My sincerest thanks to an amazing faculty and volunteers for their participation in the Educational Summit on Neurological Tick Infections Mental Illness & Suicide Prevention. It wasn’t without hiccups, but the feedback was great.
Videos will follow, but for now, here are the medical presentation slide decks.
So many of us are fighting to regain our health. It is both comforting and inspiring to read how others manage their illness and recovery. Writing provides an outlet for frustration and is a therapy of sorts. Equally inspiring are those who lead other advocacy projects and fundraising efforts. When we support each other, we win.
Our Lyme Nation Guest Blog is an opportunity for fellow warriors to share stories. Post a comment if you would like to blog here.
I have been trying to write a blog entry for three months. I have started three, maybe four. I have written some really great stuff – in my head. The problem is I have not been able to finish anything. It is as if there is a road block on the neuronal highway that connects my ability to think and type – or articulate clearly. There are days, sometimes weeks, that I live inside a bubble. I remain trapped and isolated inside my own head with thoughts racing a mile a minute. There are days I speak infrequently and can’t seem to construct written thoughts. I wonder, is this what autism feels like? I don’t want to talk to anyone. I don’t want to leave my home. I tremor, I seize. I grab things so I don’t collapse. I drop things, break things and bump into everything. My frustration level has skyrocketed because functioning at a basic level has been challenging. I have been treating this disease on and off (mostly on) since May 2013. There have been a few good months, but generally I really struggle and have been in a free fall since May.
Struggling with treatment is a misery I don’t wish on my worst enemy. Watching your child struggle is torture. Sadly, our illness has not been my only source of heartbreak. For the past two years, while my daughter and I schlep through life as zombies, I endured the collapse of my family of origin. An epic blow-out between my mother and sister has reduced us all to rubble. My dad passed a decade ago so he was spared from witnessing much of the madness to which he was a key contributor. I have managed to crawl out from beneath the pile of debris to assess the damage and whether there is anything salvageable about the situation. I’m coming up short. I guess it is good that zombies are “in” these days. That’s a plus.
There was a tremendous amount of stress and pain as the events of my family’s implosion unfolded. It completely destroyed my recovery. I’m angry about that. It is all I can do to keep myself functioning, and now I am navigating my mother through her most dramatic senior life change —alone. I’m pissed off and trying like hell to keep up this miserable fucking fight. So I will let it all go, because I have to, or else it will just eat away at me faster than the disease.
Given the state of my situation, I decided earlier this year it is time to start running through the bucket list. This summer my husband, daughter and I went on a Mediterranean cruise vacation. I cry thinking of just how amazing that experience was, and how deeply grateful I am to have the means to do it. We earned that trip. All three of us; because all our lives have been shot to hell for the past five years. Believe me, it was a financial stress. And, despite being in paradise, there were extremely low moments; including seizures, the ongoing heartbreak of being continuously mis-understood and my husband waking up on day two with a very clear EM rash on his back. Oh the meltdown we had.
I don’t need to explain anything to my fellow warriors about how greatly that spectacular journey set me back. I’m sure you could feel it just reading the words. I paused treatment two weeks before I left. I needed time to recover from the anemia side effect of Dapsone. From the moment I stopped taking all the pills, I began a four week binge of unhealthy choices. There was no way I was cruising through the mediterranean on a lyme diet. Sorry for the language, but FUCK THAT SHIT. I chose to live, rather than merely exist from June 29 – July 20th.
When our 11 day extravaganza came to an end, I found myself feeling resentful about having to go back home. I felt guilty for eating and drinking myself into an inflamed mess. I was frantic about my husband’s infection. I felt disgusted to return to a country that has been hijacked by moral bankruptcy, and facing a presidential race between Nope and Noper. I was drained both physically and emotionally. I was totally overwhelmed knowing I had to immediately hurl myself into the act of relocating my 81 year old mother into an Independent Living facility. I felt like I was like running head-on into a speeding train. I asked my sister to help me clean out the last bit of stuff from my mother’s house after she moved. I got an ice cold rejection. It was the emotional equivalent of being struck in the head with a bat. There is so much drama in my life that I wake up every night at 3:00 am in a hot sweat, wanting to hurl. Or maybe that is just the massive mother-*u*kin* herxheimer I’m enjoying? No matter how hard I try, I just can’t find even ground. Every moment of my life seems to nudge me toward the cliff of madness.
