Help Henry Heal from Lyme Disease!

Henry is a conservation trail worker, artist, poet and aspiring journalist. In the summer of 2015, Henry started feeling very ill and tested positive for Lyme disease, a tick-borne illness that has been dubbed a “silent epidemic” around the world but is highly concentrated in upstate New York. After 3 weeks of antibiotic treatment, they were still feeling very sick. Initial antibiotic treatment can eradicate the infection but sometimes symptoms worsen over time.

Henry’s symptoms progressed slowly each year, to the point where their chronic pain, fatigue and neuropathy has limited their ability to work and live a high quality life. They now walk with a cane at the age of 27. Henry has tried seeking medical attention for their continued symptoms over the years but doctors have been unhelpful and dismissive.

Because of Henry’s limited ability to work, it has been incredibly difficult to save up money at all, let alone set any aside for treatment. That is why Henry is asking for help here.

Henry is starting treatment for Lyme disease this winter 2024 at the Stram Center for Integrative Medicine in Delmar, NY. Costs are out-of-pocket since the mainstream medical system does not recognize Chronic Lyme disease. Henry’s treatment plan includes 3 months of HBOT (hyperbaric oxygen therapy), long-term antibiotic treatment, nutritional support, and prescription herbs, probiotics and supplements. Henry will also see a therapist and a chiropractor. Henry had an appointment with a provider at the Stram Center in the summer of 2022, and it was beyond anything they could have hoped for. The provider was incredibly kind and attentive, spending nearly two hours doing an in-person intake with Henry. The Stram Center’s blood work panel found the Lyme bacteria, Borrelia burgdorferi, to still be active in Henry’s body nearly 9 years after they first tested positive.

Thanks so much from Henry, their friends and family – we are all so excited for Henry to start treatment so they can get back to feeling physically & mentally energetic and healthy again and enjoy hiking, trail work, reading, biking, and being creative!

We will make updates throughout the healing process, and soon we will have a website up with links to further reading on Lyme disease and fundraising plans such as raffl3s and giv3aways!

You can also donate directly through Henry’s Cashapp and Venmo – please specify “healing” in the tagline:

Cashapp: $angelapparatus

Venmo: @angel-apparatus

Costs List: $24,840

-2 months 5 days/week hyperbaric oxygen therapy (H-BOT) - $4,800

-1 month 3 days/week H-BOT - $1,440

-visits to Stram Center providers including specialists & nutritionist - $6,000

-chiropractor 1x/week - $1,200

-blood work and antibiotic treatment - (some covered by insurance) $1,000 out of pocket

-seeing an outside therapist 1x/week - $2,400

-herb supplement regimen and medical grade probiotics - $2,000

-costs of living (food, gas, car insurance, phone plan) - $6,000

**A Note on Lyme Disease Treatment Cost**

Chronic Lyme disease treatment is not covered by health insurance. This is because the Infectious Disease Society of America (IDSA) does not officially recognize chronic/persistent Lyme as a diagnosis, despite a wealth of evidence to support such an assertion. Chronically infected Lyme patients are forced to pay out of pocket for the treatment they need. Our website will list educational resources for those interested in learning more about Lyme disease and treatment.

♡This Is Why Henry Is So Amazing! ♡

Henry is an amazing and kind-hearted person. Despite facing the adversities of living with a chronic illness, they still actively strive to be a creative, accomplishing force. After graduating from Reed College, they became a case manager, advocating for homeless and mentally ill residents of New York City. They are an avid writer and poet, and they constantly seek new ways to be creative. They are a talented musician, singer and songwriter. Despite living with intense daily physical pain, Henry is an avid traveler and hiker, and possesses an interest in and appreciation for nature. They worked for the Utah Conservation Corps, where they obtained their A Sawyer chainsaw certification, studied wilderness first-aid, and managed and protected wilderness spaces in Utah and Idaho. Henry has always been an outstanding friend who goes out of their way to take care of the people in their life, regardless of circumstance. Henry is passionate about learning. They take up various intellectual pursuits on days where their physical health is overbearing. Although Henry experiences neurological problems from their illness, they compel themselves to exercise their mind in an attempt to preserve cognitive function. They are constantly reading literature about the world around them and articulating their own ideas about what they read. Henry hopes to pursue journalism once they get better. Journalism is a profession that plays to their strengths as a researcher and writer. Henry has always advocated for people, despite their own physical distress, so becoming a journalist would allow them to fight for equity and justice on a broader scale. Henry is an important part of their friends’ and family’s lives, and they are loved and cherished dearly by many people. Your help and support is deeply appreciated here–we all want to see our friend feel better!

