Nathan's Nephrotic Syndrome Remission Story

Meet Nathan

“I’m too [controlling] of my own body to give [up] the reins [and] trust someone else to fix me. So upon learning my situation I just dug into researching and reading. After enough research, I felt confident to begin self-experimenting with various things and tracking to see what they did in terms of [proteinuria and] creatinine. It was a bit of a tedious process tracking everything, but it slowly allowed me to key in on what works for my body and what doesn’t – and allowed me to go from [spilling] 17,000mg down to [300mg of protein] and a GFR of 40 up to 120.” 

The above words, spoken by Nathan, are a sneak peak into his miraculous nephrotic syndrome healing journey resembling a self-imposed science experiment. In 2020, Nathan was diagnosed with a rare form of nephrotic syndrome, Complement 3 Glomerulopathy (C3G). At that time, he was experiencing both heart and kidney failure, and the prognosis looked grim. But Nathan wouldn’t accept illness as his fate. Through playing the role of the lab rat in his own study, Nathan ultimately reached remission and perplexed his doctors with a healing miracle!

Before we dive in any further, I want to remind you that this is an anecdotal patient story I am sharing and not scientific evidence of any sort nor recommendations that you should be following without the guidance of a qualified doctor and/or practitioner. 

Around the age of 20, Nathan began experiencing strange symptoms such as on-and-off fatigue and swelling. He shared that his sister has lupus and his mom has rheumatoid arthritis, and that autoimmune disease unfortunately found its way into his family. Nathan, having witnessed his family members’ healing journeys, figured there wasn’t much he could do. “I ignored it and it slowly got worse, but it was one of those things [where] you don’t realize how bad something’s getting while it’s happening,” he shared. “[My] quality of life [was] slowly going down 1% every couple months.” 

Finally, Nathan’s symptoms peaked at age 30. He described a week where he was bedridden and experiencing severe swelling and other strange symptoms. He said, “Finally my mom convinced me to go to the doctor, where they determined I had kidney failure at that moment.”

Nathan's Diagnosis Story

Nathan was hospitalized with both kidney failure and heart failure. “Crazy thing, they think I actually died in my sleep during that first week and came back [to life],” he shared. “My central nervous system was going wonky.” In fact, Nathan couldn’t fall asleep for a month despite doctors’ best efforts. He explained, “They put me on all kinds of [medicine] to sleep, but my body would not let me sleep.”

Labs revealed Nathan was peeing out 17 grams of protein per day. Luckily, after a few days of hospitalization his kidneys stabilized at a GFR of 40 and creatinine at 2.1 mg/dL. A biopsy interpreted by a panel of some of the best nephrologists in the country led to a diagnosis of C3G kidney disease. According to Nathan, C3G is extremely rare and, while similar to FSGS, is even more difficult to treat. “[My nephrologist] anticipated I would be on dialysis in the near future based off of my biopsy results and how far along [the illness] was,” he said.

Nathan was also told to stop pursuing his greatest passion: bodybuilding. Nathan had been a fitness enthusiast since childhood and found joy in building muscle. He historically competed in bodybuilding, but hadn’t for a few years at this point due to his symptoms. “They were painting this picture where my nephrologist told me that I could never work out again,” he explained. “So expect a new normal where I could perform slow cardio, but no more heavy weights.” 

A life without lifting wasn’t going to fly for Nathan. “That was a wake-up call for me. I love fitness, being healthy and traveling. A lot of my lifestyle doesn’t bode well with being sick,” he stated. “No one is going to care about my quality of life as much as I will.”

The Nathan Experiment

Nathan is a researcher at heart. Beginning as a young teenager, he tracked his diet and exercise to understand what would drive optimal fitness and health. And now, he was ready to apply this data-driven approach to recover from C3G and heart failure. He began reading scientific studies and journals. “In the beginning, most of it made zero sense to me. I would read [a study] five or ten times in a row,” Nathan shared. “It was one of those things [where] if you read and research enough it starts to make sense. [You] become an expert.” 

