Some of these posts are going to be incredibly self-indulgent. Talking about my health journey, my pain, my ...., my .... Part of it is, I think it will be cathartic for me. Plus I've been in such scary place with pain, that it is helpful writing about it and sharing. Maybe it helps me psychologically feel less scared, less alone. Maybe it gives me the illusion that I'm figuring things out.
A bit of my health history, and how I contextualize my health situation:
Pre-2005 Since I was a child, I'd had a variety of low level symptoms and weird things, but I could never quite put my finger on what was up. I was often times feeling uncomfortable or on edge inside my body. I also had quite a bit of insomnia, anxiety, lymph node discomfort, general body discomfort, vision headaches, very rarely sharp explosive pain in back of head, blurred vision issues, periods of manic energy and then total lethargy, concentration issues. These symptoms would all wax and wane in similar sequences together. At the time I chalked it up to my body's genetics and my particular personality and attempted to dismiss some of these things as "normal." Many of these symptoms I could mask, so no one around me had any idea that I was having any issues. Heck, I couldn't even describe most of those symptoms at the time, they were so vague and ebbed and flowed into each other. And even if the symptoms did worry me I was able to function at high levels, play a lot of sports, do high level academics, etc.
I wasn't clairvoyant, but as the years dragged on I had an inkling that something was really wrong. It was like waiting for the other shoe to drop. I had no idea what form or shape it would take, but a sense of dread and fear began to permeate my youth. The symptoms seemed to be creeping on me, gradually becoming stronger, more noticeable to me.
I'd always pushed myself intellectually and physically, I prided myself on that. I loved working hard and seeing what my body and mind were capable of, how much I could improve at things if I set my mind to it. I was blessed with a lot of opportunities, and I wasn't going to let them go to waste, regardless of what underlying thing was going on with my body.
But once I got to college, I felt like I'd lost all my natural energy. I was losing my ability to pursue projects, maintain concentration, execute critical thinking like I once had been able to. This wasn't normal for an 18-19 year old. A deep exhaustion settled over my body. I started self medicating by drinking a lot of coffee, this would temporarily mask my issues but would aggravate certain things like my anxiety and ability to sleep. And obviously, with a thing like coffee, you are always needing to up the ante, increase dosage to chase those elusive energy levels.
Sometimes I'd try to chalk up my issues to the stress of life, stress of college, etc. I hoped and wished stress were the be all end all, it seemed to affect a lot of people and I secretly hoped it was my main issue. Or maybe I was depressed or had underlying anxiety issues? except, I tended to have a very happy go lucky disposition, but my health was beginning to darken the clouds, for sure.
Late 2005- At 23 years old, the other shoe finally drops. It dropped pretty damn far and hard.
I fall ill with what seems to be the flu. Except this is no normal flu, my body seems to endlessly spiral into a hole of fatigue and pain, and I can't recover. I'm smothered by fatigue and pain. The fatigue seeps down to my bones. I had never ever been this tired. Symptoms I'd previously described from my youth all blow up in severity (which is what leads me to believe I first contracted my underlying disease in childhood, basically the disease just lurked in the background for years).
The pain in the back of my head and lymph nodes behind my ears is terrible and constant. I can't really even describe what was going on to doctors, my pain, fatigue, symptoms are all so overwhelming, and hard to pin down, they are constantly shifting like light in a prism.
2006- After many many many months of searching and testing in vain, the doctors (saw too many to count) eventually come to the conclusion that I had suffered mono and was now labeled with Chronic Fatigue Syndrome/Post Viral Fatigue. In hindsight, I now realize/theorize that mononucleosis was a trigger. It unleashed the underlying condition I'd had since I was a child, and if mono hadn't been the trigger, eventually some other trigger event would have taken place. Like I alluded to, I feel like my body's health had been slowly decaying over the years, the foundation was rotting, and it was being primed for a cataclysmic event. Mono was not the ultimate cause of my current situation, it was merely the surface trigger, and for many years we went with the wrong assumption that mono/chronic ebv was at the root of my issues.
I ran into further complications, as one of the tests that was run in an effort to narrow down my diagnosis was a spinal tap. It ended up triggering even worse symptoms, burning neuropathy and burning head pain. I spent 6-12 months recovering from this pain, purely trying to survive the pain hour by hour, day by day. It was the hardest period of my life (until now!).
