World has responded through all my surgeries and treatment when I needed help. Still calling for help suffering in silence I am requesting support

I have a rare disease called  vHL or Von-Hippel Lindau--this is a cancer-suppressing gene and those people who have VHL disease have a mutation, turning you into a tumor-producing factory.

In my case, blood-filled tumors form in up to 10 organs of the body.

The only treatment is the removal of tumors, irradiation, and monitoring but unfortunately, multiple tumors formed in the liver which compressed and displaced vital vessels and I had a liver transplant leading to turning off of the immune system. Curing vHL brings us closer to curing many forms of cancer. 

All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.

The will to live is an unstoppable thing. Most people live only when they are about to die. 

VHL is a tumor suppressor protein that is localized in the nucleus or cytoplasm, the extent to which being dependent on cell density.

The hypoxia-inducible transcription factors have also been shown to play a crucial role in tumour promotion in other cancers including breast, brain, colon, gastric, lung, skin, ovarian, prostate, renal, pancreatic. Increased levels of growth factors result in angiogenesis.

VHL is the key to know how tumours grow and how potential therapies can inhibit angiogenesis.

It may sound complicated, but having a VHL diagnosis shouldn’t consume a patient’s life. In fact, monitoring through routine screenings is one of the most important components of care for patients with the inherited condition, which puts them at an increased risk for developing tumors.

Between 1902 and 2013, approximately 132 cases have been recorded. 

Detecting and treating the condition of leptomeningeal hemangioblastoma without delay seems to help survival, though the number of patients analysed is small. The most common cause of death is respiratory failure due to pontomedullary or cervical cord compression.

After 2017 I also have a chronic ischemic brain. Cerebral ischemia or brain ischemia, and when there isn’t enough blood flow to the brain leading to limited oxygen supply it may lead to the death of brain tissue, or ischemic stroke.

The electrons can be made to strike a tungsten target within the head of the accelerator to create a beam of photons (or “X-rays”). These X-ray beams are then directed at the site of cancer. Photons have no charge or mass and can be regarded as small packets of energy. Photons deposit their energy along the entire path that they travel through the body. Therefore, a beam of X-rays irradiates not only the area of the tumour but also the healthy tissue that the beam encounters on its way towards the tumour and beyond the tumour. X-rays used for treating cancer usually do not stop within the body. X-rays travel right through you. On the other hand, proton beam therapy is delivered by larger, much more expensive accelerators called cyclotrons and synchrotrons.

A proton beam directed at a tumour travels in a straight trajectory towards its target, gives off most of its energy at a defined depth called the Bragg peak, and then stops. While X-rays often deposit more energy within the healthy tissues of the body than within the tumour.

The mutation of the gene is confirmed in AIIMS research.

There were multiple cysts in the pancreas already. They blocked the exocrine functions ( enzymes) and for a couple of months, I had to run to the bathroom after every meal. After Creon SD microgranules were prescribed my diarrhea feels better but you can confirm it is around Rs 3000 and lasts for only 2 days.

The will to live is an unstoppable thing. Most people live only when they are about to die. 

After 15 surgeries including kidney cancer apart from the above-mentioned Liver transplant I want to survive my life threatening condition with an unquenchable thirst for life.

I, who swam the seas with vigor, without any complaint, felt the warmth of sunshine in the emptiness of my life, from the quest for knowledge I got to know more about my diseases.

My request is to help me according to your preferences and ability.

I was diagnosed with leptomeningeal hemangioblastomas 6 months after the cyberknife in 2013.

Currently I am suffering from a serious multiple brain tumors which has been reported globally from 1902-2013 only 132 cases and I am the first one in India. The small tumors floating around in the fluid used for cushioning the brain and spine tend to compress all the nerves that come their way. Hence the first nerve to be compressed was the optico-hypothalamic nerve which made me blind with right eye even after radiation therapy. 

The next time it became bilateral trigeminal nerve. I got a cyberknife on 17/3/2020 but the left nerve is not done, hence it feels like someone is holding a bare electric cable against my cheeks or any part of the face. 

After this cyberknife I got a swallowing problem. The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII). 

