Here’s Looking At You, Kit

© a rainbow at night

This will not be a lighthearted post, but it has been a long time coming, as many of you have probably already suspected. The ole “I’m leaving this blog behind” announcement that’s been a couple years in the making, but of which I’ve only been certain I needed to make within the past six months or so.

For years, everyone has watched me say things like, I’ll post in this way, or that new way, or I’ll try this… But even though I have dozens of half-finished blurbs in my personal writing app (31 to be exact), most of what I’ve scribbled will never make it to the public eye. And I’m okay with that.

I imagined when I got back to a place where I wasn’t trapped in an isolated hell of cognitive confusion and anxiety, I would naturally gravitate back here, to the writing outlet and the people and the support groups that used to keep me going. Then I thought, maybe if I just quelled the desire to explain so much of my thought process, things might flow more easily to the page, while also being more digestible for my readers. Turns out, no, and furthermore, I love explaining my thought processes, and trying to make the breadth of my worldview smaller for some perceived idea of what my “audience” might be able to tolerate, is just another example of how I chronically shrink all that I am and all that I feel so as not to disturb the state of others.

When it comes down to it, as far as I can tell, I really have said everything I needed to say here. It is simply time to close this chapter.

Besides, the ultimate goal of any supportive community is that the members are supported so earnestly and wholly that they cease to require that facet of the community at all. It leaves room for those who still do, and makes room for those who will soon join.

Surely my own aging has a lot to do with things, too. The generation of people with myalgic encephalomyelitis who came before me are now slowly dying out, if not mostly already gone. And my own generation of people with M.E. are becoming less and less well-known; soon we’ll be entering into the years of early deaths, ourselves. Maybe no one will remember that we existed. Maybe no one will have learned from our plight or remember how hard we fought to help each other and society at large stay aware of the truth, believing wholeheartedly that to cure a disease you have to know which damned disease you’re actually studying. Maybe we will never get the help that we have always deserved from those with the most ability to give it, especially as the waters encompassing the ever-changing categorization of “chronic fatigue syndrome” become murkier year-by-year; especially as the knowledge of which disease M.E. actually is fades into history along with us. Because let’s face it:

There’s a reason people with myalgic encephalomyelitis die 25-30 years earlier than the rest of society, even if medicine doesn’t (or claims not to) understand why that is. People labeled with CFS probably do, too, because they cease to ever get diagnosed with whichever disease they actually had. And don’t even get me started on all the terminal diseases untreated Lyme bacteria will morph into! But my point is: For people like me, even if they cured this tomorrow, it would not undo decades of living with systemic disease. And a cure certainly would not save those who are already on their deathbeds.

But aging affects us all, and even as I aim to become more whole in spirit and healed in soul, it is the natural course of things for bodies to gradually lose functioning, and for bodies with diseases to lose it faster. It becomes more and more obvious each and every year that I am blessed to have, with each new diagnosis I acquire, that is not my job nor is it natural for me to keep going at the same pace I did when I first fell ill. Especially, especially at the expense of living this life that I fought like hell to still have. Most of you have no idea just how much, but read on to find out.

Combined with this realization is the trust I now have that the generations following us will make use of the information we’ve painstakingly provided for them, just as we made use of what our M.E. veterans left for us. I have more trust that the invention of social media has done something I could’ve never imagined when I first got sick, which is bring together all the people that the CDC and similar government agencies worldwide tried to silence, and give them a connected voice with which to Act Up during the years they are able. You can muddy the waters and call it whatever you want, but the fact remains that many people are going to get M.E. in the future, and many more are going to be put in the category of CFS or “ME/CFS.” And those people are going to talk, and demand to be studied.

To me, it’s simply a statistical improbability that the invention of the internet, the relative success of social media, and the tenacity of today’s youth should prevent the truth of things from ever becoming known, or prevent that cure. It might be too late for us but it will not be too late for those who follow, as long as those who are called to fight, answer that call. I answered that call when it was my time, and I need to look back at that and feel proud of what I’ve done and how much I contributed, instead of feeling I haven’t done enough.

I used to think there was something wrong with me for wanting to let this go. I used to look at those still holding on to the hopelessness and the anger and the dissatisfaction, and wonder why I wasn’t joining them, if I purported to care as much as I professed. It sounds ridiculous now, when I type it. And I used to respond to the guilt, when others claimed that because my writing was “so good” (even when it harmed me to produce it), or because I still had some cognitive ability intact (even when it wasn’t), or because my knowledge of our history was so extensive (because it was so much easier for people to expect me to do the learning and regurgitation of our info so others, usually others far more able-minded than myself, wouldn’t have to put forth the effort), that it was my main responsibility–in my own life!–to be their soldier. Of course this only refers to the extremists, which are present in all activism communities, but they were telling me and others like me, in so many words: We want what you’ve got, so do our bidding; Don’t deviate from the herd; You’re good at this, so you should be good at it for our sake; Continue on this way at any expense, because think of those who can’t continue at all; Tell our story, not yours.

Now I realize I may have gotten it backwards. They may still be caught in that place because they haven’t found a way to move forward, and I may be leaving because, I finally have.

I suppose there’s really nothing you can do or say in any situation like this, when anyone places their expectations on you to do something that isn’t actually your job, whether it’s an abusive family scapegoating you into taking responsibility for everyone’s problems so they don’t have to face their own shortcomings, or the social justice warriors bullying citizens into feeling personally responsible for the fate of millions while ignoring the larger role top-tier executives and businesses play, or the minorities of society being made to feel like their every action needs to speak for the whole, while society forgets they are just human beings like everyone else, with the same limits and the same needs.

Yes, as it happens more often than I’d wish to recall, I start out thinking I’m the oddball only to realize years later that I was actually responding in a very healthy and reasonable manner. Of course in the past, I’ve made those same mistakes from the other side of the fence, as a younger, more immature advocate. Don’t get me wrong; I’m not any better than anyone else. I just know different things now, and I have different strengths (and weaknesses), and my actual job, is to put that knowledge to use in my everyday life.

Here’s my question for you: What things are you doing, what are you still participating in that you might have actually outgrown?

Are there things you’re doing just because a lot of others in your community do them, but that don’t really resonate with you?

Are there people you tolerate because “the group” likes them, even when you see right through them AND the harm they cause?

Have you outgrown your community, but stay, remaining stifled because you don’t know what’s next for you, because at least where you are right now, you know the rules?

What are you doing in a particular way just because it’s always been done that way by others?

What are you doing just because it’s expected of you, when it goes against everything you think your life should be?

Stop participating in activities that stifle you. Don’t follow the herd when they jump off a cliff. Stop tolerating those people. Leave the places you’ve outgrown. Don’t stay in a situation that harms you just because someone expects you to play the supporting role to their center stage. Stop letting domineering personalities make you believe your most significant worth is how well your actions maintain their happiness. Know that it’s okay to move on, and know that you’re the one who gets to decide when.

It is my wish that every pair of eyes reading this right now will discover the full extent of their personal power to make any and all of those things happen.

In what I guess is my “send off” message, I encourage the same theme I’ve had going here for the past five or so years: If something in this post has prompted you to consider your life, let yourself consider it. More than anything, I want to help people see there are ways to do and to be what they want, and that maybe by witnessing someone do or become whatever those things are, that they find their own courage to do or be it, too. I feel very blessed that I’ve been able to do that with this particular blog over the past decade, and I plan on continuing to use my writing to empower.

Because I’m going to continue being who I am. I’m always going to be the advocate, I am always going to be the one who fights for those who can’t speak up and I am always going to be the one who speaks the truth, no matter which sphere I’m a part of at any given time, no matter which illness or injustice or imbalance I have to stand against. I will always be a little “too much” for some people and “not enough” of something for others. And I will always fight so ferociously for myself and others because of the depth of my love for us all.


Brace yourself for this next part if you’ve known me for a while, as it may come as a shock, and may also be triggering to those with PTSD, particularly Complex PTSD.

To state the bare facts: I have been traumatized and abused extensively in my lifetime, both in childhood and well into adulthood by sociopathic narcissists in my “family” of origin. I moved from here long ago, but was forced to move back to physically survive after I contracted several infections at once and became so ill that I was just barely evading organ failure at the worst of it. (Your organs start shutting down after your oxygen concentration dips below 80%, and mine was, well, exactly eighty percent.) But the only sane, truly loving, authentically compassionate person in my family died while I was still undergoing treatments. After that, my day-to-day existence became dependent upon “help” from these extremely abusive people.

Accepting help from a “narcopath” is the same as signing a contract with them ensuring they get full rights to abuse you in any way they want, with the hidden clause that you are not allowed to protest or they’ll systemically and immediately take all of that assistance away, usually in the order of most-critical-first so as to have the most impact.

I vividly remember the first time I fought back against being abused after my last loving family member had passed away. What followed became a clear message of what lengths they’d go to show me just who had the power now, and that it was no longer me. I wanted to call the police, but I knew that drawing that much outside attention to what I was experiencing would only guarantee even worse verbal, emotional, financial, psychological, and indirect physical abuse in the short-term AND long-term, as punishment. As it turns out, I experienced more and more of all those things, anyway, as the years went on. Abuse doesn’t get better, only worse. If you can identify with any of this, start planning your leave.

Indirect physical abuse is a type of physical abuse where the abuser intends to cause you physical harm, while stopping short of actually hitting you because that would leave proof which could get them arrested. For example, stranding a wheelchair-bound person somewhere without their wheelchair, or purposefully triggering someone’s PTSD (or any other illness) with the intention of causing them visible anguish. There are those in my extended family who have even been thrown into comas when their psychopathic partners intentionally triggered them into violent asthma attacks in order to watch them suffer. These incidents are usually followed by short-lived “honeymoon” periods to prevent the victim from catching on and trying to leave, but the cycle of abuse wheel will always keep turning.

There is a massive element of psychological abuse inherent in indirect physical abuse, because the perpetrator can usually gaslight the victim and even witnesses, including legal authorities, into believing that the victim “did it all to themselves,” since there is no physical mark left behind to help prove the origin of the harm was the abuser. Even though they can spend years learning the victim’s triggers and weaknesses so as to use them as weapons later on, it is much more difficult to prove malicious intent, and the abuser is usually very careful to only show this side of themselves to their victim. It is the reason “house of horrors” regularly show up on the news with neighbors claiming the perpetrators appeared good as gold to the outside world. Because these types know what is right and what is wrong, and which facade they have to apply, and when, and in front of whom, in order to continue hiding in plain sight.

There are innumerable reasons why I was forced to stay in that situation for so many years, and I’ll just have to trust that my readers will take into consideration my intelligence and my ability to make sane decisions, even when choosing the lesser of two evils. They treated me this way, for as long as they did, because they knew they could get away with it given the circumstances. When the circumstances changed and I became stronger, both physically and mentally, the abuse worsened in an attempt to keep me subdued. They should all be in jail for the things they’ve done to me and others, and in fact some of them actually are, for different abuses. But I have finally escaped from them, all of them, and I have a new roof over my head in a much safer location (unfortunately I don’t own this one, but). I have money with which to eat and survive, and no one knows where I now live.

© a rainbow at night

I haven’t escaped unscathed, but in general, I am much more sound of mind than I probably should be, given my experiences. I wish I knew definitively why that is, but from my perspective, I think I owe this in part to:

  • Looking at things for what they are, even when those things are horrible, something not everyone can do;
  • Spiritual practices, including prayer, meditation, an unshakable belief in some sort of Universal Higher Power, mindfulness, and my understanding of the bigger picture (i.e. I am not my body but the divine spirit within this body);
  • Learning everything I can about narcissistic abuse and toxic family dynamics to remind myself it’s not “just me,” especially when I begin to falter and make excuses for them; and even
  • My near-death experiences, which helped remind me of the beauty and preciousness of life, and that abusers are only a small part of this world who can never override all the wonder and joy to be had here for those who are looking. Try as they might to control the reality of others, inflict purposeful harm, and prevent their victims from experiencing or showing happiness, they cannot override the dominant, divine forces of this planet.

