicans when grown in a medium with a suboptimal concentration of biotin (0-1 ng/ml) as compared to primarily yeast cell growth in optimal levels of biotin. "Mycelial development and chemical alteration of Candida Albicans from biotin insufficiency."

Biotin is the weapon in our hand. Biotin taken in the amount of at least 3 Milligram will cut the transformation cycle from the yeast to the fungus form......

http://www.flora-balance.com/Biotin.htm

I urge you to do some research if you feel you may be experiencing symptoms of candida overgrowth. My personal opinion is that candida can be a very severe illness, it is a immune system suppressant, and many now believe that it usually becomes systemic, spreading to the liver, lungs, and other organs.

There is excellent evidence that Biotin can prevent candida albicans from becoming systemic (transforming to the fungal form).

Biotin appears to be beneficial in limiting the growth or the fungal or systemic form of candida albicans. Yamaguchi reported a reduction in the mycelial (fungal or systemic form of c. albicans) formation of c. albicans when grown in a medium with a optimal concentration of biotin (>1 ng/ml), growth was limited to primarily the yeast cell form.

Biotin supplementation appears to be an excellent strategy for preventing the systemic growth of c. albicans.

http://www.flora-balance.com/whatotexpect.htm

I'm already on the diet and antifungals.

Also....anyone know if uric acid has anything to do with oxalates??

Lab results from 2004 have abnormal results for uric acid....the blood levels were too low rather than too high. :huh:

Guess I'm not at risk for gout but WTH??

What could it mean??

The lab said the low result was repeated and confirmed. The Dr.'s werent concerned because it was low...not high.

The explanation says..."Uric Acid tests for a waste product in the blood.

So I have no waste product?? :huh:

Ummm...I'm thinking that CANT be right....pretty sure I've got more than my fair share of waste. <_<

Does it mean I'm holding onto things that I should be letting go of?? They obviously werent circulating in the blood. In 2004 at the time of this lab test I was very sick.

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Here's a question:

What do you think about us all sharing the list of supplements we're taking? Maybe we would learn something from each other's regimens?

...

I'm taking calcium, magnesium, Vitamin D, B - methycobalim tablets, whey powder, and I just tried some bee pollen today but after reading this thread I am thinking about adding biotin.

...

I have been very interested in a product/supplement called Ip6 with inositol. It is derived from rice bran, but from what I have been able to dig out of what is on the net, it does not contain oxalates, but it will deplete calcium and magnesium unless you take it on an empty stomach. It also BINDS oxalates! Besides the oxalate binding, another reason I am interested in this supplement is because of its powerful immune building properties in regard to bacteria and pathogens and its chelating properties in regard to metals. I understand it is being given as an adjunct supplement to cancer patients and has been found to actually halt cancer cells from replicating. Anyone know about this or taking it?

I bought some, but haven't started it yet, but am desperate to try to get this whole process accelerated because of the problems with my eyesight. It isn't too expensive, and it is gluten free, soy free, yeast free, dairy free.

And I am thinking of trying the Ip6 with inositol.

So wonderful to find you here Robbin and the improvements you have made are incredibly encouraging.

Judy, you mentioned wet nights, I've had extreme (for me) night sweats since starting on the low-oxalate diet but we'll see cause today I ate some chocolate. :o I did have big toe pain one day but no shins burning yet.

Rachel, great to have your scientificness applied to this subject.

Hello to those of you I haven't gotten to know yet.

Briefly, I have a long history of problems with gluten that may have been triggered by mono and the ABX I took for it at 17, migraines in my twenties, boils in my thirties, in my forties a tick bite the winter of 2003 triggered a steep decline in my health resulting ( two years later) in complete gastric inflammation. That was two years ago, a year ago in May I went gluten and dairy free and saw some improvements but continue to live with a lot of pain wrapping round the torso.

During that two years I had deep bone pain that moved around my body, dizziness, low levels of Vitamin B and D and various other conditions I am too tired to recall.

I've also got something in my kidney, multiple fibroids in one ovary, and I had a fibroid removed from my left breast (which is where they removed a fibroid thirty years ago) last year.