So now I am five weeks in to my third round of the experimental Dapsone, cocktail which I refer to as the Satan’s cocktail from the depths of hell. It includes Dapsone, Alinia, Omniicef, Minocyclin, Malarone, Nystatin, Leucovorin, stevia and supplements. Cannabis is the only thing that is getting me through the misery. It alleviates so many of the nasty symptoms. So essentially, I commit criminal activity daily in a desperate attempt to survive. I don’t know how much longer my body can sustain this beating. The thing is, my daughter is just turning 18 this November. I am not ready to let go of her or leave her behind. I infected her, so the least I can do is be here to help her as long as I’m able.
My daughter is so beautiful – inside and out.
Despite her health obstacles, she is focused, driven and successful. Her emotional intelligence and maturity is greater than most adults. But she is also very tired—very often. I know how this illness wears us down. I watched it destroy her figure skating career. (Below I shared a link to a video of when she performed at Rockefeller Center at the age of 10.) Since she is a high school senior, we are looking at colleges, but I’m sensing a hesitation in her search. The desire is there, as is the intellectual ability; provided she doesn’t flare. But this is causing some anxiety. Nobody knows her better than I do. We share the same disease. I know exactly what she will be up against at college. My daughter is not a partier. She is very selective about the company she keeps and likes her own space. I worry about her being able to manage dorm life and having no place to hide when the storm hits. I will support any choice she makes, but I do hope she chooses to be near home so I can rescue her on a moment’s notice: Or perhaps, so we can rescue each other.
So I fight to live this life the only way I’m able, which appears to be by criminally dancing on the fringes of insanity. There are days when the thought of opening e-mail makes me dive into my blanket fort of protection. Then there are days I send e-mails to Senator Cory Booker’s staff and tweet Governor Christ – a little pet name I have for him – in effort to get him to acknowledge that his state residents are being ravaged by tick infections. Bi-polar much? (I’m sorry Father, for I use thy name to speak evil. ) May I burn in purgatory. Oh, wait — I’m there now.
I am Alice staring up from the bottom of the rabbit hole called Lyme. I work as hard as I am able while I watch pieces of my life crumble to ashes around me. It is symbolic to finally pull it together enough to write this piece on the 15th anniversary of 9/11. On one of the worst days in America’s history, I sat with my two year old baby and watched in shock and horror as two of the world’s most iconic buildings collapsed on national television. I thought of the friends and neighbors that work in NYC, and remained glued, motionless, to the television. Our current daily horrors of Lyme pale in comparison to what happened to thousands of people from Manhattan and the surrounding communities on the day that changed the world profoundly. As I reflect it is as though Olivia and I watched a foreshadowing of our own simultaneous collapse that began in 2012.
I survive by having two missions. 1. Save my daughter’s future by fighting to fix this politicized mess of an epidemic. 2. Run through my bucket list, because there is no time like the present when your future is looking pretty sketchy. My goal is to have a Lyme fundraiser by the summer of 2017 and to run a stage production of Addy & Allie. This is what gives me the drive to continue dancing clumsily around the cliff of insanity. This is my crazy. I have no idea what makes me think I can actually accomplish any of this. But I can still try.
Here is a great song by Joan Osborne – a song I want to feature in Addy &Allie.
Chances are, if you had undiagnosed lyme for any number of years, you have probably been diagnosed with a mental illness. To me, this is the most frightening aspect of this denied epidemic. Lyme suicide rates will rise with the rate of infection. Incidents of violence will also rise.
Thankfully, there are people like Dr. Robert Bransfield that continue to be a leading voice of clarity on the subject of bacterial infection and mental illness. Below is an outstanding presentation on the subject presented by Dr. Bransfield.
I met Roberta close to a year ago. How we met was rather serendipitous, and an entire story in itself. I will talk about that in detail at some point in the future. For now, I want to stick with the critical elements.
