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oxalates

Wean off prescription pain medication, improve sleep and reduce emotional eating with DPA (an endorphin-boosting amino acid)

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dpa

A question about using the amino acid DPA (d-phenylalanine) to help wean off prescription pain medication was posted on the blog. She was also hoping it would help ease her pain while she was weaning and improve her poor sleep too. I share my feedback on DPA for weaning, timing of vitamin C, additional information for sleep support and using DPA for emotional eating too. Concerns about oxalates and pain are mentioned and the importance of a comprehensive approach.

Here is the question that was posted:

Hi Trudy, I am trying to get off prescription pain medication and have read that DPA really helps – do you have any knowledge and/or experience with this?

There is a very popular opiate withdrawal support website that recommends DPA 500mg 3x/daily. Since amino acids need to be taken away from food and other amino acids, I feel like it could be very easy to make the DPA go to waste if not taken at exactly the right time every day.

The insomnia is the worst part of opiate withdrawal for me – days can go by with only 20-45 minutes of sleep. I have a little one to care for and the stress of no sleep just makes me want to give up.

No sleep worsens my physical pain as I toss and turn for hours on end. It isn’t a surprise that then causes terrible emotional distress.

One more question…since Vitamin C does help withdrawal does it affect/break down DPA?  I take a liposomal version multiple times a day.

Here is my response: Yes, DPA (d-phenylalanine) does help with withdrawal from prescription pain medication and I’ve used it for this purpose with great success with many clients. It does need to be used away from protein and the dosing can vary for each person.

A starting dose of DPA is 500mg and it can be used 3- 4 x day to start, and we increase from there based on the unique need of each person. We typically adjust the DPA up as the prescription medication is tapered very slowly, and under the guidance of the prescribing physician.

I share more about her vitamin C and insomnia questions below.

If you are new to DPA and endorphin support

DPA/d-phenylalanine is an amino acid used as a supplement.

DPA destroys the enzyme that breaks down/inhibits endorphins and in essence raises endorphin levels. Endorphins are feel-good chemicals that you experience with an endorphin rush when you go for a run or when someone gives you a big hug, when you show kindness to someone or an individual does something nice for you.

Taking the amino acid, DPA, as a supplement helps to raise your endorphins and helps when you feel weepy and overly emotional and reduces the need to self-medicate with treats as a reward or for comfort (more on that below). This amino acid is a favorite with so many of my clients and community because it makes them feel so lovely.

In addition to helping with emotional pain, DPA also helps with easing physical pain. And for this reason it can be used to help get off prescription pain medications.

In summary, these are the signs of low endorphins:

  • Heightened sensitivity to emotional pain
  • Heightened sensitivity to physical pain
  • Crying or tearing up easily
  • Eating to soothe your mood, or comfort eating
  • Really, really loving certain foods, behaviors, drugs, or alcohol
  • Craving a reward or numbing treat

DPA and endorphin support for pain: the research

Here is one paper, which discusses how DPA inhibits or breaks down enkephalins (endorphins are closely related compounds) and as a result helps with depression and pain, and acts as an anti-inflammatory: “proven to be beneficial in many human patients with chronic, intractable pain.” The authors also state that a compound such as DPA “may alleviate other conditions associated with decreased endorphin levels such as opiate withdrawal symptoms.”

This paper discusses beta-endorphins and the reward mechanism and how they can induce euphoria, reduce pain and ease addictions and distress: “Long known for its analgesic effect, the opioid beta-endorphin is now shown to induce euphoria, and to have rewarding and reinforcing properties.”

I would love to see DPA used instead of pain meds when possible or used in conjunction with prescription pain medications when they are needed.

I am also very curious to know which opiate withdrawal support website is recommending DPA. I’m so pleased to hear this because it helps so much – for physical pain relief and for weaning off pain medications.

Is DPA the same as DLPA?

DLPA (dl-phenylalanine), although similar sounding, is not the same as DPA and only offers about half as much endorphin support. It also provides dopamine/catecholamine support (i.e. focus, motivation, mood, energy) and this aspect means DLPA has the same precautions as tyrosine. It also means DLPA can affect sleep if used from midafternoon onwards.

I seldom have clients use DLPA and prefer DPA for endorphin support and tyrosine for dopamine/catecholamine support if needed.

Keep in mind, the amino acid DPA, is not the same as the omega-3 fatty acid called docosapentaenoic acid and also abbreviated as DPA.

The brand of DPA that I recommend for my clients

The brand I recommend for my clients is Lidtke Endorphigen. You can read about it and the other supplements I recommend on the supplements blog here.

My recommendation has always been to chew the DPA capsule for the best effects and to get results quickly (in 2-5 minutes). Instead of chewing the whole capsule I now recommend opening the capsule into your mouth. You can read more about using DPA and some client feedback here.

lidtke endorphigen

I’ve used Endorphigen personally too and it’s always with me as part of my travel first-aid kit. I write about using DPA, GABA and acupuncture for pain relief after my back injury and I had DPA, GABA and arnica on hand when I sprained my ankle while hiking in Red Rocks.

Benefits include reduction of emotional/comfort eating too

As I mentioned above, with DPA there is the bonus benefit of endorphin support to help end emotional/comfort eating where you are seeking treats as a reward i.e it helps with physical pain and emotional pain.

You may relate to this if you are someone who would say or think “I just LOVE chocolate-chip cookies!” or “PLEEEEASE don’t make me give up my treats, it’s all I have left after I gave up my coffee and wine! I deserve something nice!”

This emotional attachment to sweet treats and reward-eating is very common with low endorphins.

Using vitamin C with the amino acids and watching for oxalate pain adverse effects

She is correct, vitamin C is best used away from the amino acids so as not to reduce the beneficial effects.

I do caution clients to find the right amount of vitamin C as too much can increase pain in individuals with dietary oxalate issues. I write about oxalate crystal disease here and vitamin C and oxalates here. Both can aggravate insomnia too and increase anxiety.

Address low serotonin, low GABA and/or high cortisol for sleep too

With sleep issues we may also look into supporting low serotonin with tryptophan or 5-HTP,  and/or low GABA levels with GABA and/or theanine. These amino acids can also help with reducing pain in some instances.

