A true story of an Isaac Syndrome patient. A gig’s world transformed into serious profiling in March’16 when I got diagnosed with a rare medical condition, Isaac Syndrome even called Neuromyotonia (a diverse disorder as a result of muscular hyperactivity) and Membranous Glomerulonephritis (a slowly progressive disease of the kidney).
My encounter with time had just started and I had to let go working as an Investment Banker. From Steroids to IVIg to Plasmaferisis to shots of ACTH injections to pain killers to immuno suppressive agents to intestine related medicines to pro-biotic to some alternate medicinal streams, as high as 38 pills were a part of my daily food platter with enough food restrictions due to side effects like shooting sugar levels, fluctuating blood pressure, IBS, disturbance of stomach lining, diarrhea etc…
As medicines& treatments have limitations, my health has proved a tragic experience wrapped in bonkers, making me crawl through broken glasses from time to time. I choose to focus on this journey & not the destination. As I can’t go back to my mother’s womb, I’d better learn to be uncomfortable & fight back. To do otherwise is to settle.
Post Plasmapheresis??
It is similar to Dialysis. The medical procedure is designed to remove disease-causing agents or antibodies by extracting, treating & returning of blood to the body. This procedure helps in treating many auto-immune diseases.Post discharge it took me good 20 odd days to normalize as I encountered weakness & pain in thigh &back region, all medications being like before. There were times when I felt all my channels through which energy flows within the body were removed & started doubting the success of my procedure. I believe it was a matter of time when in Feb’18, this vicious cycle saw some light.
I have always been a strong believer in ideologies which support ‘repairing the roof when the sun is shining bright’ & therefore post the ministration in Mar’18, my focal point of convergence was searching for Anchors to help make a shift from symptomatic convenience to exploring a more enduring way to healing. Since generations, Allopath medications have rubbed shoulders with our Genotype in ways where the two are inseparable but firm-believers prefer a deaf ear to the din & be loyal to Mother Nature.
I remember watching an epic 90’s film, Forrest Gump again, but this time this rejuvenating experience took my imagination on a ride. I decided to take up Table tennis (a drug- free therapy) as players on sports field and those battling chronic ailments have much in common. Even NASA studies say ‘table tennis is the most difficult sports to practice because of its complexity in the use of muscles’. Therefore thought of putting some muscle at play & experience a popular theory called ‘Sports Medicine’ (a specialization that studies medical related principles with sports science to prevent injury and promote healing).
It was not only to change my idea of having fun but simultaneously pound reminders to my psychometric abilities that any suffering is as constant a phenomenon as temporarily losing a game. No situation or circumstance in life is permanent. As Walt Disney once said ‘’the difference in winning & loosing is more often not quitting’’.
To my surprise, on a May’18 morning some cousins made a stopover to clear air on my so-called big picture work legacy when they heard I was gathering all the muscle to get back to work in-spite of my energy & body pain levels having oscillatory pattern throwing enough surprises from time to time.
I had worked for 12 years with well known Investment Banking institutions & still get nostalgic about those early morning drives with soothing music, the office ambiance, the aroma of coffee, meeting like-minded co-workers, social and behavioral reinforcements etc…
One of the major side effects of some Rare Health Condition is to be on the shelf. Especially in countries like India, work from home is hardly an option. During my journey I was pleased to know that people around me were educating themselves with fascinating concepts & theories to pacify &find solutions for my bailout:-
1.The Spoon Theory’ which explores the difference between those with ‘limited energy reserves’ vs without to get through their day.
My learning: – Any drastic change in life is difficult to accept. It is unimaginable that something which is gracious plenty for others would be within limits for me. It taught me to be conscious about prioritizing time.
2.‘Convalescence’, means gradual return to health while one still needs time to recover from illness, usually by resting.
My learning: –moved goalposts to realistic targets &started believing in patience being virtue.
3.‘Support beyond the Pill’ is adequate health insurance, compulsory Corporate Social Responsibility (CSR) initiatives, work from home facilities, a supportive Government etc…
My learning: –optimum utilization of any resource can work as a support system during the treatment duration & help ease financial, social & personal enforcements.
