muscle pain

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.

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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.