Opioids have an endocrine effect via impacts on the hypothalamic-pituitary-gonadal axis, affecting sex hormones levels and cortisol levels. Endocrine dysfunction can adversely impact sleep and make anxiety worse, and needs to be addressed. GABA and serotonin support can help with some of the sex hormone imbalances and Seriphos helps when cortisol is too high.

A comprehensive approach is key

Of course, a comprehensive approach is key, so it’s important to remove inflammatory foods (gluten, maybe all grains, sugar, caffeine, unhealthy fats etc), add fish oil if omega-3s are low and include anti-inflammatory nutrients such as turmeric.

And we always want to figure out the root cause of the pain and address it. Also, ruling out if dietary oxalates (and vitamin C) are an issue is important and often overlooked.

I’m a big fan of working with a physical therapist and acupuncturist too.

Resources if you are new to using the amino acids as supplements

If you are new to using the amino acids, DPA, tryptophan or GABA, as supplements and want to know more, here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution and a brief overview here, Anxiety and targeted individual amino acid supplements: a summary.

If you suspect low endorphins, low serotonin or low GABA levels and do not yet have my book, The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings, I highly recommend getting it and reading it before jumping in and using amino acids so you are knowledgeable.

Can you relate to any of this? Has DPA helped your pain and/or helped you withdraw from prescription pain meds? And did you even know this was an option?

Did it also help you sleep and make you less anxious/worried because of the reduction in pain?

What about less emotional eating when using DPA/Endorphigen?

Feel free to post your questions too.

Willow’s survival story: Easter Lilies cause acute renal failure in cats and Peace Lilies cause oxalate issues

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willow lilies oxalate

Be aware that Easter Lilies (pictured above) can cause acute renal failure in cats and Peace Lilies (pictured below) can cause calcium oxalate issues.

Lindsey Warnock shared these pictures and the story of her kitty Willow on Facebook and kindly gave me permission to share this on my blog as a caution for anyone with cats:

On Thursday Willow played with lilies in my office. She didn’t eat anything. She only batted at them and got the pollen all over her before I shooed her away. We laughed initially but thank God something in my head told me to google it.

I read, “All parts of the lily – including the stem, leaves, petals, stamens and pollen – are poisonous to cats. Even minor exposures (cat chewing on a leaf or getting pollen on his or her haircoat or whiskers) can be fatal.”

“Cats typically do not survive, even with aggressive therapy (such as dialysis).” [from this site noliliesforcats.com]

I freaked out. Threw her in the shower (that wasn’t fun) and immediately took her up to Blue Pearl Emergency & Specialty Hospital. Due to covid, they came and took her from my car and after her exam the ER doctor called me. She said her prognosis was very poor because they found the pollen around her mouth and on her tongue. She even said, “in my experience I’ve never seen a cat survive lily poisoning. Most owners only realize there’s an issue when the cat is sick and by that point it’s just too late”

Insert hysterical crying here. She said that her only saving grace may be that we sought treatment quickly but realistically she might not make it through the night. They made her throw up, gave her activated charcoal and aggressively treated her with fluid therapy and other meds.

Thank God after 2 days in the hospital, she pulled through!!! We will go for a recheck soon but her doctors are confident her organs didn’t suffer any long term damage from the poisoning.

I can’t tell you the intense guilt I felt and still feel for buying those stupid flowers. I felt like a murderer, terrible fur mom, terrible person. I’ve had cats my entire life and have never heard of lily poisoning. The vet’s response to that was “most people only find out the hard way” The doctors, technicians and staff at Blue Pearl really are the best! They saved our baby.

Please SHARE this with your friends. I would hate to see anyone go through this!! Thank you all for your support during that gut-wrenching 2 days. We’re thankful our girl is back home! No. More. Flowers. Ever.

This was a few weeks ago and when I checked in I see that Willow is still doing well!

This article, Toxic Plants by Tina A Wismer, DVM, DABVT, DABT, shares the toxic effects of the lily (pictured above) Willow brushed up against:

Lilies of the Lilium and Hemerocallis sp.have been shown to cause acute renal failure in the cat. Some examples include: Easter lilies (L. longiflorum), tiger lilies (L. tigrinum), rubrum or Japanese showy lilies (L. speciosum, L. lancifolium), and day lilies (H. species). The toxic principle is unknown, but is known to be water soluble. Even minor exposures (a few bites on a leaf, ingestion of pollen, etc.) may result in toxicosis, so all feline exposures to true lilies should be considered potentially life-threatening and should merit aggressive clinical intervention.

Peace lilies are also an issue for cats and dogs – due to oxalates

Peace Lilies are also harmful for cats and dogs because they contain calcium oxalate crystals. Fortunately they are not deadly.

peace lilies

This Toxic Plants article also lists common houseplants – including Philodendron spp. and Spathiphyllum spp. or Peace Lily – that contain insoluble calcium oxalate crystals, describing how they are also harmful for cats and dogs:

The calcium oxalate crystals look like needles, and when the plant is damaged these crystals embed themselves in the oral cavity. Clinical signs include hypersalivation, vomiting and possible swelling of the pharynx (obstruction is rare). Treatment includes milk or water to rinse mouth. Clinical signs usually resolve within 24 hours with no lasting effects.

Here is an image of calcium oxalate crystals called raphides. You can see why these needle shaped calcium oxalate crystals found can inflict pain and cause harm. There are many different shapes of calcium oxalate crystals and this is just one example.

Raphides
Raphides purified from kiwifruit. Raphides, needle shaped calcium oxalate crystals, were collected from kiwifruit homogenate through heavy media separation using a dense CsCl solution. (A) The SEM image of purified raphides (x400). Shared from: Synergistic Defensive Function of Raphides and Protease through the Needle Effect via Creative Commons.

This article, Easter Lilies and Cats do not Mix! shares more about the two different groups of lilies, “true” lilies (like Easter Lilies) and “benign” lilies (like Peace Lilies). Author, Karen Christopherson, DVM, CVA says “It is best to skip lilies altogether in households where cats live.”

Be sure to read the entire Toxic Plants article for a list of all plants that are harmful and severely toxic to cats and dogs. I had no idea there were so many!

I am not a vet and am not an expert on any of this so please do check in with your own vet.