More On Henry’s Story

In the summer of 2015, Henry began to feel very ill. They noticed several symptoms at first – extreme fatigue (sleeping a LOT but never feeling rested), brain fog (difficulty thinking, difficulty concentrating, & short-term memory loss/forgetfulness), inexplicable flu-like symptoms (extreme muscle soreness that couldn’t be explained by intense exercise, oscillating between feeling very hot & very cold, general malaise/a feeling of whole-body inflammation & “throbbing”), digestive issues (after a normal meal, falling asleep from exhaustion, feeling very cold, feeling like their stomach was “throbbing” & falling asleep from exhaustion – as though it was taking all of the body’s energy to digest food.)

Henry went for a check-up, explained all of these symptoms, and was tested for Lyme disease with a Western Blot. The results came back positive, and Henry was prescribed 21 days of doxycycline. During the 21 day antibiotic protocol, Henry experienced “herxing” – this term refers to the Jarisch-Herxheimer reaction, a “flare-up” of symptoms caused by the die-off of Lyme spirochetes – the bacteria release toxins & other chemical compounds as they die off, causing fever, chills, & heightened inflammation as they enter the bloodstream. Henry would experience these reactions regularly during the 3 weeks of treatment, which indicated that harmful Lyme bacteria were actually at the root of their ailment. Herxing is a sign that antibiotics are working, i.e. killing spirochetes, but Henry kept having these reactions right up until they completed their antibiotic regimen, and saw no significant improvement in symptoms overall. Later, as Henry began to research Lyme disease on their own, they discovered that for a “dispersed” Lyme infection (an infection that has spread throughout the body) at least one month of doxycycline is recommended, as that is the minimum amount of time shown to rid the body of the infection.

Over the course of the next several months, Henry sought the advice of other doctors – an infectious disease specialist in Portland, OR, a highly regarded internist in New York City – here are some (paraphrased) things they were told by providers:

-It’s probably just residual symptoms; they will go away on their own and you will stop feeling sick after a few months.

-There’s nothing wrong with you, your lab work is normal, you have anxiety.

Henry was at a loss – they figured if doctors didn’t think anything serious was going on, they should just try to keep up their normal routines, and eventually the disease would vanish. Spoiler alert: the disease did not go away.

In fact, with each passing year, their symptoms worsened & new ones arose. Now, Henry was not only experiencing extreme fatigue, malaise, brain fog, & digestive issues, but also neuropathy, arthritis, TMJ, & psychological/emotional distress. Henry also noticed that their mental health was deteriorating, a sign that the Lyme bacteria were exacerbating the anxiety & mood disorder that were already present prior to infection. About 4 years after initial diagnosis, Henry’s distress at their worsening physical & mental health led them to seek treatment again.

Henry first tried several primary care providers at various clinics in New York City. None of these took the disease seriously. The most help Henry received from these providers was a prescription for Gabapentin. Some providers would order a Western Blot, but when it came back negative they would dismiss Henry’s concerns and would not opt to do further testing despite hard proof that the Western Blot is far from a definitive diagnostic tool in patients with persistent, or “chronic” Lyme disease.

Henry had top surgery in the summer of 2019, and in the months that followed, their symptoms flared up worse than they ever had. Henry had to quit their job because they were too ill to work, and they were little better than bedridden. They would try to get up from the couch to use the bathroom, and would have to sit back down just to recover from the exertion of standing up. They became more and more depressed, distraught, and hopeless.

Henry had heard about Lyme specialists. Henry also knew that Lyme specialists could not accept insurance, Medicaid or otherwise. This is because the Infectious Disease Society of America (IDSA) still does not officially recognize chronic/persistent Lyme disease as a legitimate diagnosis, despite a wealth of evidence to support such an assertion. Lyme specialists, Lyme patients, and other experts (authors & journalists who have researched & written about the disease, etc.) all speculate that the IDSA refuses to change their treatment & diagnosis guidelines for Lyme because there are board members of the IDSA who have vested interests in insurance companies: insurance companies don’t want to pay for long-term treatment protocols, and all medical experts on the disease agree that long-term treatment is required to treat patients with chronic/persistent symptoms.

At the end of the summer of 2019, Henry decided that they needed to try to see a Lyme doctor, because their symptoms had become totally debilitating. Henry received a recommendation from a family member who had suffered for decades with Lyme, a Lyme specialist in Westchester, NY. Henry was only able to afford two visits with this doctor, receiving treatment for about a month there. He was the first medical professional who had taken them seriously. He did an extensive in-person intake, going through a list of Lyme symptoms and discussing each one that applied to Henry. He did extensive blood work, and he prescribed Henry a month of doxycycline and another antibiotic. He explained that Henry would need several months of antibiotic treatment at least, and perhaps even a year or two, depending on Henry’s response to treatment. He explained that oral antibiotics would be tried first, and if they were not proving effective, Henry would be given a port and would receive IV antibiotics. Even though Henry could not afford to continue seeing this doctor, he was their first glimmer of hope.

In the years that followed, Henry continued to research the disease on their own, and it became clear that the best treatment for chronic Lyme infection is twofold: in treating a patient with chronic Lyme, the goal is not just to rid the body of infection, but also to repair the vast damage that has been done to the various parts of the body (brain, joints/bones, nerves, etc.)

One winter, a couple of years ago, Henry began noticing a serious worsening of neuropathic symptoms. Henry would wake up every night, in the middle of the night, and would feel like one (or sometimes both) forearms & hands belonged to someone else’s body – they would become so numb in the night that to touch them felt identical to touching someone else’s limb. Henry got a referral from their primary care doctor for a neurologist who took their Medicaid plan (one of the most helpful things that PC did for Henry was provide this referral) and Henry made an appointment. When the doctor entered the examination room, he began to ask Henry questions. Except each time Henry would begin to answer, he would frustratedly interrupt and ask his next question, without letting them finish describing their symptoms. Henry tried to explain that they were waking up with very numb forearms, hands, and fingers, that they experienced an constant quivering in their hands, that their tongue would quiver whenever they stuck it out, that they had random itching without cause, sometimes in the same spot over and over and over again, and that they would get shooting nerve pain in random spots throughout their body, including legs, arms, hands, feet, and jaw. The doctor did not care to listen. Here is what he said:

-Here’s an order for an MRI, you can do it if you want but you’re not going to find anything. I don’t think there is anything wrong with you.

Henry left that appointment feeling worse than any doctor had ever made them feel. As soon as they left the facility they burst into tears. They did not go back for the MRI because they did not want to see that doctor again.

Early in 2022, Henry was living in upstate New York, receiving help from friends (the parents of Henry’s long-time best friend) – a studio apartment where they could live rent free. The friends also offered to help Henry with the overwhelming process of investing in their own health. That winter, Henry was able to get on a medication that helped with the physical pain enough that Henry could function much better – although by no means were they functioning optimally, this helped immensely as it allowed them enough energy & wherewithal to do their day-to-day with more ease and figure out the logistics of making treatment possible. Henry found the Stram Center by word-of-mouth – it was recommended by someone whose friend had received treatment for Lyme disease there and got her life back, so to speak. Henry looked into the Stram Center’s treatment protocol, and found that it was exactly what they were looking for. The Stram Center is one of the few options for Lyme treatment in the U.S. where almost all aspects of treatment are offered in one place, by the same providers. They treat patients with a combination of long-term (several months to a year or more if needed) antibiotics, hyperbaric oxygen therapy (which is evidenced to be the most effective treatment for the neurological symptoms of Lyme when combined with antibiotics) as well as medicinal herbs & supplements designed to support the body’s healing process and repair the damage done by the disease. All of their patients work with a nutritionist as well, and have the option of seeing a social worker.

Henry had an appointment with a provider at the Stram Center in the summer of 2022, and it was beyond anything they could have hoped for. The provider was incredibly kind and attentive, spending nearly two hours doing an in-person intake with Henry. The provider then ordered extensive blood work, including all three blood tests for the Lyme spirochete, and for the first time since initial diagnosis in 2015, Henry’s blood work showed evidence of infection. Henry was able to go to the first two appointments with the help of family members, but it soon became clear that the treatment was going to be much more expensive than Henry’s family could afford. Because of Henry’s limited ability to work, it has been incredibly difficult to save up money at all, let alone set any aside for treatment. That is why Henry is asking for help here.

Henry in Their Element :)