Dearest friends,
Wishing you a happy solstice! Chandra and I went for a brief hike yesterday, found some lovely poppies along the way, and we wanted to share them with you as a solstice token! We have also a very brief update about Chandra's new music project, which you can read about in: https://swchps.art/lab/007/
With love and gratitude for your caring support!
Zoe & Chandra
Dear friends!
Wishing you a beautiful spring, full of new life!
Chandra and I are happy to share with you the latest on Chandra's path to healing! Please read Chandra's latest newsletter by visiting this link: https://swchps.art/lab/006/
With our warmest thoughts!
Zoe — and Chandra!
Dear friends!
Wishing you a superb September, full of light and colour!
We are happy to share with you the latest on Chandra's path to healing! To read Chandra's latest newsletter, please visit this link: Lyme & Beyond: Summer of ’22
With gratitude!
Zoe—and Chandra!
Dear friends!
Wishing you are having a wonderful spring! Chandra and I are!
And we are happy to share with you the latest on Chandra's path to healing! To read Chandra's news, please visit this link: Lyme & Beyond: Spring of ’22
With gratitude!
Zoe—and Chandra!
Happy New Year 2022, to all of you!
May the new year be for you a treasure-house of experiences of joy, inspired learning, and opportunities for gratitude.
After our medical trip to Washington, D.C., for Chandra to visit the Lyme-specialised clinic, we’ve returned to Mexico. Here, Chandra will continue with his treatment. We hope for his gradual recovery from Lyme neuroborreliosis, as we spend the winter in a location with milder climate and low incidence of Co-V.
Since our return to Mexico, Chandra has been working on putting together an update to share with you all about the medical trip and his current health news. Drumroll, please… and here it finally is! You can read it on Chandra’s website, at Lyme & Beyond: Spring of ’22. We hope that you will find it informative, and that it brings you along with us on our journey!
Lyme borreliosis is a silent epidemic affecting almost half a million people in the U.S. alone each year. The East Coast is particularly affected. One of the reasons we are sharing about Chandra’s journey through neuroborreliosis is to raise awareness about the seriousness of Lyme disease and the importance of prevention and appropriate early treatment. Feel free to share Chandra’s account.
As a reminder, we have curated a number of informative resources, which we update periodically, and we invite you to spend some time with them, especially if you live or know someone who lives in a tick-endemic area. You may already know about ticks — but there is always something more to learn to enhance our prevention strategies. You can find these resources on Lyme at Chandra’s website: https://swchps.art/lymeaid4chandra/lyme-resources.html.
Once again, we thank you for your generous support and for your ongoing interest in Chandra’s health.
Zoe — and Chandra!
Dear friends and well-wishers!
What a year 2021 has been! What a journey! I’m sure you all have harvested something unique and meaningful for the rest of your lives! Let’s celebrate it!
For me, the gift of 2021 has been the opportunity to continue to heal, with the support of you all, a truly worldwide community!
As you may know, I was recently able to complete a medical trip to Washington, D.C., to deepen my treatment protocol for Lyme borreliosis — a stealth disease that had been gradually breaking apart my body and mind. But, thanks to you all — who have supported this effort in many tangible and intangible ways — to Dr. J——’s invaluable guidance, to nurse C——’s kind care, and to the staff of the JSC clinic, I am now set on a new path towards recovery!
Many thanks to you for accompanying me on this journey!
It has taken me some time to put it together, but I’ll be sharing shortly a full account of the trip to D.C. and news of my health. Stay tuned!
For now, let me just share my gratitude with you all, and congratulate you on the holidays! May it be a time of reflection, joy, renewal and sharing!
With gratitude,
Chandrashekhar
Dear all, here is an update on Chandra’s path to healing.
We’re writing you from Mexico, on a rainy afternoon, as we sit surrounded by suitcases and boxes we’ve been preparing for departure. The rainy season in this area is abundant and long. It’s been raining almost every day for the last 5 months, which for the most part has been refreshing and delightful; however, lately, the mold in the environment has started to become an issue for Chandra. What would be manageable exposure to mold for a healthy person can be destabilising for a chronic Lyme patient; their immune system is debilitated, and anything can affect them more deeply and seriously. Over the last couple weeks, as we’ve been making the final arrangements for our trip to the Lyme specialised clinic in Washington, DC, Chandra has started to wrestle with the moldy season. That means: more days in bed than usual, a sore throat, and inflamed bronchia, as well as a greater affectation to sleep and other neurological related issues. Last week, Chandra was given a new medication to help with the respiratory issues — but unfortunately, as the medication helps in one way, it causes other problems, including worsening headaches, anxiety, and sleeplessness. It seems a delicate balance to find between all these things.
And yet, we are finding some balance. Despite it all, we’re almost ready to go, the clock is ticking, our bags are packed, travel documents ready, medical travel letters in hand, COVID precautions planned out — and, last but not least, the funds required for this first trip.
With the help of all of you who have donated to this Lyme treatment fund for Chandrashekhar, we now have the necessary funds to cover the medical expenses for this first visit to the Lyme specialised clinic, to tackle this little beast, B. burgdorferi — straightforward, once and for all. At the Lyme specialised clinic in Washington, DC, Chandra will undergo a thorough in-person evaluation; then, the clinic will prescribe the coming round of pulsed antibiotics (administered intermittently) and other anti-microbials, as well as fine-tuned support for the immune and neurological systems. The in-person visits to the clinic are central, so that evaluation can be thorough and the prescription precise. We expect that this will be the first of a series of in-person visits over the next couple years. Most of Chandra’s recovery should take place at home, in between appointments. We still don’t know if he will need IV antibiotics for some time and, in that case, whether he will need to make regular visits to the clinic for infusions, or to get a line or a port for at-home infusion; we will soon find out.
Many of you have suggested palliative therapies to help Chandra recover from chronic Lyme disease. We thank you all for your kind recommendations and offers. You’ve shared about numerous different and interesting approaches to handle the complex symptomatology caused by this tick-borne infection. We’ve now collated a list of all these approaches, and we plan to consult at the Lyme specialised clinic — which is open to alternative palliative therapies, and has explored many approaches with their thousands of patients — about what will be the best integral strategy for Chandra at this time, and include some alternative approaches in combination with the main protocol that the clinic will be prescribing.
We thank everyone who is supporting Chandra through this, with your thoughts, with your words of encouragement, with your blessings, and with your donations to our treatment fund. Every single act of kindness brings us closer to Chandra’s recovery.
Next update, we’ll be writing from Washington, after the first appointment at the clinic. We’ll let you know how it all looks then.
Until then, our gratitude and best wishes from,
Zoe and Chandra
Thank you all for joining my recovery effort! And, thank you to Zoe, for getting this fundraiser going!
A year into my path to healing, friends and relatives wonder how I’m doing. So, in this first update, I answer a few of those questions. Thank you all for accompanying me in this journey!
Q: How are you feeling today?
A: It’s not easy to describe my general state nowadays. My answer to “How are you feeling today?” is usually “Fine.” And this is in part true. Over the past year, I’ve gotten used to living with pain and a certain level of incapacity. I may be “fine” most days, and yet that means with a level of pain and lots of limitations. Then, a little extra effort or a mildly stressful event can put me back in a really tough place.
Q: What are your main symptoms now?
A: Enumerating individual issues may not really paint the full picture. Perhaps if you try to see it, not so much as adding, but multiplying issues, you may get a better sense of where I am. These days, my main challenges are: difficulty walking, a very light sleep—sometimes outright insomnia—fatigue and headaches, language fluency blocks, hypersensitivity to light and sound, body temperature de-regulation (I'm hot, then cold, then hot again), and difficulty regulating emotion (it feels as though emotions come so fast—and they are overwhelming—before I get a chance to put them in perspective). On the lesser issue side, there are things like: cracking joints, swollen lymph nodes, dry skin, sun sensitivity, mild neuropathies, specially of the soles of the feet.
Q: What’s your daily routine like?
A: Very disciplined! In order to walk the fine line of feeling just “fine,” I must stick to a full day schedule. In July 2021, after a year of not being able to, I began going out for mild walks again, with the help of Zoe—and of walking sticks! Three mornings a week we go out to the woods for a brief stroll—a great way to start the day! Other aspects of my routine include: mild exercise and physio-therapy, cooking my meals, meditation, a few art endeavours, such as photography, writing (this!), music, a little vocal practice, and working for as many hours as possible—usually 2–4 hours a day.
Q: What are you working on?
A: Over the past year, most of my time went into managing my illness and recovery; however, in June of 2021, I began working a few hours a day with Zoe, on getting a new start-up on its feet: it will be an online agency providing editorial services to self-publishing authors.
Q: It seems like the past year was a big challenge; how would you summarise it today?
A: A year ago I got close to a grim borderline. For the last year, I've been focused on coming back to a stable, “operational” state, with the help of antibiotics (100 mg of doxycycline every 12 hours), and by maintaining a super-healthy diet, supplements (probiotics, vitamins, natural anti-inflammatories and immune, neurological and sleep support), and a balanced schedule. Many of the acute symptoms that I had a year ago have greatly reduced, although I sometimes feel waves of issues coming back, from time to time.
Thankfully, my heart is mostly back to normal (the mild pericarditis gradually receded over a period of 4–6 months), the brain fog episodes are less and less common, the conjunctivitis is practically gone (however, I’ve recently been found to have a permanent, yet mild, darkening of the crystalline, possibly due to inflammation). On the good side of news: I recently noticed that I regained 3 of the 6 kilos (6.5 of the 13 pounds) that I had lost during the previous year!
Q: Your last year in numbers…
A: 2 MRIs, 8 specialty appointments, 11 hospital visits, 12 blood draws, 60 flasks of supplements, 700 antibiotic capsules... But, who’s counting...
Q: So, what are the next steps in your path to healing?
A: I am preparing for the next phase of my healing journey. As you might know by now, Lyme is not an easily manageable disease, and in Mexico there are limited options for treatment. There are many palliative therapies that can help reduce symptoms—but reaching remission is a more than just managing symptoms. After researching the matter for months, I decided that it’s best to get treated at the heart of the Lyme disease epidemic, where there’s more clinical experience and the latest research: that is, in the US East Coast.
In January 2021, I had a preliminary telemedicine appointment with a Lyme-specialised clinic in Washington, D.C. It was an exhaustive, 90-minute interview where, upon an in-depth review of my medical history, the clinic agreed to treat me. I have since been hoping to visit for an in-person appointment, to get started with the clinic’s treatment protocol.
My US visa was recently renewed, and now Zoe and I are making plans to travel to D.C. In November 2021, I’ll be having my first in-person appointment at the Lyme clinic in D.C., to review and deepen my treatment protocol! You may read more about my upcoming treatment protocol our newsletter: Lyme & Beyond: In Search of Specialised Treatment.
Thank you!
A big thank you to you all, for your interest in my recovery, for your blessings, support and encouragement!