Okay, I am way too tired to be up and no longer functional.

Thanks so much for this thread, and thanks for all the information. I am learning a lot. :)

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Oxalates, gout and bone pain!

Hi you all, I was googling around to see what this shin burning pain might be about and came across some stuff about gout and "pseudogout."

It seems to me that the oxalate dumping might be bringing on gout-like inflammation and also that prior to LOD, joint inflammation could very well be oxalate-related in the same way gout causes joint pain.

Gout and pseudogout deal with other chemicals forming painful crystals (like uric acid) -- but they also lead to kidney stones and sore joints -- most notably that base of the big toe and big thumb joints! Seems like the same process at work here.

In our cases, let's hope it's transient while the oxalates get out. But I think that might be the shin pain as well. My left hip bursitis is also hurting more today.

The gout info online says it mimics rheumatoid arthritis symptoms.

Interesting!

Thanks for this Florence. Again, I see a definate link for me with this.

Back starting in about 2003, when I was still eating everything including gluten, I would wake up in the middle of the night with excruciating pain in my big toe. It was horrible. It would last a while, begin to subside and I'd fall back asleep. This would happen once a month or so.

At the time. I figured it might be gout--my grandfather had it so maybe I did, too.

Ever since I've been gluten-free and adjusted my diet, I've had no more of these toe attacks. I still have the thumb pain and inflammation that I talked about before.

The hip pain was also much worse before my diet change. It got to the point where it was painful to turn over in bed. Strangely, that was my right hip--now, it's the left one that is bothering me.

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Rachel -- that's amazing news about biotin and candida. Double extra reason to try it out!

Patti -- funny, I had right hip pain worse for about a year and now it's on the left too. I read somewhere it's worse at night in general because our melatonin levels naturally increase in the wee hours and melatonin increases inflammation (which is why I had to stop taking it for sleep).

Judy -- are you taking a probiotic? That seems to be what the study says -- that the VSL probiotic helps get the oxalates out of the body.

Interesting thing last night -- after two and half days of nagging burning shin pain, it suddenly stopped last night right before I went to bed but was immediately replaced by an incredible itching on the skin right over the shin bone. The itching lasted about a half hour and then all was well.

I've also noticed passing extreme tenderness in the acupuncture points down the outside of my leg. They'll get incredibly sore for an hour and then not sore at all.

I wish I could SEE really all that's going on inside because it seems very busy!

Side question: someone on here mentioned that Oolong tea is low oxalate...can I ask what list that was off of? I really want to drink it but am afraid because all the lists I see show black tea as high oxalate.

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Side question: someone on here mentioned that Oolong tea is low oxalate...can I ask what list that was off of? I really want to drink it but am afraid because all the lists I see show black tea as high oxalate.

Florence,

I use this list--

http://patienteducation.upmc.com/Pdf/LowOxalateDiet.pdf

Oolong tea is listed there in the low oxalate beverage section.

I may have mentioned this before, but oolong tea is also helpful for eczema. (Drinking it, not applying it :D )

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Gout and pseudogout deal with other chemicals forming painful crystals (like uric acid) -- but they also lead to kidney stones and sore joints -- most notably that base of the big toe and big thumb joints! Seems like the same process at work here.

I forgot to mention the toe pain. That has increased significant over the last few months so the point that it is very painful to walk sometimes. I hadn't thought about gout, but it could be I guess. I've been eating chocolate... :ph34r: I eat lots of fat too. :ph34r:

Rachel - interesting on the Biotin. I'm sure it's in some of the vitamins I'm taking...I'll have to go home and tally up exactly how much I'm getting.

