Health Update (Lyme, Coinfections, MSIDS)

Happy new year guys! I’m so sorry I’ve been so absent. As some of you know, I’ve been dealing with some really hard, nebulous health issues and trying to pursue treatments.

This is a hard thing to talk about, but I figure it is good for me to talk about and share, to own my experience if you will. I also feel obliged to add my experience and voice to the fray and speak out.

I’ve been very limited/debilitated/smothered with chronic pain and fatigue for 10 years (along with a variety of other symptoms, chronic lymph node pain behind ears, constant back of head pain, debilitating concentration impairment, exercise intolerance, vision issues, insomnia due to pain issues, burning neuropathy blah blah blah you get the idea), but only in the last year did I really learn more about my core issues and what treatments could possibly help me regain some quality of life.

Basically I’m dealing with lyme/coinfections issues, I prefer the term MSIDS (multi-systemic infectious disease syndrome) and unfortunately I’m very sensitive to treatments. This makes treatment and getting better very hard, and nonlinear. I’ve had a lot of ups and downs. But I have to keep pursuing treatments, trying to find what works, as my status quo is just untenable in terms of pain and quality of life. 

I believe I've had this underlying condition since I was 9-10 years old (based on low level symptoms dating back to this time), but the deep debilitating phase of my illness was triggered 10 years ago when I caught mononucleosis. It triggered a deep downward spiral of my health. My theory is that many of us harbor pathogens, including borrelia and other viruses and bacteria, but we can remain asymptomatic, our immune systems keep these things in check. But for some reason, for certain individuals with the right combo of issues, including the right pathogen or life triggers, and the right immune system and genetic and micro biome terrain, these illnesses can spiral into chronic non-self limiting life altering maladies.

I had improved my health from bedridden to lowly functional years ago by discovering a dr who diagnosed me with an underlying protozoal infection. He put me on treatments, but as I’ve learned and come to understand via research, the simple therapy I was on is not enough for these multi-systemic infections (even though they did help me improve) and I have to keep trying to push the envelope and pursuing a grander treatment strategy. I am still constantly weighed down by symptoms, albeit not quite as acutely as the first years before I had any therapy, but I am still living life like a ghost, watching life flitter by while I'm trapped by constant pain and fatigue that subsume my quality of life. Accomplishing even little tasks can be monumentally hard. It is frustrating beyond belief. Simple things, like reading books, are virtually impossible for me. It's like climbing a mountain trying to get my mind to focus, to dig for energy to do things, like go out and get groceries, gas, etc.

My little drawings were a way to transcend my health limitations, but at a certain point I got frustrated at how much my pain and health were holding me back in terms of pushing my creative abilities, not to mention completely impairing my ability to lead a relatively normal decent quality of life “life.”

I miss drawing, and sharing my stuff with everyone. But my health is my #1 goal, and trying to get better is a full time job for me. It is grueling, and tough, each day is a challenge.

I have no idea on timeframes, and not only has this last year of new treatments been punishing physically, but mentally it is taking everything I’ve got. I am uncertain of the path and where things will lead, but I am doing everything I can to get better. It could take a very long time. I’m lucky to have family support, but sadly, with these chronic diseases, there are so many questions (and controversies) and no tried and true formula. You have to muddle along and figure out what things work for you. I recently went through a massive setback with a new set of (more aggressive) treatments, it’s been frightening and a bit crushing. The treatments made my body and pain spiral out of control. I’m used to chronic pain, and while difficult, I manage to compartmentalize and survive it. But this pain was off the charts, my head constantly felt like it was exploding and on fire for several months straight, I could barely sleep and think straight. And burning neuropathy all over my body… the last thing I ever want to do is kill myself, but the pain was so bad, so constant, so smothering that suicide kept bouncing around my mind. If there’d been a gun in the house I would’ve taken that exit strategy with joy and complete relief.

It’s been scary because I’ve had to suspend all treatments for many months in an effort to re-stabilize my body. Not being on treatments is scary, they have helped push me along, but right now my body is so sensitive and fragile that even tiny doses of treatments I tolerated before are sending my body into a tailspin. So the only thing I can do is take a break, let my body recover, and try to get back to a baseline where I feel strong and stable enough to reintroduce light treatment therapy (herbals initially because I can carefully titrate dosage, then I can add in further therapies). The damnedest thing is, the antimicrobials flare my symptoms (what is assumed to be and I suspect is a strong herxheimer effect), but they do so in an extreme unrelenting way. I try to detox as much as possible, but it is still very tough. So much of this stuff sounds like such bullshit, the detox especially, I would've thought that was just hippie mumbo jumbo pseudoscience. Well, I can tell you I've sort of gone through the looking glass on a lot of this stuff. The science is sketchy in a lot of areas, but based on my experiences and consistent reactions to wide array of antimicrobials (including both pharma abx and herbal abx), I've come to understand that herxheimers are for real and detox is for real (although some methods are bullshit no doubt).

I’ll keep fighting and trying to figure things out, I have improved certain symptoms in the last year, but this disease is hard to root out, probably for multiple reasons: long duration of illness, severity of illness, plus likely immune system issues. Basically I have to go very slowly and carefully with treatments and hope that that can get the job done.

