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Launching HSCT for Multiple Sclerosis at BLK Super Speciality Hospital, New Delhi
It has been close to six years since I had a rebirth, when my body was literally rebooted. Six years since I shrugged off the debilitating clutches of a rare and incurable autoimmune disorder. Today, I am glad to say that I have managed to facilitate the process that might bring in a cure for hundreds of Multiple Sclerosis patients in India who have lost hope; and hopefully, eventually to bringing an effective treatment to patients suffering from other autoimmune disorders such as CIDP, Lupus, Systemic Sclerosis, Rheumatoid Arthritis etc.
You might have already read my blog post on how I was derailed by a crippling autoimmune disorder, CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) at the height of my extremely successful career. It was a clinical trial conducted by Dr Richard Burt, head of immunology at Northwestern Memorial Hospital, Chicago that gave me my life back. The treatment involved a Haematopoietic Stem Cell Transplant (HSCT) to regenerate the immune system after destroying it using Chemo, Rituximab, ATG etc. It gave me a new lease of life. My body finally stopped attacking itself.
It also helped me reinvent my life as a bestselling author, motivational speaker, startup co-founder and science editor. Most importantly, I discovered that when one goes through extraordinary difficulties in life, one becomes very compassionate. I became obsessed with helping others – especially people suffering from physical or mental challenges or children or youth who require counselling or motivation. I started seeking out people whom I can support. Today I am the India liaison for the GBS/CIDP foundation and every week, I come across two to three people who need support. I help them to the best of my abilities. But my overriding dream was to be able to convince some hospital in India to adopt Dr Burt’s HSCT treatment in India, so that it can be accessible to thousands of patients. For the last five years, I have been reaching out to various hospitals in the country to adopt this treatment. Unfortunately, time and again, I came up against blank walls. Not one to be easily discouraged, I continued my search. I would talk about my dream during my motivational talks in corporates, hoping that someone in the audience would have some hospital contacts. Finally, when I was addressing a global leadership team of Dr Reddy’s Laboratory, I hit gold. Rebu Ninan, one of the employees, promised to use his contacts to connect me to various hospitals. He was true to his words and within a few months, connected me to Dr Dharma Chaudhary, the head of Haematology at BLK Super Speciality Hospital in Delhi. I was delighted to find out that Dr Dharma was keen on rolling out the treatment for MS. He also wanted to do it the best way possible. He was happy to take the support of Dr Burt to ensure that his time tested protocol and the experience Dr Burt had garnered treating hundreds of patients was utilised for launching the treatment in India.
Yesterday, after months of email and telephonic discussions half way across the globe, we had the pleasure of having Dr Richard Burt in Delhi, addressing some of the top neurologists, haematologists and other doctors in Delhi. The treatment is now officially on for MS. Dr Burt’s data indicates that the treatment reverses the condition in over 80% of RRMS patients. This will bring succour to hundreds of patients who have otherwise lost hope. I also hope this creates a domino effect where many more hospitals adopt the treatment. After that, it will only be a matter of time before these hospitals start similar treatments for Lupus, CIDP, Rheumatoid Arthritis, Systemic Sclerosis, Scleroderma etc. I have helped set in motion a tide of hope that will spread wings as time goes.
Those interested in understanding more on the treatment can contact me on my mail ID firstname.lastname@example.org. Please share this post so that it reaches as many people as possible. For a more detailed description of my disorder and the treatment and how I managed to reinvent my life, please read my book From Ouch to Oops
You might have read my earlier blog on how when I was 34, at the peak of my career and on top of the world, I was struck down by CIDP- a crippling autoimmune disorder. This was caused by my white blood corpuscles- my immune system- going rogue and attacking my own body- specifically, my peripheral nerves. You can read the details here E1S1
If you already have, please skip the next three paragraphs.
The story so far…
For those who hate to click on hyperlinks, here is the story in a nutshell- CIDP gradually wasted away my muscles, weakened my body, destroyed my balance- making it difficult for me to walk or even stand, making it difficult or impossible for me to perform mundane tasks such as buttoning my shirt, eating with my hand etc. Normal medications – IVIG, Steroids (prednisone) Azoran (Azathioprine) etc. had no discernible effect on improving my condition. Seven years after being afflicted, I enrolled for a clinical trial of a hematopoetic stem cell transplant (HSCT) procedure being conducted in the US. In 2011, at the age of 42, I went for the treatment.
