TB TREATMENT RACKET?

By Rajan Narayan

ON Tuesday, October 31, 2023 I was told by a senior surgeon that I was deliberately harming myself. In fact, the surgeon has even put it on record in my case papers of Goa Medical College & Hospital. All this is because I have consistently refused to take TB medicine because they have terrible side-effects. First of all there is no clinical evidence that I have TB. All the tests came negative last year.
And I feel this is the second time around I am being blackmailed into joining what seems to be a TB extortion racket. Last year MRI done raised doubts about whether I had TB of the spine. I was referred to the head of the orthopaedic department by GMC dean, Dr Shivanand Bandekar, in the belief that an Ortho specialist is better at treating spinal problems. The Ortho specialist conducted over several X-rays and CT scans. One of the CT scans showed a lump deep inside my armpit on the lymph node. A biopsy was done but it was negative for TB.


I was told the goal standard for detection of TB is the sputum test, your saliva or sputum will reveal TB bacteria. This too proved to be negative. The National TB Control Authority which has a vested interest in treating TB patients saw me started on TB medicines despite the lack of any evidence of the more rare spinal TB which is not infectious.
So without any evidence of TB I was forced to take the medicines and I reacted with severe side-effects of nausea and vomiting. It was going to be like that I was told for as long as I was on TB medication for 9 months to 1 year. If any evidence had been produced that I had TB I would have had no choice but to take the TB medicine.
There was no evidence of any spurt. After two months in GMC I was discharged with a diagnosis of latent Koch’s disease (in honourable medical parlance). The word latent is important because it means that there is a possibility that TB is hiding in me somewhere waiting to come to the fore and manifest itself. Even in my discharge paper it has always been suspected TB, but not confirmed. I cannot say with any certainty that I have TB with some doctors saying I have it, while a few say no, it is not TB with certainty.
SO I was discharged with malingering problems on the left side of my body. My left leg was not cooperating with me. It was difficult to stand on feet or I could stand with difficulty with support. I employed a physiotherapist who worked on my left side. She restored the motion in my feet. She helped me to stand up on my feet. She helped me to walk step by step. Saidnya Salgaocar even got me climbing the stairs which I once used to do with alacrity.
I was able to make to the bathroom using a walker’s support. Unfortunately, I wasn’t using the walker properly and an early morning two to three weeks ago I tumbled over it like a Humpty Dumpty and to the floor. Since there was no excruciating pain there was no immediate rush to the hospital. My right shoulder was hurting and there was a bump on my right forehead which eased with a cold ice pack over a few days. Only my right shoulder was throbbing with residual pain. It was a mistake not to have taken this fall lightly. Just as my left side was improving my side felt like I was getting paralysed. I could not put any weight on my right left. I could not hold any food or drink in my right hand.
It was a moment of shock to me that I could not even sign a cheque as managing director of Goan Observer. Due to the fall I had injured my elbow somewhat. Convinced, it was an ortho problems I went to Dr Deep Bhandare to Manipal Hospital where as a Casualty-cum-OPD patient I was advised to do extensive MRI tests. The doctor passed the buck to his junior who referred me to a neurosurgeon. Several areas of my spine were put through MRI paid for before hand, I was advised a complicated surgery to straighten my crooked spine, it has become more crooked after my fall, an iron rod would be inserted to prop up my spine at one end and nailed. Something like that.
They also insisted spinal fluid at my neck would have to be taken out and tested for infection which could be suspected spinal Pott’s tuberculosis (not once confirmed in black and white). I could get admitted for surgery if I wished or leave the hospital. By now totally traumatised I refused and went home on a stretcher past mid-night. Actually, Dr Deep Bhandari has done me a favour, because had I agreed to everything and been admitted for surgery…I would have become more bankrupt than I already am. All I wanted was somebody to sort out my immediate problems without surgery and teach how to manage myself with the help of physiotherapy which has made rapid strides today in getting patients back on their feet (together with nutritional changes in the diet).

BACK TO SASUMAI’ A FEW days later it was returning to the GMC anew with the hope that my health issues would be sorted out. I continue to perceive the GMC where it all began for me as a patient in 1998 when I was severely beaten up as editor of theOHeraldo.’ Many Goans now my story now of continuous ill-health since then.
But to stay in the present at the GMC again there was a high drama with the ortho people insisting I had TB, and the neuro people not willing to accept it. The neurologist Dr Sanat Bhatkar very emphatically told me that there was no question of my having TB. What I had was a crushed spine (or cervical myeopathy). It was also severe spondylosis that I was still suffering from post the savage assault on me in 1989. It may be recalled that I was savagely beaten up with iron rods for charging the then speaker Dayanand Narvekar in the Goa government for molesting a member of his office staff.
At the GMC where I am still at the Trauma Ward it was agreed that I would undergo a spinal fluid aspiration test to verify if I had to confirm the hitherto bogey of suspected TB. So I have had the test tone and am awaiting the clinching results of what exactly my “creeping paralysis” is all about. Various doctors claim that the spinal fluid which I had accumulated in the neck had spread to other parts of the body. They could not draw the fluid from my neck as it was difficult to excess.
Finally, the courageous radiologist Dr Sanjay withdrew my spinal fluid sample from around my hip to where reportedly the disease had spread. This was done using ultrasound to identify the exact spot where the final fluid had spread. The aspiration was done very professionally and took barely 15 minutes.
Let me say I am now awaiting the results of the test to confirm what is dragging me down into a hell hole of pain. The GMC doesn’t any sophisticated tests but outsources them to an outside laboratory. Even while I am awaiting the test a senior surgeon doing his rounds assures me that I have spinal TB and it is spreading. That I am deliberately causing myself harm.