And who knows what else. Of course this has come with a ridiculous amount of survivor’s guilt about being able to see through the madness and escape while others still believe in and suffer from the abusers’ alternate versions of reality… Which is probably why the survivor’s guilt related to other things–surviving hurricanes, floods, and the same diseases that have killed so many friends–has affected me so severely: it’s cumulative.

If I’ve gained anything from this situation, it’s that I have found and intimately know the real inner me, that still, small voice that is my Highest Self, and I know this part of me is always, always, always okay, no matter what. I’ve talked to people who don’t even know that place inside them exists, and yet it is the only reason I have been able to survive my life. I have, however, exhausted the limits of what I can handle on my own, and now it’s time to get help. I need treatment, and because I don’t have to be around the very people who are the reason I need that treatment in the first place, I can finally go get it.

I get to build a new life that fosters even more healing from all I’ve had to endure, including the life-altering disease that is PTSD. And I know I can do that, because I’m not afraid of facing harsh truths, and throughout my life I have always taken whatever anyone intended for my harm and transmuted it into knowledge that helped me become more loving, more joyful, more compassionate, and more resilient. I see my beauty for their ashes, and I want to use this next phase of my life to help others find theirs.

“But I’ve got a job to do, too. Where I’m going, you can’t follow. What I’ve got to do, you can’t be any part of. …I’m no good at being noble, but it doesn’t take much to see that the problems of three little people don’t amount to a hill of beans in this crazy world. Someday you’ll understand that. … Here’s looking at you, kid.”

Casablanca (1942)

 

Well, guys… I’ll see you around.

— Kit

Advertisements

The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?

When the National Academy of Medicine (NAM, formerly the Institute of Medicine/IOM) released its recommendations for Systemic Exertion Intolerance Disease (SEID) as a replacement for “ME/CFS,” I saw a lot of people spreading this myth: That “post exertional malaise” (PEM) is what differentiates myalgic encephalomyelitis (M.E.) from other illnesses. This is not true, nor is this what’s explained in the NAM’s report. At most, the report says that the presence of PEM helps distinguish it from other conditions, while it is what best distinguishes “ME/CFS” from idiopathic chronic fatigue. PEM alone is not specific to M.E., Chronic fatigue syndrome (CFS), or SEID, just like unrefreshing sleep is not specific to any one disease. Continue reading “The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?”

IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.

[estimated reading time: 5 minutes 12 seconds] © a rainbow at night
After almost seven years with this infection, I think the bartonella may be gone for good.

If you recall from this previous post, I talked about how my health was either about to nosedive, or finally overthrow this infection thanks to the millions of antibodies I now get infused into my body every four weeks (certainly many of which are bartonella antibodies, since this bacteria is so common)… Guess which one happened? Continue reading “IVIG Can Help Eradicate Bartonella Infection: My Success Thus Far.”

ME vs. CFS vs. SEID Information & Advocacy Chart

  • Click on the chart for the full-size version, as your browser may have resized the one below.
  • If you’d like an extra large version (say, for special eyes), click here.
  • To download as a PDF file (which I optimized for printing), click here.
  • For Facebook upload onlydownload this special Facebook size of the graphic, because Facebook has annoying rules about photo dimensions.
  • On Twitter? Click here now to Retweet/Quote/etc. the graphic
    • If you try to share the image anywhere else and it uploads blurry, link to this direct image.

ME CFS SEID chart via arainbowatnight


  • Click on the chart for the full-size version, as your browser may have resized the one above.
  • If you’d like an extra large version (say, for special eyes), click here.
  • To download as a PDF file (which I optimized for printing), click here.
  • For Facebook upload onlydownload this special Facebook size of the graphic, because Facebook has annoying rules about photo dimensions.
  • On Twitter? Click here now to Retweet/Quote/etc. the graphic.
    • If you try to share the image anywhere else and it uploads blurry, link to this direct image.

You may share any of the graphics or downloads linked in this post.

Today is International Awareness Day for Chronic Immunological and Neurological Diseases. Feel free to share this page or download the graphic and share it on social media with friends, family, and your circles. Like most diseases, people never hear of this one until it happens to them or someone they love, but facts about classic M.E. have effectively been buried beneath 30 years of misinformation. Many have lived with these diagnoses for years and never heard any of this before! It doesn’t have to be like this.

I’m hoping people diagnosed with CFS (or diagnosed with “ME” but by using CFS criteria, which happens often in places like the UK) will read this, think twice about how exactly they got their diagnosis, and begin looking for the real cause of their symptoms with a doctor’s help. Or, if they do unfortunately meet the criteria for M.E., they will learn what they’re really up against, how to manage this disease appropriately, and might even be able to find specialists to help with specific symptoms. Learning that you have the real M.E. also gives you the opportunity to slow disease progression with things like mitochondrial support, immunoglobulin replacement therapy, treatment for secondary infections, and energy management such as pacing and switching, in contrast to forced exercise most recommend. Repeated episodes of paralysis can cause additional permanent damage to the muscles; those unaware they have M.E. wouldn’t know this.

Just remember: Whatever your symptoms, whatever your diagnosis, all of us in this community understand your suffering and want the best for each other. If you’ve had a long day of advocating, here’s some very good news, and your invitation to rest.

With Love,

a rainbow at night


Quick links:

The Parts of ME: What If It Were You?

Throughout this series, but especially in this part, I only ask you to remain open. But what does that mean? To quote Thich Nhat Hanh: “Usually when we hear or read something new, we just compare it to our own ideas. If it is the same, we accept it and say it is correct; if it is not, we say it is incorrect. In either case, we learn nothing.” So by being open, we agree to allow the information in and integrate it with the use of our intelligence instead of thoughtless reaction.


So much of the M.E. vs CFS debate is clearly a matter of perspective.

If you’ve been offhandedly diagnosed with myalgic encephalomyelitis (M.E.) or diagnosed with chronic fatigue syndrome (CFS), there’s a good chance you tend to to speak with those in the community who also have your symptoms. It’s easy to reinforce your own version of things when there’s nothing to challenge it; if everyone around is just like you, who wouldn’t feel right? You generally support research efforts into “ME/CFS” because you feel confident this research will actually help you and others, so your main advocacy cry is “More funding!”

But hold on…

Would you still feel just as confident that research being done on your illness was ACTUALLY being done on YOUR illness if all the people you talked to didn’t have your symptoms? Or would that make you wonder which disease researchers were ACTUALLY studying/what group of people the studies were ACTUALLY helping?

To quote a friend: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”

What if everyone you talked to with your illness said they actually weren’t very fatigued and could exercise five times a week? Your thoughts are probably the same as what an M.E. patient thinks when we hear of someone getting an M.E. diagnosis (1) without getting sick after a virus, (2) without having any neurological damage, and (3) without experiencing any exertion-induced muscular fatigue and/or pain (with subsequent exertion-induced paralysis): How can they have a disease without any of the core manifestations of that disease?

Or, what if your version of CFS were suddenly renamed to “idiopathic rash disease” just because a lot of people with CFS get rashes? Over time, your disabling fatigue, post-exertional malaise, pain–none of it is required anymore for this new diagnosis, BUT! It’s now called “CFS/Idiopathic Rash Disease.” You might ask, but Kit, if none of the symptoms for CFS are required for Idiopathic Rash Disease, why on earth was it ever combined? Well, because the Idiopathic Rash group advocated so strongly that the illnesses should be combined–after all, even though they have little in common now, it did originally start as a type of CFS, right?–that it ultimately becomes known internationally as “CFS/Idiopathic Rash Disease.” This looked like a good thing to the thousands of people who had no idea what “real CFS” was, so there wasn’t much protest from society at large…even though this combination further muddled everything (especially research!) by combining what used to be called CFS–your disabling fatigue, pain, sleep problems, etc.–with a new category that the government invented to study unexplained rashes.

Meanwhile, CFS advocates are feeling increasingly helpless that the majority of their patient group is being replaced with something that only barely describes their condition–your condition!–pleading, “This rash disease used to be called CFS, because we all had excruciating fatigue and post-exertional sickness! What is left to study our illness if all research is going towards unexplained rashes that could be caused by a million different things? Some of us are dying!” Incredulously, the people diagnosed with Idiopathic Rash Disease truly think they have the same illness as you, as classic CFS, even though they didn’t need nor have any of your symptoms for diagnosis.

How do you suppose research on “CFS/Idiopathic Rash Disease” will actually study people like you, now, when classic CFS is being buried year after year by more and more people who just want answers to their rashes…? And truly, they deserve those answers, don’t you think? You wouldn’t want to deny them their own research just because the government made a nonsensical decision to replace CFS with a focus on this new rash disease. But nonetheless, both groups are synonymous with each other, now, and across the globe people are starting to forget that CFS was once its own category, with its own symptoms that had nothing to do with idiopathic rash.

One day, you realize thirty years have passed, and all the new patients being diagnosed with “CFS/Idiopathic Rash Disease” don’t even remember when CFS was its own illness anymore. Funny thing is, everyone is quick to remember the part where Idiopathic Rash Disease started because of some CFS patients with rashes, but no one seems to remember that that’s where their similarities ended. You’re no closer to science figuring out what’s wrong with you, nor is anyone with Idiopathic Rash Disease any closer to finding out what’s really causing their symptoms. In fact, these new, uninformed patients are now yelling at you, an original CFS patient, claiming none of this even matters. Why are you so caught up on a name? Idiopathic Rash Disease is the same as CFS because it was created from CFS patients. And if no one likes the name of “idiopathic rash disease” maybe we’ll just petition the government to call this “CFS” again–that would help everyone, right, if we just took all these random rash patients and said they have CFS?

Hopefully that scenario upset you. Hopefully it made your head spin to think that anything so nonsensical and unscientific could ever happen. Maybe you’re even outraged and ready to end this hypothetical situation…

But this is exactly what happened to people with classic M.E. when CFS was invented. CFS was created to study “chronic fatigue of undetermined cause” and as the years have passed it’s morphed into a hybrid that still doesn’t describe any one condition. And it is not the fault of the CFS patient (or “ME/CFS” patient) that they’ve been so misinformed by the people they thought they could trust, or that those in power leave out major details when discussing ME and CFS history. But if it were you, if you REALLY WERE being replaced and forgotten in favor of a new illness that doesn’t describe your disease, wouldn’t you want someone to speak up for you?

So why do people look at us like we’re doing something wrong by reminding everyone that chronic fatigue syndrome is not M.E.? I quote again: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”


Luckily, the illness defined by Ramsay et al. called myalgic encephalomyelitis is not that easy to get. But

  • we all got sick after a virus;
  • we all have measurable neurological damage; and
  • we all have a very distinctive muscle pathology, a sign that was described by multiple doctors who all came to the same conclusion without having any communication with each other: “Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.” (Quote by Dr. Melvin Ramsay, although all M.E. experts explain this same phenomenon in their own way)

ME CFS SEID criteria-only

And finally, none of us are being studied at all unless we piggyback into research with other illnesses. People with classic M.E. have been forgotten, and this has been worsened irrevocably by (1) fighting to have ME and CFS combined into “ME/CFS” without fully understanding what this does to us or how much it further harms everyone, as well as (2) efforts to rename CFS to M.E., which is entirely illogical. Several recent polls have revealed that patients prefer the name M.E. because it sounds more legitimate, even though most people diagnosed with CFS–and even people diagnosed with ME without thorough inspection–do not actually have classic ME.

