*Originally published 10/21/19*
Wow! That is all I can come up with to describe my weekend. This past Saturday, October 19th, my mom and I had the privilege of attending the 4th annual Lyme Disease in the Era of Precision Medicine conference in New York City. This was a free event, open to the public (but you still had to register) and it brought together some of the most profound, and groundbreaking physicians and researchers in the Lyme Disease field.
It was a 9 hour day, and boy did I learn a lot! So, instead of recapping all 9 hours here, I’m going to share my take away, and if you’d like to see the presentations, LymeMind recorded them.
There was a lot of talk about new diagnostic tools and treatment at the conference. One promising new way of diagnosing and treating was discussed by my friend, Dr. Neil Spector. Dr. Spector talked about what could potentially be a PET scan that can visibly show us the Lyme bacteria. Can you imagine?! Right now, there is no accurate way to test for Lyme disease. Let me rephrase that - the blood tests they have are NOT ACCURATE more than half the time! That is why it takes many people so long to get a diagnosis. So, if we could have a scan that could literally show us where the bacteria is, my golly, that would be a HUGE game changer.
Dr. Spector is also working on a targeted non-antibiotic medicine that would kill the Lyme, but not harm our good bacteria. One of the major impacts of our Chronic Lyme treatment is that while it’s getting rid of the Lyme bacteria, we are also damaging the rest of our bodies. If we could have a treatment option that doesn’t cause the residual effects we all face now, everyone would be much better off.
Another “new” treatment option was discussed a few times at the conference and that is the use of Disulfiram. Disulfiram is a drug used to help alcoholics fight alcoholism, but recently it has begun to be used to treat Lyme and has shown some promising results. There have been several Lymies on Disulfiram that are claiming to have reached remission, which is amazing! The only downside is that it seems to have some detrimental psychotic effects which worries me. Though, as one patient told Dr. Leigner, the psychological breakdown was “worth it” to not be in Lyme hell anymore. Let that sink in! These people (Lymies) would rather take a chance of having a psychological breakdown if it meant going into remission--It makes you question “how bad must Lyme be then?”
My personal highlight of the conference though, was seeing my old LLMD, Dr. Crystal Barnwell, speak. I haven’t seen Dr. Barnwell since 2015 when she took me off of my first PICC line--that was the day she told me she thought I was going into remission and the day she told me she was leaving the practice I was seeing her at and moving to Georgia. Two weeks after I got my PICC line out, I went away to Salisbury University, and by the end of the semester, I was getting paralyzed and had to drop out of school to get another PICC Line. Remission was far, far away. I used to be mad at Dr. B for leaving me, but this Saturday I found out why she left, and I am in awe of her.
After she left Virginia, Dr. Barnwell made it her mission to bring awareness (and treatment) of Lyme disease to the South. Many people think that Lyme is just in the North (more specifically the Northeast) but that is definitely not true. Dr. Barnwell works in the poorest places in the South helping to diagnose, and treat those with Lyme (that had no idea what Lyme was!). She started her own practice, The Danio Group, where she does patient house calls. Dr. Barnwell is single handedly saving the thousands and thousands of Southerners who have been deemed “invisible” in the Lyme world, and we should all be grateful for that.
After her speech, I happened to see Dr. Barnwell in the hallway. I said “hi,” and before I could ask if she remembered me, she pulled me in for a big hug. I cried, she cried, my mom cried--it was an emotional day. Dr. Barnwell is the doctor who got me to the best I had ever felt, until now. Without her treatment, I would not be where I am today, and to be able to thank her again was amazing.
Next, my mom and attended the breakout session on mothers and babies with Lyme. This was what I was most looking forward to all day, and it was a tough pill for my mom to swallow. We’ve heard over the years that Lyme Disease can be passed from mother to child in utero and that even whole families end up with Lyme because of this, and this weekend it was confirmed to us. There was a panel of two doctors and one nurse--all very well versed in congenital Lyme. the consensus is that Lyme Disease can be passed from mother to child, and it can also make it extremely difficult for women with Lyme to conceive (most have 4 or more miscarriages). I have known this for years, and I have accepted it. I have said for some time that I am not going to have children because of this, but my mom never really believed me until this weekend.
It was hard for me to see her face fall when the doctors confirmed what I already knew--and I won’t lie - it was still a little hard for me. It’s unsettling to be 21 years old and know you will never have children, but it’s just another way Lyme has changed my life course and I am sure there is a reason.
This session was also eye-opening in other ways. There was a psychologist who was discussing how anxiety is the most common mental health issue in Lyme patients (Hello! validation for me!). I can’t remember who said it, but someone said that in this day and age, many people are quick to diagnose people with anxiety and depression without even looking for another cause--like Lyme. Infectious diseases can cause psychological problems, so why do so many people get put on antidepressants or anti-anxiety meds without being checked for other causes first? Just another thing wrong in our medical system.
And that is another huge lesson I came across this weekend--our medical system is even more broken than I thought. When Dr. Spector was presenting, someone asked how long it would take for the FDA to approve of his new treatment. Dr. Spector responded with “How do you get a drug approved for a disease that the FDA does not recognize?” Herein lies the problem. How are we supposed to get better if the medicines aren’t approved? They won’t be approved because our illness is not seen as a “real” disease. This is what leads to people having to pay an arm and a leg for treatment. It’s unacceptable.
Also, most of the attendees were patients, not physicians. How are the doctors supposed to learn how to help us if they don’t show up to these events? In fact, one of the presenters even mentioned how amazing it was that the Lyme patients all show up, and so disappointing that the physicians aren’t taking the initiatives they should. In the Lyme medical world, we,the patients, are forced to be our own advocates when it’s the doctors who should also be standing up with us and fighting back.
We also heard a representative from the CDC speak, which was quite interesting. Here’s a little backstory on Lyme and the CDC--they don’t think Chronic Lyme is real and thus they are the reason insurance doesn’t cover treatment and why no one believes us. So having a CDC rep there was bold. But it turned out to be eye opening, as well. This representative started off by thanking us for letting her in because she understands how we feel about her organization. What I took away from her presentation, is that she believes in Chronic Lyme but her organization does not. She told us that as a federal employee, she can’t lobby even if she wanted to.
She showed us the CDC maps and even admitted how inaccurate they are. She said that only 1/10th of Lyme cases are picked up in their surveillance. 1/10th! She also explained that some states--like Massachusetts--have stopped sending in their yearly Lyme cases because there are simply too many. So how do we know how many people have Lyme? We don’t and that is terrifying.
She also explained how in the CDC, they can only use the amount of money given by the government each year for each disease and they cannot reallocate funds from one disease to the other. The CDC is only given $12 million annually for Lyme disease--that is NOTHING.
So what’s the big take away? Well, there are two. First, the government must help us. Nothing can get done in this country without money and without government approval. All of the amazing research we heard about all came from privately funded endeavors. Just think about how much further we could get in curing this epidemic if we had government funding!
So how does this happen? Well, this leads me to my second takeaway. We must all come together. This is something I heard multiple times, in different presentations all day, and I have been saying it for awhile now. There are a ton of AMAZING groups out there doing great things for the Lyme community, but just think about how much more amazing it would be if they all united together to become one Lyme fighting powerhouse?
In 2005, Autism Speaks--the largest Autism advocacy agency in the US--was formed by merging three Autism powerhouses. Since then, they have enacted so much change for the autism community--including legislative and awareness campaigns.
This is what we need in the Lyme world. In order for the change that we so desperately need to come, we all must join forces. Separate voices can be loud, but just think about how loud it will be when all hundreds of thousands (or millions) of Lymies come together--they would never be able to tune us out again.
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