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hi

still such new info on a daily basis.......thanks soooooooooooo much you guys

esp your stories.

i'm copying all them now and putting in one file................it's amazing to me that us 'oldtimers' have such a 'overlap'

renni.........my wet nights are not 'night sweats' if you get my drift??????????/ :ph34r:

but last nite wasn't AS bad but still dumping urine.

i wrote my profile on one of the threads on c.com 2 years ago when that one dr was taking all our symptoms /stories and profiling them.........wish i could find that list...........hrs to re do is not in the cards for me right now.

i know for me NOW choc is at the top of the NO list and of course wasn't 5 months ago as i did ok on the toll house chips then the dairy went and replaced with the 'ok'd ones' but now ........nada...

i take probotics and have for years from the chiro. boost the dosage when i take the rare abx for celluitis.

hugs all....................so thrilled this thread is moving forward and NO glitches..........and i didn't jinx it as no one wants to 'disrespect' our fearless thread creator.............. :lol: patti you rock girl.

judy

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jerseyangel,

I think that every time I pop back in on the site, I am always amazed that SOMEONE out there feels the things that I do :) I too had the horrible pain in my big toe, but I kept it to myself because I felt it was just another thing that I was "complaining" about. The Drs always seemed to brush off my symptoms, or telling me that "you're geeting older". Ugh....I am so tired of hearing that. So does that mean you should be falling apart on a daily basis?? Come to think of it, I haven't felt that pain in a few months, do you think it was from the gluten? Janet

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jerseyangel,

I think that every time I pop back in on the site, I am always amazed that SOMEONE out there feels the things that I do :) I too had the horrible pain in my big toe, but I kept it to myself because I felt it was just another thing that I was "complaining" about. The Drs always seemed to brush off my symptoms, or telling me that "you're geeting older". Ugh....I am so tired of hearing that. So does that mean you should be falling apart on a daily basis?? Come to think of it, I haven't felt that pain in a few months, do you think it was from the gluten? Janet

Hi Janet,

I don't know if it was from the gluten, it hasn't happened since I've been on the diet.

I hear you about the doctors. I've had my share of some doozies, let me tell you. <_<

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Donna...be careful of B-vitamins...I dont know if you're taking a multi or not but alot of them come from aspergillus.

What test did you have for aspergillus?? Was it for allergy or actual infection? If its an infection how are you treating it?? I'm assuming it was Dr. S. that tested you. My appt. with him is next week....I have my CT scan later today.

I dont know know if he'll go ahead and prescribe Sopranox or Ampho B... but I'm hoping that he'll let me try it.

I used to have the big toe pain too. :huh:

Its been a long time since I've had that...over two years now. It went away when I restricted my diet...since I eliminated so many things at once its impossible to say what caused it.

Actaully its my mom who gets this pain in her toe now (like a cramp).

I had never experienced it until I got sick.

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Also....anyone know if uric acid has anything to do with oxalates??

Lab results from 2004 have abnormal results for uric acid....the blood levels were too low rather than too high. :huh:

Guess I'm not at risk for gout but WTH??

What could it mean??

Rachel,

This just posted on yahoo group -- seems might explain your labs, or at least document that this happens. If the blood levels are low, then it may be they are trapped in your cells?

Listmates,

This aritcle points out that those who were collectng more uric acid in

kidney tissues were not the ones with the highest excretion of uric acid

but were the ones with lower excretion and a higher serum to urine uric

acid ratio. We may see something similar in the autism population if

doctor's were to order the serum (or plasma) oxalate test. I am saying

this just so no one supposes that normal urinary levels of oxalate will

automatically mean that someone does not have a problem with collecting

oxalate in tissues.

Oxalate issues and gout or pseudogout issues can go together, but this

study was separating these issues.

Susan

Urol Res. 2007 Oct;35(5):247-51. Epub 2007 Sep

6.<http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&DbFrom=pubmed&Cmd=Link&Lin\

kName=pubmed_pubmed&LinkReadableName=Related%20Articles&IdsFromResult=17786420&o\

rdinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbst\

ract>Related

Articles, Links

<http://www.ncbi.nlm.nih.gov/entrez/utils/fref.fcgi?PrId=3055&itool=Abstract-def\

&uid=17786420&db=pubmed&url=http://dx.doi.org/10.1007/s00240-007-0109-1>

Click here to read

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Sorry, how do you guys do that "quote" thing you do?

Those were Rachel's words at the beginning of my last post.

