Got Lyme (Disease)? And living in India? Clueless about what you should do next? Read some my first-hand experiences of what you need to do in this battle against lyme.
How I got infected with Lyme Disease
Remember the last time you heard about a traveller visiting a ‘first-world’ country and coming back stricken with disease? Nor do I.
Well, I visited New York in the summer of 2014, went for a hike in some nearby hills, and came back with a strange infectious disease that no doctor believed could be true. True story.
Deer tick, the main carrier of lyme disease
Hike happened, and due to circumstances, I had to catch my flight back to India immediately. I had a quick shower, but didn’t have the time to shampoo my hair. Paid a taxi driver 10 dollars to go 200 meters to catch my bus to DC that was 10 seconds away from departing without me and then boarded a long, long flight back to India.
June 1: Some 40 hours later, I shed all my clothes and happily got into the shower. Much to my surprise, I found a strange multi-limbed hitch-hiker near my belly-button — a tick. Not a sullen, bloated fellow (like dog ticks), but a happy, fit looking guy who still seemed alive.
Near him were a couple of tiny, angry bites, perhaps half the size of a rupee coin. Slightly red, slightly swollen, but nothing to be alarmed about.
And so I proceeded to do what any sane individual would do: screamed (ahhhhh) at the top of my lungs and took him to nearest drain and flushed him into our cavernous sewage system.
How I Got Diagnosed
Geographical distribution of lyme disease. Doesn’t occur naturally in India, making it very hard to treat. But with global travel, do our doctors need to be trained further?
What next? I promptly forgot everything about the tick and the bite (seemed to have receded aside from a slight mark).
Until around 10 days later. I was taking my grandmother for a movie to a nearby mall. She has difficulty walking and often grasps my arm for support. This time, however, when she grasped my arm I felt an excruciating pain in my elbow. Not a sharp pain, but a burning sensation. Something, I realised, wasn’t normal.
There’s something strange, in the neighbourhood, so who’d you call: Dr Google! Yes, I know Google is a like a safe-haven for hypochondriacs. If you have a blister and you Google it, there are chances you will believe you are dying of skin cancer. But sometimes, SOMETIMES, Dr Google is right.
This is one such case.
I explained my symptoms to Dr Google (tick bite + elbow joint pain) and Dr Google informed me I most likely have lyme disease. This was ten days after the bite, and so told my dad I need to get it shown to a doctor, and my father (who loves visiting doctors) promptly took me to the family physician, Dr Y.
My Lyme Symptoms
I never had the red bulls-eye mark that everyone with lyme talks about. I never had flu symptoms. My early days with lyme were restricted to strange joint pain.
I told Dr Y He examined the bite, my eyes, etc etc. I think he doubted I even saw the tick, however, I told him I did, and it was alive.
His response after the examination was that you don’t have the bull’s-eye mark, so it doesn’t seem you have anything to be worreid about. Don’t be a hypochondriac and enjoy life. Take it easy, don’t be stressed, etc, etc. However, if you want to be reassured, you can get the lyme test done at this diagnostic centre. He wrote down the name of the test and told my dad I was fine.
Getting the Lyme Disease IgG and IgM Tests done
The typical bull’s eye rash, which I didn’t get.
After being told I was a hypochondriac, I told my dad let’s just go home. However, my dad, with his undying faith in medicine, said no, we are all the way here, the clinic is on the way, let’s just get the test done. No harm done.
We went to Lifeline Laboratory and it took them a while to figure out what the test is. It’s not commonly done at all. They called a supervisor who looked up the computer and figured out what the test was. He said it would take 3 weeks to get the report and would cost Rs 3500 (or so). A lot of money! Again I told my dad, let’s just go home. However, my dad insisted that we just do it and we did it.
Three Weeks Later
Dr Y got the report of the test before we did. He called up my parents urgently, sort of worried himself: the IgG/IgM report, much to his surprise, had come back positive for traces of the lyme antibodies.
(For those who don’t know much about lyme disease — science is not very advanced when it comes to lyme. There is no test to check whether you have lyme disease. Instead, there is a test to check whether or not you body has created antibodies to fight off lyme. This test is wrong almost 30% of the time as well. And once you have lyme, you always have lyme. It never does leave your body, even though it could be deactivated. And hence, once you have lyme, there is no conclusive test to say hey congrats, you are officially lyme-free.)
Anyway, Dr Y was quite sensible, started me off on a three-week course of antibiotics. And said that was that.
Couple of months later: More Lyme Disease Symptoms
I think my lyme symptoms kicked in only after starting the antibiotics course (herxing is what they call it). I had strange body pains, got tired really easily, listless, lost my appetite, stiff joints. I lost a whole bunch of weight (became underweight for the first time in my life!)
However, the most disturbing symptoms for me were the mental ones: I would get really anxious at times (this has never happened to me — I’m probably the most chilled out person on the planet), I would get really angry (bursts of anger, face flushed types — again never happened), I got a lot more motion sick, dizzy even, and so on.
