My Struggle With CIDP (Episode 2, Season 1)

May 24, 2016

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 ramgopal.vallath@gmail.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

I Am Unchallenged


arun kumar k

The thought then crossed my mind – if India and Pakistan can find grounds where we can help each other and feel grateful/content, and both vacate Kashmir and give it breathing space, much like the armrest, all three of us can hug and smooch and exchange sidelong loving.

22:06:2020 5:07:31 pm