Oxalate questions I have

With regards to oxalates I have these questions I’d love to know the answers for:

  • Do all cats and dogs have an inborn ability to tolerate calcium oxalate crystals like those found in the Peace Lily?
  • Would cats and dogs also have issues (especially severe pain in their joints, bladder issues and increased anxiety) if they were to ingest high oxalate foods like spinach, beets, sweet potatoes, soy and kiwi fruit?
  • Given that there are some human “antidotes” for helping with acute exposure symptoms after ingestion of high oxalate foods (like spinach, rhubarb, nuts, kiwi fruit etc) in susceptible individuals, I am curious to know if some of these could be used with cats and dogs too: calcium citrate, magnesium citrate, vitamin B6 and/or an epsom salt bath?
  • Do humans with dietary oxalate issues have problems working with some of these indoor plants (like Peace Lilies) when planting them, pruning and even getting pollen on the skin?

Are you aware of these harmful effects of plants for cats and dogs? Let us know if you experienced something similar to what happened to Willow or with a plant like the Peace Lily. What advice did your vet share with you and how is your cat or dog doing now?

If you have answers to any of the above questions please do share too.

Feel free to post your questions here too.

We appreciate Lindsey for letting me share this and say well done for your quick thinking!

Vitamin C causes oxalate formation resulting in pain, anxiety, and insomnia (when there is a defect in ascorbic acid or oxalate metabolism)?

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vitamin c and oxalate

Supplemental vitamin C has many exceptional health benefits and causes no issues for a large majority of individuals. However if you have dietary oxalate issues, doses of vitamin C above 100mg to 250mg per day may be problematic and trigger pain, anxiety, insomnia, bladder issues and more. This blog, Coronavirus and vitamin C for immune support: new pain or more severe pain due to oxalate issues?, is part 1 of the series  which sets the scene and is a fact-finding article. Part 2, Oxalate crystal disease, dietary oxalates and pain: the research & questions (part 2), covers the research behind oxalate crystal disease.

Today we look at some of the research on vitamin C/ascorbic acid being a possible trigger for the formation of oxalates in certain instances. This paper, No contribution of ascorbic acid to renal calcium oxalate stones, has a good summary:

Even though a certain part of oxalate in the urine derives from metabolized ascorbic acid, the intake of high doses of vitamin C does not increase the risk of calcium oxalate kidney stones due to physiological regulatory factor: gastrointestinal absorption as well as renal tubular reabsorption of ascorbic acid are saturable processes, and the metabolic transformation of ascorbic acid to oxalate is limited as well.

But in the large-scale Harvard Prospective Health Professional Follow-Up Study, those groups in the highest quintile of vitamin C intake (> 1,500 mg/day) had a lower risk of kidney stones than the groups in the lowest quintiles.

This paper does however have this precaution:

Recurrent stone formers and patients with renal failure who have a defect in ascorbic acid or oxalate metabolism should restrict daily vitamin C intakes to approximately 100 mg.

My proposed interpretation of this

I’d like to propose an interpretation of this, based on what we know about oxalates. These are the individuals who should restrict daily vitamin C intakes to approximately 100 mg per day (or up to around 250mg per day – more on the range below):

1) If you are someone who is a recurrent stone former or is in renal failure with a defect in ascorbic acid or oxalate metabolism

2) If you are someone with dietary oxalate issues i.e. you have similar symptoms when consuming vitamin C as you do when consuming high oxalate foods. Could we consider that you be classified as having “a defect in ascorbic acid or oxalate metabolism?” I would say yes.

I’ve added #2 above because we need to keep in mind that many individuals who have issues with dietary oxalates are not necessarily stone formers and nor do they have renal failure.

Research is also lacking in this area as you can read in Oxalate crystal disease, dietary oxalates and pain: the research & questions (part 2).

An omission of the 100mg per day restriction

I would like to point out that the study mentioned above was referred to in an article on Dr. Andrew Saul’s site but for some reason the section about the 100mg daily restriction was omitted from the article. It may have something to do with the fact that the author firmly believes that no-one has oxalate issues with any dose of vitamin C. In fact, he even jokingly makes this comment in the article:

Is some clown still trying to tell you that vitamin C is somehow dangerous? Or that you shouldn’t take more than 200 mg/day?

If you are someone who does experience pain when consuming vitamin C (like I do), I’m pretty sure you don’t find this comment amusing.

Vitamin C intake leading to pain, anxiety, insomnia, low mood and bladder issues

Here is some additional feedback from a question I posted on Facebook. This is the question I posted:

I’ve been sharing here about vitamin C being an issue for some folks who have oxalate issues and seeing an increase in pain. I’d love to hear if you upped your vitamin C intake for immune support and saw your mood take a dive or your anxiety increase or your sleep get worse? Vitamin C typically helps because it’s a cofactor for making neurotransmitters like serotonin and GABA and tyrosine but too much of a good thing is not good! Did you also have increased or new pain (as well as anxiety, low mood and insomnia)?

Here are some of the responses from folks who shared about pain, anxiety, insomnia, low mood and bladder issues:

  • Fay shared this: “Yes increased pain, insomnia and anxiety with increased C and mouth sores to boot. Taking liposomal C and Ester C to boost antioxidants for health reasons and pain in elbows and knees. Not sleeping well at all either.”
  • Lica shared this: “Yes increased anxiety…never thought of it before…felt a bug coming on and took c for a few days…yup anxiety.”
  • Nicola shared this: “Increase in body pain, burning bladder, sleep affected and low mood ( not something I usually suffer with). I was taking liposomal C then increased the dose and also added Ester C as I had symptoms of covid. I was taking 1-2g a day of liposomal previously as a preventative and increased to 4g plus 4g of Ester. Only did it for a couple of days. Stopped three days ago and pain is starting to subside but no sleep last night. So I will continue with a break for now and add a very low dose again perhaps of Ester C and see how I go.”

I really appreciate these women sharing their experiences so we can all learn!

What is the upper limit of vitamin C for individuals with dietary oxalate issues?

I’m sure you’re wondering about the various dosages mentioned: the study mentions 100mg per day,  Dr. Andrew Saul’s clown comment says 200mg per day and Susan Owen’s TLO Facebook group recommends no more than 250mg per day. You’ll need to figure out what the upper dose of vitamin C you can tolerate – by trial and error.