Finding a Lyme Disease Qualified Doctor in India
July: My parents called Dr Y a few times after, narrating my symptoms (weight loss, anxiety). By this time Dr Y was convinced I was a hypochondriac (despite having the freaking disease!!) so he told my parents to tell me to relax, don’t be stressed.
And so I began a search for lyme qualified doctors in India. This, my friend, is an impossible search. For some reason, lyme disease is linked to dermatology in India (???!). Most of the doctors I found online were dermatologists first and also, by happenstance, treated lyme. This made no sense to me.
And so I began hunting on Practo. And to my luck I found a ‘tropical diseases specialist’ who also treated lyme. She was based in Bangalore, and luckily, in August I was heading to Bangalore!
Dr Swathi Rajagopal was very nice. She looked and my reports, my symptoms and said yes, it does look like you have lyme. You luckily didn’t get any co-infections. It also looks like Dr Y treated you properly with the dose of antibiotics. Weight loss is common in any tick-fever sort of disease. She said it would take me at least 6 months to recover. She also made me take a plethora of tests, which indicated that some of my vitamin levels were very low — which sometimes happens with these sort of disease. She started me off with some supplements.
Lyme Disease: One Year Later
I have been very fortunate when it comes to my experiences with lyme. The fact that my lyme disease was diagnosed when it was (I took the test some 2-3 weeks after the bite, which is the perfect time to take the test) and the fact that Dr Y treated me correctly when he did.
I have been mostly lyme free living a happy life (got married in between as well).
One year later, May 2015, I had my first strong recurrence of lyme symptoms. My husband had just viral fever — and passed on the flu to me (mildly). While my body fought the flu, I became tired and listless for around 7 consecutive days. No fever, but just body aches. Very stiff joints (especially in the morning) and an especially stiff neck (not the sprained kinds). I also felt incredibly sick (motion sickness) when travelling in cars. Anxiety was back as well, driving a short distance became very difficult. However, the symptoms went away as well. I think my body fought it off.
The worst thing about lyme are the psychological symptoms, when you, yourself, think you’re crazy. Are you imagining it? Or is it actually happening?
My lesson with lyme: trust yourself and your body. If you feel something is wrong, get it checked out. Don’t wonder if you’re crazy and imagining it. With lyme, an early diagnosis a million times better than a late diagnosis. Do it for yourself.
All images courtesy wikimedia.org.
Hi everyone, I’ve got bitten by tick in Gokarna, Karntaka, India on March 28 2018, after 5 days I had I saw lymph node enlarged, and few days after flew-like symphtomes (head ache, neck mussle pain etc). I took 5 days of Doxy, symphtomes gone and I had to go to nepal for new visa, but within few mounths symphtomes reapeared, including joint pains, inflamation of facial nervers, heart-related symphotemes etc.. Tests for lyme showing negative values, however I am still having all thoose symphtomes… Is there any specific Indian types of tick born diseases which have similar-to-Lyme symphtomes?
If anyone wants to connect I’m a Lyme patient from India and my whatsApp is :9542275066
I have studied the Lyme Disease quite well during my Ph.D in Germany.
If anyone needs any information, I may try to help as a Scientist.
Thanks
Prof. Sunit K. Singh
Hi Sunit,
Please send your email id. I have strange symptoms from past 9 years but my Western blot tests came out negative for Lyme. I still believe I could have the disease. I would like to connect with you regarding how should I go about getting tested for Lyme again. Surprising, if at all I have the disease, I too got it while I was in US.
Thanks,
Ruchika
Hi m Sunita ….can u tell me the signs and symptoms of lype disease ….my boy friend is going through all the symptoms like- rashes, headache,fever sweating,numbness in legs,joint pain ,paining limbs ,heel ankle ….now doc is asking for cBC test ….they doubt it’s cancer but I feel it’s Lyme disease..coz he eats like anything ,and itsankle and heel which pains….
Good to know that Lyme was easy on you, I have a horrible experience as doctors in Canada could not diagnose, after a battery of tests, what caused my husband high fever. It started with just flu like symptoms. Within a week of no diagnosis he slipped into coma as the brain and spine was heavily infected with sm unknown virus. Docs gave up, I had to get him medevaced to India. We repeated the tests and Lyme was found positive. He had no symptoms of Lyme at all. He got treated for Lyme in India but the nerve damage was done! It has been four years now. While he is out of coma, stable but completely dependant as the body below waist has lost sensory and motor functions. His IQ is gradually improving with mental exercises. Physiotherapy is on..and hopes are still strong!
Lyme changed our life. This is him… https://www.google.co.in/amp/s/m.timesofindia.com/city/delhi/Man-revived-from-deep-coma-after-2-months/amp_articleshow/32934424.cms
Oh my god, all our best wishes to him!