In June’19 some friends & cousins swung by and my entire house got immersed into a rare form of fever pitch, for the Cricket World Cup carnival.This was exactly the time when stitches in my outlook got me, in close proximities to alternate therapies from my mainstream medicine. I chose not to be ignorant of the man standing with the sword behind the red cape as popping heavy main stream prescription for long durations could increase the rate of side effects. Active ingredients in various preparations can quietly clash & invade our system in low tones.
Today, when it comes to healthcare, millennials wear a different dress code. They take care into their own hands, do their own research; want freedom of choice & right to information and are always curious and so were my cousins who gathered their inquisitiveness on the implementation of alternate therapies & wanted to dig into the integrities.
I relied on anecdotal experiences than proven evidences before deciding on small but important miscellaneous changes by paying attention to body postures (curbs pain & channelize uninterrupted flow of energy), inculcating a self motivating attitude (acceptance is virtue), wearing surgical mask while being exposed to a crowded place (helpful while consuming medicines like immuno suppressant’s), sports medicine (mind distraction, physical activity), wearing loose clothes (to avoid nerve compression & feel relaxed), pain management (a piece of raw garlic early morning & magnetic acupressure), managing stress levels (meditation, music therapy) etc…..
These therapies integrated well with my allopathic medicines and most importantly my treating doctor gave a green flag. I kept reminding myself that I had much more to gain if these therapies fell in place than to lose if they don’t.
The triumph did likely be fleeting when the impact of these procedures showed deterioration and instances of weakness, pain, fasciculation’s returned back with authority but as my treating Dr and mentor, Dr.Panagariyaji mentions ‘A fixed method is not always a method’, he allowed me to explore alternate effective therapies.
Diagnosed with Lymes
With all the ups & downs it was mid’18 when my health felt jittery again and the suppressed symptoms aggravated with increment in cramps, weakness, tiredness and pain. I decided to pack my bag & visit Jaipur where I was tested for Lymes?? (An uncommon infectious disease caused by four main species of bacteria, spread by ticks).
By the time I wondered the cause of this debilitation, the results came positive. The unresolved mystery of symptoms disseminating to my joints & shoulders got unfolded. I was given heavy antibiotics that fight bacterial infections with a caution that I had later stage, signs & symptoms of the disease which complemented my existing disease (Isaac Syndrome) to make my symptoms worse.
Even after popping medicines for 4 weeks, the symptoms showed no signs of improvement; post which my doctor, contemplated Rituximab (is a monoclonal antibody, used to treat certain types of cancer, arthritis, and blood vessels helping decrease joint pains & swelling).
Though a platter of medicines became a daily dose of well-being but the idea of regular consumption generated a mixture of gilt due to its profound impact on my quality life.
In the 2nd half of 2018, a confidant & catalyst twisted my arm to visit a holistic Ayurvedic centre as the future of our well-being hinges on respecting & being associated with our roots, I decided to hit the road to co-relate with my mechanism and create some internal & life style changes.
Our past contagion fear of not opting out easily from our comfort zone becomes evident from our daily routine i.e.….waking up the same side of the bed, food habits, wearing the same styled clothes etc…..sometimes our robotic behavior even delays our medical decisions.
Initially, I felt startled as the entire concept was new to me. After an initial analysis on my medical reports, symptoms & past treatments, a team of doctors unanimously concluded metabolic disturbances to be a major cause of concern which percolated in tissue de-generation activities, muscle weakness and body pain. They were convinced that with regular treatment and certain life style changes, my allopath medications can drop to the lowest point. The very moment, space and time took imagination to the days when my body will be free from the so called ‘’Allopathic medicinal torture’’.
They blew the bugle by implementing the pre-decided treatments in full swing. The holistic approach was implanted to remove toxins, strengthening the digestive system, minimizing inflammation, ceasing symptom aggravation, treating the root cause rather suppression of symptoms and diet management.
On one of mornings, I heard a tap outside my door and then it pitter pattered. It was drizzling calm; rain is nature’s greatest optical phenomenon with mother-nature doing what it does best. Simultaneously, the mantra chants were music to the ears and the surroundings was filled with fresh fragrance. Though my surroundings were aesthetic but I physically seemed too sensitive to accept any shift in weather conditions which resulted in severe weakness, mild fever & cold.
On the other hand my physiological aggregates had high degree of conflict due to my dad’s hospitalization in Bombay where the cardiologist predicted Angiography. Though it was a catch -22 situation but crisis is a tremendous opportunity to introspect and raise your own bar.