It is a long desert of pain, illness, being constantly smothered by symptoms, and it feels endless. Sometimes hopeless. But I hold on to hope and I know I have improved symptoms, but it takes time, persistence, and great faith. Obviously I have no idea how things will shake out, but I'm confident I can get better. But I couldn't wish this on my worst enemy. It is unreal that such a thing exists, I could have never imagined such a weird cruel illness. Not only is my body physically impaired, but so is my mind, fully compromised in terms of concentration, focus, and ability to execute at the levels I'm capable of. It is terrible to say, but I wish I could have closure, either finish me off or let me recover. Instead I'm in this terrible perpetual limbo. I wish I could've been dealing with more conventional illnesses which give you more cut and dry treatment practices, but alas, that isn't the way it is. 

I've had to invest significant time (once I was a little better and could actually research a little) to understanding these diseases and my particular health situation. I've come to better understand why my diagnosis was missed, and while I can't say with pinpoint accuracy exactly what is going on with my body, why treatments are so difficult (in spite of much detoxing etc) I can understand it relatively speaking and know I'm in the right ballpark in terms of comprehending my situation. I have also learned to trust myself and my body and to be proactive in my healthcare. Too often I have trusted medical professionals who ended up belittling and disrespecting me, my intelligence, my experience, and I was left to fend for myself with no help. One doctor kept telling me that my lymph nodes behind/under my ears weren't a problem because there were no lymph nodes there! he kept telling me it was a bone issue. And yet the pain always waxed and wane in unison in both my left and right lymph nodes (to me a huge indication of some infectious issue).

That said, I love the medical profession, I have a ton of respect for it and the people in it. Most doctors work their asses off, doing their absolute best with their limited time and resources to help their patient population. It is hard, grueling work and I'm grateful they are doing it. But that's what made my experiences so jarring, to be disrespected by people I admire and respect. People whose critical thinking skills tend to be very strong, and yet many would not listen or work with me, even when I had solid facts backing me up. They could not or would not listen to me because my experience did not match a certain factory style of medicine that they adhered to, hence my experience was fully dismissed. Sadly, as I've learned, when it comes to these infections, this reaction is par for the course, and nowhere is lyme/coinfections denial stronger than in the infectious disease doctor community (economics, insurance companies, IP issues, and politics at play here, too long a story!).

But when it comes to lyme, suffice it to say that the mainstream medical field is 20 years behind what is actually going on at ground level. These are hard illnesses to talk about, because many will blow you off as being psychologically ill and nothing more, or insinuate you are lazy and unmotivated and a malingerer. I mean, I look really healthy (thank goodness) but my body has been a torture chamber for 10 years. Please forgive my lack of humility, but I have always been a highly driven person, and have always been very athletic and loved pushing myself, both intellectually and physically. That’s why those insinuations hurt, because I am not a lazy person, I am a fighter, and I am busting my ass to transcend my body and its issues. If I could mentally will my way out of this I would. Trust me, I've tried. I try to focus and be as positive as I can, fill my mind with hope, inspiration, and faith. Frankly I consider it an amazing accomplishment and testament to my will to recover that I've survived these 10 years hell. I'm still fighting. 

It's weird that lyme and coinfections are such a 3rd rail for doctors. Mentioning lyme at a doctor's appointment is one of the worst things you can do. It's better to admit to being a satan worshipping baby eater, you'll get more compassion and understanding than if you ask about lyme or even ask to get tested for lyme. Truly inscrutable, but the core issue at the heart of lyme denial is economics. The other travesty with these infections is the horrendous testing. There are a variety of borrelia strains, not to mention bartonella and babesia, and yet our testing (antibody based, lyme is expert at hiding from the immune system so this methodology can present some flaws) is only looking at a few strains. And even with the strains they are testing for the accuracy is beyond pitiful. A lot of these issues get complicated, but if you are ever curious the science journalist Pamela Weintraub wrote a great book called Cure Unknown: The Lyme Epidemic. 

I think western medicine sometimes gets stuck in the idea that we figured out bacterial infections and all there is to them (and the testing) in the 20th century. I believe that is plainly wrong, as it is looking like a whole new host of "stealth" pathogens including borrelia, bartonella, babesia, protozoa will end up proving significant players in many chronic illnesses (like cfs, fibromyalgia). I especially wouldn't be surprised if some of these infections play a role or complicating factor in a large subset of neuro-degenerative disease cases. Eventually the science will tell us either way, but the science and foundations of research are still being built.

I do believe it is good for me to speak out, regardless whether people refuse to believe or accept my experience (as many doctors will or have), or judge me. At this point in my life I feel more comfortable in getting my experience out there and adding to the (sadly) growing catalogue of those just like me: inscrutable chronic illness, everything pointing to infectious disease syndrome, but completely neglected and denied by most mainstream medicine. In this last year I found confirmation via multiple doctors for my dx, which is reassuring somewhat, as my disillusion and frustrations with the medical field had been growing for a long time. Many docs threw my tests and patient experience out the window because it didn’t fit within their framework of thinking. I guess I can’t really fault them, when you hear hoofbeats you think of horses, not a zebra. I'm not even a zebra, more of a unicorn. Go figure ;)

I live through this experience knowing I will make something of it. I don't believe in things happening for a reason, but I do believe in taking life's worst experiences and trying to make something out of them. The human record is full of suffering, but also full of people transcending suffering or creating something out of suffering or learning and growing from it. While the path is not easy, I have many things to be grateful for and I remember those things daily. This experience has humanized me, humbled me, sometimes humiliated me, and (I hope) opened my mind to different horizons of human experience and ways of thinking and living.

Love to you all, hope you are all doing well! thoughts and prayers are always appreciated!