It makes no sense to rename CFS (and SEID) to “M.E.” without also changing the diagnostic criteria to actually reflect M.E.This is not 1988, the CFS bucket no longer contains just people with my illness, or just people with your illness, but dozens of misdiagnoses combined under one label. So why on earth would we rename one condition to another condition that it isn’t? I think the only thing these poll results prove is just how misinformed our community really is about our history, which is a major reason I’m writing this series. (I also left a comment to that post.)


So what’s my point in all this?

People who do get this infectious neurological disease–classic M.E. as it was defined before being unduly influenced by CFS and psychiatry–deserve to be and should be studied on their own, NOT forced to share the diagnosis and subsequently the research opportunities with other illnesses, all because a mistake was made thirty years ago. It’s not about the name itself as much as what the name used to stand for: I don’t care if we start calling it Egg Disease, as long as it actually describes and studies us, and only us! Until we consistently group people like us together and study them, we will never know what is causing this illness or how to relieve the suffering of people who move into the chronic, incurable, relapse-remitting or progressive forms.

All of these outbreaks didn’t just just magically stop occurring when CFS was invented. M.E. outbreaks are still happening even though the epidemics are no longer being recorded or studied. Cort Johnson wrote that Dr. Byron Hyde mentioned having “reports of over sixty” M.E. outbreaks from just 1988 to 2003, which were “no longer figured in the literature” and “were not given any mention in the ICC” (International Consensus Criteria). This should horrify people, and yet…

So please tell me how people with classic M.E. are supposed to be okay with what’s happened. Please tell me how research on people who became gradually fatigued is supposed to help people who all got sick after a virus. Please tell me how research on people who are chronically fatigued is supposed to help people whose breathing muscles are so weak many must sleep propped up or suffer from hypoxia; who exhibit clinical heart failure after exertion; who can’t write without risking arm paralysis; who can’t get up from the lying position using their back and abdominal muscles (which used to be such a prominent feature at the onset it was almost a diagnostic sign). And please tell me how giving people a diagnosis of M.E. without requiring the core manifestations, without checking for bacterial infections like Lyme disease, or even without giving them an MRI, is supposed to result in anything other than continued disaster (for us and the integrity of research).

If you want to pretend none of this is true–that you didn’t read any of this, that infectious M.E. doesn’t still exist–you won’t run into any shortages of other places to go. There are countless patient groups for you to join that will say none of this matters because it’s not THEIR symptoms that are being ignored. You’ll still have those options… But I ask you to contemplate having your disabling condition replaced by idiopathic rashes, like we’ve had our disabling condition replaced by idiopathic fatigue. After reading this, you are aware that we still exist and that M.E. epidemics are still quietly occurring. Don’t forget us.

All of that said, I do think we’re too far gone to erase CFS or SEID, despite some claiming it is the only way forward. I do not think it is the only way, nor do I think it’s even plausible. In reality, while we’re fighting for change, people are going to be misdiagnosed with CFS (and SEID, if it’s implemented)…including thousands of people with M.E. This is terrible because it diagnoses us too late for intervention, doesn’t give us the treatment advice we need in time, and doesn’t allow us to partake in research that applies specifically to us. But not all “ME/CFS” research has been fruitless. Some researchers select specific subsets–such as focusing on post-viral acute-onset cases while at the same time selecting patients who meet the Canadian Consensus Criteria, the only criteria that specifically require muscle fatigue–and we do get somewhere. That is exactly how the recent “robust evidence” paper selected their patient group, and it most likely included many patients with actual M.E. because of it; to that effect, the results actually match historical knowledge about ME in several ways. I also personally hypothesize that if SEID inadvertently catches a greater number of people with M.E., coupled with increased funding, this may one day force science to separate us into our own group yet again, if we repeatedly show abnormalities that others CFS subsets cannot reproduce… But I’ll have to explain all that in a later post, as this one is getting uncomfortably long.


Lastly, consider this:

There are thousands of rare diseases that will never be studied or researched. I think sometimes we get lost in the idea that it’s others’ jobs to fix us instead of our job to continue living our lives as best as possible. It’s wonderful that we’ve created a system to study diseases and relieve suffering, even if those systems get it very, very wrong sometimes. But M.E. has existed for centuries and will continue to do so, no matter what people call it, no matter how many people try to say we don’t exist. So listen to me:

I believe you. I’m sorry we’re on this particular journey together. And it is my most sincere wish that you not only discover the truth about this disease to the extent that it will help you (the books by our experts are some of the most validating things you’ll ever read) but that you’ll also do everything you can to increase your quality of life while you’re here, because you do matter. Dare to find enjoyment in your life, even if it’s difficult, because your life isn’t over just because you or a loved one got sick. In the mean time, we have to help each other, and I hope to do my part by not letting the truth die out. If you are also a person with classic M.E. or their carer, I invite you to share your story with the world, as well.

“If you destroy the record, you destroy the truth.

I’ve learned in my adult life that the will to silence the truth is always and everywhere as strong as the truth itself. So it is a necessary fight we will always be in: those of us who struggle to understand our common truths, and those who try to erase them. …

All so precious and fragile. Don’t let anyone tell you that the truth can’t disappear. If I believe in anything, rather than God, it’s that I am part of something that goes all the way back to Antigone, and that whatever speaks the truth of our hearts can only make us stronger. Can only give us the power to counter the hate and bigotry and heal this addled world.

Just remember: You are not alone.”

(Paul Monette, “Last Watch of the Night: Essays Too Personal and Otherwise.”)

Until next time…

a rainbow at night


See also:

Books and Materials on Myalgic Encephalomyelitis:
  • Missed diagnoses: Myalgic Encephalomyelitis & chronic fatigue syndrome (2nd ed.), by: Byron M. Hyde, M.D. with a foreword by Professor Malcolm Hooper. (2011)
  • The Clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome, by: Jay A. Goldstein, M.D. and Byron M. Hyde, M.D. (1992)
  • Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free disease (2nd ed.), by: Melvin A. Ramsay, M.D. (1988)
  • Click here for more Resources on M.E. and CFS

The Parts of ME: Introduction & History: How Did We Get Here?

It takes a long time for me to integrate new information.

And as anyone in the ME community knows, we’ve had a ton of that since February. Instead of blindly powering through, waiting has given me a month to gather facts, opinions, and input from our advocacy leaders, my trusted friends, and even the IOM committee members. The best way for me to write and for you to read (that is, if you want) is to break it into parts.

Please note that each post will be able to stand on its own: Don’t fret about having to remember plot-lines from week to week; this is not a story. This is definitely. not. a story.

All right. Fasten your seat-belts, gather your friends, because here we go. It’s time to make some sense out of all this.


The Parts of M.E. (Upcoming posts)
  1. Introduction & History: How did we get here?
  2. What if it were you?
  3. Does “Post Exertional Malaise (PEM)” exist in other diseases?
  4. The IOM Committee Speaks Out
  5. The Problem with M.E.-only Advocacy, and How SEID May Help
  6. Does encephalomyelitis really exist in Myalgic Encephalomyelitis (ME)?
  7. The ICC or CCC as an M.E. definition: Are we promoting bad science?
  8. Why do we advocate?
Note: Some of these might be combined or further segregated as I go along.

Let’s begin by clearing something up: How did we get here? The confusion between M.E. and similar states has always been a point of controversy. Today’s over-inclusion involves M.E. vs Any other disease with chronic fatigue; before CFS, the over-inclusion was of M.E. vs. Any other disease with chronic post-viral fatigue. These illnesses have also always been thought by many to be purely psychological in origin…along with 95% of all other ailments, because that’s just what people did back then. (Hysterical wandering uterus, anyone?)

But why hasn’t M.E. moved forward with all the others, especially after decades of documented outbreaks and with so much research proving it’s an acquired disease of non-mental origin?

The major denial of M.E. in both the US and UK has stemmed from people with too much power failing to examine a single patient.

McEvedy and Beard–both psychiatrists*–wrote their deplorable 1970 re-analysis of the 1955 Royal Free epidemic without doing a physical examination on a single patient, basing their feedback on data which they decided could just as easily have been hysteria…not out of some moral obligation to scrutinize data, but because McEvedy was a psychiatry student who needed an easy paper to write for his PhD. Professor Hooper writes of this:

“McEvedy stated that he did not examine any patients and undertook only the most cursory examination of medical records. This was a source of great distress to Melvin Ramsay who carried out the first meticulous study of the Royal Free outbreak. The outcome of McEvedy’s work has been described by one of the ME/CFS charities as “the psychiatric fallacy”.” (1)

Dr. Hyde writes of his personal visit with McEvedy in 1988:

“Why had he written up the Free Hospital epidemics as hysteria without any careful exploration of the basis of his thesis? I asked.

His reply was devastating.

He said, ‘It was an easy PhD, why not’.” (2)

While over in the US, it is well-known that the CDC did the exact same thing:

In response to several 1980s M.E. outbreaks, CDC investigators looked only at patient charts–NOT actual patients–and returned to their offices to make jokes about our presumed “hysteria.” It wasn’t until the doctors attempting to manage these outbreaks took over $200,000 of their own money to pay for MRIs, that they found their patients had brain lesions indistinguishable from those found in people with AIDS; because these findings were not seen in ALL patients, they were not taken seriously, despite being consistent with myalgic encephalomyelitis. In 1988, the CDC christened the continuing outbreaks as a new illness–chronic fatigue syndrome (CFS)–effectively because three M.E. experts left the committee early due to a lack of patient information and the remaining committee’s preoccupation with Epstein-Barr Syndrome. (2)

From the criteria that developed to study CFS (which was only intended “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause“), we have helped cultivate an old mess that still exists today: Thousands of people diagnosed with everything under the sun, whose illness is being called myalgic encephalomyelitis. This includes thousands who don’t meet even a single criterion for what was actually M.E. before the invention of CFS or the watered down post-CFS model of ME that exists in many countries today.

ME CFS SEID criteria-only

As you can see, this is the reason some diagnosed with CFS do have M.E., and the reason much research does still apply to M.E. even if the titles “CFS” or “ME/CFS” are used. The trick lies in checking the methodology: If patients were selected using the ICC or CCC (especially in addition to another criteria), there’s an excellent chance the results could apply to classic ME. If they were selected to meet certain additional M.E.-like criteria, such as a post-viral onset, even better. But if patients only had to meet one CFS criteria (or something equally nonsensical, such as the UK’s “NICE guidelines for CFS/ME”), proceed with caution, because this may mean the only thing the participants had in common was “a fatiguing illness.”

“Even if the truth is buried for centuries, it will eventually come out and thrive.” (Burmese Proverb)

To be continued…

a rainbow at night


(P.S. – I thought I should finally publish a Facebook page so I can be engaged with the wonderful groups and people there, and also share things that are both too long for my twitter and too short for blog posts. Watch it for updates of new posts, things relevant to ‪‎Myalgic Encephalomyelitis‬ and related diseases, ‪Lyme Disease‬ and related content, ‪Buddhism‬ and ‪spirituality‬ (theists and non-theists welcome), ‪Mindfulness‬ and other meditations, ‪‎coping‬, ‪advocacy, and more. You CAN post to the page, but things will be moderated–checked by me for inappropriate content before they go public–to keep it a safe place: Differing opinions are NOT seen as confrontational, just don’t talk down to others. :) Thank you for your “Like”!)