2009- Having exhausted myself seeing doctors and never getting any progress, my family and I are recommended a doctor that one of our family friends (also a doctor) had met at a conference. Grudgingly I go see this doctor (I've lost all faith at this point of true help for my condition). This doctor specializes in research, namely looking at pathogenic etiology of chronic health issues like fibromyalgia and chronic fatigue. After some pcr dna lab testing, I'm given the first clue as to what might be going on: the lab work indicates I have a protozoa called protomyxzoa rheumatica (it had no name at the time). Obviously I'm skeptical of this information but am also excited. This is the only lead I've had in 3 freakin' years! I also have no idea to what degree this particular thing could be causing symptoms. And why, after seeing a billion other doctors, has no one found this thing?!
But hope reigns eternal, and at this point after 3 years of chronic pain/being bedridden I'm willing to try things that are within the realm of logic, even if they go against conventional wisdom. This doctor actually has a treatment: antibiotics! My mother and I had long wondered whether lyme or a lyme like illness had been behind my health issues. My symptom make-up certainly fit the bill, and the results of my Western Blot were indicative of lyme, but not conclusive. A naturopath I'd seen early on thought I should explore and retest for lyme, but the test is expensive, so I ran this idea by my doctors and they all nixed the possibility of lyme. I did not pursue further lyme testing. I also assumed lyme had an immediate onset after exposure, plus I assumed all lyme cases present with the bulls-eye rash. Given my lack of exposure at 23 to ticks, lack of rash, lack of arthritic symptoms, I was also skeptical of lyme. But discounting lyme, and other infections was a bit of a mistake on my part, as with many of these pathogens, lyme can lay dormant or lowly symptomatic for years. And lyme, and its variety of strains, do not always present with the classic bulls-eye rash, and certain strains of lyme present not with arthritic symptoms, but manifest with more neurological symptoms like the ones I experience. I did not know any of this. Nor could I research any of this as I was too sick.
Anyhow, this new doctor puts me on an antibiotic, and lo and behold I end up herxing (herxheimer is a die off reaction, where after taking an antimicrobial one has a flare-up of their usual symptoms, and sometimes new symptoms. Can be hard to distinguish from an allergic reaction. It's hard to say exactly if a herxheimer is a reaction to toxin release from dying pathogen or due to increased immune response. Or both.). Herxing is often a good indication that there is an underlying chronic bacterial/protozoal pathogen.
I make improvements, but I have to introduce the antibiotic slowly due to the herxing. Slowly and gradually over the period of about 6-12 months I see improvements, I'm no longer bedridden, constantly needing to ice the back of my head. I still have my core symptoms but they are less acute. This doctor also recommends a particular diet, mostly plant based, low fat, which turns out to be very helpful. I get a reprieve from constant smothering pain and tomblike fatigue. So while still always in pain, body discomfort, I have more energy to think of other things like... DRAWING!
2009-2014 I continue on this mono-therapy. I survive, and make do with what health I have, but it is very limiting. I still can't exercise without engendering massive flare-ups in my pain and symptoms. Going out and hanging with friends is still very hard. I concentrate on drawing when I can, it is hard, it takes everything I have. I can draw fun simple things, but the more complex, longer projects are hard to plan and execute. The best way I can liken it is that my body always feels uncomfortable to some degree, and that my mind always feels like it's on a ship deck in a roiling sea, slipping and sliding about and never able to find its footing.
I still have to expend a lot of energy to compartmentalize pain and fatigue. Usually mornings are when I have some energy, afternoons I'm shot, but the pain and discomfort are always there to some degree. There is a wax wane to my symptoms that I can't ever put my finger on, but there certainly is some sort of a pattern to how the symptoms increase and decrease in intensity.
I don't know what other treatments there are for this, but I find a certain rhythm to life. A simple rhythm. I suffer, but nothing like before. I make peace with my situation.
2014- At this point I'm starting to burn out with my status quo. I can't put in the hours and focus to improve and develop my drawing. If there is one thing I value, it's being able to grow, having the ability to push one's limits. But I'm also getting tired of the pain and being so trapped in and by my body.