Roberta is currently fighting to keep custody of her adult son, for whom she has “power of attorney”. Roberta has power of attorney for her son Jay, because his mental and physical health has completely deteriorated from neurological lyme disease. Jay’s story of infection, lack of diagnosis, and downward spiral is what we members of Our Lyme Nation understand without need for detailed explanation. We know it. We live it. We see it in other people that have no idea they are even infected. It is the “textbook” lyme story – on crack.
One of my dearest 30+ year friends, (and member of Our Lyme Nation)Terri Fevang introduced me to Roberta and Jay. Terry is a Certified Music Therapist and routinely plays music for terminally ill patients. Roberta heard about Terri’s program and hired her to play for Jay. Because Terri is one of the planet’s most beautiful people, she called me immediately and said “I need your help. Tell me what I need to do.” Terri is one of the few non-infected people that “gets it”. She knows enough about our misery to understand, this gig was going to be different.
We talked for an hour and it was amazing because talking to Terri is always amazing. We said our I love you(s) and she promised an update as we said good bye.
A few days later, I got the update. I immediately decided I had to meet Roberta and Jay and would join Terri at her next music therapy appointment with Jay. I am so glad I toughed out the solo journey, because it changed me. Again. I keep changing. But I digress.
Roberta’s picture should be in the dictionary next the the definition for “world’s nicest person”. This woman defines strength with grace in the face of adversity. The burden this woman carries along with her equally endearing spouse is monumental. Jay’s situation is just plain heart breaking. I asked Roberta if I could take video of Jay. I knew I would be seeing representatives of Senator Cory Booker. I wanted them to be able to see this 40 something year old man named Jay. Roberta agreed, and so I discretely set up my laptop, and walked away to sit and watch as the day unfolded.
It was a good day for Jay. He was up, showered and sitting at the kitchen table. He had dialog (in a way a three year old would have) with Roberta. They embraced and it was beyond moving. As Terri played and spoke to Jay – in the way you need to speak to Jay- she connected. He was present in the moment. He liked us being there. It was beautiful to see his good day. Roberta shared the moments that were living hell with me privately in an office with glass doors, where we could observe Jay at all times. I learned that Roberta’s daughter, now living back home with them, is also infected and struggling to deal with treatment. I also learned that Roberta’s husband Bob – had also been infected, but recovered well following treatment.
We talked about all the challenges this family faces everyday. I can feel the rage building up inside me as I think of their circumstances and lack of support from the medical community. If I allow myself to dwell on this for any length of time, it does actually become physically nauseating.
Roberta and I stayed in touch, and I showed two of Senator Booker’s aides, the video of Jay. I explained “This is what you can expect to see a lot more of in the coming years if we don’t get this epidemic under control.” I told them about my life. I explained that lyme suicide is a growing concern — especially as more and more of our children are being infected. The words helped, but Jay? Jay had an impact. He is an unforgettable visual of neurological lyme infection. We’ve earned support from Senator Booker and as a team we need to keep doing this. We need to keep pushing it out there. Sadly, that won’t do much to help the current day situation for Roberta, Jay and the rest of the family. I can’t imagine Roberta and Bob losing Jay. Yet, it may be inevitable because there “is no such thing as chronic lyme”.
I’m a weeder. The only weed killer I use: My fingers or the Dawn dish detergent, vinegar and epsom salt concoction; and that only sparingly. I would rather get down on my hands and knees and just pull those suckers right out. I find it therapeutic.
I also love my patio. It provides four seasons of pleasure because even after a snow fall, we can light the chiminea and sled down the back yard. With wine. But springtime — there is work to do. Leaves and other lingering debris that fell after the last fall sweep are clumped in the corners and weeds are growing up through the spaces between the bricks. A wall holds my potted herb plants and flowers. As the herbs go to seed in the end of summer, the wind and birds scatter them. They emerge in the spring through the crevasses by the retaining wall.
Since it was so nice out yesterday, I decided it was patio clean-up day. I put on my garden gloves, hat and went out to work. Dill! Little dill plants sprouted everywhere. And cilantro. HMMMM. Thinking about cooking with them made me smile. I got on my hands and knees and went to plucking herb seedlings and moss out the cracks of my beloved patio, with Mary and Jane, my two herb BMFs (Best Medical Friends) keeping me company.