The process involved removing the blood stem cells (Hematopoietic Stem Cells) from my blood, then rebooting the body by first killing all the treacherous WBCs using chemo, Rituximab and ATG and then injecting back the removed stem cells. The theory being that the new WBCs would not be corrupted by the rogue memory of the earlier lot and the body would heal.
The treatment substantially reversed my condition, albeit not fully. After the treatment, over the next few months, I worked out like a madman, building back my lost muscles. By the end of 1 year, my balance was substantially better, the strength in my hands, arms and legs were hugely improved and I was off all medications.
Now here is the current update ie. Episode-2, season-1.
It has now been five years since I got the second lease of life.
In these five years, I managed to completely reinvent my life – I published 2 books, became a bestselling author, became the cofounder of an exciting start-up, launched a science magazine for schoolteachers and became a much-sought-after motivational speaker for schools, colleges and corporates. My health no longer permitted me to become the CEO of a fortune 500 Company, but it did not stop me from dreaming of even bigger goals. I firmly believe that there is no point crying over the untimely demise of my successful corporate career; one has to accept reality and maximise it. So I have filled up every moment of my life with positive things to do. I have a new purpose in life – to touch a million lives positively. This makes me incredibly positive and ridiculously happy – always.
It was good that I learned the art of focusing on solutions instead of letting the problems take over my life, because three years after the Stem Cell Transplant, CIDP started creeping in again. Nowhere near as bad as earlier, but I started feeling some deterioration in strength and balance. As my body started slipping downward, I started the quest for fresh solutions.
I underwent one round of IVIG again – it cost Rs.6 lacs (thankfully covered by my wife – Jayu’s insurance). This arrested the downward trend. After two months, I had two courses of Rituximab – my favourite rat extract!! I also started on 2 grams of Cellcept every day. My condition seemed to stabilise, albeit at a slightly lower level than what I had reached after my Stem Cell Transplant (HSCT). My discussion with Dr Burt also indicated that some percentage of patients who undergo HSCT do get a mild relapse, but they stabilise back and have mostly gone off medication again.
Determined to leave no stone unturned for a complete cure, I went for a two-week naturopathy retreat at Dharmasthala – 6 hour drive from Bangalore. My heart was filled with hope. On the fifth day, I slipped on the oily floor, fell down and fractured my wrist and my knuckle. Calling up Jayu (my wife) and telling her I was heading back was tough- I could barely control tears of self-pity and frustration. But I have the ability to try and always focus on the way forward, and within five hours, I was on the long, 6-hours drive back home with my friend, Srini (whose treatment had come to an early closure thanks to me) driving the car. We completely enjoyed the drive and ended up singing Hindi, Tamil and Malayalam songs non-stop all the way. By the time I reached Bangalore, I was ready to take on the world and my CIDP. Unfortunately the fracture set me back in every way – since it was the right hand, I couldn’t type; I found walking more difficult, since one arm in cast created an imbalance and the last thing I wanted to do was trip and fall again. However, I continued to attend office. I am sorry to say I ignored my work-outs and walks during the two months that I had the cast on and it took me couple of months after that to get back to a routine.
I started experimenting with diets. I had heard that giving up grains and sticking to a protein heavy diet (paleo diet) helps autoimmune conditions. Dr. Terry Wahls in the US had cured herself of Multiple Sclerosis by following this paleo diet. I tried the Wahls protocol. It did not work.
I started taking regular yoga lessons. This seemed to help, as slowly my balance started improving again.
This was when I came across a book – ‘The Autoimmune Solution’ by Dr Amy Myers. She was again a victim of an autoimmune disorder, but had managed to cure herself of the disorder by a regimen of supplements and strict diet. The idea was to help heal the gut, reduce toxins, cure yeast overgrowth and reduce inflammation. Many of the supplements were not available in India, but when Jayu went to the US for a conference, she brought all these supplements from there. Thus, seven months back, I embarked on one of the toughest diets I have ever tried.