Explaining to Those with “ME/CFS” That They Cannot Have Both

ME CFS SEID criteria-only

Here are some things I used to think about people who tried to tell me chronic fatigue syndrome (CFS) was different from myalgic encephalomyelitis (ME):

  1. They’re just trying to cause a problem where there isn’t one.
  2. They’re “those advocacy-type people” who “make a big deal out of everything.”
  3. They just want it to sound more serious, when it’s actually the same illness.
  4. It really doesn’t matter what people call it; they just want their disease to be “special.”

Yes, I *legitimately used to think these things.*

Have you ever wondered why people continue using terms like “ME/CFS” “CFIDS/ME” (and now “ME/SEID”), despite being confronted with information that clearly details their differences? Ever wanted to inform someone you care about, but aren’t sure how?

I recently witnessed this exchange that took place across several days, about what all too often happens when people try to educate others on this matter. Brooke and her friends have graciously allowed me to post their conversation on why people resist this truth so fervently, as a guide for all of our understanding.

(She would post it on her own blog, but now lacks the cognitive flexibility to organize and edit as I’ve been blessed to accomplish here over the past week. I’ve edited the quotations only to clarify the intended meaning and combat the effects of cognitive disability.)

“All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.” Arthur Schopenhauer, German philosopher


Renee Roszkowski: “Just got called ‘disrespectful’ for trying to educate on the fact that M.E. and CFS are not the same thing and the term ME/CFS is not really a good term.”

Brooke: “I’m sorry to hear that. Unfortunately, it’s not too uncommon for (some) people diagnosed with CFS to get upset when people try to explain the difference. I can understand: They go so long not knowing what’s wrong with them, being judged, told it’s all in their heads, etc, and then a doctor finally gives them a diagnosis frequently linked together with a very real, fairly well-understood, officially recognized neurological disorder, so they want to cling to that. Being told they may not have M.E. (and most likely don’t), puts them back in the position of, “Well, then what’s wrong with me?” And that’s difficult to accept.

It’s hard for those diagnosed with CFS to accept that they *don’t* actually have a diagnosed illness, yet; that all they have is a diagnosis that says doctors don’t know what their diagnosis is; that it’s not a single, treatable illness able to be researched like so many have been led to believe. (It was never intended for CFS to be its own disease; it was intended to “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” ¹). Finding out that they need to go back to pushing doctors to do whatever tests are necessary to find their *true* diagnosis can be extremely disheartening. …

It’s just difficult to help people get past the initial frustration or fear-induced reaction of disbelief, and help them move on to the idea of, “Hey, if I don’t actually have M.E., there’s a decent chance whatever I *do* have has at least some level of treatment available–maybe even a cure.” It’s difficult to go back to pushing for answers, but it is oh-so-worth-it for those who finally find them, and find some level of relief from their symptoms!

Renee: “I can totally understand, having been diagnosed with CFS, but actually having Chronic Epstein-Barr Virus, endometriosis, probable POTS (not yet diagnosed but I meet the diagnostic criteria), and potentially having a thyroid disorder, ALL of which have fatigue as a major symptom. I totally understand.”

Brooke: “Yeah, a lot of people diagnosed with CFS also have other diagnoses, which is kind of crazy if those other diagnoses can explain their fatigue, because a requirement for a CFS diagnosis is that your fatigue is not explained by any other illness ² (again differing from M.E., which, like any other neurological illness, you can have even if you also have other conditions causing similar symptoms). Why do doctors diagnose people with CFS if their symptoms are explained by other (testable) conditions? Not only is that medically incorrect/[completely against the criteria for diagnosis], it just doesn’t make sense to me. Diagnosing these individuals with CFS [when other conditions explain their symptoms] then saying it’s the same as M.E., is like doctors issuing a statement that everybody with a condition that causes any form of fatigue will now also be diagnosed with cancer.

Jennifer Phillips: “What people mean is too often not what actually gets heard. ‘CFS is not a real diagnosis’ can all too easily get heard as ‘CFS is not a real disease and you’re making up how sick you are.’

You need to approach it like this:

“You probably know that CFS captures a lot of different diseases that doctors just don’t know how to diagnose, right? People with CFS are sick, but not all in the same way. But M.E. has a distinct diagnosis and known cause. So if you’ve been diagnosed with CFS, you may or may not have M.E., depending on if the doctors have done these diagnostic tests or not. If you don’t have neurological problems, you probably do not have ME. This does not mean you are not sick, but that the knowledge about M.E. likely can’t help you and chances are your doctors need to keep figuring out what your CFS really is from.

Brooke: “That’s generally how I approach it when explaining to people who don’t already know all this stuff. I’m a bit more blunt (or rather, I just don’t take the time/energy to be extra careful in wording) with people who I know already get it and have the same views, but I agree, when educating you do have to be careful not to come across as saying the person is not sick. Most people diagnosed with CFS have heard that too much in their lives, and will be quick to get defensive–I know, because at one point I, too, was (mis)diagnosed with CFS. The vast majority of people with CFS don’t have M.E., so in a way I ‘lucked out’ once I had the CFS diagnosis, in that it wasn’t too hard to find the accurate diagnosis from there (with the proper tests to correctly diagnose it). But I do think most people with CFS have at least one physical illness of some kind. Even for those whose illness is psychiatric, that’s nothing to look down on. (For example, one study found over 30% of individuals with Major Depression were misdiagnosed with CFS: “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.” ³) There are often very real chemical/physical causes behind mental illness, too. They simply need to find the truth, whatever their true diagnosis is, so they can look for appropriate treatments.”

Renee: “I told them that I have CFS and a friend with ME, so I don’t think I sounded dismissive.”

Brooke: “One of the issues I see all too often is that many CFS patients actually *don’t know* that CFS includes people with lots of different illnesses. They’ve actually been told by their doctors and others that CFS is one single illness (“otherwise, why/how would anyone research it?”) and that “it” is synonymous with ME. They think that as long as you have unexplained fatigue lasting six months or longer, you have ME. Getting people to understand that (1) there is no single “it” when it comes to CFS, (2) that ME is something *entirely* different (most M.E. patients don’t even list “feeling fatigued” as a major symptom; our fatigue is at a cellular level and can contribute to the transient paralysis many of us experience), and (3) that *every* diagnosis of CFS is a misdiagnosis [because CFS is not a single disease but a diagnosis given when you have unexplained fatigue, nowadays particularly when you have unexplained fatigue with a post-exertional crash] – that can be a real challenge.”

Jennifer: “Which is why I phrase that point up front, as something they either know or don’t know, *not* something open to debate or telling them what to believe. Like you said, that confusion is why you want to educate people.”

Richard Heckart: “A closed mind is worse than an empty one. That’s my new saying from now on. Pass it on.”


To additionally put this in perspective for you:

It’d be like if the government suddenly stopped diagnosing Multiple Sclerosis and started calling all new cases “Weak Leg Syndrome,” deciding that the primary symptom of this new syndrome is weak legs. Eventually it gets dubbed “MS/Weak Leg Syndrome.” And now they’re saying that all you have to do to help weak leg syndrome is exercise because some people got better that way; they think other people simply have weak legs because they’re too depressed to move. Oh, and because MS = Weak Leg Syndrome now, no one ever gets diagnosed with actual MS anymore, so people with actual MS never get the correct life-saving treatment, therefore everyone who actually has Multiple Sclerosis, dies. Sounds crazy, right? Can you see this actually happening with any other well-known disease like this? Not at all. But that’s what happened to people with classic ME.

I hope people understand we are not just trying to nag you, or get validation for “our special disease” while leaving out everyone else. This isn’t a club anyone wants to be in. Everyone is suffering because of this international confusion. And because you can’t reliably study anything that isn’t clearly defined, no matter how many times they rename it or move around the same criteria, CFS still won’t be its own disease. There was no need to ever create CFIDS/CFS/SEID when the illness occurring in the 1980s epidemics already had diagnostic criteria, it already had a known cause, and it already had a name: Myalgic Encephalomyelitis. But instead of continuing to use it, the government created something entirely different, and all government-funded research on people with classic M.E. abruptly stopped. 

If you get diagnosed with CFS but don’t meet the diagnosis for the original illness (M.E.), it means you have something else that your doctors haven’t yet identified, ranging from the potentially treatable to the potentially fatal. So please continue to educate yourselves, *and* your doctors, because they are not omnipotent gods incapable of mistakes. There are also things you can do to slow down the progression of M.E., if you do indeed have it. And last but not least, don’t think that just because you have Post-Exertional Malaise (PEM), that you automatically have ME, because post-exertional malaise does exist in other diseases.

I have a friend in the UK who’s been diagnosed with “ME/CFS” for several years without having ever been given an MRI. But yet she’s in a wheelchair, getting worse, and shows several defining symptoms of MS.

Maybe she just has Weak Leg Syndrome and needs to walk it off…

a rainbow at night


Resources for M.E. and CFS

Note: Because of thirty years of confusion, some information labeled under CFS may be relevant to M.E., since some researchers use additional characteristics and biomarkers to select for different subsets of patients; for example, selecting the most severely affected (which through no coincidence tend to be those with M.E., often due to years of being told to exercise when this leads to disease progression and premature death), those with an acute viral onset, and those who met diagnostic criteria which required muscle fatigue on exertion. Likewise, not all information labelled “M.E.” is actually referring to the specific disease of myalgic encephalomyelitis, and may only be borrowing the name while in fact the data therein describe general CFS or “ME/CFS.”

(1) Holmes, G. (1988). Chronic Fatigue Syndrome: A Working Case Definition. Annals of Internal Medicine, 387-387. “We also present a working definition for the chronic fatigue syndrome designed to improve the comparability and reproducibility of clinical research and epidemiologic studies, and to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.
(2) The IOM recommended on Tuesday, February 10, 2015, that this requirement be lifted, but please bear in mind this has not yet been implemented by the CDC or become customary for doctors; diagnoses of CFS are still and have always been made on the basis of unexplained fatigue, whereby any other diagnosis is supposed to disqualify you from having CFS, because CFS is a diagnosis of exclusion, i.e., not a specific illness but a category people are put in when doctors cannot explain your fatigue and other symptoms, even if your symptom of fatigue is post-exertional fatigue.
(3) Jason et al. Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. (2008). Journal of Disability Policy Studies, 20(2), 93-100. Almost 2 of every 5 people diagnosed with Major Depression meet all the criteria for CFS, too. “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.”

The Killer in the Crowd

♪ “Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫

Something I never considered the IVIG might do was the one thing I’ve diligently avoided doing at all costs for the past two years: Wake my immune system from its compromised state of complacence. Because that, in turn, as has happened every single time over the past six years, would reactivate my latent bartonella infections.

But that’s exactly what it did.

Some of you may not remember my ordeal with this infection unless you’ve somehow been following my blog since the beginning, but this short post from January 2012 might help a little.

I realized a year later that my symptoms were re-emerging and my bloodwork showed increasing signs. From then on I did everything I could to not stimulate my immune system, especially avoiding antibiotics at all costs (i.e., in the event I caught something extra; because as we know this entire treatment-failure conundrum was caused by me being unable to tolerate antibiotics to treat the Lyme, bartonella, mycoplasma, etc.). Because of this, and thankfully so, it remained somewhat latent in contrast to how quickly it spread the first few times it was active. From past experience, I’d seen that activating my immune system in any way triggered it to attempt fighting infections wherever they existed, despite my immune system not having everything it needs to actually fight, or even being able to use what it does have, efficiently. I’d found out the hard way that to reactivate bartonella was to initiate my imminent decline: The first time this happened, I was bedbound within eight months; the next, within just four.