Nathan began by examining his biopsy report to understand exactly what was going on with his kidneys. “[I learned that with] different levels of scarring, interstitial fibrosis and tubular atrophy, when you get past certain points patients end up on dialysis,” he explained. 

Nathan recalled reading a study that pretty much stated once you’re at 50% interstitial fibrosis and tubular atrophy (IFTA), dialysis is imminent. At this point, Nathan had reached 50% IFTA and, in addition, his kidneys were 70% scarred. “Knowing how far along and how bad it was, [my doctors] wanted to put me on high-dose prednisone and [immunosuppressants],” he shared.

Conventional Medication

Nathan’s first experiment was conventional medication. He began taking prednisone and Cellcept per his nephrologist’s orders. During this time, Nathan was pursuing bodybuilding. He adopted a low-energy and low-carb diet to combat the prednisone side effects, like swelling and moonface, and encourage a muscular physique. After four months of side effects and a lack of improvement in his labs, Nathan decided not to refill his immunosuppressant prescriptions. He did remain on losartan, as he had read about kidney-protective effects of this blood pressure medication, as well as a beta blocker for his heart. But, as for prednisone and Cellcept, Nathan quit both cold turkey.

“I realized if they’re telling me I’m going to be on dialysis in a year or two, then why not just try my own thing and if it works, I’ll prove them wrong and it will be great,” Nathan stated. “Essentially if I do my plan, [there is] nothing to lose if I was wrong. I was just going to be [at dialysis] slightly sooner.” 

Nathan repurposed his perception of his health as a “project” rather than life or death. He assured himself, “I am going to be around for a long time,” and ultimately enjoyed the process of trial and error that led to remission.

Like a science experiment, Nathan only changed one variable at a time so he could pinpoint exactly what effect each respective change he tried had on his body. He drew blood work twice per week and tracked his urination closely with protein test strips. “[I found I] could guesstimate based off of the shade of green on the test trip to 5% accuracy what [the result] would be from the lab,” he shared. “[It was] easy for me to accurately know daily where I was at and track every single pee and keep fluid intake the same.” 

Nathan recorded his sleep, diet, exercise, daily habits and pretty much everything he did. He described this as a very slow and tedious process. He would add on variables one by one. If his labs got better, he’d keep a habit and add on something else. Otherwise, if it made his labs worse, he’d remove the trigger, find stability and then try something new.

Diet

When it came to what he ate, Nathan began with an elimination diet and followed a fasting schedule. “I figured the less stuff I was putting in [my body], [it] gives my kidneys a reprieve,” he said. “[I read] cool literature on intermittent fasting and autophagy in terms of the body and cells replacing themselves and healing during the process. All of that to me sounded like it didn’t hurt to try.” 

Nathan began by eating once per day after his weight lifting workout. He mainly consumed salad and grilled chicken, and avoided gluten, dairy, red meat and processed foods. To combat the swelling, he cut out carbohydrates and sodium. “This was a temporary ‘fix’ as I worked on decreasing spillage,” he explained.

Over time, Nathan adjusted his diet, monitored his proteinuria fluctuations and found what worked best for his body.

Supplements

Nathan read scientific studies about various supplements that helped promote healthy kidney function and reduce proteinuria. As part of his trial and error, he eventually found three supplements that correlated with optimal labs. He noted that he sourced the highest-quality brands for safety and efficacy.

Pulling from Traditional Chinese Medicine, Nathan took astragalus root. He said the supplement correlated with a significant rise in GFR (from 40 to 120) and drop in creatinine levels, and also helped with anxiety. But, while this supplement appeared to help with his kidney function, it did not appear to reduce proteinuria.

Secondly, Nathan took a supplement called Pycnogenol, which is a pine bark extract. He sourced a high-quality version from France. He had read studies on the supplement being good for the kidneys and reducing proteinuria. 