The big disconnect is always the mention of kidney stones

This is one of many similar studies on the topic of ascorbic acid/vitamin C and oxalates. There are also many studies and articles stating that vitamin C does NOT play a role in the formation of oxalates and cause kidney stones. The big disconnect is always the mention of kidney stones. The missing piece – in the research and in many articles – is that you can have issues with dietary oxalates AND vitamin C when there is no kidney disease/no kidney stones.

I have a number of additional oxalate blog posts planned so please let me know what else you want to hear about.

Here are the 2 previous blog posts on this topic of oxalates, vitamin C and pain:

Please also share your vitamin C oxalate story and how you figured it out (and if you react in a similar way to dietary oxalates).

Let us know what your ideal dose is (and which dose caused issues) and what form of vitamin C and product name you use/used. Feel free to share if you also have a history of kidney stones.

Feel free to post your questions here too.

Oxalate crystal disease, dietary oxalates and pain: the research & questions

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oxalate crystal disease

This blog post came out of my quest for finding a medical explanation/term for my own pain caused by dietary oxalates and a desire to gain a better understanding for my clients who experience similar pain. It’s been on my writing list for some time and I’ve been gathering articles and research but the current coronavirus pandemic and recommendations for high vitamin C intake had me concerned enough to blog about it and ask for feedback from my community.

This is the blog, Coronavirus and vitamin C for immune support: new pain or more severe pain due to oxalate issues?, where I pose the question about recent increased intake of vitamin C or the addition of large doses for immune support and increased pain: joint pain, eye pain, foot pain, vulvodyndia, bladder issues, insomnia, gut pain, kidney pain, changes in thyroid health/labs, bone pain etc?  The feedback on this blog and on Facebook has been huge and confirms the connection.  Thank you if you’ve already contributed to the discussion!

Today I’ll share an overview of oxalates, my pain issues with dietary oxalates, a deeper dive into the condition called oxalate crystal disease (with some of my insights and questions), and the autism and atherosclerosis research. It’s by no means a comprehensive blog on all things oxalates but rather a way to try and connect some dots and pose some questions for going deeper.

The next blog will address my vitamin C/oxalate/pain story and the research on vitamin C, oxalates and pain, together with questions.

Oxalates defined and food sources

Before we review oxalate crystal disease, let’s define calcium oxalates. Julie Matthews, my good friend and colleague and an oxalate expert shares this in her blog, Oxalates: Their Influence on Chronic Disease

Oxalates present in our body as sharp crystals or crystalline structures with jagged edges that cause pain, irritation, and distress. They can bind with certain minerals; particularly calcium and magnesium, as well as iron and copper

You’ll find many different lists of low, medium and high oxalate foods. When I started eating low oxalate I found Susan Owen’s site simple and very helpful. I then joined the Trying Low Oxalates Facebook group for support and feedback.

In summary, these are the common medium-oxalate and high-oxalate foods that many folks have problems with: nuts, nut-butters and nut-flour (something to watch when eating Paleo or GAPS), wheat, chocolate, kiwi fruit (very high – see the raphides image below), star fruit (also very high), beets, potatoes, legumes, berries, spinach and soy.

You can see why these needle shaped calcium oxalate crystals found in kiwi fruit could inflict pain. This is just one example – there are many different shapes of calcium oxalate crystals.

raphides purified from kiwifruit
Raphides purified from kiwifruit. Raphides, needle shaped calcium oxalate crystals, were collected from kiwifruit homogenate through heavy media separation using a dense CsCl solution. (A) The SEM image of purified raphides (x400). Shared from: Synergistic Defensive Function of Raphides and Protease through the Needle Effect via Creative Commons.

My oxalate story: severe foot pain and eye pain

I personally had severe dietary oxalate issues in 2012 which manifested as excruciating foot pain. It was a combination of hot-burning-coals-pain and shards-of-glass-pain. It was just after my book, The Antianxiety Solution (my Amazon link), came out. Due to my book tours and events, I would be on my feet all day presenting, often for 3 full consecutive days, so I figured that must be the reason. When I travelled, I took a blender and made smoothies with berries, ate plenty of healthy nuts as my snacks and took kale chips with me to make sure I was getting my greens. Kiwi fruit was a favorite of mine!

I was eating a high oxalate diet and had no idea until I heard Julie present at an Integrative Medicine for Mental Health Conference on dietary oxalates and autism. A light-bulb went off and then I worked with her to learn about oxalates and figure out if it was in fact because of oxalates and sure enough, as soon as I removed high and medium oxalate foods the pain resolved. Note: the advice is NOT to remove all high and medium oxalate foods at once because dumping can occur. I was fortunate that this didn’t happen with me, possibly because of the vitamin B6 I was already taking as part of the pyroluria protocol.

When I eat a low oxalate diet I do really well. However, more recently dietary oxalates have been causing me eye pain when I have a treat like eggplant or carob. It starts out as a kind of scratchy discomfort and mild pain and then gets worse and worse. I also have a goopy kind of discharge from the inner part of my eye and burning/redness crystal-like teariness on the outer parts of my eyes.  I recently had one very severe incident where the eye pain in my left eye was agonizing for about 2 hours. I was beside myself and tried GABA, DPA and tryptophan for an attempt at pain relief – with no success. When I took 500mg of vitamin B6 the pain eased immediately.

The theory is that oxalates cause issues where you have a weakness. I injured my left eye walking into a low tree-branch while rock-climbing 15 years ago, so I suspect this is why my left eye is more severely affected.

Oxalate crystal disease

The condition “oxalate crystal disease” is the closest explanation I’ve found that explains the pain I’ve experienced and makes the most sense, other than the fact that all the studies mention kidney disease and yet I don’t have kidney disease and have never had kidney stones. I’ve also never had a problem with my estimated Glomerular Filtration Rate (eGFR). In case eGFR is new to you it measures how well your kidneys filter the wastes from your blood and is the best overall measure of kidney function/damage.