It should be emphasized that the structures involved in the swallowing process are pairs, both anatomically and/or functionally, due to the dual-side innervation. 

Anatomically unique, the tongue, palate, pharynx, and larynx are functional pairs, each side having independent innervation.

Currently I can't stand for long, gait problems and electricity flows through the right leg. Also my bladder and bowel control is lost. All these can be to some extent treated with proton therapy and chemotherapy.

 

Because from 18/3/2020 we are under voluntary isolation and just 

Because of an unfortunate event I developed Covid 19 

Blood tests at times are a good marker of inflammation and they can also give you and your doctor an idea of what is going on in your body, in particular, the C-reactive protein and the D dimer. Both of them are said to be a good testing ground for understanding what is happening in your body.

D dimer and CRP but no antibody. Antigen couldn't be tested because it might hurt my throat. Bilateral trigeminal nerve, vagus, Hypoglossal, Glossopharyngeal, facial, auditory are all compressed by tumours.

The RT-PCR test was not done in my case because I have Trouble swallowing food and medicines, Here I'd like to state The cranial nerves associated with the swallowing process are the trigeminal (V), facial (VII), glossopharyngeal (IX), vagus (X), accessory (XI) - usually not considered - and hypoglossal (XII). 

Both Naso and Oropharyngeal samples are collected. If have problem in nasopharyngeal then it can be done in Oropharyngeal sample only 

Hence it might be extremely hurtful as I get pain in the pharynx and larynx and often my tongue gets paralyzed. Voice becomes hoarse after speaking a bit. 

My CRP was high and D Dimer critical

Meanwhile, the oxygen level suddenly dropped and NGO Jeevan Stambh loaned me an oxygen concentrator

I have experienced horrors that would give most people nightmares for life but the thing is if you face serious issues from a younger age you don't cringe inside or give up on life. The older you get without ever having a real problem you don't know how to handle it. Starting early gives you a perspective if you don't die first. 

After a month of the first symptoms, I formed antibodies under immunocompromised conditions. 

Dr Harsh Mahajan worried about CRP getting raised.

Higher than 16.4 in my previous report

Now D Dimer is no longer critical.

Retracted novel CoV similar to the genetic sequences of human immunodeficiency virus (HIV) and Ebola.

A stunning cocktail like Coca cola

Hence its difficult to find if I bled from the bowels were due to Covid or pancreas related diarrhea.

Treating doctor Neeraj Saraf said to Repeat CRP and D Dimer after 10 days.

I was diagnosed with tuberculosis which was later found to be Multi-drug-resistant Tuberculosis. After a couple of years of disappointing treatment at Medanta Dr Randeep Guleria treated me

After 15 surgeries including kidney cancer apart from the above-mentioned Liver transplant I want to survive my life threatening condition.

 I have no income. I write for Times of India digital without honorarium honorarium and typing with the index finger of the right hand because after the had got palsy and was treated with high-dose steroids the hand doesn't work like before and the left had after recovering from paralysis didn't get back the sense of touch and both halves of brain lost coordination and refuse to work together. and my mother who is a pensioner draws barely enough pension to feed and clothe us, leave alone pay for my medical expenses. Friends donate who think I should live more and write more.

The first nerve to be compressed by my leptomeningeal HB was the optico-hypothalamic nerve which made me blind with my right eye even after radiation therapy. 

My request is to help me according to your preferences and ability.

https://www.ketto.org/fundraiser/help-payel-bhattacharya-survive-vhl-genetic-multi-system-disorder

To the cosmos shall mingle at last.

 

Time flies and memories fade.

People change and new friendships are made.

Yet certain sins are simply unforgivable

Unforgivable sin, the unforgivable sin, unpardonable

Mum is incredible  Nature's lyrical

Magical, mystical, miracle,

Warm as a summer day

Our bond is strong and lovin'

Feeling my pain makes her weepin'

What wond’rous Life I lead!

Ripe Apples drop about my head;

Apples drop from the tree

Life's hopeful with Mum and me

The man jumps up from a bathtub; the mind-blowing equation.

Can you quantify his elation?