Thirdly, Nathan also took curcumin, which is an anti-inflammatory compound derived from turmeric root. He presumed that in place of prednisone, this supplement could support healthy inflammation levels in his body. 

As a side note, Nathan also began taking a high dose of ubiquinol, the active form of CoQ10. He decided to take this supplement to primarily support his heart health, but also knew that ubiquinol has potential benefits for kidney health, as well. 

Mental Health & Stress

Nathan, who described himself as likely more anxious and sensitive to stress than the average person, made the connection between mental health and his proteinuria levels. “When I was stressed, my numbers would go crazy for the next couple of days,” he shared, alluding to the results from urine test strips. As long as Nathan rebounded from stressors along with maintaining good habits for sleep, diet and movement, his proteinuria levels would always drop back down.

Nathan’s history is also important to factor in when correlating stress to his illness. After a successful investment, Nathan left college and pursued his love for travel. But despite living out his dreams, a transient lifestyle can be hard on the body. It was around this time, Nathan noted, that the swelling and edema began.

Later in his twenties, Nathan worked long and sedentary hours in a corporate role. For months at a time, he’d work twelve hours per day in pursuit of overtime pay.  He was focused on his career and bodybuilding, and not so much on his mental health. “I didn’t care about the ‘inside part’ as much as I should have,” he shared. 

And, when the pandemic hit, Nathan was laid off – which he definitely characterized as a stressful life event. It was three weeks after losing his job when Nathan landed in the hospital with organ failure. 

After his medical scare, Nathan made the decision to prioritize his mental health amidst a difficult diagnosis and decided not to return to the corporate world while he healed. Nathan was blessed with the opportunity to focus solely on fitness and wellness. He had returned to competing in bodybuilding, which brought him joy. And, really, this period of healing and reflection ultimately revealed to Nathan what was most important in life.

“In my twenties I had a flashy Ferrari,” he shared. And while Nathan still enjoys cars as a hobby, he explained, “I cared a lot about that dumb stuff and not enough about [what matters]. When I thought I was dying [and it] didn’t look good, [I] realized what’s important is your relationships with people, [good] times and memories. Everything else considered ‘cool’ and fancy doesn’t mean anything at the end of the day.” 

Nathan took this time to really slow down and prioritize his relationships with his family and his fiance. “I feel like my purpose lies in my relationships. [I am] very thankful for that aspect,” he shared. “[I] had my priorities out of whack for a long time. A blessing [and] silver lining to this difficult journey.” 

Above all, Nathan emphasized the importance of practicing gratitude. “Just being happy [and realizing there’s] so much to be grateful for all helped,” he said. “I tried being more loving and grateful to my body.”

Organ Health

Nathan didn’t want to leave any stone unturned in his healing journey. As a result, he pursued additional diagnostics to ensure he was supporting his body as a whole and not simply one or two organ systems. “I realized everything in the body is connected. If my kidneys are struggling, [I needed to] make sure everything else in my body was not struggling and help the weakest link,” he explained.

Nathan ran diagnostics at third-party labs as well as through his nephrologist. He noted that he was very lucky to have an open-minded nephrologist who allowed him to “experiment.” Nathan would bring research to his appointments and propose certain tests. “As long as [the test] made sense, he’d order it,” Nathan shared. “[My nephrologist] enjoyed watching the process.” 

Based on the results, Nathan observed that he had hypothyroidism. He had read in scientific studies online that a thyroid imbalance put pressure on the kidneys. His doctor prescribed synthetic thyroid hormones and, according to Nathan, his thyroid levels optimized.

In addition, Nathan came to the conclusion that heart health was a priority over kidney health. He could live on dialysis without his kidneys; but he couldn’t live without a healthy, beating heart. Nathan had read emerging studies on certain peptides reducing scarring of the heart. At the time, Nathan’s heart showed 80% scarring (and recall, his kidneys were majorly scarred, as well). 

Nathan was able to legally obtain peptide injections through a lab. He had them third-party tested for safety before using them. After a couple months of peptide therapy, his cardiologist appointment came around. A test revealed that the scarring of Nathan’s heart was almost 100% gone. He recalled his doctor saying something along the lines of, “This is insane. Never ever once in my practice have I seen this. It must just be a miracle.” When Nathan told his cardiologist about the peptide therapy, the doctor was unfortunately quick to dismiss it. 

But that wasn’t going to stop Nathan from celebrating such a major win!

Nathan's Path to Remission

“The Nathan Experiment” was proving to be a success. In determining an optimal diet, supplementation protocol and lifestyle – Nathan ended up balancing his thyroid, reversing the scarring of his heart, healing his kidneys and nourishing his body as a whole. And he accomplished this all while still continuing to pursue the lifestyle of travel and fitness that he loved.

Drum roll, please! Slowly but surely, during this time the reduction of Nathan’s proteinuria also ensued. Over the course of several months, he observed his urine protein drop from the initial 17,000mg to 10,000mg, and then from 10,000mg to 7,000mg, and then from 7,000mg to 5,500mg, and finally from 5,500mg to 1,000mg.

“Because of where [my numbers were] to begin with I didn’t in my wildest dreams think I could get them to where I got them,” Nathan exclaimed. “I hit my goal with my nephrologist, which was under [1,500mg] he considered remission.” 

But that wasn’t even the happy ending for Nathan. Two months later his labs revealed only 600mg of protein in his urine. And then from there, Nathan hit an all-time low of 300mg. At this point, Nathan metaphorically waved the white flag of truce and committed to his current diet and lifestyle routine for the long run. All in all, it had been an eight-month journey from Nathan’s diagnosis to a natural remission.

Nathan shared, “The level of scarring I had and where I was at – it shouldn’t ever have been able to be now where I’m having negative [protein] test strips all the time while consuming 300-plus grams of protein.”

Nathan's Next Chapter

Nathan has sustained a natural remission for about two years now. He noted he has the occasional spike in urine protein after a cold or a virus, but that his levels always return to remission once the illness subsides. 

Nathan currently takes the supplement protocol discussed above, along with losartan and the beta blocker. He stated, “I utilize no western [medicine] outside of Losartan for my kidneys [and a beta blocker for my heart], and I have never been, nor felt, healthier than I am right now.”

Nathan continues to compete in bodybuilding and now eats about 300g of protein per day. When he was flaring, he was eating more like 120g of protein per day. Nevertheless, he has to be careful when it comes to his sport. “Keeping my kidneys happy and [bodybuilding] is tricky,” he explained. “I can’t use [performance] supplements; whey protein is about as crazy as I can get there!”

As for diet, in addition to lean meats and vegetables, Nathan eats a little bit of dairy, like greek yogurt, and incorporates some eggs. He does eat lower sodium still because he feels better doing this, but he doesn’t monitor his sodium nearly as closely as he did while he was actively flaring. “I still stick to a specific light diet with intermittent fasting, but it doesn’t have to be quite as restrictive now that my other numbers are better,” he shared.

Managing stress also remains a priority for Nathan. His decision to not return to a corporate job has been a huge win for his mental health. He remains retired for the time being. Nathan, who faced a humbling near-death experience, takes the time to slow down and prioritize sleep, wellness and fitness. These healthy habits have been paramount in helping Nathan sustain high energy levels, strong immunity and overall good health. 

When asked about his advice to all of us nephrotic syndrome patients out there, Nathan shared, “Western medicine has its place, but there are definitely other effective routes. [You] just need to find what works for you. Be militant with monitoring and understanding your blood work and tests, and you’ll likely start to learn your body and disease, and what seems to calm it and, likewise, what might aggravate it. It was worth every moment [and] penny I put into figuring [out] my [health].”