Well. All the symptoms that have occurred periodically since the bartonella relapsed, are once again emerging VERY reliably every 5-6 days (usually five, as is part of the reason bartonella “quintana” got its name). There are the frontal headaches; the unusual rashes and bumps on my feet, ankles, lower legs, and hands/fingers; the foot pain; the shin pain; chest pain; more arrhythmia; more anemia; the volatile moods that occur the worst on that 5th day, leading to rapid cycling between hopelessness, suicidal ideation, rage, paranoia, and anything else you can imagine, before fading as quickly as it arrived; the worse “brain fog” and neurological dysfunction; low-grade fevers; excruciating fatigue; worse dehydration… Unsurprisingly, its pattern started five days after my first infusion in October, and has continued ever since.

A part of me just cannot believe this is happening again. The other part of me has not experienced something so dangerous since practicing Buddhism, and is able to be objective enough to find it fascinating how a body reacts to infection.

The worst flares–the ones that scare me–happen right before my infusions, when my immunoglobulin levels are at their lowest. I get IVIG every four weeks, but at my current dose the effects only last three weeks… So the fourth week, my system has fallen back to its usual, immunodeficient state, which means I am at mercy of a potentially-fatal infection with little to give it pause.

I discussed this with my immunologist today and he has upped my dose. We’ll see with my next infusion if this new dose will last long enough to stretch the entire four weeks, but if not, we’ll try every three weeks. If that doesn’t work, then I’ll have to do it subcutaneously every week just to stay stable. :\ (I hope not; I don’t know if I could handle that, mentally.)

I felt so horrible the morning of my last infusion, I thought I might more likely end up in the emergency room than their office, and wasn’t even sure if I should go. But within two minutes of praying for guidance, my doctor’s office called me and told me to come in, come in immediately. So I did, and by that evening I was a different person. For one, I was hydrated, but I also no longer felt like I was being mauled by a bear from the inside out. The flare completely stopped.

For the first time in over two years, I feel like I have a chance to slow these diseases’ progressions. And after seeing how my body can now fight back after receiving an infusion containing the parts of my immune system I’ve never adequately been able to create on my own, I have hope that maybe I can be like everyone else who gets a bartonella infection, and just kill it off before it kills me. This can really only go one of two ways.

If I can continue getting IVIG reliably then maybe several months from now my new-and-improved immune system, thanks to literally thousands, upon thousands, upon thousands of donors, can finally overthrow bartonella (and maybe the other, less-rapidly-progressive bugs?), and I’ll never have to worry about it again. That’d be nice… Really nice. But if not, I know this is still my path.

I regret nothing.

a rainbow at night

A Relapse Within a Relapse

Avenue of the Giants, Humboldt Redwoods State Park © a rainbow at night

First, I can’t thank anyone enough for the response on my last post; it was quite unexpected. I’m glad to have touched the hearts of so many and to have received such a beautiful outpouring of love and support in the comments and e-mails that followed. It really helped me feel less alone, and you should all stop to think of how amazing you are for reaching out to a practical stranger. Thank you.

Right now the biggest thing on my mind is, a friend of mine who I wrote about several months ago, Brooke, is in the very final stages of myalgic encephalomyelitis. There were recently several weeks when insurance troubles denied her hospice care, during which she deteriorated very quickly. I do know she is getting at least some pain relief, and that is a blessing, and recent complications hint that it might not be too long…which is probably a blessing, too, if you ask me. She worked extremely hard to produce this post and a subsequent one to cover any confusion about her decision to deny “life saving” measures (questionable terminology) such as feeding tubes, which would only work to extend her suffering past her natural end. Her family will be delivering any updates as they occur.

[ETA: As of writing this, she’s managed to produce one more post clarifying that her amazing doctor convinced hospice to accept her for another 60 days. And amazingly, her bravery has led to being a part of an upcoming documentary about the severity of true myalgic encephalomyelitis, one that might chronicle her passing from this world in an effort that will accomplish her original goal of Documenting M.E. and all that it entails, to help spread the truth for us all.]


Also, I’m in the midst of a further relapse. My health has been in a state of decline since June, and additional stressor after additional stressor pushed my body over the edge. Or at least that’s what I assume happened, because I can’t pinpoint one particular thing that did it. I do know the emotionally draining act of writing a goodbye letter to my friend–because life happens–sent me into incapacitating illness for a straight week, during which I was struggling to remain conscious every single day. It was quite scary, but I’ve since become able to stay awake more easily…

It actually took me a while to realize I had relapsed. When I first felt the decline, I expected to recover in a few days, as my health is highly sporadic and changes every day, every hour, every ten minutes some days… And I even expected this recovery might be more extended because of the seemingly continuous stream of triggers… But while I was knocked out last week, it occurred to me that my waiting to improve back to my previous levels of energy had spanned about 8-9 weeks already.

I may write further posts on this and other topics, soon, but right now it’s easier for me to do other things that only require small periods of focus. I’m updating my website behind the scenes, mostly.

Please continue to send your prayers, metta, and positive thoughts to our dear Brooke, her husband, and the rest of her friends and family. Also, to everyone who has recently subscribed here, thank you, and rest assured I will continue to write. (The Life Lessons section has a collection of my favourite posts, in the mean time.) My girlfriend might even be helping write a few sections and/or articles. If you want to contribute either with writing or links that you’ve found particularly helpful, don’t be shy about getting in touch! This site is for my expression, but the information I stand behind should be for the benefit of all.

I shall be focused on finding stability in this relapse.

a rainbow at night

Reaching Out for Support with a Misunderstood Illness

© a rainbow at night

I was incredibly uncomfortable with the idea of posting this… So you know what that means: I must.

I wish I had companionship with other people who identified with my particular variant of living with disease. Diseases for which there are barely any doctors who can or even want to help you. For which patients have to help each other find physicians. Who have had to fight to find even a sliver of support because the public is so disastrously misinformed about the true nature of their illness. Who have had limited or no help from the same group of organizations that would otherwise smother you in understanding and compassion, had you gotten a more acceptable or understood disease.

I wish I knew of the other people whose diseases didn’t have a cure and who’ve also exhausted all of their treatment options; treatments that tiny organizations of doctors have had to figure out, mind you–sometimes at the risk of being jailed–because if we did things the government’s way, we’d already be dead.

Where are the other people who simultaneously are so happy to be alive, valuing life immensely, yet who are also exhausted with day-to-day living? Who understand my uncertainty about the future because they, too, may be redirected from even having one? And the grief… Oh, the grief. There is no turning back this time. I grow more fatigued, more nerves die, my pain meds become stronger, and on rough days–in rough patches–the grieving is literally all I can handle. And it’s incredibly difficult to handle, when I feel I have no one to talk to about this who understands. Where are the support groups for people like me?

It’s almost impossible to find someone who’s tried the fight against late stage Lyme disease, in particular, and come to the same wall that I have: The understanding that the treatments have a greater chance of killing me than the disease itself, and that despite the severity, I stand a better chance at having a life if I let go of the need-to-treat and focus on LIVING.

No, most people aware of having advanced neuroborreliosis–aware that they have ANY progressive illness, really–approach it with a “die trying” attitude, no matter what. That works for some, as I’ve said many times. But I have neither time nor valuable energy to invest in treating a disease that cannot be treated without bringing me down with it. It’s because I’ve watched too many people actually die trying, that I know better. I’ve experienced on my own and witnessed enough in others to know that–unlike the inspirational recoveries in Under Our Skin–some cases are too advanced to treat, and attempts to do so actually cause the disease to advance quicker because the treatments are so harsh on systems already worn down. I am one of those cases, and I am not making that “mistake” again. I barely got through the first time I “woke it up”: We’re talking brain damage, endocarditis, almost needing a heart valve replacement, being bedbound 98% of the day and being plugged up to an oxygen machine. I fought back against all of that, but now, even attempts to gently fix the parts that are worn down, have almost hospitalized me, for the umpteenth time. And I don’t want to be remembered and honored for fighting a disease until it killed me, I want to be remembered and honored for living in spite of one.

It’s not as easy as just finding support groups for other people who are Buddhist, or have myalgic encephalomyelitis, or chronic Lyme, or bartonellosis, or mycoplasmosis. I was once part of a Buddhist support group for those with illness, that tried to enforce a sense of general support instead of conversation about specific diseases. It worked very well when people followed that, but people bring with them all of their life experience and inherited coping mechanisms, for better or worse made amplified by their chronic disease, and it became difficult to enforce that rule without the group splitting into camps. Not very helpful, and it just added stress.

The M.E. communities are usually full of people who don’t even have M.E., but CFS, so they don’t actually live with my symptoms or prognosis. And the only community specifically for M.E. I ever found actually barred users from even mentioning Lyme disease. It’s not my fault I got both, and I need to be able to talk about it. Since a major part of M.E. is accumulation of infections coupled with an inability to fight them off due to reduced natural killer cell function, one would think it extremely important to talk about how to deal with this…? Let’s not even get into the fact that bartonella is more of a threat to my health than Lyme, because most people don’t even know what bartonellosis IS.

AND DON’T EVEN GET ME STARTED on the Lyme disease “support” groups. I am the horror story people use to scare others into getting treatment: Treat now, or the disease will turn into a serious, disabling condition and then it could be too late! Yeah, well…

And try telling those people that you’ve made the heart-wrenching–but I think very brave–decision to stop treatment, and it’s like you’ve told them you murder bunnies in your spare time. How can you do that? Don’t you know what will happen? There’s still hope, don’t “give up,” you’ve just done it all wrong, just try this, and that, and this…

I’m sorry my story scares you. No, we didn’t catch it in time. Yes, it is too late for either natural or pharmaceutical treatment to do anything (besides give me life-threatening herxheimer reactions). But my life still matters, and I still need support. And yet when I’ve reached out with a fragile heart, I’ve gotten judgment and condemnation instead.

For some reason, I had so much more support when I was still in treatment. Well, I’m still fighting for my life, I’m just doing it in a different way. 

It’s similar to when people with cancer realize they need or want to stop treatment and focus on life, and must tell everyone. It’s not always pretty, I get that. I researched a lot of support resources similar to this when I made my decision a year and a half ago, and it was extremely helpful… But I’m tired of researching help other people have gotten who aren’t me. Sometimes I don’t have energy to research support, I just want to talk to a friend who already understands what this is like and get things off my chest.

It’s essential for people with severe and especially misunderstood illness to build a support network, and the circumstances here are critically relevant to how someone experiences being sick in this way. Lately I’ve felt it particularly important to address this before things get more.. well, you know. But how?

So, if you understand this post, or know someone who might relate to it, please don’t be shy about sharing, commenting, or contacting me. To everyone else, thank you for letting me share my story.

a rainbow at night


ETA, 2014 August: This organization might be a start, for some: Online Patient Communities — National Organization for Rare Disorders (NORD).
ETA, 2016 Feb: Something of a miracle happened when my immune system started bottoming out due to my ever-growing infection load: My insurance approved me for IVIG, a $50k per year immunoglobulin replacement therapy for my primary immunodeficiency disease.

M.E. Demonstration in San Francisco on May 12th: “30 Years of Neglect”

Today’s post comes to you with a mix of emotions. Hope. Grief. Joy. Bittersweet, if there were ever a scenario in which to feel it.

Erica Verrillo e-mailed me last week to share some important news. For this year’s awareness day on May 12th, there will be a demonstration at HHS headquarters in San Francisco to raise awareness of myalgic encephalomyelitis. The information reads as follows:

JOIN US IN SAN FRANCISCO ON MAY 12!!
 
