Support Tara's Battle Against Chronic Lyme Disease

Hi everyone, I’m asking for your help on behalf of my wife, Tara, and our children (ages 27, 12 and 10). In December of 2021, our family life was turned upside-down seemingly overnight when Tara began feeling extreme fatigue and joint pain. After many doctor’s visits and tests, Tara was diagnosed with late-stage Lyme Disease.

She went from being a happy, active mom walking our young children to elementary school every day to being nearly bed-ridden and needing to be pushed in a wheelchair when leaving the house for medical appointments. In addition to the pain, Tara also found herself struggling with extreme cognitive dysfunction. She was unable to continue her job as a Public Health Researcher due to the fact that this rapid onset brain fog made it impossible to read and retain information.

It took a lot of doctor’s visits with various specialists and many rounds of testing before Tara got a call from the Department of Health to tell her that her latest blood work showed that she was CDC positive for Lyme Disease. I’ll share more below for those unfamiliar with Lyme and its complications.

Tara has always been the kind of person willing to support others, from being active in her religious community, volunteering her time for service, and hosting local children’s classes. Tara loved to bake and would regularly make dozens of Christmas cookies that she would share with family and friends. She would visit people in the hospital, care for new moms after giving birth, clean houses for people who were ill or injured, and sit with people who were sick or dying.

So this transition to being the one needing other people’s care and aid is a difficult one.

We’ve already spent down our savings and have a long road ahead.

Last year alone, we spent at least $25,612 in Out-of-Pocket Medical Expenses.

And we are on track to need more than that this year.

For example, Tara’s next treatment will require daily visits for 1-2 weeks with a specialist (not covered by our insurance) who is 5 hours away from our house.

That will mean:

Out-of-Pocket Expenses for Daily Visits
Travel by Car 5+ hours away from home
1-2 weeks of leave time for Tara’s mom to drive and support Tara’s daily needs
Food and Lodging during the 1-2 weeks away from home
Physical toll of being in the car 5+ hours each way
Physical toll of having to get up early to be at daily appointments for 1-2 weeks
Emotional toll of time away from our children (on both Tara and the kids)

Because of the hardship and physical toll, the doctor wants to limit the number of times Tara has to travel to do these intensive therapy rounds, but we expect that we will need to go back and be in person every 3-6 months.

This 1-2 week series of appointments will cost between an estimated $4,450 - $8,900 in out-of-pocket medical expenses, plus the food, lodging, follow-up appointments and medication.

(See below for more on the proposed treatment plan and estimated costs)

We are so grateful for the support and assistance we have received so far like bringing Tara to and from medical appointments, helping out with getting the kids to and from school, and supporting our 12-year old’s need for braces.

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Why Doesn’t Insurance Cover this Treatment?

Up until just this past year, there has been a strong opposition by the Centers for Disease Control and Prevention (CDC) to the idea that Lyme could lead to a chronic condition.

The lack of acknowledgement that this was a diagnosable condition meant that insurance companies would only cover the early-stage treatment for Lyme and only under very strict diagnostic conditions.

In fact, when the Department of Health called Tara in January of 2023, shortly after her 43rd birthday, to tell her that she met the criteria for a late-stage Lyme Disease diagnosis, they told us that the only treatment option was palliative care and that we should just try to make her as comfortable as possible for as long as we could.

Due to the lack of research funding, there are limited recognized treatments and insurance companies like our have listed treatment as “not medically necessary”.

But since the pandemic began, there has been a rapid increase in patients with chronic conditions and a renewed focus on the longer term impacts of Lyme and other chronic conditions like ME/CFS and Long Covid.

Congress has, just in the last couple of years, approved millions of dollars in federal funding to study prevention and treatment options for the chronic conditions, but much of this research is still in the early stages and not at a place where the insurance companies will cover the costs of the treatment options being explored.

For more information on the obstacles and recent new developments in research and funding for chronic Lyme, ME/CFS and Long Covid, see the links at the bottom of this post.