F,

To do a quote, hit "reply" in the lower right corner of the post you want to respond to. Begin your response after the "quote".

You can also go in and delete any parts of the original post that you don't want to appear in the quote.

Make sure that the quote lines (the ones in [ ] ) remain at the beginning and end of the original post.

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Donna...be careful of B-vitamins...I dont know if you're taking a multi or not but alot of them come from aspergillus.

What test did you have for aspergillus?? Was it for allergy or actual infection? If its an infection how are you treating it?? I'm assuming it was Dr. S. that tested you. My appt. with him is next week....I have my CT scan later today.

Yep, it was Dr. S. He did a blood test...I'll have to go home and look at it and see exactly what was tested. It's also come up a bunch of times with Anna. ART has found unnamed infections of all kinds. :( So far Dr. S isn't really treating me for anything. :( I got the impression he didn't want to do much until the mold thing was taken care of, but I'm going to specifically ask about treatment for something next time I see him (December), lol.

Sorry, how do you guys do that "quote" thing you do?

You have to surround the portion of text with HTML code. for instance at the beginning of the part to be quote you would type

(but with no space between the e and the ], and at the end of the portion to be quoted you would type [/quote ] (again without the space between the e and the ]).

You can also hit the "quote" button at the bottom of each post...you can keep doing that for all posts you want to quote, then when you hit the main reply button at the bottom of the page, all the quoted text comes up in a window. You can then delete out any text you don't want in but leaving the bracketed quote tags. You would type in your response after the [/quote tag.

Hope that makes sense...doesn't as I'm typing it, lol.

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I will keep trying on the quote thing -- I can't quite get it to work.

On B6:

I found this site a helpful overview about the importance of B6:

http://healthlink.mcw.edu/article/985640580.html

I went looking because I have been nauseated the last two days -- and that's never a GI symptom I have (I get all the other ones).

It turns out that the new supplements I've added all come along with B6 in them and cumulatively I was taking 26 times the RDA of B6 -- 2600 mg. Various things say people start to get neuropathy at 500 mg. Ooops.

So, thought I'd post this in case anyone else needs to check what levels of B6 might be lurking in their other supplements.

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This just posted on yahoo group -- seems might explain your labs, or at least document that this happens. If the blood levels are low, then it may be they are trapped in your cells?

Thanks for that info.

This goes along with everything else. From the onset of my illness it seems pretty obvious that my body did not detox mercury. The #1 priority as far as my treatment...has been on getting my body to start releasing the metals and other toxins (I guess that would include oxalates).

I had a hair analysis (2004) and the mercury levels were very low...and my essential minerals were all out of whack...thats pretty much what happens when the mercury is not leaving the body. Its the same with the autistic kids....they cant excrete the mercury.

The hair analysis results as well as these low uric acid levels definately shows that there was a problem. Too bad none of those Dr.'s I was seeing back then understood that.

In Autism its the kids who have the worst problems with mercury that are having the lowest levels show up in testing. They arent excreting it and the hair analysis and urine tests look normal....when in fact the child is extremely toxic.

So the mercury is stored in the body...then the yeast overgrows and starts binding with the mercury....suppossedly the immune system allows for that to happen in order to protect the body from mercury poisoning. If the yeasts are producing oxalates those are also hanging around in the same area.

It makes sense since my Dr.'s have found that a large amount of mercury is stored in my jaw....and in the brain. This is the same area where I have the majority of symptoms and this is the area where they find that the infections are located.

Everything accumulates together...not seperately....the infections (especially fungal) are always living where the metals and other toxins are stored. So when I eat high oxalate foods...I'm feeling it in my jaw and everywhere from the shoulders up.

My Dr.'s specialize in treating Autism which has been a huge bonus for me. They understand exactly whats going on. I've known for awhile now that I got sick because my detoxification was impaired but this uric acid test was done over 3 years ago. I just *knew* it had to mean something....I showed it to a few different Dr.'s who all told me it meant nothing.

Of course those were all conventional Dr.'s (who have no understanding of this stuff) but its still irritating that there was not one single Dr. even the slightest bit interested in why that uric acid level was so low.

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