On Monday, May 12th from noon-1PM there will be a gathering at HHS headquarters at the Federal Building (90 Seventh Street)
“30 Years of Neglect”
 
30 years ago the town of Incline Village, Nevada was struck with myalgic encephalomyeltitis (ME), a neurological disease that HHS derisively named “chronic fatigue syndrome.” Since then, over a million people have been struck – worldwide, between 17- 20 million. In one quarter of the cases – 250,000 people in the US – ME leaves its victims bedbound. And, it kills.
HOW MANY MORE MUST DIE?
 
What has HHS done in the past 30 years to prevent the spread of this disease?
Absolutely nothing. HHS has stood by while over a million people have fallen.
·        HHS has failed to fund research
·        HHS has failed to provide accurate information to physicians
·        HHS has actively lobbied against patient interests
Please join us at the Federal Building on 90 7th Street on May 12th noon – 1PM!
 
To draw attention to the fact that ME not only disables but can kill its victims, we will be displaying a line of empty wheelchairs with pictures of people who have died of ME, and we will read their obituaries.
Afterwards, we will go to McKesson Plaza to take our message to Dianne Feinstein. (5 blocks from Federal Building – there is a bus stop close by.)

This will be a peaceful demonstration. (We have a permit.) For your convenience, there is a bathroom in the café next to the Federal Building.

For more information please contact Erica at everrillo@yahoo.com

If people were diagnosed from the onset and their doctors knew that enforced rest could mean the difference between a possible remission or mild form of the disease, or permanent damage and eventual death, how many lives could be saved from this disease that still has no cure or treatment?

People with M.E. are at a great disadvantage when it comes to rallying–we’re usually too sick to do it. Rarely is there a grace period between falling ill and disease progression–every stage of M.E. is a disabling level of illness, or else we’d have raised a much larger fuss by now. But if we have weeks of planning in advance, some might be able to make it.

I never participate in “International ME/CFS/FM Awareness Day,” as I feel the loud cries of “combination advocacy” hurt us all. We just want the truth out there, but those of us with M.E. get forgotten under accusations of trying to stop progress. But we’re not. It is fact that “chronic fatigue syndrome” was an invented term for what was actually an M.E. outbreak. The CDC ignored M.E., created new criteria for diagnosis that was purposefully written to focus on chronic fatigue, and called this “new” illness “CFS.”

“The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” (Centers for Disease Control and Prevention, USA, 2011)

Ever since then, government funded research into M.E. completely stopped, and everything is now poured into the world’s new definition of CFS, or some perceived mixture of both under “ME/CFS.” Because of this, research gets no where, no cause or cure can be found (how could it?), leaving scientists to think it’s all in our heads; sick children are taken from their families and into mental asylum because doctors think this “new version of M.E.” is purely psychological. And fibromyalgia may accompany M.E. just like it may accompany any other illness that damages the nervous system, but it is not ME. Worst of all, the exercise recommended for patients of “Chronic Fatigue Syndrome” and Fibromyalgia can kill or cause permanent damage to those with ME.

We need to get this information out there, but how can we if we’re too sick to be noticed? So please, share this information so more people can have a chance to show up, and let’s try to make a statement. Maybe we’ll make the news.

a rainbow at night

(Post Script: If it’s easier to share an image, download this.)

ME vs. CFS – They’re Not The Same! (via Documenting M.E.)

Brooke hosts this very new blog, intimately sharing her experience as a person with myalgic encephalomyelitis (M.E.) who is currently in hospice care, or, more bluntly put, expected to die from the disease within six months.* That is her current situation, but she is also a person who loves dogs, languages, poetry, nature, and music. Regarding those interests, I feel like I just wrote an explanation about myself! I’ve enjoyed her few new posts ranging from recaps of who she is and has been, facts about the disease, and how hospice care can be of real benefit. I feel she has a valuable perspective and I expect however many entries to follow will continue to be enlightening and authentic. I also admire her idea to start something new when some might raise the idea of it being “too late”–her choice to express herself is testament that we are always, always evolving. In the entry I’ve chosen to reblog here, she explains the huge detriment of calling Myalgic Encephalomyelitis “Chronic Fatigue Syndrome,” the harm it has caused patients, and how that ever came to happen.

a rainbow at night

“ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as ‘MECFS,’ ‘CFS/ME,’ etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

“Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means ‘muscle pain and inflammation of the brain and spinal cord.’ It’s a perfect fit. In 1969, the World Health Organization (WHO) recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.

Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. … There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked. “Read more

via Documenting M.E.

ETA, Feb 2016: This didn’t happen and Brooke is still with us–not necessarily “fortunately,” if you know what an excruciating disease this is–because the final stages of M.E. do take years, which both her and her doctor were aware of at the time. However, she at least was able to enjoy six months of supremely attentive hospice care, which is more than 99% of people with M.E. ever receive, even though countless need it. Her doctor remains an integral part of her care to this day, including home visits, as she obviously cannot as much as leave her bed, much less her house, to go see one.

I’m No Longer at War with My Body

© a rainbow at night

Today marks the 11th year of my getting the virus that triggered M.E. — 13 years total of living with chronic illness.

And I feel really good right now, emotionally. Like I’m doing everything possible to ensure my body will function its best for as long as it can. I sleep enough, eat well, get proper nutrition with lots of what I need and still have things I enjoy, like ice cream. I drink a lot of water, supplement for my genetic things and muscle dysfunction with the appropriate foods and pills, but have medicine to reduce the inflammation. I also take what I need to help out my neurotransmitters, and manage severe pain. My feet get massage to slow the neuropathy. I get whatever exercise I can without causing disease progression. I do tai chi to balance my energy and improve my strength, balance, and muscle tone. (ETA: It took me a long, long time to realize, but this was a bad idea. I thought it was gentle enough to not cause relapse, but after the THIRD time I found myself worsened for weeks or months after a week of very, very gentle tai chi, I figured out it was the tai chi.) I do stretches, and walk, and a very small amount of yoga (just the poses I enjoy). Spiritual fulfillment is number one in my life and sets the stage for everything else.

I like taking care of myself. My eyes, my teeth, my skin. It can be a chore on some days–and during some seasons, most days–but I enjoy it.

So many years were spent in a battle against my own body, trying to take care of it even as I pumped my blood full of toxic medications to fight the infections that were trying to survive within me. And because of that, I’m still here. Ironically, they’re still here, too.

But that season of my life has passed, and now, it feels so good to just take care of me, to really take care of me, and know that everything I put into my body and do for it is going to help it do its best for me (which in turn, is the best for others, also). Because that’s all I have left. I love the amount of self-compassion I’ve been able to cultivate and harvest, not just in the past few years in general but since being off of Lyme disease treatment in particular. There’s something about not having to focus on pathogen elimination that’s very conducive to self-love. Even as any or all of my diseases advance, I’m not “losing the fight” in any way.

It’s amazing after all these years, even with all of my symptoms, to finally not be at war with my body.

What do you do for your body that makes you feel good about taking care of it, so that it can take care of you to the best of its ability? How do you help it along?

a rainbow at night

My year so far, after choosing to truly Live.

Thoughtful

I’d like to start out this post with a bit of astrology, because I think it perfectly describes how my year has been thus far. (Bear with me!)

“Get ready to dig deeply in 2013, Leo. You’re going into a phase of complete and total metamorphosis. This will require considerable self-analysis and probing into your past patterns, but all the work will be more than worth it. You’re on the verge of discovering just how powerful, strong and resilient you are at your very core. If you have ever doubted your strength, after 2013 you’ll never question your resourcefulness again. Saturn, the great karmic lord of trials and tribulations, will be camping out at the base of your horoscope until 2015, so you’ll have plenty of time to delve into the depths. Family issues and psychological patterns inherited from your parents will come to the surface this year, making your more aware of — and able to avoid — negative patterns. Wake up, Leo! Get ready for a major rebirth.

Lucky Jupiter will continue to bring good fortune to your social sector and help you dream big until June. You’ve been so blessed with the amazing people you’ve met over the past year who have helped you reach your goals. The second half of the year, you may want to pull back when Jupiter enters your retreat zone. This is a time of dreaming and scheming before launching into the next chapter of your life in 2014. So the first half of the year will continue to be incredibly social, but give yourself permission to come back to a more internal and creative space during the latter part of 2013.

The eclipse patterns of 2013 will shake up both home and career sectors, so get ready for rapid advance and decline in both arenas. Don’t get too attached to any of the gains or losses in either of these life departments, as they will constantly be in flux until you reach a healthy middle ground — and you will!”

I was expecting such a popular site to conform to mainstream and just dish out stereotypical messages, but that right there sums up everything I’ve felt about this year, all the way down to the little details! In June, I even talked to my friend about finally becoming settled and just resting starting in July–after the busy first half of the year, it’s what I want, now–and even THAT is in there! Incredible. I encourage you to click and see if yours applies as much as mine does!

Lion representing the Leo sign in astrology. (...

So, if you’ve been following my journey through the year so far, you’ll know I stopped treatment for late stage Lyme disease in October of 2012. After several months of grieving, I decided I was going to truly live, because I don’t have time to wait anymore for a better day when I might feel better. I also have Myalgic encephalomyelitis, for which there is no cure, and bartonellosis, which was once cured but now has crept back out of remission. I’ve been focusing on symptom management and taking care of myself as best I can with food and whatever “exercise” I’m able to handle. Because of the incredible planning skills I’ve accumulated over the past thirteen years of chronic illness, but most importantly, proper pain management, I’ve been able to put all my spoons in one basket each month, and have incredible adventures. I attempted them even at the risk of symptom progression because realistically speaking, there will be no better time than right now. The past six months have been my surge of energy that comes from stopping toxic treatments, and I used it well.

Life is a precious gift. Don't waste it being ...
Life is a precious gift. Don’t waste it being unhappy, dissatisfied, or anything else you can be (Photo credit: @Doug88888)

In January, I met my extended family for the first time (yep). February was pretty rough and scary, after having to be on antibiotics for a week to get my teeth cleaned, finding out I had a new genetic diagnosis, the passing of a friend, and the one year anniversary of the passing of my Dad. So most of it was spent in recovery. But I did celebrate Valentine’s, Mardi gras, and a friend’s birthday to the best of my ability. In March, a good friend came to stay with me for a month, and we had innumerable outings to parks, new restaurants, coffee shops, and a beautiful experience at the orchestra. In April I went to see a world renown ballet group (my first trip to such an event in at least twelve years), sitting front row balcony because a wonderful family miraculously had a spare seat; they turned out to be the same family who was sitting behind me the night I went to see the orchestra in March! I also met two amazing local friends with whom I had several lovely visits.

In May, I went with a friend from Florida to see the Dalai Lama, and as if that weren’t enough, perused my favourite city on a vibrant Saturday night, admiring the culture and appreciating everything; I watched the sun set from the top of a seventeen-story building. My family hosted a garage sale for me and I got rid of 90% of my stuff. I went to the aquarium for the first time in seven years, with friends I haven’t seen in eight years, and some new friends. In June I went BACK to the aquarium with my family, which, if you knew how rare it was for all of us to be free at the same time, you’d understand to be something of a miracle. Then my best friend came from across the country to visit with me for a week; several times we stayed up til 5am giggling at nonsense like we were teenagers. I witnessed the historic removal of DOMA and Prop 8 from our country’s legislation. I planted sunflowers. I received a message from my all-time favourite musician via Twitter. And I rediscovered my love of electronic music.