GOD’S VERDICT
MOST patients accept a senior doctor’s verdict as God’s verdict and do whatever they are told to do. But I have suffered grievously for 5 years because of what is called a differential diagnosis and put on steroids in 1989. After that I just cannot or refuse the advice of doctors however well reputed, unless there is clear-cut evidence of what is the cause of all my pain from head to toe. I told this senior doctor or head of department that I would not take TB medicine till it’s proven that I do have spinal TB.
This is because a very highly reputed neuro-physician and a neurosurgeon whom I know are both convinced that it is not TB for I do not suffer from the classic symptoms of the disease which takes the highest toll of life in this country. The fact that I reacted positively to physiotherapy on my left hand and leg side proves that it could be other causes for my present plight. The problem is that it is easy to claim that a patient has TB and put him on the government-sponsored horrible TB drugs package.
We are convinced that the National TB Control Authority is some kind of a racket. Many crore rupees by way of funds are collected as this is a foreign-aided national TB program. It sounds to be like the polio vaccine treatment program which is funded by the American entrepreneur Bill Gates. The historical belief is that only the poorest of the poor get TB. The main cause of TB is lack of nutrition.
Historically, it is mill workers, construction labour and the poor in rural parts of the country where there are no health services who get TB. This is not always true of course for the rich too can be guilty of bad lifestyles in closeted homes. The National TB Eradication Program started because it is a very heavily funded program and the sufferers are subsidised to take the medication course.
Otherwise, TB treatment is expensive. Unlike AIDS or even Covid, TB can completely bar you from leading a normal life and a patient has to take the medicines for a minimum 5 months to 9 months.
In my case because of the condition of my spine, it is said it could take one year. Providing there is conclusive evidence that TB is what I am suffering from and not something else with similar symptoms. At age 77 years I refuse to be tortured for a year on TB medications. Maybe I do not have a choice. But I want definite proof of TB first. The afore-mentioned senior surgeon told me that even if the latest test proved negative, I would have to start TB treatment. This is absurd.
It is like asking a patient to take treatment for dengue or malaria when all the tests have proved negative. A TB officer came to visit the GMC and he had the audacity to tell me that in 90% of cases they started suspected TB patients on medication – ignoring or awaiting conclusive evidence. Again, I am inclined to think the TB national program is a money-making program where doctors identify a patient as a TB patient wherever possible and the patient is given a regular amount of money every month. This is to ensure that the patient takes the TB medicine.
The TB program recognizes that poor patients cannot afford the cost of treating TB with the expensive drugs. So patients get around Rs500 per week to take the TB drugs. Many patients take the money but chuck the medicines in many cases, perhaps because they know they don’t have TB. But everyone engaged in the National TB Program is happy with the extra income they make. Huge sums are spend on supplying TB medicines to genuine TB patients and suspected TB patients.
The higher-ups in the program know that the poor patients will not take the medicines. They have combined 5 formulations into one mega tablet like a pink bullet. Last year when I was forced to take the medicine the ward sister would crust the tablet and dissolve it in water before telling me to drink up.
The admission that if patients are being treated for TB without conclusive proof but only on doctor’s suspected opinion – is enough proof that the disease is being managed based on revenue rather than anything else. Like the polio program. Whereas the polio doses are administered at regular intervals, in the case of TB the medicines are given every week for 9 months. Every dose probably costs around a Rs1,000. You may imagine how much money is spent on supplying TB drugs to patients who do not have TB for 9 months. Nine months during which time you can have a baby instead of wasting money on TB program.
I am not an idiot. I am a rational person. I have nothing against doctors. Many doctors have saved my life. I respect the opinion of doctors. All I want is conclusive evidence that I am suffering from spinal TB and not something else with equivalent symptoms. If there is a patch on my hand or my face it does not mean I am suffering from lymphedema.
In fact, some doctors in Goa including experts, create fear psychosis. They have cancer of the breast. Very few males have breast cancer. Amongst them is Sahitya Academy winning Konkani mogi writer Damodar Mauzo. In my case to it was a false alarm at one time. I went to the Tata Cancer Hospital in Mumbai where a famous doctor checked and assure me that I certainly do not have male breast cancer. Your body belongs to you, don’t hand it over blindly to doctors.
MEA CULPA: On Wednesday, November 1 I got conclusive, not suspected evidence (though Nucleic Acid Amplification Test-NAAT) that to add to my other bodily woes, I have spinal tuberculosis of the non-infectious kind. Perhaps the ninth of my nine cat’s lives is drawing to a close and all I wish at life’s end is someone to hold my hand.

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