This paper, Update on oxalate crystal disease, summarizes it:

Oxalate arthropathy is a rare cause of arthritis characterized by deposition of calcium oxalate crystals within synovial fluid. This condition typically occurs in patients with underlying primary or secondary hyperoxaluria. Primary hyperoxaluria constitutes a group of genetic disorders resulting in endogenous overproduction of oxalate, whereas secondary hyperoxaluria results from gastrointestinal disorders associated with fat malabsorption and increased absorption of dietary oxalate. In both conditions, oxalate crystals can deposit in the kidney leading to renal failure. Since oxalate is primarily renally eliminated, it accumulates throughout the body in renal failure, a state termed oxalosis. Affected organs can include bones, joints, heart, eyes, and skin. Since patients can present with renal failure and oxalosis before the underlying diagnosis of hyperoxaluria has been made, it is important to consider hyperoxaluria in patients who present with unexplained soft tissue crystal deposition. The best treatment of oxalosis is prevention. If patients present with advanced disease, treatment of oxalate arthritis consists of symptom management and control of the underlying disease process.

Let me break this down because I’ve had to look up terminology and read and re-read papers in order to get a better understanding of things:

#1 Oxalate arthropathy is a rare cause of arthritis characterized by deposition of calcium oxalate crystals within synovial fluid.

Oxalate arthropathy is a disease of the joints caused by oxalates depositing in the synovial fluid of the joints.  The paper states it is a rare cause of arthritis, but I suspect it is much more common given what we’re seeing clinically.

Also, because all the research connects oxalate crystal disease with kidney disease, it may be overlooked when there is no kidney disease (more on that below).

Synovial fluid is the fluid between the joints that acts as a lubricant and nutrient source.

#2 This condition typically occurs in patients with underlying primary or secondary hyperoxaluria.

Hyperoxaluria occurs when you have “too much oxalate in your urine.”

#3 Primary hyperoxaluria constitutes a group of genetic disorders resulting in endogenous overproduction of oxalate and… secondary hyperoxaluria results from gastrointestinal disorders associated with fat malabsorption and increased absorption of dietary oxalate.

Primary hyperoxaluria is genetic and results in endogenous or internal overproduction of oxalate, causing too much oxalate in the urine.

The secondary hyperoxaluria description mentions “gastrointestinal disorders associated with fat malabsorption and increased absorption of dietary oxalate.”  There are a number of other factors which I’ll address in a future blog.

According to this paper and others, secondary hyperoxaluria also results in too much oxalate in the urine.

#4 In both conditions, oxalate crystals can deposit in the kidney leading to renal failure. Since oxalate is primarily renally eliminated, it accumulates throughout the body in renal failure, a state termed oxalosis.

Affected organs can include bones, joints, heart, eyes, and skin.

Mayo clinic states oxalosis occurs if your kidneys fail. “Because your body can no longer eliminate the extra oxalate, it starts accumulating — first in your blood, then in your eyes, bones, skin, muscles, blood vessels, heart and other organs.”

My comment is that in some instances, oxalates accumulate in various parts of the body without kidney failure. I share more about this aspect and what we see clinically below, plus an autism and atherosclerosis study.

This paper, Oxalate crystal deposition disease, also mentions the following: “osteopathy, acute and chronic arthropathy with chondrocalcinosis, synovial calcification, and miliary skin calcium oxalate deposits and vascular calcifications that affect mainly the hands and feet.” The paper is focused on primary hyperoxaluria (and does also discuss the kidney involvement) but I’m including it because of the conditions listed. You may have received one of these diagnoses and not linked it back to dietary oxalates and/or vitamin C intake possibly playing a role.

The authors do report “systemic life-threatening cardiovascular, neurologic, and hematologic manifestations”, saying they are rare.

Calcium oxalates: anxiety, sleep, headaches, fatigue and other symptoms

Calcium oxalate crystals can also be found in the thyroid, and ear, leading to hearing loss under some circumstances.

Julie Matthews, in her blog, Oxalates: Their Influence on Chronic Disease, also shares that

Clinical studies and anecdotal experience indicate that oxidative stress, mitochondrial disruption and damage, and nutrient depletions, trigger widely varied symptoms including fatigue and inflammatory cascades, joint pain or pain anywhere in the body. Chronic low energy is very common because of a reduction in ATP in the mitochondria. Oxalates could be a hidden source of headaches, urinary pain, genital irritation, joint, muscle, intestinal or eye pain.

Other common oxalate-caused symptoms may include mood conditions, anxiety, sleep problems, weakness, or burning feet. Indicators can be digestive, respiratory, or even bedwetting for children.

What the researchers are saying – always kidney disease

I’ve reached out to a number of researchers, practitioners and labs and they all state that oxalate crystal disease only happens with kidney disease/kidney stones. This is what one researcher shared with me: “Plasma oxalate concentrations only elevate enough to cause systemic disease when there is significant kidney disease (typically GFR <20-30). I have never seen a significantly elevated plasma oxalate without chronic kidney disease.”

Could this be the case because they are kidney specialists and therefore only seeing patients who already have kidney disease?

The good news is that a number of them are intrigued and interested in learning more.

Oxalate crystals in autism and atherosclerosis without kidney issues

However, based on my own experience and according to many in this community and other communities like the Trying Low Oxalates Facebook group, pain issues related to dietary oxalate intake may occur without kidney issues/kidney stones, and often does.

These papers offer some support for what I suspect we are seeing clinically – systemic oxalate deposits can occur deposits without kidney stones or renal failure:

Children with ASD [autism spectrum disorder] demonstrated 3-fold greater plasma oxalate levels … and 2.5-fold greater urinary oxalate concentrations. Despite significant hyperoxaluria no evidence of kidney stone disease…was observed

calcium oxalate crystals were observed within atherosclerotic plaques in the coronary arteries. Similar deposits were seen in the thyroid gland and other organs but not in the kidneys. None of the patients had chronic renal failure…. We suggest the phrase “atherosclerotic oxalosis” to describe this finding.

These are the disconnects I’m seeing in the research and questions I have:

  • Oxalate crystal disease is reported to be rare and it only happens with kidney disease/kidney stones – could it be more common than reported? As Julie states: “New science and clinical experience reveal concerns about oxalates that far exceed traditional kidney stone pathology.”
  • Should we be calling it hyperoxaluria. “too much oxalate in your urine” if the kidney is not involved? Or do we need to expand the definition of hyperoxaluria to include too much oxalate in other tissues outside the kidney and urine?
  • Could oxalate crystal disease with no kidney disease be a new syndrome that has yet to be widely and clearly identified in the research?