What I couldn’t have – All grains (wheat, refined flour, rice, oats, quinoa etc.); Potato, Tomato, Zucchini, Brinjal, Tapioca and other nightshades; all types of sugars, honey, sugar-free, jiggery; all dairy products and eggs; all legumes and all types of lentils; all peppers except black pepper; and all nuts and seeds. You might well ask what on earth I could have.
What I could have- Sweet potato, green leafy vegetables, cauliflower, broccoli, cabbage, coconut, all fruits, meat, poultry and sea food. Being one to love my curd (yogurt), I also innovated – created curd from coconut milk.
I also had tons of supplements in the first month- to heal the gut, improve detoxification, reduce yeast overgrowth, contain inflammation etc.
At the end of one month, I could feel a discernible difference. The side effect first- I lost ten kilos in four months and two more kilos subsequently. My balance started improving. Initially I put it down to the weight loss. However it soon became apparent that it was not just the balance, but also the overall strength that was improving – in my legs, my arms, my fingers etc. Over a period of time, I slowly reintroduced tapioca, tomato, potato, chilli (peppers) and extremely limited quantity of rice and lentils (once a week).
I pressed the advantage home and stepped up my exercising: now, I workout for 90 minutes in the gym every alternate day and every other day, I do 70 minutes of yoga in the morning and go for a walk in the evening. Over the last 2 months, the distance I walk has gone up from 2.5 Km to 5 Km. The speed has improved from 15 min/Km to 11 min/Km. I feel on top of the world (of course, no surprise there, since I never left the top of the world, even in the worst of times).
I have realised that holistic methods of treating disorders are as effective as they are unexplored and un-prescribed by specialists. . I have also been dabbling with meditation techniques and intend to explore that. I don’t know how much my body would continue to heal; maybe this is the best it will ever get. But I can assure you, it will not be for lack of trying.
So by actively seeking solutions, taking risks and experimenting with myself, I managed to identify two outstanding treatments – Stem Cell Transplant which got me back from 0% to about 90% and now, Myers Method, which got me back from the 70% I had slipped to, back to 90%. Would I recommend HSCT to others suffering from autoimmune disorders? Undoubtedly and unhesitatingly. It gave me my life back. But I would also tell them not to stop there, but try and address the root cause and embark on holistic healing and regular exercise and yoga.
Most importantly, I would request people to maximise happiness and find a positive and energising purpose in life. I will share more on my experience with this in my next blogs.
Do share these with as many people as you can. You might be saving someone’s life.
If you or your near and dear are suffering from an autoimmune disorder, or are going through a crucible experience in life, I will be happy to be a sounding board and try my level best to help you find positivity. Do reach out on my email ID email@example.com
You can also read my bestselling book -From Ouch to Oops. It is my life story – and I promise you, it will make you laugh. But I also promise you that it will make you want to embrace and enjoy life. To buy, click here From Ouch to Oops
The pictures taken before my treatment and after six months of intense body re-building post my treatment.
This post was originally written in my blogspot blog on 1st April 2013. Sharing now so that I can give an update in Episode-2.
I was thirty three and on top of the world when the niggling worry started. It was nothing serious in the beginning. I found that my hand would tremble when I was holding up a spoon, a plate, a glass of beer etc. My original self-diagnosis was that this was caused by work related stress. When one becomes a country manager at 31, apart from being on top of the world, the by-product is stress. And when at 33, I had moved into a telecom operation as head of sales and marketing, the effect was approximately like moving from the frying pan into the fire.
But stress did not explain the loss of balance I used to face while climbing down stairs, which was a second symptom that had started developing.
But being very busy climbing the corporate ladder (I became one of the youngest COOs in a telecom operation in India in couple of years), I ignored the symptoms. Finally, when I did meet a doctor, he examined me and said I was perfectly all right.
In the next two years, the condition quickly worsened. My fingers started losing their strength and it also became difficult for me to climb up stairs. The COO of a state telecom operation was a reasonably high profile position. I would be invited for various events and would feel a cold clammy feeling in the pit of my stomach if this involved climbing up on to a stage. I would be petrified of falling and would pray to god every step of the way. (Imagine being the chief guest at the Cochin Naval Ball and spending the whole time worrying about how I would climb up the stage instead of admiring the beauties I was judging.) I also started finding it difficult to do anything which required fine motor coordination, like putting on buttons. I had to stop driving, an activity which I loved.
