10 years of Lyme treatment really adds up

I have been on this treatment rollercoaster for 10 years, so this is long, but I wanted to make sure I included all the important details. TL;DR : Lyme disease is terrible and doctors who treat it don't take insurance and are crazy expensive, but I still want to get better even if insurance companies don't want that for me.

 

The Long Version:

As most of my friends and family know, I was unlucky enough to be bitten by a tick in 2012, and nearly 10 years later, I am still battling it out with the bacteria that is Lyme disease.

 

It is a sad reality of the American healthcare system that when you have a chronic, seemingly untreatable disease, the CDC gives up on you, and, rather than searching for solutions, they arbitrarily recommend that doctors not treat you for more than one month. They then actively work to discredit doctors who prescribe treatment past one month, despite the fact that their own study found that more than 60% of patients who later recovered from Lyme required longer-term antibiotics. So then, the doctors searching for solutions who don’t want to follow this arbitrary treatment timeline end up leaving the medical ~establishment~ so that they can treat patients without red tape. Now, nearly all the doctors who can treat Lyme effectively are ~out of network~. This presents a new challenge for the unwealthy (in this case, me). These doctors who have ditched insurance companies so they can actually treat Lyme are also prohibitively expensive.

 

When I was first diagnosed 6 years ago, I was hopeful. After more than 4 years of having no idea what was wrong with me, I had finally named the culprit and could fight it. Now, I have learned that I still have an active Lyme infection and have not in fact been on the road to recovery these past 6 years like I thought, and it is hard to renew the hope that came with the initial diagnosis.

 

I want to get better. I don’t want to ignore doctors’ suggestions because I can’t afford them. But I also don’t want to still be paying off this medical debt until I die (that’s what student loans are for).

 

I never wanted to turn to gofundme to do what my health insurance refuses to do, but here we are. I know that times are tough and there are a lot of important social injustices that could use your spare cash, but if you are able to help or send to a friend who might be able to, I would be eternally grateful.

 

My Lyme story up till now:

When I was first diagnosed with Lyme, I had just graduated college and was about to start working as a FoodCorps service member. If you know anything about the ~corps~, you know that payment is a “living stipend” that barely covered rent, food, and gas (and I truly mean barely in the Bay Area). It was about this time that I realized my dad was right when he said I should’ve majored in something more lucrative than English literature. I could not afford $400 worth of antibiotics each month, let alone the doctor visits ranging from $1500-3000. My parents were able to help me through the process of submitting for minuscule reimbursements from my insurance, but a big chunk of the two years I was on antibiotics was just racking up debt.

 

I have considered giving up my career in nonprofit to pursue the lucrative job of becoming such a good Jeff Bezos impersonator that people think that I am him and will give me money for breathing, but, tragically, I do not wish to go to space, and I would probably waste that money on ending world hunger.

 

In 2017, after I came off of antibiotics, I decided I couldn’t afford to see my doctor anymore. I had needed her to get the antibiotics and I was done with those. I didn’t get another test to make sure the Lyme bacteria was gone, because the test was $2500. I trusted that the treatment worked and I set about managing my residual symptoms from the antibiotic fallout: virtually no functioning immune system, a wild hormone imbalance, pernicious anemia, and a host of new food sensitivities. This trust was a bad call, but, again, they did not teach great discerning medical judgment skills in my English classes.

 

The past four years have been a long road of adjusting my diet to help my immune system, learning about how B12 can almost kill me, balancing hormones so I don’t want to die for half of each month, and still trying to figure out how to treat my chronic pain.

 

Some of these changes did help me feel better. Cutting out certain foods is the only thing that has ever helped my immune system. My energy improved and I no longer had cold and flu symptoms all the time. At this point, I had been on this Lyme journey for 6 years, so I did not expect recovery to be quick, and I trusted that marginal improvements meant I was on the right track.

 

Unfortunately, it was probably about this time that I started developing worsening psychological symptoms. If you’ve ever looked into Lyme disease at all, you might know that psychological symptoms are some of the most common and can include depression, anxiety, panic attacks, sleep disorders, obsessions/compulsions, brain fog, executive functioning problems, anti-social behavior, and hallucinations.

 

I was most familiar with hallucinations as a symptom, and since I never had those, I never really considered psychological symptoms a part of my Lyme. I had struggled with anxiety, depression, OCD, and sleep issues my entire life, so it was hard to pinpoint that these were getting worse. Looking back now, it is pretty clear to me that there was a turning point when these things I’d lived with forever started to get much worse (about 6-7 years ago). I just thought I needed to do a better job of managing my mental health and I set about doing that, to very little avail, as talk therapy and just trying really hard to be okay turned out to be quite powerless against bacteria eating my brain. Physical pain is bad, but physical pain compounded by mental pain is so much worse. Once my brain fog got to a point where it was making it difficult for me to read, write, and do my job, it became clear that there might be problems beyond my mental health.

 

Over the past several months, I started noticing symptoms that were presenting more physically. My peripheral neuropathy was worse, I was freezing cold all the time even when sitting in direct sunlight, and my fatigue was making it difficult to do normal everyday things I love, like cooking and long walks. 

 

I made an appointment with a new doctor and confirmed that this little bacteria I thought was gone was just attacking my body in a different way. I just never brought up my mental health to doctors treating my physical symptoms because, even after 10 years, I still get nervous that presenting a laundry list of problems will cause doctors to brush me off (there's precedent). The way my doctor put it, the trauma to my limbic system has caused my brain to get locked in fight or flight mode, making my brain operate similarly to that of someone with PTSD. She presented a treatment plan and here we are, back in the early stages of “it has to get worse before it gets better,” only now we're targeting the brain and the body. 

 

Sadly, a major barrier to treatment for me is the cost. My first appointment with this doctor alone was more than $3000 with the appointment and blood tests, and that's just to tell me the state of my infection, before any treatment. It is depressing to think that my first thought upon learning that Lyme was still out to get me was not about my health, but about how expensive this would be and how deciding which of my doctor’s recommendations I would take would be purely a financial decision. I think making the decision to pick and choose from my last doctor’s treatment plan based on cost is part of the reason this bacteria is still making itself comfortable in hotel Elizabeth. So this round, I am braving the highly uncomfortable waters of asking for help in the hopes that being able to prioritize treatment can finally get me off this rollercoaster.

 

Thank you for any support,

Elizabeth