As I said, in July I began resting, but something incredible happened, still. The love of my life, the best friend who stayed with me in June, told me she loved me, and since I’ve also been in love with her for the past year, we became a couple. ❤

Even still, each month I successfully set out to watch one new movie in theatres, “read” one new audiobook, and eat at one new restaurant. For now, I take a much-needed break, as my body tries to hold itself together after all that activity. But in August I’m going back to the heart of New Orleans for a week for my birthday, to stay with another friend who is also coming cross-country. And in September I get to spend more time with my girlfriend as we arrange another, longer visit. After that, who knows…

But I’ve been divinely assisted in everything I’ve set out to do, and whether this year turns out to be my last truly being able to function, or just a temporary rut (however doubtful that seems), I can go forward knowing I gave it my all while I still had the chance. I know without a shadow of a doubt that I made the right decision to stop treatment and focus on having a life.

I have more to say, how symptoms are going, what happened with the doctor who wanted to erradicate some of my nerve endings… But that’s for another post. To be continued…?

a rainbow at night

Advance Directives and Treatment Planning, Part 1 of 2: Myalgic encephalomyelitis and Lyme disease

[ estimated reading time: 4 mins 34 sec ]
Updated Feb 12, 2016

There’s every possibility that I could be involved in some unexpected incident–a car crash, ANOTHER tree trying to land on me for a THIRD time, an abrupt, rapidly-progressive infection that takes me out overnight–but those aren’t the most likely situations. The only thing that makes sense for someone in my situation is to plan for some type of gradual decline.

I’ve had a living will for years, but someone’s situation recently made me wonder if what I had written down was specific enough to fully protect me. Living wills only cover you if two or more physicians declare your case terminal. If you want someone to express your wishes in the event you cannot communicate for yourself but aren’t yet deemed terminal, you need to declare someone your medical power of attorney. Not your power of attourney, but your medical power of attourney. You can also include in writing what you want just like a living will, and that’s a very kind thing to do for your family so they can have physical proof of your wishes.

This is especially important to me right now because it hit me that doctors just aren’t used to dealing with cases like mine. I’ve seen that time and time again over the years. Most physicians I’ve seen can’t even understand how I dehydrate so quickly. Too many times, I’ve even been told my symptoms are “impossible,” yet here I am. That doesn’t give me much hope for other situations, so if I want the best help in the event I’m unable to speak for myself–a situation which can and does happen to people with both severe M.E. and Lyme disease–I have to include specific instructions and appoint a Medical Power of Attorney.


In my current condition, where even half a child’s dose of the most basic antibiotic causes me immense suffering, I need to check the “no antibiotics” box, in the event my doctor wanted to try them in some optimistic attempt to save my life. The hospital won’t understand the consequences of someone like me going through something like that, but I do. For instance, I recently had to take ONE olive leaf extract capsule to quell the a relapsing h. pylori flare up, and ever since, my head has felt like it’s going to implode, even more than usual. That’s not even a prescription antibiotic! These extreme inflammatory reactions–herxheimer reactions–actually hospitalized me for five days in 2011, and that’s when I was able to tolerate treatment!

And if I’m unable to communicate, at what point will I think it’s no longer worth it to continuously visit the emergency room for IV fluids? When things got bad in previous years, I was going every two months, via ambulance, because the dehydration was so sudden and so severe. Right now I’m okay with that assistance because I’m still functional and it helps me bounce back. But at what point would I have to say, “This is just too much, it’s only prolonging my suffering; no more fluids, just keep me comfortable“…?

What about breathing assistance? I like the nasal oxygen, but I’m against any ventilators or breathing machines.

And I know I don’t want to live off of a feeding tube, if I’m otherwise completely incapacitated. To me, that is when it’s time to let nature take its course. People with severe M.E. are faced with this particular decision often. Many concede to a feeding tube in hopes of getting better later, or because they’re still able to participate in life in some accommodated way which makes it worth it to them to stay around. But I wouldn’t see a point, if I had so much else going on. Plus you have to add my Lyme disease to this… I think I’ve been through enough.

The only reason myalgic encephalomyelitis doesn’t kill more than it already does is the availability of life support measures. Otherwise, there would be many more people–all or almost all from the 25% severely affected group–dying of wasting syndrome, dehydration, inadequate oxygenation of the major organs, and infection.

And what about a DNR/Do Not Resuscitate? If/When my heart were to go into life-threatening arrhythmia, do I want them to try to “help” me? Right now, I say yes. But later on, I might want to sign forms telling emergency dispatchers to not electrocute me or break my rips trying to “revive” me.


There’s no way I can predict right now when I’ll decide enough is enough–these decisions can’t be made overnight–but I do know when I reach the point of not being able to communicate with my loved ones, that will probably be the breaking point.

I do not want to continue past the point that I cannot communicate, being kept alive only by machines and tubes, and I don’t think it’s even natural to want that, when the body is obviously trying to pass on in a way that would actually limit the suffering involved, if only we’d get out of its way.

We should all think about these things, whether severely ill or not, to help relieve the burden on our families when that time comes.

“The suggestion that modern western medicine can and has made life easier is countered with the fact that sometimes, it can prolong life too far, and then allows more suffering than was necessary. It is up to each person to decide what’s enough.” *

To be continued…

a rainbow at night


* Thank you, Ruth. I haven’t read the book so I can’t comment on it, but this statement was perfect.

What My Pain is Actually Like

It occurred to me one day several months ago that I’ve never stopped to answer a question people may have, the same question I often wonder about others in my situation: When I talk about being in pain, what am I actually talking about?

In my case I’m talking about severe head pain, and what some call “malaise,” but… Malaise is what you call it when you are sick and you feel “off,” and unwell, and basically.. gross. It’s also a term you can use for having something as simple as a cold or as insufferable as end-stage AIDS, much like a fever has drastically varying levels of severity.

In “malaise” standards, what I feel is like my immune system is fighting to save my life but it may or may not actually take me down with it. Most types of pain are usually localized, or at least, if it’s everywhere it’s an identifiable ache. This? Maybe I should invent a new term.

Deathlymalaise. Yeah that sounds about right.

What happens in my newly coined “deathlymalaise” (feel free to use that), is this:

  1. I always have “the” headache with it, the one I’ll discuss in a moment.
  2. I have a low-grade fever, and I alternate rapidly–or maybe there is only the sensation of rapid cycling–between uncomfortably warm and sweaty, and clammy, cold, with freezing and numb extremities. It’s like when you have the flu and every five minutes you’re either tossing the blankets across the room or clambering to collect anything made of fabric and burrito yourself in it. My GP says this is my immune system. Apparently it’s trying to figure out what to do with itself.
  3. I feel dizzy and there is often a “buzzing” sensation, but whether it’s nerves sending wrong signals or my vascular system trying to sustain normal circulation, is anyone’s guess.
  4. My lymph nodes, particularly the axillary and cervical nodes (under your arms, and around your neck), have a constant, dull ache, and get stabbing sensations.
  5. I get muscle spasms in my neck, back, and all around my abdomen in general, that are so sudden and severe I usually end up screaming.
  6. I feel a burning sensation in the nerves in my face, as if they were on fire from the inside-out. I think it comes from the same inflammation responsible for my headache. The trigeminal neuralgia is thus usually activated and I have to stop myself from clawing at my face–that wouldn’t help much, now would it?
  7. I feel as if I’m going to vomit, but I won’t let that happen–I take Zofran as necessary.
  8. My joints–moreso on my left–swell and get stiff, difficult to bend or move.
  9. There is substantial fatigue during these “bursts” of deathlymalaise, but sitting or–more appropriately–lying in one place is usually not an option because this is the kind of suffering that, on the pain scale, would be at the level that it interferes with your every thought.

I’m a complete and utter wreck. And please remember, this list is only covering the malaise part of the illness, something that has been very prominent since The Big Relapse. It’s not medication withdrawal, because these symptoms are part of the reason I started taking anything to begin with, and it’s not herxing. It’s just disease. It makes me uncomfortable to even type that, but it is what it is. I can’t sugarcoat something like this.

[ETA, 2016 Feb] In Dr. Hyde’s book about Myalgic Encephalomyelitis (which back then in 1992 he abbreviated as “M.E./CFS”), he describes our malaise like this, under “Pain Syndromes Associated with [M.E.]”:

” ‘Malaise has probably occurred in every [ME epidemic] described in the literature.’ Malaise is accentuated in the Initial Stage and it recurs for as long as the disease process exists. Malaise is almost impossible to describe. It is often referred to as the pain and discomfort that one has during the acute phase of an influenza. However, it is not always the same. The patient feels terrible, feels as though he is about to die.

“It particularly injures the sensory and dulls the cognitive abilities of the brain. The pain seems to originate everywhere, both on and within the chest and abdominal areas, head and extremities. The rapid muscle and brain fatigue that is normal in [M.E.] becomes accentuated.”

As you can see, what I described when I first posted this in 2013 is almost exactly what Dr. Hyde wrote; I was absolutely floored when I read it, and honestly, most of the book is like this: full of specific, uncanny validation about all the quirky things that occur in this disease. If you have M.E. I highly suggest you buy it while it’s still available.

Some of the other things I wrote are very specific of Lyme disease, such as the burning in my face where the infection damaged multiple nerves, and the “buzzing” sensation, which many Lymies describe as, it’s like you’re sitting atop the hood of a car while it’s running. [/ETA]

I usually feel aghast–but almost in awe–at the reality that a person could possibly feel so horrendous, and helpless at the thought that a hospital–the place you’re raised thinking can always help you during any health crisis–cannot do anything, because there is nothing to stop what’s happening. How do you explain to someone how terrible all that feels, with the word “malaise”?

Several of my friends who also live with Lyme & Company admit to feeling this, some even writing letters or notes to loved ones during the worst “episodes” because they think surely something must be about to go very, very wrong for the human body to give out all these warning signals.

They usually say, “I feel like I’m dying.”

We really do.


The progression of my headaches has been a monster all its own. Their onset began with occipital neuralgia four months after my tick bite, almost seven years ago. Bartonella came with its own, mostly frontal-oriented headaches; I don’t have those any more. But almost without fail, I have had a particularly severe headache for 4-5 consecutive days every four weeks since the Lyme invaded my nervous system. Now, that exacerbation happens about every two weeks, thanks to the Mycoplasma (or at least, I assume).

I used to requite prescription-strength medications for breakthrough pain only a few times a year for the attacks of occipital neuralgia. As things steadily progressed (especially within the past two years), I went from needing them an average of 1-3 days per month, to having 3-week-long bouts of unrelenting head pain which alternated with 3-pain-free weeks, seemingly for no reason. Now, since my relapse in October, I’ve needed them every single day except 1-3 days per month. I guess all of this is why needing them so much frightened me: I wondered–and still wonder–if there is no turning back from this point. Regardless…

This head pain is a throbbing sensation at the back of my head, the base of my skull and down into my neck. I wouldn’t outright call it occipital neuralgia, because my attacks of O.N. are even more severe and almost completely untreatable. But otherwise, it’s just like them. Baby neuralgias? They even exhibit the so-called “ram’s horn pattern,” and the top of my head often goes numb, and I am sensitive to anything touching my scalp. There is no sensitivity to sound, but extreme sensitivity to light. I get bursts of nausea. Since vasculitis has been such a major feature of this relapse, these “headaches” may have some vascular component.

As of right now, later this month my pain management doctor wants to try a shot in my neck. I’m uncertain is he intends a nerve block for O.N. or another route, but since this has gone on so long, it’s time to try something new.

 

There’s not really a pretty way to close this article. But when I talk about being in pain, to all of this is what I refer.

a rainbow at night

What do you really want your good health for, anyway? (Don’t wait.)

It probably shows in my recent posts that I’ve gone through a lot of changes in the past few months, physically and mentally.

When you’re in treatment for an illness like chronic Lyme disease, ideally you have to put off certain goals or extra activities because letting your body heal is the priority. And when you have something like myalgic encephalomyelitis, you shouldn’t push yourself too much because abstaining from chronic over-exertion will give you the best long-term prognosis; repeated self-induced “crashes” will harm you.