Hi weReview, I was completely nodding along with your experiences, (the lack of the bullseye rash, joint pain, neurological symptoms) . I hope you’re doing well now. I just wanted to recommend looking at cat’s claw and kalmegh powdered tea if you’re still having joint pain or problems with muscle soreness/stiffness.
Your id pls
It is a bacterial infection. It cannot be cured by Ayurvedic medicines.
It is a serious infection if left undiagnosed and even after treatment with antibiotics they say it causes neurological and cognitive issues in a portion of patients.
They say those who have persistent symptoms after treatment with antibiotics could be due to the findings that Lyme persistor bacteria evade the immune system and antibiotics also. A small fraction of the bacteria lives on in the body, evading, forming cysts etc. They lie dormant and multiply later and cause issues in patients.
Hi Matrix, I’m going to disagree with you there. The standard 3 week antibiotic treatment is only effective in the earliest stages. Stephen Buhner’s book Healing Lyme suggests herbal treatments used in Ayurvedic medicine. I personally have positive results with them after long term antibiotic treatment failed to completely cure me of the disease.
Your email id pls
Thats wild you caught Lymes while visiting the US. Lymes disease must be super rare in India. The ironic thing is that I’m pretty sure a lot of Indian cuisines high in Turmeric and other ayervedic’s could potentially cure it.
Please provide contact numbers.
Why nobody is not replying on this website and then what is the purpose this website was created for
If you have or feel you have Lyme, please also look into Fluoroquinolone Toxicity Syndrome.
I need help for my Indian boyfriend. I need find lyme disease specialist for him in India Mumbai! He has same symptoms like I had if this shit happened to me. But doctors did him antidepressants. Please ttext me someone on WhatsApp +420724570012
Ho,
I am suffering from Lyme disease so pls help me to get Lyme literate doctor who treat it effectively .
Pls reply me when will you get free time.
My email Id is
vicky_0801@yahoo.co.in
Thanks. Vicky
please give correct email id .i am lyme sufferer from india,
My dad is also suffering from lyme , i have too much information on that from USA to Europe to Australia if you need one just send me test email to saggarglobal@gmail.com , I am sure i will able to help
Hi Vicky , any luck you found Lyme doctors in India ?
if yes please let me know i have problems with lyme.
Hello, my name is Rit. And I am so happy for you you found something to kickstart the process through antibiotics. I live in U.S northwest. And I can’t believe not one doctor who is llmd or Lyme literate md here as they have only handful cases of Lyme recorded. Do you still see that doctor in Bangalore! Do you know if she has treated someone else with Lyme. My 11 year old child got a rash and that rash next day turned into what they called Bulls-eye! Bite then circular clear skin then circular redness right outside of clear skin! I am extremely worried coz of the look doc give now, and might give my child the look of your hypochondriac!
What do you think Dr in Bangalore’s next protocol be. If it returns. Will she have to change the antibiotic, Intravenous? Have you felt any nervous system related symptoms, numbness/tingling/creepy feeling not when you see something slimy or creepy but just when you were sleeping or daydreaming? Any forgetfulness. I mean not why did I come to Kitchen (which we all forget), but e.g what is Kitchen used for?
I thank you so much for this blog! My dad in India or sis-in-laws are unable to understand what I’m saying and they are pretty much thinking, poor mom is cooking up stories and is just being a normal and paranoid mom! But your blog gives me hope I could make them understand!
Did you check your thyroid levels?
Hello,
My mom was in US and left a month back and has similar symptoms. No physician is able to diagnose in Delhi. Can ypu provide me with the lab test details and email of your doctor. Would greatly appreciate that.
Shipra
Can u suggest appropriate lab test for the same. I have repeatedly low vit b12 levels even after a year of treatment. I do get tired easily and feel imbalance many times.
Your suggestion most welcome.
Regards
Nikhil
Hi nikhil,
Can u give your contact or can u message me in my whatsapp number 12017741947 . Am currently in us.
Jithu
I know someone with Lyme who has been suffering from 12-15 years. She had great difficulty getting diagnosed correctly, and this was in US! Good thing you got treatment in time.
Hi Nish, Yes, I was quite fortunate that Dr Y had just treated a patient with lyme disease a few months ago (who had more apparent symptoms than mine), so he knew what to do.
Hi Team Review,
How are you doing now? I think we should start a group with people from India who are exposed to tick borne infections. It will be a great support for us.
Hi need the doctor details of Dr y
yes, we need a support group in Bangalore
Hi Sandeep, any luck for you finding a Lyme literate doctor in India. If yes please pass on the information. I am suffering from it as well.
I see a lot of sufferers looking for a good doctor. .i am currently seeing one and she seems really educated about Lyme. Her name is Kalpana Gupta shekhawat in Gurgaon. Please get in touch with her. She is treating me with iv fluids and supplements to support my body and a strict diet(all this after a 7 day dose of antibiotics). Good luck and good health to all 🙂