Because of relentless mutation

Which enhanced evolution and diversification

My mutation gave me a very rare affliction 

While nature entrusted her aid to bless

 I got just and fair success.

With the feel of old mortal stress;

 Never for anger, lust, or gain,

 Would my life with falsehood stain.

  There's weakness and strength in every human.

I Chose to trudge the hills less trodden by;

 With head held high; 

Being cognizant; 

The turf is uncertain;

 So is the terrain;

When going through life's valleys

And thinking there's no way out,

There's hope, without a doubt.

Still hanging on 

When I want to sigh; 

I get up with head held high; 

Choosing a path never trodden by, 

To leave a trail and make a difference

  

I must think.

To be selfless,

   It's not about me.

To be brave,

   I must hold my head high.

To be fearless,

   I must fight 

By the grace of Heaven to raise my life

 In mortal strife;

Skilled in the grounds of war and peace

Winning a war at the nick of time stress decrease

Struggles that plagued me each day,

At the end of it all,

Would just fade away.

Time's winged chariot hurrying near:

But at my back, I always hear

And when his life on earth is past,

 To the cosmos shall mingle at last.

Viruses, Pandemic and Vaccines

 Viruses live in a twilight zone, somewhere between life

 And its ingredients.

With a potential

Their growth is exponential

Are viruses alive? 

Are viruses the fourth domain of life?

Where do viruses fit on this “tree” of life?

Residing in separate domain of life

However, viruses can infect all other forms of life

Virus genes are everywhere, merged into the genomes of all organisms

With with correct mechanisms

Viruses cannot generate their own energy

They can put host in jeopardy 

 They cannot grow or propagate

They evolve and mutate

Depending on cells they have the key to infect

As they detect

To survive use their mechanism

Have power to bring cataclysm

Teetering on the boundaries of what is considered life

Containing  the key elements that make up all living organisms: the nucleic acids, DNA or RNA

What defines life?

Viruses face constant pressure from immune systems, 

With multiple tactics resist them

 To block their entrance

The trusted troops disarm and kill them when they manage to get In and stop them to enhance

Transmission from host to host is such a basic need

Deepest deathless need

 For infectious agents that some take it a step further.

To increase their number

Contemplating the origins of life fascinate

Studies to understand how life originated

 Understanding the evolutionary history of viruses Confusing fateViruses may shed light

 Wise men at their end know studying them  is right

Viruslike elements spurred several of the most important stages in the emergence of life:

The evolution of DNA, the formation of the first cells, 

and life's split into three domains

No clear explanation for the origin of viruses exist

 Viruses may have arisen from mobile genetic elements

 Gaining the ability to move between cells. 

Hence adapted a parasitic replication strategy. 

 Twisted into a tragedy

Viruses existed before, and led to the evolution of, cellular life. 

Continuing studies may provide clearer answers. 

Or future studies may reveal that the answer 

Is even murkier than it now appears.

Wuhan Institute of Virology was upgraded to the National Highest Biosafety Laboratory 

Lab was involved in the research of coronaviruses 

  The causative agents of the severe acute respiratory syndrome: SARS outbreak 

So be wise of the on your take

South China University pointed out that the intermediate host 

Enhancing at most

 The horseshoe bat was not available in the wet market 

And did not live in the Wuhan territory

The only place the bats existed in the locality was the research facility

Which is just about 100 yards from the Wuhan wet market. 

The horseshoe bats are found only in Yunnan district. 

However, they are neither consumed as food in the city, nor are they ever traded in the market. 

Wuhan Center for Disease Control and Prevention located 280 m from the market, 

The extraction and sequencing of the DNA and RNA from caged animals could have been a potential source of the pathogen. 

The world was to see death of many people due to the antigen

 

Points out the genetic diversity of the viruses in bats, 

Connecting the dots you can get the fact

Highlighting the possibility 

Of infecting the humans.

As the pools of CoVs in bats were limited, 

Likelihood of a future emergence of this viral outbreak was never anticipated

Chimeric virus containing the SHC014 spike in a SARS-CoV backbone causes robust infections in both human airway cultures and mice

Think twice!