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There is Hope for Healing

Not willing to accept the Department of Health assumption that Tara would only decline and should seek Palliative care, we have sought out medical specialists that are looking at the new science as a path forward.

After spending the first year struggling with the devastating change and moving back across the country to be closer to our family, we have finally found some treatment options for Tara that have been working.

One of the complications with chronic illnesses like Late Stage Lyme and Long Covid is that there are a number of symptoms that must first be addressed.

In the past year, Tara has been treated and seen some improvements with both Postural Orthostatic Tachycardia Syndrome (POTS) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). (see below for more details on these conditions)

These two conditions cause Tara’s system to crash after even a small amount of activity. Tara now has a doctor to help manage the POTS and also found support in RemissionBiome, a patient-led community of self-experimenting patients who follow a treatment protocol (with her doctor’s support) which has led to noticeable baseline improvements.

Prior to this treatment, even small amounts of activity like showering or cooking a simple meal would lead to Tara spending hours or days in a crash state where she had little to no energy and couldn’t spend long around other people. It was heartbreaking for her to have to miss the last 3 birthday parties for our young children.

But now, she is finding a small degree of improvement, and has been able to play short rounds of “Hide and Seek” with the kids around our house, prepare some simple food for herself when needed, and she has been able to work for longer stretches of time without having a major crash.

These very short moments of joy, being able to laugh and play with the kids, adds a sense of normalcy back into our lives. The huge boost in connection and happiness from something as simple as a few rounds of hiding around the house is well worth the physical exhaustion that comes with it.

These glimpses back into what it could be like to live a more “normal life” in the future are so important to the emotional well-being of our whole family. It’s the reason we have to keep pushing forward with these treatment options.

While her ability to engage in any activity is still limited, her crashes have become much shorter and more infrequent. It took a lot out of her to bake a few cookies, but she was so excited to finally be able to attend the first kid’s birthday party in three years this week, here at our house with a few family members.

The next focus for the treatment plan is to tackle the cognitive and neurological impacts of the Lyme. Tara recently started working with a new doctor whose clinical practice is focused on helping patients reverse chronic conditions including cognitive decline, autoimmune disorders, and Chronic Inflammatory Response Syndrome (CIRS) from biotoxins including mold and Lyme.

The Lyme protocol will have three components to it:

One area of focus is on reactivating/rebuilding the neural pathways in Tara’s brain. This is probably an over-simplification, but my understanding is that the inflammation caused by the Lyme led to a reduction in blood flow which has effectively shut down parts of Tara’s brain.

To address this, there is new research indicating that existing medicine can be repurposed for targeted results. For example, Ketamine is more traditionally used as an anesthetic but can be administered in small doses to activate new electrical activity in the brain, which effectively builds or restores pathways that have been dormant. Viagra is another medicine that can be repurposed in an off-label manner to encourage blood flow to those regions of the brain that had been cut off by the inflammation. Another way to increase blood flow, stimulate cell regeneration and enhance tissue repair is High Intensity Light Therapy (HILT).

Unfortunately, these treatments are very expensive!

You can see below an estimated invoice that we just received for the next proposed round of treatment. This will involve Tara being away from the kids for 1-2 weeks, her mom taking 1-2 weeks off of work to drive her 5 hours away and they will need to stay in a hotel while they are there.

Plus, there will be follow-up remote visits and prescribed medications. So this one round of treatment alone could cost in excess of $12,000.

We believe that this focus on the blood flow and neuroplasticity is a big part of the healing because it will strengthen areas of Tara’s brain that have been weakened which should boost her system’s ability to recover from the damage done by the Lyme and co-infections.

At the same time, they will use an antibiotic (previously used for Leprosy) plus a pulsed approach to supplemental antibiotics to treat the persistent Lyme infection. And finally they will use a combination of antivirals and antifungals to address the co-infections that come with having a weakened immune system.

What we like most about this specialist is that while he is looking at the very latest science and research and is looking to repurpose existing medications for off label uses, he is unwilling to do any treatment that he can’t measure before, during and after so that the improvements can be quantifiable.

