Ayurvedic medicine for FSHD – My story

by Kulangara Sivadas, Foothill Ranch, California

Editor’s note: This story is one person’s anecdotal experience. He has asked Western-trained physicians to comment on it. Their remarks are added at the end of the story. In addition, we recommend you read this Johns Hopkins Medicine page about Ayruveda.

For more than three years I’ve been contemplating on sharing this story. Each time I braced myself to write, I was hesitant because I wanted to convince myself one more time before ‘going public’ with it, or at least run it by an FSHD clinician who practices Western medicine.

Today I can confidently say that I’ve met the first condition above (i.e., convincing myself adequately) by validating my findings using my own body for a sixth time. My efforts to get neuromuscular doctors in the US to endorse my experiences ran into regulatory and technical roadblocks though. Regardless, I’ve now come to believe that I’ll be doing a disservice to my fellow FSHD patients if I don’t share this information soon.

It was in 2013, at the age of 48, that I was formally diagnosed with FSHD. Since my attending physicians in Orange County, California, were able to address my most immediate impairments (frequent falls, loss of strength etc.) using AFOs and hand braces, I wasn’t overly worried about my physical limitations or prognosis at that time. As years passed, my gait slowed down considerably, AFOs started making my legs numb, and I could barely drive my car to work which was only 20 minutes away. It was then that I started panicking because my career was at stake now.

And then there were a slew of mobility-unrelated issues that I had conveniently ignored since the age of 14, which suddenly came to the fore, such as swallowing difficulties, speech and hearing impairments, fatigue, drooling, choking, etc. I started eagerly following FSHD and muscular dystrophy-related drug trials and research happening in the US and other countries. My only aim then was to find something that would halt the disease progression at least temporarily, so I could extend my ‘happy work life’ a little longer.

“Muscular Atrophy Bhasmam”

During one of my visits to India (where I’m originally from), I happened to hear about Dr. S. Vishnu Nampoodiri of the Karuna Foundation, an Ayurvedic doctor in the southern state of Kerala, who had been treating neuromuscular conditions using herbs, minerals, etc. for more than 20 years. For those who are not familiar with Ayurveda, it is one of the world’s oldest holistic healing systems developed more than 3,000 years ago in India. I was in a rush to meet with him before my vacation ended. This was back in 2018. I managed to squeeze in an hour of consultation time with this busy doctor and he prescribed a ton of medicines in 11 specific categories! And he wanted me to carry all that back to the US to start a 3-month treatment regimen immediately.

As I packed up the medicines and left the hospital that day, I was feeling skeptical as to how this therapy with no apparent support from clinical evidence was going to do the job. Also it was hard for me to comprehend how anyone could come up with cures for complex genetic diseases with such ease, despite the fact that treatments remained elusive to an advanced, thoroughly systematic, machine-like efficient drug discovery system of the West.

Once I was home in the US, I got so caught up with my work and life in general, I did not get time even get near my medicine packages. As weeks passed, it started bothering me that I had not even checked what was held in those boxes. And so on a weekend, I made the time to unpack each of them and something caught my attention immediately. It was a label that read “Muscular Atrophy Bhasmam,” which simply meant “Medicine for Muscular Atrophy.” I was awestruck by the boldness carried in that audacious name! My immediate reaction was OK, could I start on this medicine right away and perhaps take the other ones only if needed? But when I rang up the doctor to discuss my shortcut idea, he shot it down immediately. He insisted that I should be taking at least 2 other medicines (out of the 11 that he prescribed) for their compounding effect to happen. At the same time, he reminded me that each medicine had a system-level purpose that couldn’t be ignored either. And so in right earnest, I decided to start all the medicines and watch what happened.

Ayurveda plus a strong resolve to heal

On the second day of starting the medicines, the first thing I noticed was that I didn’t fall backwards when I got up from my bed early morning. Standing up and falling back had been a morning ritual for me for a long time. I couldn’t believe it the first time, so I repeated the act multiple times to confirm this was indeed happening. Not only could I stand up, but I was also able to walk forward without falling back even while not using AFOs. A couple of days later, I was able to make slow turns on my foot without losing balance, raise a cup without exterior support and even walk backwards, albeit slowly. Then I started flexing my toes up and down, doing leg-raises in the supine position, and flexing facial and tongue muscles. In about 10 days I dared trying even crunches. I also noticed a sharp reduction in food-choking episodes (which were routine before), spraying saliva, and drooling. So distinct were the impacts of my exercise, that I dropped two inches off my waistline and firmed up muscles in the abdomen and calves. I also started being able to talk louder and with less slurring.