A warning was issued that the starting materials required 

SARS-like emergent strains were already going around 

In animal reservoirs.

 A research team in China that spent 5 years in the Shitou caves of Yunnan 

Sampling from the bats issued a similar warning and raised alerts for a potential disease outbreak 

Causing lots of heartache 

By December 2019, the first cluster of cases of infection with a novel CoV was reported in China.

The origins of the epidemic were investigated. 

The WIV published reports stating that s new strain of CoV had bats as the “probable” source estimated

All the studies of Shi Zheng Li, the lead WIV virologist 

On bat-related CoVs were centered in Yunnan.

 However, the outbreak occurred in Wuhan, 

Which is almost 900 km from Yunnan

 Samples of  infected patients  compared with those from the bats, 

 None of them matched

If not from bats, where did this novel strain of CoV come from?

 The Government of China conducted an investigation 

Reported a wildlife market, 10 miles away from the virology institution

 as the epicenter. 

The theory of lab origin gains credibility

From unrelated, but nevertheless solid and tangible facts seemingly

South China University pointed out

 Intermediate host, the horseshoe bat

 Not available in the wet market 

 Not living in the Wuhan district.

The only place the bats existed in the locality 

Existing in the research facility, 

 Just about 100 yards from the Wuhan wet market.

 In the Wuhan Center for Disease Control and Prevention located 280 m from the market

 The extraction and sequencing of the DNA and RNA

 From caged animals could have been a potential source 

Human mind is very coarse

This center is also adjacent to the Union Hospital, where the first groups of doctors were infected during this epidemic. 

Retracted novel CoV similar to the genetic sequences of human immunodeficiency virus (HIV) and Ebola.

A stunning cocktail like Coca cola

Unlikely for a virus to have acquired such unique insertion

Naturally in a short duration.

 These artificially engineered modification 

Were thought to increase the range of host cells 

So it can infect and put the world in frustration

Now the virus in the stormy world dwells

Variation is intimately linked to their disease-causing potential. 

We've got everything essential.

Paramount to the understanding of RNA viruses is the concept of quasispecies

This is nothing sham nothing quasi

Viral quasispecies is a population structure of viruses

 With a large number of variant genomes. 

Can sink humanity in their venom 

Quasispecies result from high mutation probability 

as mutants arise continually 

 Changing in relative frequency as viral replication and selection production.

First developed to describe the early replicons

Replicating from single origin of replication 

Components of a primitive RNA world

 devoid of DNA or proteins

By all means 

Viral RNA load correlates with high levels of viral replication

 Patients who developed late respiratory breakdown despite disappearance of nasopharyngeal viral RNA

False representation leads to damnation

Whether viral RNA load in lung tissue, 

Or a surrogate sample such as tracheal aspirate, mirrors the decline in nasopharyngeal shedding.

 Nevertheless, severe manifestations might be immunologically negotiated 

Has obvious implications for the potential to use immune-modulatory therapies for this subset of patients. 

This finding is consistent with recent reports 

Of course, of course

 Corticosteroids were beneficial for acute respiratory distress syndrome, and possibly those with COVID-19. 

Why did I get Covid 19 despite voluntary isolation?

Ignorance prevails

“Ignoring isn't ignorance,

 Ignorance requires guts, boldness

Experts have also strongly suggested

 Solely relying on testing as a safeguard 

You can not expect to be a lifeguard

 People making ‘lax’ and taking other safety measures

For thoughtless pleasures, taking delight in certain measures

Taking  mask-wearing and social distancing lightly

 Pass on infections to others harshly

 Tests are a preventive measure and only effective

 As long as you put in place other security measures

Blood tests at times are a good marker of inflammation

If out of fear and frustration

With knowledge of immunosuppression

Asks me to fall apart I lost heart

In desperate aloneness

The mask lifted

Out came hollowness

She's just a social climber

 Spine-chiller

Worrying about death of spouse

Woman working in slaughterhouse

Who came to care for my mother

Who is my caregiver

Told me die now,

From close proximity

"Holy cow!"