A couple things happen. I finally learn the name of the illness I've been diagnosed with (the organism hadn't been named until this point). Armed with the name, protomyxzoa rheumatica, I start researching and coming across other patients online. I learn that there is a much wider array of therapies available, and that mono-therapy with one abx it is usually not possible to recover, especially in cases as severe as my own. What I come to understand is the abx I was on brought me along, but I had plateaued and further treatment would be necessary to improve. Often times protomyxzoa is not the only infection at work, therefore considering lyme/coinfections is not a bad idea, especially given my response to abx and my previous WB testing.
One problem is that the testing for lyme/coinfections is not very good. In fact it is ridiculously weak and inaccurate and the big kicker is that these tests are mistakenly used to offer a definitive negative diagnosis to patients with high likelihood of these diseases. There are a wide variety of strains for borrelia, bartonella, babesia, and a whole host of other bacteria and viruses that could be working in conjunction with this protozoa. Our testing does not test for a wide variety of these strains, we cast a small net, and since it is antibody based testing, well that is very iffy given the fact that borrelia is expert at hiding itself from the immune system. I presume some of the coinfections are hard to detect as well, but I'm not as well versed on their ability to hide from the immune system. I think it is safe to assume it could play a role and thus devalues the antibody tests. We have much to learn in the realm of these infections, we are scratching the surface, and it will take time before we can begin to understand which strains are actually present, which strains are pathogenic, and then untangle the facts to understand which particular infection is causing specific symptoms and chronic illness.
This is usually why a broad spectrum antimicrobial approach is best in treatments for these chronic infectious diseases, you need to try and cover your bases. An important question is why some people can harbor these infections and not get sick, while in other people it triggers unrelenting chronic illness. There is a good chance that some immune system issues are at play, and possibly with the right mix and amount of infections the immune system hits an inflection point where it can no longer keep a lid on things. We still don't know a lot of the mechanics behind what is going on in these chronic illnesses, but places like Stanford are pursuing and asking the right questions in my opinion (http://med.stanford.edu/chronicfatiguesyndrome.html).
But I'll tell you one thing, I'm not going to wait around decades to have the research tell me what is going on to confirm things. I've lost a decade already to this health issue, and I have a basic ballpark understanding as to what is going on in my body. Can I tell you the exact infections at play and which ones are causing what symptoms? Nope. But I can tell you antimicrobial therapy is the only thing that has ever helped improve my situation. It's tough and difficult therapy for me, but given the pain I've gone through, and the rocky situation I'm currently in from the crash, it's still completely worth it and I regret nothing. I fully plan on continuing antimicrobial treatments (albeit in a very conservative manner) plus supportive therapies.
Back to my story. Realizing I'm leaving health on the table, and desiring to pursue a grander treatment strategy, I go talk to my doctor, and he adds an anti-malarial medication. It is very effective, but my big problem is the nature of my herxing. It is constant. I introduce the med slowly, and over months, while I'm still exhausted and unable to work, I can tell it is reducing the swelling and pain in my lymph nodes over time. But the symptoms it flares up, especially the fatigue and increased pain becomes exhausting. There is a particular symptom that is very hard, where you feel wide awake but completely exhausted, and yet you can't sleep. I've read enough about these infections to find out that there is phrase for this, as it is a common enough symptom with these illnesses: wired-tired. Describes it perfectly.
I also start introducing a variety of detox methods to try and control and manage die off, and also some herbal antimicrobials.
But eventually I burn out, and in 2015 I start on a therapy that is only dosed twice weekly, but very effective and powerful. I finally start being able to leave the house more, but the herxing still messes up my concentration and focus. The herxing also gives my body a manic energy, I feel like a coke bottle that's been shaken and ready to explode. My sleep is messed up too. But wow, I'm amazed that my lymph nodes in behind/under my ears are so much better from a year ago, still painful, but so much reduced in swelling. I believe that the size of swelling in my lymph nodes is indicative of the toxin/pathogen load, and that over time, as the pathogen burden is reduced through antimicrobials, the amount of swelling in the lymph nodes also decreases. To me, my lymph nodes are a marker that indicate the level of the pathogen burden. It takes many months to see improvements, but they happen slowly through persistent treatment.