During the past three-plus years, my Ayurvedic doctor has been working with me to cut down and optimize the numerous formulations of his first prescription and add supplements as necessary, in tandem with my feedbacks and his insights. While my strength and balance has somewhat deteriorated in the past year, and I also had to switch to a wheelchair because AFOs had been constraining my circulation, I can confidently say that these medicines have overall been able to keep my disease in check. The medicines’ efficacy became evident each time I stopped taking them under controlled conditions (for experimental purpose). My fatigue, muscle weakness, choking, imbalance and other symptoms crept back in a matter of one or two days. And most importantly, my ability to use my right foot and hands for driving, steering, filling gas, etc., became possible only because of these medicines. Could I declare now that I owe it to this doctor and his treatment, for helping me continue in my job? I think so!

Some of the medicines I’m taking now are shown here. What I understand is, these medications (and similar ones developed in the same hospital for the treatment of more fatal ailments such as cancer, liver diseases, etc.) are the result of intense research work done by my doctor’s guru, the late Sri. Swami Nirmalananda Giri, in merging Ayurvedic practices with other health practices such as Schuessler’s principles (homeopathy), “Siddha” (another form of Indian alternative treatment), nanomedicine etc.

Meanwhile, I had been looking out for pathological changes (both positive and negative) in my body while undergoing this treatment. My Ayurvedic doctor ordered frequent CMP-14 tests to monitor liver, kidneys, electrolyte and acid/base balances, TSH test to check thyroid function, and CBC tests to evaluate blood cell counts, all of which returned nominal values. He was also anxious to track my CPK levels because it seems that some of his neuromuscular patients showed a major drop (such as from 900 to 300) in that measurement during the treatment course. However my CPK levels did not vary much (hovering around 330), while creatinine levels also kept steady at 0.65. I also tried contrasting the EMG/ NCV test results from 2012 during the early stages of my FSHD diagnosis with the new results from 2019, one year into the treatment. Since the test from 2012 was confined to my left muscles (triceps, midvastus and anterior tibialis), we repeated tests on the same muscles in 2019 which found only marginal reduction in EMG amplitudes and conduction velocities. However, my disease progression was mainly felt on the right-side muscles, for which unfortunately my neurologist here did not have any data to compare from the past tests.

In conclusion, I would encourage anyone with muscular dystrophy symptoms (FSHD or otherwise) to give this treatment a try if feasible. At the same time, I would like to remind that Ayurvedic therapy is subjective (patient-specific) and not indication-centric. In other words, two patients showing similar indications (such as FSHD in western classifier terminology) may receive different medicines/ treatments depending on the patient’s Ayurvedic phenotype termed Prakriti, which in turn relies on the patient’s genetic makeup. During the treatment, patients are also required to show a strong resolve in healing themselves, which may entail changing habits, diets, attitudes, etc., in the long run.

Commentaries on this story by Western-trained physicians

Doctor 1: “It is very difficult to arrive at any definitive conclusions based on anecdotes, especially when dealing with chronic genetically mediated diseases due to their heterogeneity, potential for phenotypic variability, and varied clinical progression. The statement that Ayurvedic medicines are nontoxic is not correct. A lot of Ayurvedic medicines contain alkaloids and even metals which may be potentially very toxic.”

Doctor 2: “Very interesting article. Sounds authentic and scientific from the way investigations and follow up is done. Also, this person took a combination of modern medicine and ayurvedic medicine. I don’t see anything controversial from the eyes of a modern medicine practitioner, nor a promotional intention. What we lack in India is an evidence-based approach and research publications in these forms of treatments. This article will help to generate an awareness about alternate forms of therapy, especially in those musculoskeletal and neurological disorders where modern medicine does not have much to offer.”

For more information

Those who need more information about the discussed story or treatment, may write to the Ayurvedic doctor Dr. Vishnu Nampoodiri vishnunamp@gmail.com or the author Kulangara Sivadas siv.kulangara@gmail.com