Here’s why I’m ticked off…

Consider this… Lyme Disease is growing at a rate six times that of HIV and almost twice as fast as breast cancer, at a rate of 400,000 per year in the US alone, and as far as the world goes, over 1 million just in Eastern Europe. These numbers do not include the various co-infections that many people with Lyme Disease also have (I have a total of 5 separate tick-borne infections). While I am in no way minimizing the severity of other serious health conditions, it’s important to note that our National Institute of Health and Center for Disease Control spends a combined $67,625 for each new case of AIDS/HIV, but only $125 for each new case of Lyme.

To add to the frustration, the CDC continues to paint the incomplete picture that “most cases of Lyme disease can be treated successfully with a few weeks of antibiotics”. This statement implies and assumes that a person knows they were infected by a tick and receives the right course of treatment within a fairly short window of time. While the CDC website mentions that a handful of people may come back with non-specific symptoms, referred to as post-treatment Lyme disease syndrome (PTLDS), they do not condone or support the use of the term “Chronic Lyme Disease”.

So, my question to the CDC is this. What about the people who test positive for Lyme Disease now, but were never tested or treated when originally infected several years ago? I was bitten by a tick as a child, exhibited many of the childhood Lyme symptoms, have been seriously ill since 2002, fought for years for the more accurate (non-CDC sanctioned) Lyme testing, and finally received a diagnosis in December 2018. Because I wasn’t diagnosed and treated within the first few weeks/months as a child, I don’t fit into the definition of classic Lyme Disease or PTLDS. That’s like saying that if a cancer patient isn’t diagnosed and treated within the first few months of a growing tumor, they don’t have cancer. I’m still in the early stages of understanding the political motivations behind the extremely controversial diagnosis of Chronic Lyme Disease, but I will say this. Because my disease doesn’t exist, insurance is not obligated to cover.

To add to this disparity, the CDC’s two-tiered approach to Lyme testing often produces inaccurate results. The simplified explanation is this. Their tests only test for your immune system’s response to the Lyme bacteria, not the bacteria itself. So, if you are too newly infected and your body hasn’t started producing these antibodies, your test will probably come up negative. On the flip side, if you have had the Lyme bacteria in you for too long, it often has the ability to escape detection, having already wreaked so much havoc on your immune system, your body is too weak to mount a response. Additionally, there are over 100 species of Borellia (the bacteria that causes Lyme) and there are numerous tick-borne co-infections that aren’t being tested for at all.

To share a deeply personal perspective of trying to get tested for Lyme, it took me several months last year to get a referral into the University of Washington Medical Center’s (UWMC) Infectious Disease Department to specifically ask for Lyme Disease testing. This was after two other local infectious disease doctors were unwilling to take me as a patient when I told them I wanted to be tested for Lyme. They would have seen me if I was already diagnosed, but did not want to be responsible for the diagnosis. I had asked other doctors for this testing in the past, but due to the complexity of diagnosis, I hadn’t been able to find a doctor that could help. I was really hoping UWMC would have the answer I was looking for!

I could not believe the treatment I received at UWMC. The young female doctor immediately dismissed my questions about Lyme and assured me there was no such thing as Chronic Lyme Disease, which having done my homework and knowing the CDC’s stance, didn’t completely surprise me. But what did surprise me is that she didn’t want to talk about any of my over 100 symptoms that I handed her a copy of, a list that continues to grow more rapidly each year. Instead, the doctor asked about my support system at home and implied that my husband wasn’t providing enough understanding/attention, said I should see a psychiatrist and consider antidepressants, and suggested they test me for HIV, Hep-C, and Syphilis instead (what?!). When I asked why they were focusing on those diseases (which I told her I had been tested for as a precaution back in 2002), the doctor proceeded to tell me that I would be surprised at how many 80-year old ladies came in that had been shooting up or were promiscuous…even after I told her I had been happily married for 22 years! I was in shock, speechless, and so did not do a good job advocating for myself, but they at least appeased my insistence on running the first part of the two-tiered CDC-sanctioned Lyme test, which I already knew would be negative based on my suppressed and weakened immune system.

When all was said and done, the official doctor’s report on file at UWMC was that I came in for Chronic Fatigue (grossly incorrect), I should consider antidepressants, and surprise – I did not have HIV, Hep-C, or Syphilis. I was disheartened, humiliated, madder than heck, and felt defeated. I was at one of the top teaching hospitals in the US and they completely misrepresented the reason for my visit, and it was now on my permanent medical record.

It’s important to note that over 50% of patients with Lyme disease test negative with the CDC’s two-tiered approach, so patients suspecting Lyme are forced to seek out very hard to find LLMDs, or Lyme Literate Medical Doctors, in order to fight for alternative testing. And because these doctors are essentially going against conventional testing and treatment guidelines, most are not covered by insurance and several have actually faced disciplinary actions and/or lost their licenses to practice medicine altogether (if you haven’t watched Under Our Skin available on Amazon Prime Video, it’s eye-opening).

It took me years to find a doctor willing to write the “prescription” for the more comprehensive testing done by IGenX Labs in Palo Alto, as well as interpret the results, which are very complex. With the help of my amazing Internist and tenacious Lyme Literate Doctor, I was finally able to have this testing done (along with several other cutting-edge blood tests) in November 2018. I tested positive for five different tick-borne infections, including Lyme Disease and Rocky Mountain Spotted Fever.

That one IGenX test cost $2000, my two monthly doctors’ appointments are around $700/month, and my relatively non-aggressive first round of treatment protocol medications and supplements are over $2000/month. It will take many different protocols over the next several years to determine what (if any) works best for my particular combination of infections, as well as the damage these infections have already done to the rest of my body. This current plan is cheap in the world of chronic Lyme, where people are spending upwards of $50-$100k per year… Mortgaging their homes in hopes of someday getting better. Hoping that someday insurance will cover…

Never in my life have I felt so strongly about advocating for something. I’m unbelievably ticked off that I was not diagnosed sooner and hope to quickly turn a profit in my new business, so I can start donating something meaningful to this fight! I know there are so many wonderful doctors out there doing amazing things in the world of infectious disease medicine, and I’m hopeful that if enough people start telling their Lyme Disease (and co-infection) stories, organizations such as the CDC will not only listen, but change the current controversial dogma around a disease that is spreading at epidemic levels, and has already ruined so many lives.

I start my first protocol in two days and am scared to death. I’ve heard that the toxins released from the bacteria die-off do not leave the body quickly enough, causing an awful reaction called the Herxheimer Reaction. I’ve heard that this can be as bad or worse than the symptoms of the disease. I’ve heard that a few people have died from it. Similar to chemo, these treatment protocols kill off all of the “good stuff” in your body while killing off the bad. I pray that I have the strength to get through it. I have no idea what to expect and so many Lyme Disease journeys do not have a happy ending. I hope that someday I will get my happy ending.