I mean no disrespect to the study authors and researchers by sharing my insights and questions here and in the section above.  I appreciate the work they do and the opportunity to learn from them.

Searching through the literature on this has been extremely challenging because studies always refer to the kidney. It may well be that there is a perfectly logical explanation for much of this and someone has already gone through the research and has answers to all my questions.  I am very willing to be enlightened so please do share if you’ve come across a good explanation.

Either way, please share your insights based on what I’ve shared in this blog and in relation to your experiences with pain caused by dietary oxalates and/or pain caused by vitamin C intake. I will be sharing this blog and the comments with the researchers and practitioners who are open to all this.

Coronavirus and vitamin C for immune support: new pain or more severe pain due to oxalate issues?

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coronavirus pain vitamin c

I have concerns regarding the use of high doses of oral vitamin C for boosting immunity – for a subset of susceptible individuals who have dietary oxalate issues. This is directly related to the many recommendations that have been and are being made in relation to the coronavirus pandemic, but it applies beyond the pandemic for anyone who has dietary oxalate issues.  My concerns relate to high doses of vitamin C making existing pain symptoms worse or even causing new pain symptoms in someone who is not aware they may have oxalate problems. This may include joint pain, vulvodynia, bladder pain, painful urination, eye pain, headaches, foot pain, stomach pain, general body pain, deep bone pain etc. All this can manifest as fatigue, irritability, anxiety, low mood and insomnia.

I’ve been promising to blog about this topic for over a month and have gathered enough information for a short book! I figured a good place to start is to share feedback I’ve received so far and ask for your feedback so we can learn and heal, educate and inform others going through this, as well as offer insights to researchers and doctors who are not aware of this issue (and sometimes say “based on biology it’s not possible”).

In the coming weeks, if there is enough interest, I’ll share additional information on mechanisms, what the research says and what the research says is not possible, labs, types of oxalate issues (there are many), the possible causes (there are also many) and long-term impacts beyond pain (for the thyroid, mitochondria, heart and more), the solutions, additional resources and  feedback from experts (of which there are very few – as of now I’ve been reading everything published by Susan Owens, Julie Matthews, Great Plains Labs and research published by kidney specialists).

Until then I’m humbly asking for your feedback. If you have no idea what oxalates are or are taking vitamin C with no issues, then please don’t worry. Things will become clearer as you read this blog and read follow-on blogs. I feel it’s really important to get this initial blog out rather than waiting until I have everything written up perfectly.

I’ve also been hearing feedback from folks who have now recovered from coronavirus or are still recovering, with many reporting lingering pain and fatigue. I am concerned some of that pain may be related to high doses of oral vitamin C or IV (intravenous) vitamin C leading to oxalate issues they may not be aware of.

My request to you – please share your vitamin C oxalate story

This is what I posted on facebook and I’ll simply share it again here: I’m looking for oxalate vitamin C stories to share with folks who don’t believe or are not aware that high dose vitamin C causes issues for those with dietary oxalate issues.

1) What symptoms do you experience?

2) How quickly do you notice symptoms after taking vitamin C?

3) What form of C have you tried? (ascorbic acid or Ester C or whole food sources of C like camu camu/amla/goji berry/acerola cherry/rosehips/kakadu plum/acai berry/ maqui berry or liposomal or something else). Please also share the brand and source of vitamin C if you know

4) How much vitamin C do you use and is this more than you usually take or are you/were you taking this for the first time?

5) How long did it take to get back to normal/no pain/no symptoms once you stopped taking vitamin C?

NOTE – ONLY VITAMIN C: for questions 2) through 5) – in order to be sure the new symptoms are due to vitamin C and not something else – the addition of vitamin C must be the only change made and then stopping vitamin C must also be the only change made. I have clients keep a log too and repeat the “test” if they are not sure. This can be likened to a gluten elimination trial but in reverse. Repeating the “test”also depends on the symptom severity.

6) Does/did anything help to counter the adverse effects (like calcium citrate, vitamin B6, NAC, MSM, biotin, bile support, Epsom salts baths or anything else)?

7) How long have oxalates been an issue for you and are you eating low oxalate? Or is this all new to you?

8) Would you equate the effects of vitamin C to eating high oxalate foods like spinach, raspberries, nuts and seeds, kiwi fruit, figs, turmeric, chocolate, wheat, white potato, soy, beets etc (less severe/same symptoms/more severe)?

I’m also adding these new questions based on some of the research I’ve been doing:

9) Are you aware of any kidney issues and if you get regular blood work done do you track and take note of your estimated Glomerular Filtration Rate (eGFR)?  What have you observed in terms of values? (In case eGFR is new to you it measures how well your kidneys filter the wastes from your blood and is the best overall measure of kidney function. It helps determine if you have any kidney damage.)  Have you ever been told you have kidney issues and have other kidney lab markers out of range?

10) What are your results on the Great Plains Lab organic acids test (OAT) for the following: Oxalic acid, Glycolic acid (glycolate), Glyceric acid (glycerate), Arabinose (a yeast/candida marker) Ascorbic acid (ascorbate, vitamin C), Pyridoxic acid (marker of vitamin B6 status), Furandicarboxylic acid and hydroxy-methylfuroic acid (markers for fungi such as Aspergillus), and markers of bacterial imbalance?

11) Do you have pyroluria (based on a urine test) or have more than 15 symptoms from the the pyroluria questionnaire and/or are susceptible to low vitamin B6 (poor dream recall and/or nightmares) and low zinc (and therefore high copper)?

12) How do you score on symptoms of low serotonin, low GABA, low endorphins and low catecholamines? (here is that questionnaire). Is your anxiety, low mood, cravings or sleep worse when you are dealing with your other oxalate symptoms/pain?

13) Do you have any genetic markers that indicate a susceptibility for oxalate issues?

14) Do you have celiac disease, gluten sensitivity, leaky gut, liver issues, gall stones, no gallbladder, poor bile production, fat malabsorption, mold toxicity issues, low pancreatic enzymes, candida, high iron/ferritin?

15) What are your results on a mold toxicity test such as the Great Plains MycoTOX profile? and/or do you live in a moldy home/worked in a moldy environment or have in the recent past?

16) What are you results on a stool test (and which stool test)?

17) Do you have high mercury, high lead or high levels of other metals?

