Matthew's health has baffled dozens of doctors.
After eight years of experimenting (and some substantial healing), he thinks he has finally got to the root of some of his most stubborn and mysterious health issues.
The Oxalate Hypothesis
Matthew started a low-oxalate diet in September, after I attended a presentation that described many of his long-standing symptoms, including the mysterious nausea he has been unable to fix.
I’ve been reporting on his low-oxalate experiment in our bi-weekly newsletter, but it’s time for another oxalate post. You can find my first oxalate post here. This post describes the specific protocol that Matthew has been on for the past four months.
The Genital Pain Protocol
Most people don't talk about genital pain. Unless you have it, you probably don't know it exists, but it’s much more common than most people think.
There are numerous health conditions that can cause genital pain, and oxalate sensitivity is (apparently) one of them.
Matthew also has psoriasis. He was diagnosed as a child, and according to his mum, it first showed up as a severe diaper rash that wouldn’t go away.
‘Genital psoriasis’ continued to plague him throughout his life (I wrote about the impact of that affilction here). Now he thinks that was an incomplete diagnosis fifty (!) years ago. He thinks that he may have had trouble processing oxalate all his life.
The Pain Project
Background: In the 1980's, Dr. Clive Solomons developed a protocol to treat a mysterious and painful condition thought to affect only women. He called it 'the pain project', and he treated thousands of women with vulvar pain through a low oxalate diet and additional therapies.
We now know that this kind of genital pain affects men too. In her book Come As You Are, Dr Emily Nagoski reminds us that all human genitals are all the same, just organized in different ways. Genital pain, like autoimmune disease, may be more common in women, but can affect anyone.
Matthew has 90% of the symptoms on this list.
Matthew and I did some research online, and Dr Solomons' protocol is the only one that we found that was specifically designed to treat the genital effects of oxalate sensitivity. Matthew decided to try it.
Here it is:
- Start with a low-oxalate diet (in my first oxalate post I explain why it can be tricky to figure out how to follow a low-oxalate diet).
- If that doesn't resolve the pain after a couple of weeks, calcium citrate is added.
- After a month, if there is no reduction in pain, Ox-Absorb, a compound that is no longer commercially available, was included.
- Then came N-Acetylglucosamine (NAG), in addition to the low-oxalate diet and calcium citrate. This part of the protocol lasts for a minimum of 3 months.
- Finally, if the symptoms still hadn't resolved, Dr. Solomons recommended hexadecyl tetradecenoyl oxtodecanoate (HTO), which I admit I don't know anything about.
Dr Solomons' cautioned that each addition to the protocol should be tested for at least the minimum recommended time, even in the absence of improvement. He also recommended extending the time at each stage if improvements did occur.
After consulting with his trusted health care provider, Matthew decided to combine steps one and two, because the importance of ingesting calcium and magnesium (and drinking lots of water) were emphasized in all the scientific and anecdotal reports that we read online.
He has been drinking several liters of mineral water each day, in additional to supplementing with calcium citrate.
He stayed at stage 1 + 2 for two months, skipped step 3, and then started step 4 with the NAG supplement.
What’s N-Acetylglucosamine (NAG), precious?
NAG is an amino sugar. Found in the exoskeletons of insects and crustaceans. Yum!
Dr Solomons hypothesized that supplementation with NAG might reduce hyaluronic acid degradation in the tissues, thereby reducing pain. He tested this hypothesis in 1997 and found that 58% of 556 volunteers who took NAG for a least four months while on a low-oxalate diet reported significant improvement.
I dove into the scientific research on NAG and learned that a number of health conditions have been traced to abnormalities in the creation and use of amino sugars like NAG, particularly diseases that relate to cell membranes, inter-cellular fluids and cell regeneration.
There is scientific evidence that NAG can be effective in treating joint damage and for restoring the integrity of the intestinal tract. Hm.
We always do a risk assessment before a new experiment.
We found a number of studies that considered the safety of NAG and no adverse effects have been noted in humans or animals.
We investigated the risks involved with a low oxalate diet and found nothing in the scientific literature, but a number of warnings in the anecdotal reports from individuals.
These people used the term ‘dumping’ to describe what happens when oxalate that has been stored in our tissues is put back into the body, ready to be excreted. These people warned against eliminating dietary oxalate too quickly, as sudden dumping of stored oxalate can overwhelm the system and cause damage.
These online reports also suggested that Matthew should expect an initial improvement after he stopped eating high-oxalate foods, and then some pretty unpleasant symptoms once the dumping began.
That's exactly what happened.
Anecdotal reports suggested eating high oxalate foods as a way to slow the dumping process, if symptoms become too intense.
Results have been mixed.
The severe and debilitating nausea which plagued Matthew for four years, is 90% gone. Except when he eats high oxalate food. That feels like a miracle.
The genital pain has increased significantly (as Dr. Solomons suggested it might). This effect is supposed to be short-term while the stored oxalates are dumped and excreted. However, it can take a year to experience improvement, according to Dr Solomons (six years for full remission of symptoms according to one anecdotal report online).
Matthew is now on a combined low-oxalate/high-oxalate diet. The symptoms of oxalate dumping vary depending on where the oxalate is stored, and they can get intense. When they do, Matthew has found he can take a short break by eating a high oxalate food, like spinach, turmeric or chocolate.
Reports from other people who have gone through oxalate dumping describe a process that ebbs and flows over months or years. That has definitely been Matthew's experience.
He's been having some particularly powerful dumping effects over the past month. This has included kidney sensitivity, flu-like symptoms, brain fog, disrupted sleep, night sweats and pain.
Despite the discomfort he remains encouraged. All of the effects he is experiencing suggest that the experiment is working.
For more information and peer support, there's a private Facebook group called Trying Low Oxalate.
If you think a self-experimentation approach might be helpful for you, we have developed a program to walk you through the process, step by step.
There is still time to register for the Autoimmune Healing Intensive this January.
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