I could see the conspiracy,

The human tyranny,

My contemplations are of Time

 Pieces of coin can change 

Make violent and strange

 Pandemics has been the mainstay of global public health for the last one hundred years. 

We must do better than just respond to pandemics by scrambling for vaccines, developing drugs, and modifying behaviors. 

This traditional approach has proved a failure for human immunodeficiency virus (HIV), which nearly thirty years after its discovery continues to spread, infecting  millions of people.

We still understand surprisingly little about pandemics and the microbes that cause them.

 We know even less about how to predict or prevent pandemics 

This simply reflects either ignorance about pandemics 

And mindset doesn't discern epidemics 

Before they spread from small towns to cities and the rest of the world. 

Death breaks loose

Consuming  half a world.

Pandemics will increase in frequency in the coming years as the connections between human populations and the animals in our world continue to grow.

Death, despair, entanglements of mankind quickly grow,

Deadliness of H5N1 and the potential to spread like H1N1, a resurge

The deadliness new retrovirus like HIV, 

Most frighteningly, a completely novel microbe that blindsides us, 

Microbial threats will grow in the coming years

 In their ability to plague us,

 kill people, 

Destroy regional economies

 Threaten humanity

 In  ways more severe than the worst imaginable volcanoes, hurricanes, or earthquakes.

What is a pandemic?

 Defining them creates some trouble.

 The word itself comes from the Greek pan, meaning “all,” and demos, meaning “people.”

 Yet, in reality, it is almost impossible 

Imagining an infectious agent that infects the entire human population.

In humans or any hosts, different individuals will have different genetic susceptibility,

  A few individuals will likely be incapable of sustaining an infection because of some kind of genetic immunity.

 Also, the simple logistics of spreading to every single individual in any population makes such a feat nearly impossible.

In attempt  to reduce the pathogenicity of other human and animal viruses 

 Inoculating them into foreign species. 

Although we now look  back with some disdain

 Crudeness of early immunization experiments 

The  1938 injections of poliovirus, grown in  mouse brains, Into humans, most people, including scientists, are  unaware that we still use primary monkey kidney cells to produce  live poliovirus vaccines.

 Likewise, dog and duck kidney cells  were used to make licensed rubella vaccines. 

Experimental  vaccines, grown in animal tissues and intended for human use,  were commonly tested in African monkeys, 

 Many of these monkeys were released back into the wild.

It's shuddering, too much of a funk to fight

 Undoubtedly, many cross-species transfer of viruses  have occurred in the process.

What makes vaccines so troublesome is that their production and administration 

Allows viral contamination

 To breach the two  natural barriers 

 Often restrict cross-species infections:  

First is the skin.

Second is the unique and natural viral surface Characteristics that  reduce the chance that viruses might jump species

 The mixing of  vaccine viruses with others found in the cells and tissues used to  develop the vaccine can potentially lead to the development of  new recombinant mutants

 That are more adaptive and have wider  host range than either of the original viruses

A new infective microorganism which could differ in certain  important aspects from any known disease-causing organisms.

  Most important of these is that it might be unruly to the immunological and therapeutic processes 

Upon which we depend  to maintain our relative freedom from infectious disease.    

Many believe  such research should not be undertaken lest it lead to yet another  method of massive killing of large populations.

In a word, the intentional release of an infectious particle, be it a  virus or bacterium, from the confines of the laboratory or of  medical practice must be condemned as an irresponsible threat  against the whole human community.

 Books and websites consulted

• EMERGING VIRUSES: AIDS &  EBOLA  Nature, Accident or Intentional?    Tetrahedron, Inc. 1996.    Leonard G. Horowitz, D.M.D., M.A., M.P.H.  Foreward by W. John Martin, M.D., Ph.D. 

• THE GREAT INFLUENZA

The Epic Story of the Deadliest Plague in History

JOHN M. BARRY

Viking

• The Viral Storm Dawn of a new pandemic age by Nathan Wolfe

• https://www.crstonline.com/article.asp?issn=2590-3233;year=2020;volume=3;issue=2;spage=284;epage=286;aulast=Chaturvedi

• https://www.bbc.com/news/uk-48540653