As a result, this treatment protocol shows a lot of promise but it will require careful monitoring/frequent follow up visits and most of it will not be covered by insurance.

Estimated expenses (not covered by insurance) include:

$17,750 - Frequent Provider/Specialist visits and Weekly Lyme review with NP
$8,900 - 2-week Intensive Therapy series (in May, with a possible need for a second one in 3-6 months)
$6,550 - Monitoring and testing (brain MRI with Neuroquant, qEEG, T-cell test bloodwork, weekly bloodwork to monitor Lyme treatment, etc.)
$4,680 - Medications (Antibiotics for Lyme treatment, Antivirals for co-infections, ketamine for cognitive function, etc.)

Does not include:

Healthcare appointments with insurance copayment
Ongoing prescriptions and supplements
In-state travel and lodging for healthcare
Legal representation for disability claim
Unknown treatment plan following this next 6 months

GRAND TOTAL REQUESTED: $47,000

Asking for Help is Difficult

We know this is a big ask and typically pride ourselves on being self-sufficient. We are also aware of the many other people whose situations are similar or different from ours and who also need help.

But we aren’t content to just throw in the towel on seeking out a better quality of life for Tara, especially in light of the promising new treatment opportunities.

We have burned through our savings and have finally decided that the time was right to seek aid and assistance from this community.

Simultaneously, Tara is applying for social security disability, which requires numerous doctor appointments, paperwork/documentation, and testing to demonstrate her severe level of impairment. This is a long process that will likely take 2-3 years to complete and we are grateful to have found a knowledgeable lawyer willing to work with us at no cost to us unless the disability claim is approved.

Money aside, every single meeting and appointment and medicine schedule change is taxing and steals energy away. We are grateful for any bit of assistance you are able to provide.

Your time, well wishes and donations are so appreciated and we couldn’t get through this without this community.

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More about Tara’s Story

Tara is the kind of person who doesn’t give up. After becoming a single mom at the age of 16, she dropped out of high school but studied at home and tested out of all of her remaining high school classes. She then turned her attention to simultaneously parenting her baby, treating her PTSD, and beginning her college career. Slowly and steadily, Tara earned her Associates, Bachelors, Masters, and finally in May of 2021 her PhD in Public Health.

At the same time she raised her son, bought a foreclosed fixer-upper for $15k for her and her son to live in, stayed active in her local Bahá’í community and volunteered her time by serving on the Local Spiritual Assembly and teaching neighborhood children’s classes on various topics like ethics, morality, hygiene and nutrition.

As a single mom, Tara was only able to get her advanced degrees by working in a hospital associated with a local university where she was able to take two classes per semester for free. So she slowly kept pushing towards her goal while continuing to raise her son. We met, married and had two more children when she was nearing the end of her Masters program and then moved our family across the country so that she could begin a doctorate in Public Health.

Upon completion of her doctorate program, Tara landed a dream position as a postdoctoral research fellow at Kaiser Permanente Northern California and we were excited to embark on a new adventure in yet another part of the country. Her research centered around people experiencing judgment and stigmatization in healthcare settings, focusing on patient-centered care, patient-provider communication, and equitable access for individuals with substance use in pregnancy and postpartum.

Having grown up in Upstate New York, Tara must have been exposed to a tick with Lyme at some point, but there was never an identified bulls-eye rash to indicate Lyme. Which meant that the Lyme stayed in her system for many years.

Shortly after receiving a recommended COVID booster in December 2021, she felt fatigued and experienced widespread joint pain. Within a week, her health was impacted to the point that she struggled with work responsibilities and family activities. The way I understand it is that the COVID booster triggered the dormant Lyme and brought a cascade of inflammation and co-infections to the surface.

Almost overnight, all of the hiking and exploring of Northern California went away and Tara found herself nearly bed-ridden and needing to be pushed in a wheelchair when leaving the house for medical appointments.