Over the next 4 years, the condition steadily worsened and I had to move roles so that I could still manage to deliver on my job. In the meanwhile, I had couple of more wrong diagnoses from doctors and was told that the condition was genetic and untreatable.
It was then that my uncle Dr. Balakrishnan, a renowned doctor, helped me set up an appointment with the HOD of neurology at Amrita Institute in Cochin. Dr. Ananthakumar examined me and indicated that the condition was not congenital but was an acquired disorder called CIDP. To be 100% sure, he did a nerve biopsy. While waiting for the biopsy result, one day I contracted a viral fever. This triggered an acute case of the condition and I was laid up for about nine days. I could not lift my hands even 1 cm, sit up or even talk. Luckily, an angel by the name of Dr. Monica Thomas, whom I had never met before and who was referred to us by Dr. Ananthakumar, took the trouble to come all the way to my house after a full day’s work. She took one look at me and confirmed the condition as CIDP. She got me admitted in a hospital.
CIDP is an autoimmune disorder- Chronic Inflammatory Demyelinating Polyneuropathy. My own immune system was attacking my peripheral nerves and they were losing their conductivity. This in turn was making my muscles useless and over a period of time, the muscles were wasting away. For the first time in seven years, there was a tangible condition that I could fight. The standard treatment for the condition was to take an intravenous medication called IVIG. A full course was 2g/Kg of weight which in my case worked out to 160g. This had to be taken over five days. It cost Rs.6 lacs!! But at the end of the five days, I was way better. Over the next couple of weeks, my body became almost completely fine. I was better than I had ever been for the previous five years. I was on top of the world. I ran up ten flights of stairs to my office, cooked pizzas for my kids and buttoned up all the shirts with a vengeance! But in 45 days, the condition came crashing down again. The effect of the magic potion had worn off. The doctor had not warned me of this. For me, who thought the whole issue was behind me, this came as the rudest shock. I met the doctor again. He suggested I start on steroids. Steroids would suppress my immunity, and this would lead to an improvement in the condition. He also recommended another dose of IVIG. This time I took a fifth of the first dose, since we couldn’t afford to spend on a complete dosage.
Over the next 3 years, I took IVIG once every two months (the truncated dosage due to financial reasons). The effect kept waning and I had to take it even more frequently. The dosage of steroids had to keep increasing from 30mg per day to 40, 50, 60 and finally 80. I bloated up like a balloon and put on about 14 kilos. My eyesight started fading (an effect of the steroid and I finally had to undergo a cataract operation). In spite of all the medication, the condition steadily worsened.
Before the condition, I had always walked with a spring in my steps. Now I could barely lift my legs. I found it impossible to lift even small weights. My wrist started flopping – it lost all articulation. My left foot started dropping – the ankle muscle stopped responding. I had to lift the leg up high and place it forward to avoid tripping over a flopping foot. It became impossible to button up my shirts. When travelling, I had to wake up at 5.00 am for an 8 am meeting, since it would take me 90 minutes to put on five buttons. Finally I had to stitch special shirts with concealed press buttons with dummy buttons stitched on outside. The worst was when I had to go to the urinal. It would take time to find the zip with my nerveless fingers- while my bladder was screaming at me to go! And often, after the job was done, it would take as much as ten to fifteen minutes to zip back up.
Through all this, there were a few important rules I created for myself.
– Never ever think of what could have been.
– Always be cheerful and be the provider of cheer – at home, at work…
– Actively seek solution instead of moaning about the problem.
– At work, always do more than what is expected of me.
– Thank god every day for a wonderful family, great friends, relatives and above all, for my unconquerable spirit.
I would keep pushing myself to walk, exercise, do yoga etc., while continuously searching for solutions on the web. Unfortunately, fate seemed to think I needed a few more knocks.
At work, I had continued to take on extra responsibilities and work long hours, even though I could barely walk (I had to use a crutch) or use my fingers and hands (typing was a laborious process). One fine day, I got sacked for the unethical behaviour of some subordinates 4 levels below me. Life couldn’t get worse.
Fortunately, I had the ability to seek solutions instead of wallowing in problems and quickly found myself another job. Also on one of my internet researches, I came across a clinical trial that was going on at Northwestern Memorial Hospital in Chicago. I reached out to them and the nurse got back immediately with all the details of the program. We also heard from her that the doctor, Dr. Richard Burt, the head of the Division of Immunotherapy &am Autoimmune Diseases (DIAD) at Northwestern was slated to come to India for a talk. (Dr.Burt)
We attended the talk and he was kind enough to have dinner with us. He was as humble and down to earth as his achievements were lofty and life changing.
Over the years, he had treated many autoimmune disorders for which there were no real cures. These included Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Phemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymositis and Scleroderma. He had given life back to many patients who had lost all hope. Jayu (my wife) and I discussed and decided it was worth going for this. The procedure was ‘Autologous Nonmyeloablative Hematopoietic Stem Cell Transplant’. A mouthful, I agree! But what it meant was usage of one’s own blood cell producing Stem Cells to regenerate one’s blood cells. The term non-myeloablative meant the dosage of chemo was not very aggressive.
The whole evaluation and treatment had to be in Chicago, spread out over 10 weeks.
For Jayu and I, the trip was in a way a nice holiday too. We enjoyed the stay at Chicago, right in the middle of the Magnificent Mile. Even though there was so much uncertainty, it was also a time of intense hope. The fact that my classmate couple, Manish and Radhika and another classmate Sridhar and his wife Vasudha made every effort to make us completely comfortable in Chicago helped hugely. Skype to our parents and children and family also kept us connected to loved ones and their best wishes and prayers.
The first 2-3 weeks was for evaluation- to make absolutely sure that the condition was CIDP. This was followed by mobilisation – where a dose of chemo was injected into the body to stimulate production of Stem Cells. About ten days later, sufficient quantity of Stem Cells were then harvested and kept aside. Then four weeks later, the actual treatment started. This included injecting chemo and certain other substances into the body to completely knock out the entire immune system. After this, the Stem Cells were re-injected into the body and within about ten days, I was discharged.
The staff at Northwestern was amazing. The nurses were the most professional I had ever seen in my life. Even in the hospital, the doctor was considered to be a miracle worker. But more than anything, he was a wonderful person: sensitive, empathetic and extremely knowledgeable.
By the last four days in the hospital, I could start feeling my body responding. My will, which was long shackled inside an unresponsive body, exulted. I embarked on a rigorous exercise routine.
Back home, over the next year, I set myself a blistering target to recover my lost muscles. I created a target sheet with daily increasing targets for the next six months for 28 different muscle work outs. Then, every day I pushed myself to do better than the target.
The fact I was writing my first book – Oops the Mighty Gurgle gave me a huge mental push. The book was so wacky, funny and totally in the realm of the absurd that writing it kept my spirits soaring high. I jokingly tell my friends that it was a mix of the chemo and the rat and rabbit extracts that were pumped into me that made me write such a crazy wacky nutty novel. You can read it here (Caveat : be prepared to laugh your backside off!) Oops the Mighty Gurgle
I have been trying ever since to get some of the major hospitals in India interested in the treatment and collaboration with Dr. Burt so that many more persons could have access to this life changing treatment. I have run up against walls, but will not stop trying. In the meanwhile, I would like to spread awareness about this treatment to as many people as possible. If they can afford the treatment (it is expensive), they should consider this seriously.
Today, I have almost completely regained most of my motor abilities. I can button up my shirts, drive a car, lift weights, travel alone, climb up steps without holding on to railings and can lead a pretty much normal life. I still can’t run or type very fast. My handwriting still sucks. But I am, to use a slang, rocking. I am on my second book, am consulting in the education domain and give motivational talks based on my life’s experiences.**
I continue to thank god for my wonderful wife, my lovely kids, my relatives, my friends, and my never say die spirit. But most of all, I thank god for Dr.Richard Burt and the wonderful work that he is doing, saving hundreds of lives every year.
I can be contacted on my email ID firstname.lastname@example.org and will be delighted to extend whatever help I can to anyone who is suffering from any autoimmune disorder or facing any other challenge- physically or mentally.
** I have subsequently completed my second book, From Ouch to Oops. It is my life story and it is meant to help people convert every downturn into a success. It is also humorous and I promise it will make you laugh a few times, even while making you think deeply. You can buy it here From Ouch to Oops