But faced with two relapses, the possibility of another gradual decline, and the complete mental and emotional exhaustion that arises after four consecutive years of fighting for your life, I came to some big conclusions in early December:

This is the only life I have, it’s okay to make whatever decisions I think are necessary to live it, and I cannot put anything on hold anymore.

There is no longer a “things I’ll do when I get better” category in my brain. And it’s not that I don’t believe I can get better–I believe anything is a possibility.  (And how I love that word. “Possibility.” Almost as much as I love the word “indefinitely.” Indefinite possibility means, at once, what is uncertain is also limitless.) But like I said a few posts ago, even looking forward positively is still not living in the moment. You can’t get caught up in all the things you’re looking forward to having or being or doing, because you’ll miss the opportunities of the only life you actually have–the life you’re currently living.

Besides, what do you really want your good health for, anyway? I realized that many of the things I wanted to do were still possible if I just went about them a different way and stopped waiting for that imagined “better time” in the future… A future I’m not even guaranteed to get.

Would you live your dreams? Well, find some that are still achievable, and get started. If there aren’t any, create new ones.

Would you spend more time with your family? You can still prioritize that, you just have to do it differently than when you were “healthy.”

Would you be a better spouse/parent/friend? Don’t wait to unveil that version of yourself you’ve always imagined. They’re in there, and you can get closer to being that person moment-by-moment.

Another thing I learned is that I can’t expect people to understand where I am with this, if they haven’t been here.

My blog is (for my expression, but) less for people who are just now starting their fight than it is for people who have went a few rounds with their disease until they had to just Let It Be. I’ve had people think me delusional for their lack of understanding, just as I probably would have thought of someone like The Current Me, back when I was just starting out. And that’s okay. I hope they find this place gracefully if they also end up navigating it.

So with that in mind, I made some resolutions for this year. To be continued…

a rainbow at night

“All is well, and has been, and will be.”

[ estimated reading time: 6 minutes 26 seconds ]
This year I learned that looking forward is still looking away from the present.

Even looking forward positively, is still not living in the moment, not looking at Now. You can’t get caught up in all the things you’re looking forward to having or being, because you’ll miss the opportunities of the only life you have: The one you’re already living. It’s good to have goals! But, for some things, it is not the end result that is most important.

I’ve been noticing that now it no longer serves me to see this “attack on Lyme” as a battle to be won, where anything other than eliminating the bugs is a failure. That cannot be my focus anymore. It’s not my focus in dealing with M.E., and it cannot be my focus for dealing with neuroborreliosis, either.

I used to be okay with waking up every morning knowing I had a war to fight. Because for a while, it really was a war–beat the bartonella, do whatever I had to in order to get it under control, or it would very quickly be the end of me. And like a patient recovering from chemo and radiation, my body paid the price of all the medications needed to do that. But at least I’m still alive. I did it! I just can’t “win the war” against the Lyme that way…

I’ve had to stare reality in the face for the past several months and recognize that I may not “win the war” at all, at least not in normal standards. I have to redefine what “winning” means to me.

 

This is not a disease I can conquer forever with a few rounds of treatment. With my immunodeficiencies, very neurologically-oriented six-years untreated strain of infection, ten-year history of M.E., and twelve-year history of just trying to stay stable every single day, my body has been through a lot. So, to be perfectly honest, I may never get rid of Lyme disease. But that doesn’t mean I’m going to just let it take over.

I just can’t look at it like my goal is to “win,” where winning means nothing short of slowly eradicating the infection, because truly, why would I do that to myself? Why would I invest all my energy and focus into something that, for all intents and purposes, probably isn’t even possible anymore? Why would I do that, when there is another way, a way that brings me peace and also allows me to treat my disease?

Because that’s what I have left–I have a treatment, not a cure.

I used to think it could be a cure, because for most everyone, it is. Even if they find it late in the game, many will just have a longer battle to fight, but they can “win.” They can get IV antibiotics if their case is in their CNS, or they can at least take loads of oral antibiotics to make sure it dies and stays dead. That is possible, even for many with coinfections. But me?

Even if I could get IV antibiotics, they would probably kill me in the process; even oral antibiotics are almost impossible. (Almost.)

Maybe if Life had shown me the infection earlier, we could have cured it, even with all my additional factors. But that didn’t happen. I’m only thankful It brought information my way when It did. I am glad bartonella and mycoplasma happened, to alert me that I had something else going on that was about to irreversibly damage my body. I’m glad I am someone who pays attentions to those things, or I wouldn’t be here right now. But that’s the thing: I am still here, and I still have a life to live…even if it’s not the one I imagined!

 

I naively thought that when you go through something like this once (getting diagnosed with M.E.), twice (getting diagnosed with Lyme disease), it might be over, the whole “massive illnesses that alter the course of the rest of your life” thing…

But that wasn’t true, either. It took me almost a year to come to terms with the Lyme disease diagnosis, because inside I knew if someone like me had it, it’d probably be with me for life. I didn’t want to accept that. Then once I started getting better for a while I thought, okay, it’s not too late for me, there is still hope! And back then there was hope because it’d only gone untreated three years! And even now, I haven’t given up… But like I said, looking forward is still not looking at what you already have.

Someone shared with me a Žižek quote that pretty much sums up everything:

“Our desires are artificial, we have to be taught to desire.”

I was taught to desire an eradication and to accept nothing less. I was taught that if I did certain things, then things would work out, go the way I wanted. I fixed my focus on “I can get better again if…” and put in my head a bunch of things that could happen, should happen, that would allow me to have the life I wanted. And I went after them, like anyone would…

  • “If I eradicate the bartonella…” I did, and my reward is Life.
  • “Then I can get the Lyme disease under control…” But I cannot handle the treatments anymore.
  • “Because a lot of people with M.E. experience another remission after about ten years.” But I relapsed, instead. Twice.

 

Things didn’t go how I planned, how my doctor planned, how my friends and family planned. But my life is not over. I just have to come to terms with my new reality–a life with Myalgic encephalomyelitis, and a life with chronic relapse-remitting Lyme disease. I may eventually get a diagnosis of multiple sclerosis at this rate, but at the very least, that disease does not face the same mockery by the medical establishments (or insurance companies).

I have fought well and hard for the health I do have, and I will continue to fight to keep it, but I will not, cannot, see this as a “daily battle to win the war,” anymore. It is not. Now, it is better for me to wake up and think about my other goals, and have “treating Lyme” as just another part of my daily regimen, a part of my life that will never change just like having M.E. will never change. I cannot give away all of my spoons to treating a disease that will still be around after the fact.

“You are here, in this moment, able to do so much that’s worthwhile and fulfilling.

“Your life has real purpose, and when you let go of the superficial concerns, you can feel and know and follow that purpose. Life is beautiful, and by taking the time to look closely, you can see the beauty everywhere.

“All is well, and has been, and will be. The genuine goodness within you refuses to be compromised by any of the world’s ups and downs.”

“Go ahead, step forward, and live with total, solid confidence. Let every thought and action be filled with positive purpose and the knowledge that ultimately, you cannot fail.” (Ralph Marston)

My disclaimer: If you’re a fellow patient of Lyme, I beg of you not to take my own need for expression and use it to convince yourself that there’s no hope for you. You and your doctor can only figure out what’s best for you after a careful analysis of your individual situation. I’m not even saying there isn’t hope for me, but I’m fully aware of how some people think and thus how everything here might come across… It actually stops me from writing sometimes, but I don’t want that anymore.

Expect to see more of my uncensored thoughts in 2013, and stay strong, no matter what decisions you get to make. :)

a rainbow at night

Relapse Journey: Is Choosing Treatment Still Choosing Life?

Here, let me type this so you all won’t think I live in a happy-land bubble. (That’s not really why I’m typing this, but it’ll probably confirm it unintentionally.)

This relapse has sent me on quite a ride, physically and emotionally. I did need to take the full two weeks off of treatment, and I’ve only been back on treatment one week before hitting the point of “why am I doing this,” because I’m still relapsed, feel like hell, and I can’t handle this. I’m generally better than I was during the initial crash, but I haven’t bounced back from that point, yet. And the pain…

I have been on twice my usual pain medications, every day, for almost the entire past three weeks. I think there was maybe one day I was okay without anything (and I really wish I knew how it happened!). This has mostly resulted in me subjecting myself to psychological torment over needing them. I used to be able to take breaks from ibuprofen, for the well-being of my stomach; now I cannot. I used to be able to take Lortab (vicodin, as most people know it) once or twice a week to get through the worst of things; now the pain is so bad I cannot function without taking it daily.

Even typing that–that I can’t function without painkillers right now–makes me feel guilty!

In my head, all I hear are family members who took them, who REALLY DIDN’T need them and therefore think no one else actually does, either; other spoonies who have said incomprehensible things like “this suffering is unbearable but I ‘don’t believe in’ taking pain medication”; and society saying that anyone who takes Vicodin is probably one step away from being House, MD during one of the really bad rehab episodes. So yes, cue the shame over needing something to make it through the day, when I previously could just tough it out.

I’ve done a lot of thinking about this, dissecting it from various angles… It’s like I feel I am somehow responsible for needing it, as if I did something to make this happen instead of realizing my body is severely ill. Well…

My favourite quote is the African proverb,

“When there is no enemy within, the enemies outside cannot hurt you.”

Which translates to: Someone’s ill-conceived judgement of you is not going to hurt you unless you actually believe what they say to be true. I even wrote it on my mirror in dry erase marker a few months ago, to remind me of it. This helped me realize that it wasn’t what I thought everyone else was thinking that bothered me–it was actually what I was thinking about myself. I was the one condemning me, not anyone else.

The people who love me were actually very glad I had adequate pain relief! It was (is) the only way they’ve gotten to see or hear from me at all the past three weeks!

It all boils down to a loss of control, I think.

  • Maybe I’m just not ready to accept that I’m still under the effects of this relapse and haven’t bounced back from it yet.

  • Maybe I’m scared my disease is worsening or my Lyme treatment isn’t working or has done all that it can do.

  • Maybe I’m uneasy because I’ve never been dependent on a controlled substance before.

  • Maybe I’m not ready to accept that I’m a chronic pain patient again.

  • Maybe it reminds me that things WILL eventually get worse.

  • Maybe I’m scared that there is no turning back from this point (even though there probably is).

These are the ways relapsing makes you feel. I’m frustrated over my Lyme treatment, and all these medicines, and I’m just.. so tired of all this. I’m so tired of this fight to prolong my life.

Sometimes I just want to stop taking everything and see how far I make it. But I also feel that’d be almost the same as suicide.

I just think, Well, if I’m going to keep going downhill, at least let me not fight/make it happen even quicker; it’d be better to enjoy what I still have than waste what’s left on a battle I can’t win. My doctor once told me that, even. If the treatment is as bad as the disease itself, to weigh my options. Treatment for chronic Lyme disease is like chemotherapy for cancer; don’t let anyone tell you differently. And even if you get relatively symptom-free, it can always come back. My old bartonella infection could always come back, even.

So for now, I’m returning to once-a-day Biaxin for the Lyme disease and Mycoplasma treatment. It’s either I go back to that, or I stop treatment completely. I’m emotionally worn out from getting better and then relapsing, with each event being worse than the one before it. (Quite a predicament to be in when my subset of myalgic encephalomyelitis is relapse-remitting–that’s pretty much all that my future holds!)


This might all seem like a 180 from my last post, but it’s not. Maybe I had to express how grateful I am to be alive, so I wouldn’t think this (what I’m feeling) was because I wasn’t… