Monday, January 18, 2016

Health History

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 (

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.

Thursday, January 07, 2016

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!