18) What is your vitamin D level (now if you happen to know it and/or typical levels in the past) and did you start to take extra vitamin D during this pandemic too? If you are taking extra vitamin D how much extra? And does your vitamin D supplement also contain vitamin K1 and vitamin K2?

19) Do you have any other out-of-range (functional levels) markers on blood work or other lab tests?

I will come back and add references and the rationale for posing these questions.

Also, feel free to comment with a nickname to keep your health information private.

Josefin’s story: painful “fat tissue” around elbows, knees and hips, and an irritated bladder

I share some of the Facebook feedback below, but first, here are Josefin’s comments on my coronavirus blog. Josefin thanked me for not ignoring the oxalate problems that might come with higher doses of vitamin C, saying she has “experienced them first-hand and it is not something to take lightly.”

I asked her to share what happens when she eats medium and high oxalate foods (like spinach, nuts, kiwi fruit, chocolate etc). She shared this:

I gradually decreased my oxalate content in food as recommended in the TLO-group. During that year I experienced periods with a lot of the typical dumping-signs like sandy stools, pain in body and especially in joints and muscles, sand in eyes, bladder pain, peeing a lot, cravings for oxalate foods and a temporary relief in the dumping symptoms when I ate some higher oxalate foods.

I also realized that the painful “fat tissue” that I had all over the body (but mainly around elbows, knees and hips) for 10 years was really deposited oxalates with mostly fluid around it, since I lost it more and more while I dumped and had more pain there also when I dumped. Now the deposits are all gone.

I did want to know if the adverse symptoms she experienced with vitamin C were the same as when eating foods high in oxalates, and she confirmed they were:

Many of the symptoms of dumping were the same as I had previously experienced a few days to weeks after trying to do bowel flushes with vitamin C.

Josefin has been on a low oxalate diet for 3 years and has found the most vitamin C she can tolerate is 200-250mg of vitamin C per day. More about that in her own words:

Now after being on a low oxalate diet for 3 years (carnivore the last year) I have tried taking vitamin C very many times and come to the conclusion that about 200-250 mg per day is what I can take. If I take more I will get a gradual increase of that painful fat-tissue that will start after a few days to weeks depending on how much vitamin C I take. I will also get more of a flu feeling and irritated bladder.

When I stop taking the vitamin C I will within a day or two get all my typical dumping symptoms and they will continue for days to weeks depending on how much I have taken. Symptoms severity also depends on how much I have been taking.

It turns out she gets similar reactions with various forms of vitamin C: “ascorbic acid, calcium ascorbate, multimineral buffered ascorbate and also liposomal vitamin C from Quicksilver Scientific”.

Syd’s story: cystitis, along with a crashed brain

Syd shared this on the Facebook post:

I get symptoms from taking high dose Vitamin C within about 45 minutes. It shows up as cystitis, mostly, along with a crashed brain.

She did confirm that when taking vitamin C (possibly the ascorbic acid form) the symptoms mimic her symptoms when eating high oxalate foods. She also wants to try liposomal vitamin C and camu camu to figure out if she gets the same reactions:

I have the very same response to high oxalate foods. I used to think it was a bladder infection, but I tested four times and every time the test was negative. I’m having a response at the moment. I (stupidly) started eating protein bars that have nuts in them and after eating about four of them across several days, I have the cystitis symptoms.

I’m staring at some liposomal Vit C in the fridge that I’ve been wanting to try at a low dose. Same with some camu camu. I need the cystitis symptoms to abate first.

Virginia, Cathi and Melissa and their pain stories

Virginia also offered feedback on Facebook on her experiences with vitamin C, and again they are similar to when she eats high oxalate foods:

I took a pack of Vit C 1000mg (ascorbic acid) at night last week, next morning I noticed oxalate dumping. Took calcium citrate and it was gone within a day and yes the reaction is similar to eating high oxalate foods

On another Facebook thread my question got Cathi wondering if vitamin C was a factor in her worsening arthritis:

Hmmmmmm this has me thinking. I started Vitamin C crystals 1000mg a day – small spoonful in water. It is sour and not awful. Then, a couple of months ago the arthritis deposits in my right hand fingers got much worse and my right wrist has given me so much grief I have had to reduce my yoga. And I got a weird cyst or something on the inside of my right wrist. I wonder…. Gonna stop it and see if it makes a difference!!! Thank you as I was totally stumped and I hope this is the answer!!!!

On this same thread, Melissa shared that noticed severe joint and muscle pain within 2 or 3 days of starting vitamin C:

When the COVID stuff started, I started taking vitamin C as a preventative measure to keep my immune system strong. Within two or three days, I had system joint and muscle pain everywhere. I could hardly move! I stopped the vitamin C and it cleared up in 3 or 4 days. I’ve never had kidney stones, but my brother has, so maybe it’s a genetic predisposition? I do have a history of on & off systemic joint pain since my early 20’s.

I never thought I had oxalate issues but now I’m wondering if it might be related to my random systemic joint pain. 

I was taking between 1,000 to 3,000 mg per day. The label says Solaray timed release vitamin c (ascorbic acid), acerola cherry and rose hips.

Thanks to these folks, everyone who has already contributed on other blogs, all the Facebook feedback (and to you if you provide feedback today).

My hesitation – I don’t have all the answers and we are in the midst of a pandemic where vitamin C is so important

I planned to include this in part 2 but I’m adding this section now because a few hours after publication there are already so many comments and questions. I did hesitate about publishing this blog when I don’t have all the answers and because we’re in the midst of a pandemic where vitamin C has been shown to be very important.

There is plenty of research on the benefits of vitamin C and it’s widely used with much success during serious illness and for sepsis. This paper, An Update on Current Therapeutic Drugs Treating COVID-19, published just last month, discusses vitamin C (ascorbic acid) as a supporting agent, playing a role as a potent antioxidant, with benefits for immune health and as an antiviral against flu viruses.

It also discusses an IV vitamin C coronavirus trial and high dosages currently being used in various hospitals for this virus. The authors do also say “no major side effects” which is what we are typically told about vitamin C.

The Orthomolecular Medicine News Service have issued a number of valuable press releases on vitamin C specific to coronavirus but they are steadfast in their conviction that there are no issues with vitamin C, saying it doesn’t cause kidney stones.

For the majority (I think) there will be no major side-effects but for those with oxalate issues high doses of vitamin C are clearly problematic.

One caveat is that there may be a place for short-term high-dose use during a healing crisis, even for someone with dietary oxalate issues. Unfortunately I don’t have an answer for this aspect yet and I’m hoping a vitamin C expert will contribute to the discussion or I’ll discover some research about this.

And let’s not forget this study published in 1994, The clinical effects of vitamin C supplementation in elderly hospitalised patients with acute respiratory infections, where 200mg of supplemental vitamin C per day resulted in an 80% decrease in deaths among severely ill, hospitalized respiratory disease patients.

This topic is near and dear to my heart and folks have oxalate issues now so I decided to go ahead and publish this information. I’m looking for a solution for my community who are already aware they have oxalate issues (many of you have already reached out to me so thank you) and for myself too. I’ll share details of my oxalate story (my pain is in my feet and my eyes) and my vitamin C experiment in a future blog (I used food based vitamin C and 100-200mg/day and it didn’t go well).

As I mentioned above, I’m also concerned there are many people who don’t know they have oxalate issues and may end up with issues because of all the well-meaning vitamin C advice that is being shared during this pandemic.

I may have bitten off more than I can handle with this topic – I’m learning voraciously and it’s like drinking from a fire-hose! But I’m doing what I often do … I learn by teaching and asking for your feedback and questions, and I’m open about the fact that I’m not an expert and don’t have all the answers.

**** Some cautions *****
Please discuss your situation with your doctor and other health practitioners before stopping or reducing vitamin C based on what you’re reading here.

If you are completely new to the topic of oxalates, this is sound advice from Susan Owens on getting started: “work your way gradually into a completely low oxalate diet.” You can learn more on getting started here. Susan runs the Trying Low Oxalate Group (TLO) on facebook and they are extremely helpful.  I will be sharing additional resources/studies/practitioner feedback etc. but this will get you started.

A reminder that pain can have many root causes other than dietary oxalate issues (or in addition to oxalate issues): gluten issues, nightshades, low GABA, low serotonin, low endorphins, Lyme disease (bartonella can cause foot pain), fibromyalgia, low B12, heavy metals, mold toxicity, autoimmune conditions etc.

******************

Feel free to comment below – share your feedback and ask your questions. And do let me know if you’re interested in learning more about this topic and additional blog posts.

If you’re a practitioner who works with individuals with dietary oxalate issues I’d love to hear from you too.

IMMH highlights: mold, oxalates, anxiety, panic attacks and depersonalization

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IMMH highlights

Today I’m sharing some highlights from three different presentations at the recent IMMH/Integrative Medicine for Mental Health Conference – on mold and the connection to oxalate issues, as well as a major trigger of anxiety, panic attacks, depression and depersonalization.

Matthew Pratt-Hyatt, PhD: “The Hidden Threats of Mycotoxins.”

Matthew Pratt-Hyatt, PhD presented on “The Hidden Threats of Mycotoxins.” He shared medically significant mycotoxins and that ochratoxin affects the kidneys and my first thought was: “I wonder if this plays a role in oxalate issues?”

I asked Dr. Pratt-Hyatt after his presentation and he said yes, the mycotoxins produce oxalates and then dietary oxalates can be the tipping point. He wasn’t aware of any research on the mycotoxin-oxalate connection but sees the connection on the Great Plains MycoTOX lab test and Organic Acids test

Matthew Pratt-Hyatt

Matthew Pratt-Hyatt

Matthew Pratt-Hyatt

Matthew Pratt-Hyatt

Dr. Neil Nathan: “Mold Toxicity as an Unrecognized Cause of Mental Health issues.”

One of my favorite presentations was the one delivered by Dr. Neil Nathan on “Mold Toxicity.” He defines mold toxicity and how it can directly trigger anxiety, panic attacks, depression, depersonalization and hallucinations, as well as some of the common complications which can exacerbate mental health symptoms. These include mast cell activation, multiple chemical sensitivities, secondary porphyrias, methylation dysfunction and pyroluria.

I do appreciate the fact that he addressed that there can be PTSD caused by physicians when someone knows they are sick – especially with mold toxicity – and yet they do not feel heard or validated. This can even lead to their families being less supportive.

Dr. Nathan is a brilliant and compassionate practitioner, and the author of the excellent book – Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness (my Amazon link)

Neil Nathan

Neil Nathan

Neil Nathan

Neil Nathan

Neil Nathan

Dr. Kurt Woeller: “Metabolic Products in Mental Health – How Fungal, Bacterial, Mitochondrial and Other Compounds Influence the Brain.”

Dr. Kurt Woeller shared more about oxalates and mold in his presentation: “Metabolic Products in Mental Health.” I really like the Oxalate Metabolism diagram that shows the role of low vitamin B6, dietary oxalates including ascorbic acid, collagen and gelatin, mold, yeast and genetics in someone with high oxalates.

On a side note, low serotonin is often a factor with collagen and gelatin but it can be a source of oxalates.

He mentions various health problems associated with high oxalates – pain issues are common and so is fatigue and behavioral issues. Dr. Woeller works primarily with children but I have seen anxiety and depression in adults with oxalate issues too.   If mold is one of the triggers then the mental health issues can be further impacted.

 

In case you missed the previous two IMMH blogs:

What wasn’t discussed were some of the other mechanisms that may be causing the increased anxiety – such as the impacts of toxic mold on neurotransmitters and low levels of zinc.

Have you been exposed to toxic mold and was this a trigger for your anxiety, panic attacks and other mood issues?

Did GABA, tryptophan and zinc (and other nutritional support approaches) help ease some of the anxiety symptoms while you were remediating your home and detoxing from the mold toxicity?

Do you have oxalate issues and have you ruled out the fact that toxic mold may be a trigger? I personally have oxalate issues (I share more about this here) and plan to do the MycoTOX test to learn more. I’ll keep you posted on what I find.

As a practitioner, do you want to learn more about how to incorporate GABA and the other targeted individual amino acids, tryptophan/5-HTP, DPA, glutamine and tyrosine, into your work to help your clients/patients with anxiety triggered by toxic mold? I invite you to check out my new online practitioner training here: Balancing Neurotransmitters – The Fundamentals. I’m extending the $100 discount offered at IMMH for a few weeks (use coupon code immh2019).