Most of you are at least somewhat aware of my current situation, but for those of you who aren't, I'll give you the cliff notes version. I will include links to both of my Facebook posts with the detailed explanations at the bottom of this post. So here goes:
In 2011 I was in a serious car accident. I developed 9 bulging discs and was diagnosed with degenerative disc disease because of the accident. So obviously I have lived with moderate low back pain since then. In 2015 I began developing additional symptoms with no apparent cause. The symptoms increased in severity and frequency as time went on. I went through all the testing I could do at the time, and still had no diagnosis. At the end of 2016, I was finally diagnosed with ankylosing spondylitis, an arthritic autoimmune condition that attacks the spine. My other symptoms not related to my back continued to get worse even after several months of treatment.
In August of 2017, I was finally diagnosed with Lyme disease and began treatment for that. I started with the standard treatment regimen for acute Lyme disease (oral doxycycline and IM/IV Rocephin for 21-30 days). I improved, but only slightly at the 30-day mark. I found a Lyme specialist office in Foster City, CA. They did further testing, and my bloodwork showed that I also had Babesia (a parasite), Bartonella (a bacteria), Mycoplasma (a bacteria), Marcons (a very resistant strain of staph bacteria), and two different mold species growing in my sinuses. All of which are commonly known as co-infections of Lyme. I have been in treatment since August 15th of 2017. Since then, I have significantly improved.
I’m able to carry on fluent conversations, most of my cognitive impairment and other symptoms have also really improved. However, we have had to change medications several times because I continue to hit walls in my treatment. Having the autoimmune condition makes it difficult for my body to fully recover. Due to all my medical conditions and severe chronic back pain, I have lost significant time and money from my work. I dropped down to working part-time in September of 2015. In 2016, I averaged 20 hours a week. My hours continued to decline until I was only working 3 hours a week at the beginning of 2017. I also had to drop out of school in 2017.
Obviously, this has put a large strain on our finances. My wife is amazing, and she has increased the hours she works to help make things easier for us. But frankly, it isn't enough. When we were both working full time, we made around $35,000 a year. Currently, it is a little less than half of that. Now for the dirty secret of chronic Lyme treatment. People really have no idea how expensive it is unless you personally know someone who has gone through the treatment. There is a lot of controversy surrounding the treatment of chronic Lyme. Since the CDC doesn't recognize chronic Lyme as a diagnosis, insurance companies will not cover any medications prescribed for Lyme treatment. This essentially means that Lyme treatment is very expensive. Generally, the treatment cost range for chronic Lyme is somewhere between $20,000-$60,000 dollars and 6-18 months. Several Lyme clinics have been known to rip off patients. They charge an insane amount and not actually help the patients.
I was fortunate enough to find a clinic that has been fantastic and very helpful. They use other accepted diagnoses for medications when they can so that insurance will cover it. Medications, in general, however, are still expensive. For example, one of my IV medications through my insurance has a daily copay over $250-dollars. Other oral prescription medications have a $275-dollar copay. It would be significantly more expensive if insurance didn’t cover it. I am currently taking a total of 29 medications. I’m on 3 IV medications, 14 oral prescription medications, and 12 over the counter medications. So, as you can see, treatment is very expensive. I've attached a screenshot of my medical claims history for 2017. Just through insurance, we paid over $23,000 in 2017. We spent approximately another $10,000 through other procedures that simply were not covered by insurance. I'm still going through our receipts and adding everything up for our taxes. I’ll let you know what the number adds up to when I finish. We also hit my $10,000 max out of pocket for my insurance on February 27th of this year. We have already spent over $10,000 this year.
Even though the max out of pocket is reached, there are still other fees for medications and such that we will have to pay for this year. Insurance doesn’t pay for the clinic visits or over the counter supplements. Our visits generally cost $250-$1,000 depending on the medications I pick up and motel costs for the night. I have approximately 2-3 months left of treatment if I don't hit any more roadblocks. We will probably have to take out a loan within the next month to keep paying the bills since we have already spent more than what we earn in an entire year. I have applied for disability insurance (both state and private) and am currently waiting to see if I am approved. We burned through our emergency savings account (about $6,000), college account (about $8,000), and closed out my IRA account (about $6,000) all in 2017.
Most of you who know me, know it is difficult for me to ask for help for anything in general. I’m a very proud, private, and self-reliant person, and I have debated asking for financial help since 2016. But I need to think past my own issues and do the best I can to provide for my wife, and this is one of the ways to do it. I know money is something that most people are short on, and I would never ask people to donate if it negatively affects them in any way. So, if you would like to donate and are able to, we thank you so much. The campaign goal of $10,000 is not for a specific type of treatment, but I figured that it was a good number to ask for. I'm not expecting to get anywhere close to that, but every little bit helps. But please do not feel compelled to donate. Prayers are always greatly appreciated as we make our way through this journey.
This has been a three-and-a-half-year journey that has been the most difficult thing to go through for my wife and me as individuals and as a couple. It is most certainly an expensive journey as well. But the main takeaway is that my wife and I are stronger through this journey and that I am finally getting better. We can finally see the light at the end of the tunnel as it were, and that’s what counts. We have learned so many things through this experience about life in general and about ourselves. And we could not (at least I could not) have made it without the amazing support of our families, friends, and coworkers. Our entire community has been so helpful on this journey. Thank you all. I plan to upload a video as soon as I’m able to with the full, detailed story from the beginning. I will try giving updates as I learn them myself. I am toying with the idea of writing about my experiences to try to help others in similar situations. Let me know if you have suggestions. Below are the screenshot and links to my Facebook posts.
Link to my first health update (diagnosis of Ankylosing Spondylitis):
Link to my second health update (diagnosis of Lyme Disease):
- lisa skellenger
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