By the summer, confident I'm feeling better, getting closer to remission, and more impatient than ever to see the end of this thing, these 10 years of hell, of being trapped in my body... I see another doctor. I tend to agree with his philosophy, to hit these pathogens in the body's various systems you need a wide array of meds, plus this way you can cover your bases and hit other unknown pathogens that may be of issue. He puts me on more aggressive treatments, multiple abx and multiple herbs. I have this therapy vetted by multiple doctors who agree it is a good treatment, thorough, and that my health history warrants these treatments, as all indications point to a systemic infectious disease cause for my illness. It feels good to be coming across multiple doctors finally giving credence to my issues, recognizing there is something going on here beyond psycho-somatic or post viral issues. There is a serious active infection(s) that somehow needs to be gotten under control.
In fact, meeting these different doctors who validated my experience, well it made me want to cry. I finally felt like I was getting help from multiple doctors who believed in my case and my experience, and who understand the depth of how disabled and debilitated I've been from this thing. I love doctors, but most mainstream doctors can't get past the fact that I look so healthy, they can't understand that something can be crushing my life with constant pain and fatigue if it doesn't show up on standard tests and I look so good (thank you very much ;). The patient experience is devalued in favor of lab work they don't even always understand! I don't fault them for it, they don't have time to stay up on all these weird ass chronic illness infections plus the research is still developing, not to mention the unfortunate controversies surrounding lyme/coinfections. This is why the psychological component gets examined and usually the doctors will run with that, it is the easiest answer to a complicated situation. As I like to say, my psychology has been affected by my 10 years of pain and fatigue, but it is not the root cause of my issues.
The doctors whom I do have a bit more of an issue with are infectious disease doctors. I've met some wonderful ones, but on average, they are extremely dogmatic in their approach to cases like mine. Chronic lyme, chronic infectious disease syndrome? total bullshit in their eyes. They have a term for patients like me: crazy. That's it. Frankly, if I'd become a doctor, I have no doubt that I'd look at a case like mine and think the exact same thing. I'd probably just feel sorry for this young, but healthy looking man who must have serious psychological issues that he keeps coming to bug doctors proclaiming he has these mysterious and hard to identify infections.
But for me, as with many similar patients to me, there are too many things pointing to an underlying pathogen as a cause for our issues. My biggest problem with the infectious disease doctors is the amount of disrespect they show to patients like me. They are completely unwilling to look and think outside the current status quo, they dismiss us out of hand, even as the literature is growing legitimizing cases like my own. Sadly, within medicine, changes can take a generation or two, even after the science has proven a new paradigm. Also, there are the mechanics of $ at play, and this can be a huge factor in how medicine is practiced, how resources are distributed, and what access patients can get to medicine. If our infections are legitimized, then we will have to open the floodgates to a hell of a lot of longterm antibiotic use. This is a dangerous proposition, and maybe this is part of the fear for infectious disease doctors. But that is no excuse to deny the existence of our cases and the strong possibility that multi-systemic infections are at the core of our issues. And if their main concern is the overuse of antibiotics I'd recommend they call for a ban of the sale of abx for use in our livestock. 80% of abx are sold to that industry and many issues of resistance arise from their use in this context. Not to mention compounding factors like influential infectious disease doctors and their ties to insurance companies and IP issues that end up muddying the waters as well. It gets rather convoluted, but agendas are not as always geared towards the patient and public health as one might initially suppose and hope.
Back to my story. For a while, I'm doing ok on these new aggressive therapies. I mean, I'm herxing like crazy, pain in head, lymph nodes, fatigue, insomnia, but I am surviving. The doctor tells me to push through, but then, after about a month, I start feeling like my body has gone haywire. The pain in my head takes on the nature of a constant explosion. I'm getting burning neuropathy, and just wish I could jump out of my body. I have to stop all therapy as this is a hell I cannot endure.
But there is a problem. After a normal herx, the pain subsides within a few days-week after stopping therapy. Here, I have unleashed something so deep, nasty, unrelenting. So this is where I'm at. I've been off all treatments for 4 and a half months. I have been inching back to my baseline, but the pain has been hell. Very similar to what I went through after the spinal tap. It is the most draining pain in the world for me, it grips me, in the back of the head, it is a burning that puts my whole body on edge and holds me hostage. This kind of pain really sucks, it reduces me to a child, scared and impotent, seeking solace and refuge anywhere I can, because I cannot find it within my body. A few months ago, the pain was 10 times worse, the burning neuropathy was killing me and I couldn't sleep. But I'm still struggling to survive the days, some days the burning gripping pain lets go, and I can breathe and think of other things. It is going to be like this for a while, the pain waxes and wanes, and eventually it will dissipate into a more manageable kind of pain. But trying any antimicrobial, even baby doses of things I'd handled fine before just unleashes things even worse. It is frustrating and scary to be off meds for so long.
But I have to listen to my body. It is giving me no other options right now. Psychologically, physically, mentally, pain is punishing. And this pain, is a kind of end of the world pain, it is in my head, and it seizes me so hard and it won't let go. It really does hold me hostage and when it lasts days on end it feels endless and hopeless. I could never have believed such pain existed. I know I will overcome it, I will be able to resume treatments. But it is a long game, I'm having to be patient, smart, and careful. But I have to admit, I am very scared. The pain puts me in a place of great fear and exhaustion. Sometimes I don't know how I'm going to survive it. It is completely destabilizing and makes my body feel out of control and unmanageable.
The new doctor I'm seeing, whom I just saw the other day, has said some patients do crash like I did. That's what my original doc who dx'd the protozoa also said. They both say the protozoal infections can be some of the most brutal, in terms of pain and herxing, especially if there are multiple infections involved. Part of me is really angry. In hindsight, this new doctor I was seeing really pushed me to ramp up on too many meds too quickly, and he put a lot of pressure on me in spite of the concerns that I voiced. And yet, I'm even more angry at myself for not having been more careful, not having trusted my gut, I got carried away with the illusion that maybe I was in the final stretch run and I could handle such treatment to finish off this thing. Basically, I got impatient (after 10 years of hell who wouldn't be!), and I am most truly paying the price with this epic crash. But I had no idea this kind of setback was even possible, so I have to rein in my frustrations, and focus my energies on trying to regain my baseline and surviving this struggle. But I realize that I always have to trust myself, be smart, be careful, go slow. In the end, the ideal situation would be to be find a doctor who has at least 10 years experience treating cases like my own.
Sometimes I wish I had more options for pain relief. But given the nature of my pain, I know that pain killers are a very dangerous path, and that would open a pandora's box that I cannot deal with. I cannot afford to add another problem to my health woes, and my intuition is that if I get on the pain killer bandwagon, I'm going to be in big trouble. They might be effective temporarily, but eventually their effectiveness will wane and I will be left with a serious dependency issue. So I have to manage my pain as best I can. I do a lot of heat therapy, including baths, dry sauna. For some reason these things give me a bit of relief from my body.
The other psychologically difficult thing is worrying about not being on treatments for so long. I worry about the underlying illness progressing and I know my doctors worry about this too. Especially given the fact that there is a strong possibility these sorts of infections play a role in a multitude of neuro-degenerative diseases. That's what makes me scared and impatient, the worry of not treating and being held back by my body eats away at me. Ultimately, I have to look at the cost/benefit, and right now, the cost of not treating is not ideal but it is my only option, as the benefit of stabilizing my body is far superior to resuming treatments and spiraling my body back into a hole of pain I cannot manage.
I'm so grateful to have my family. Without them I would be toast. I am loved, and have emotional, financial, loving support. I always prided myself on trying to be independent, and it has been very humbling to have to need and ask for so much help. To admit one's weakness is a difficult thing. To admit one's fears, how scared one is, that is also difficult, and my family kindly listens and helps me through my tribulations. I wish I could be doing more for my family, and not having to suck up their emotional and financial resources. At this stage in my life, I should be the one helping my parents, not the other way around.
I do believe I can get better. Obviously I sent my body into a tailspin, and I need to recover and then resume treatments and try to go for incremental improvements. There is no fast way around this for me. I wish I had clearer answers, a clearer treatment path. When the pain is gripping for days, weeks on end, I start getting so scared, unrelenting pain begins to break me down. And on the days where that pain has tempered, I feel stronger, more hopeful, and I feel a bit more like things aren't spinning out of control. I know I will keep on my journey of healing. Do I know the exact path? do I know the exact endgame? no and no. But I know I can improve and I have to focus on that. I have improved things via antimicrobials but have had to go slowly and carefully, so hopefully I can resume that tact and keep recovering my health slowly.
I never thought this would be my path. But in a sad way, getting better from this thing has become my life's work. I hope I can learn from it, and I hope I can keep finding the light and find ways to transcend this thing.
But in the difficult moments, and when I'm in pain, I repeat a phrase a buddy of mine suggested: "May God grant me the strength to make it through the day."
I like it.