About a year ago, I either had a horrific relapse or was reinfected by a tick I never saw. Shocker, eh? Regardless, it was bad and I had to resume treatment for the fourth or fifth time. I’ve lost count. Anyway, my LLMD put me on a new experimental protocol. It was working, so it was hell. Check off everything on the list you all know by heart. Leave no patio stone unturned, my friends. The herxheimer spared me NOTHING. My husband and I were lounging on the patio one night and I and said, “I can’t take this anymore. I’m going green.” He didn’t comment.
Back in March, I noticed there were seeds at the bottom of my “medicine” jar. I figured, WTF and threw them in some dirt and plopped them under a grow light. I kept them moist but never got to the part where you check the PH of the soil etc. They fought. They struggled. I was sure I would loose them. The day before was their first time out on the patio alone for a full 24 hours. When I stepped out on the patio to weed I saw a few delicate leaves were turning whitish. Mary and Jane look traumatized. “Oh my god, I’m a horrible grower.” I cursed under my breath. “I thought they were ready!” I had no idea , What was I thinking? They needed serious TLC, so, out came fresh potting soil and a new spacious plastic pot. I can’t lift anything cool like terra cotta. Nor can I afford it. But, alas! I transplanted my little warriors from their starter cups into a patio planter I painted by hand. Once I got my BMFs in their new soil condo, I partook, put on my Beats and went to removing all patio invaders.
I threw diatomaceous earth on the ants — sorry guys. I pulled each weed carefully as to not leave behind any part of the root, or it will just grow back. I whisked up the little pine needles filling all the cracks. It felt good to get cleaned up. Although – you know how epic a challenge that can be most of the time. With every tug I sniffed and played, ‘name that herb’. There were definitely chives out there. My I-pod shuffled to “The Climb” by Miley Cyrus. It was a song I used in a behind-the-scenes video I made in Lake Placid when my daughter won a bronze medal at a regional figure skating competition. Lyme slammed the door on that chapter of my daughter’s life. When the song finished I switched to the Miley playlist. Every song moved me to a different place and time, and emotion. I was never a huge fan, but it suddenly occurred to me: Having had a daughter, Miley’s music was the background to my decade of challenges and illness. So very many–challenges. Every song had some meaning to my life. I find myself listening to her often. Lyme does truly change everything.
Soon I realized the sun was really warming up the day, and being crunched down for so long would not be good. I stood up ever so carefully and made it to the chair. Passing out was not outside the realm of possibility. I sat and stared out for a bit. I think I may have had a little absence seizure while gazing out over the yard surrounded by beautiful trees filled with ticks. That thought jarred me back into reality so I took off my headphones and went inside to escape the heat. I peered back out through the screen door at yard work yet to be done and shuddered. It took me five hours to calm down after I pulled a tick off my stomach two days ago. I couldn’t have a repeat of that scenario. Feeling depleted, I sat down and started eating salty chips and hydrating away the POTS. BWWAHAHAHA.
Seriously, though. Using marijuana has helped me tremendously. The bad days are so much more manageable. I don’t throw up the medicine, I have an appetite, the anxiety melts away, the pain subsides and my tight muscles unravel from their twisted up knots. I’m able to focus, think and write. Most importantly, it enables me to enjoy small things and let go of what I used to miss. The demons turn to daisies and a tiny little bit of chocolate is better than sex. In my personal experience, it also helps my body eliminate “impurities” during a detox bath. If you are a lucky Morgellons symptom sufferer like me, you understand what I mean by that.
I hear skeptics already gasping. How could a mother with a teenage daughter be so, so, irresponsible! Don’t think I made this decision lightly. When I sat her down to tell her my choice to seek assistance from mother nature, I started with, “Desperate times call for desperate measures.” Ironically it was the very next morning mid driving lesson when a wave of nausea washed over me. “Pull over” I said. A minute later I was outside the car bent over vomiting in the grass along a winding country road. After I got back in the car I flipped down the vanity mirror to see mascara running down my cheeks and petechia forming under my eyes from the force of the vomiting. I wiped my cheeks, blew my nose and said, “And this is why I need weed.”
No doubt some people will grimace in disapproval, but I don’t care about being judged anymore. I’ve suffered too much for that. I just do my Liberty Walk.
The Lyme Disease Science and Policy Forum took place at the Rayburn House Office in Washington DC May 19th. I attended. It was awesome and highly disappointing concurrently. Let me immediately clarify that any disappointment had NOTHING to do with the agenda, speakers, coordination efforts, etc. Many thanks and hats off to Bruce Fries from the Lyme Action Network for all his work. Many thanks also to all the wonderful presenters. I couldn’t have been more impressed.
My personal and greatest disappointment was the absence of congressional representatives at the Forum. There was a lack of “suits” I’ll call them; if you don’t mind. Evidently, congress thinks a global epidemic with financial consequences and huge amounts of human suffering is not a priority. There, I said it.
As I sat around looking at a sea of bright green clothing, I reflected on the senate representative meetings I participated in early that day. I doubt that the Chronic Lyme Disease agenda was ever even a small blip on their legislative radar. Congressional representatives didn’t attend the forum, because most did not know the gravity of the situation before our “chats”. However we do have a global epidemic and I think we got their attention.
During meetings with congressional staff, several of us representing the Lyme community shared brief personal stories as a prelude to Bruce’s presentation of facts. What facts? Too many to explain here, but in a nutshell: Facts about how the CDC, NIH and lack of Gov’t Agency oversight have been at the core of the epidemic mis-management. Following the big “reveals”, we transitioned into requests for a portion of the 1.1 billion dollars the Whitehouse earmarked for the Zika virus and more effective congressional oversight of the the CDC. We pleaded the case for money to fund research for an accurate diagnostic and effective therapeutic. We shared the numbers…. Each meeting was a half hour. It is impossible to explain this crisis in anything less than a full day seminar– or five, but we did the best we were able. I think the looks on our faces probably said the most though. While we were all composed, well dressed and coiffed and at our Lyme best, most of us were in the same unmistakable place…
“I’m expending mega watts of energy to get through this day because it is of dire import. But when I wake up tomorrow and three more days after that, I will be paying dearly for the effort.”
You can’t hide suffering in anyones’ eyes. I met so many amazing people at this meeting. We share a common journey and fiery spirit that enables us to endure such horror and still find a way to fight like warriors to make it stop happening to our children. The rate of suicide is evidence of what our future will be if we don’t start addressing both the physical and mental illness epidemic that is created by the late stage lyme infection rate that is rising like a weed out of the ground in spring (or a viagra user – snort.)
As the Forum progressed I was internally assessing the value of this new website and crowd funding effort. (“Our Lyme Nation” and United We Heal) Dr. Ronald Stram, Center for Integrative Medicine, was wrapping up and spoke the truest words. I’m paraphrasing, but the gist of it was, “We as people are going to have to address this at a grass roots level.” To me that sounded like perhaps the “Our Lyme Nation” movement is on the right track. And it is a movement.
Aside from getting our unified voices heard, getting an accurate diagnostic to market, and funding an critical charity for continued research and human aide, we are creating a paradigm shift. Our grass roots effort will prove that united people have the power to solve real problems without intervention of governments or reliance on venture capital.
I should point out that there were two presentations from Lyme diagnostic firms at the Forum. We heard two great speakers from Translational Genomics Research Institute and Ceres Nanosciences. They are making wonderful progress toward a diagnostic. However, that should not preclude getting funding to all entities that can deliver on the accurate diagnostic mission.
This is where United We Heal comes in. Flourish Partners is a consultant firm with brilliant scientists that work outside the US. They are not a life-science mega-firm with unlimited funding. What they do have is groundbreaking science not currently being attempted by anyone else and they are confident they will be able to bring an accurate diagnostic to the marketplace within 12- 18 months – provided they obtain needed funding. The best part, is the once they are successful, profits will fund a charity for research and human aide. Think of the good that can be done. Just because they are outside the US doesn’t mean that we can’t fund their efforts. There is too much at risk NOT to.
“Unite We Heal” & “Together We Flourish” This is the Lyme Revolution.