A jelly paste & nasal drop did work wonders to treat cold but couldn’t avoid popping pain killers due to severe head, legs and back ache. I was advised a fermented water treatment mixed with the power of herbs to treat usual body pain and a couple of concoctions supporting a new lease of life.
This ’omnipresent science’ crackles with the promise of utopia but with passing centuries it has undergone transformations. The treatment on a macro level had its successes & failures with instances when the medicines denied integrating with my system but I’m delighted that the overall experience removed, dust from many myths.
Faith and wellness goes hand in hand. It’s no rocket science that my body was healing from all the major injuries, aches and pains gathered over years and I’m able to break through habits that cost an arm and a leg to pick healthy ones.
Even though this treatment was alien to my anatomy during my discharge, there was a sense of satisfaction that I volunteered an environmental- friendly treatment being aware that the professional health prerequisites wouldn’t equate with any adverse side effects like my past experiences.
There was a drastic increase in all the symptoms but proper rest, instructed medicines and altered food regime felt a small step towards rubbing shoulders with my giant recovery. My daily well-being platter was a combination of Ayurvedic & Allopathic medicines under strict supervision by both the doctors. There was a 360 degree shift in my daily routine starting with concoctions by the crack of dawn synchronized with an acid- tasting menu.
Early did I know, life is what happens to us while we are busy making other plans, the balancing act was in favor till the onset of 2019 when uneasiness again creped in. There were instances when frequent medicine modifications were made till I decided to visit my Ayurveda doctor again in April’19 to know his views on the overall vulnerability.
Though during this visit, my treatment was pre-decided for a process called Panchakarma (a rejuvenating detox eradicating body toxin to restore constitutional balance improvising wellness) but I was again caught off guard. It was evident from my body stats as I lost unexpected weight, sugar & BP levels were abrupt etc… A note of hysteria crept into me while discussing about this mishap with my confident doctors who reasoned Lymes, limited food intake &inadequate digestive agni to be the cause of concern.
There are times when going by the book is not an option therefore minor changes were done during my release to meet the need of the hour.I am an utmost believer of the two options regarding commitment, you’re either in or out, there is surely no way in between and bailout from this current situation has always been my utmost priority. Therefore as good fences make good neighbors, I respect complete instructions from my doctors.
Though this stream of medicine has taken time to unfold its true colors but my faith keeps repeating itself about its long term benefits helping a cut down on my mainstream medicines. On one of the instances in June’19 I had this weird unbalanced feeling with a sense of panic in my body and a blank sensation in the head, before I could address, boom the very next moment without pre-indication; I hit the ground straight on my face due to head –swirl. Immediately, I was taken to my treating doctor in Jaipur.
A plethora of clinic-aid investigations were done which interpreted symptoms and indicated topsy-turvy Blood Pressure levels and increase in Lymes disease. My health keeps throwing unprecedented signals of weakness and pain the uncertainty of it is such that a dining table breakfast may in no time turn to a bed-ridden lunch.
For a month I am put on Steroids till some more results unveil. The chronicle continues…………
Cutting to the chase, let’s not question the intelligence our body. Any incremental risk appetite with supervised trials & errors can be of fringe benefit. It’s individualistic how one relates to his/her body and observes what’s acceptable. Remember, there is no universal law to healing. Deep buried knowledge secrets to being healthy wrapped in the form of natural medicines from our ancestors have undergone renaissance due factors like globalization, society acceptance & their importance to millennial.
As I keep my pen down & patiently wait for the Midas touch, my only request to readers would be to share any conducive food for thought, as bailout is not only an option. I wish to co-relate one of the golden verses from the Hindu holy book of Bhagvat Gita (Chapter 2, verse 36) to this real life situation when Lord Krishna tells Arjuna:-
Avachya vadansh cha bahun vadishyanti tavahitah,
Nindantastave samarthyam tato duhkhataram nu kim
Actual Meaning: – Your enemies will defame and humiliate you with appropriate words, disparaging your might. What could be more painful than that??
Therefore to regain my thrown of well-being it’s important to ignore the obstructions and illusions of my current journey and keep defeating the marching enemy during any attacks. After coming so far, I should proudly keep my face towards the sunshine to never see the shadow of illness.
You can catch me on rachitshah421@gmail.com
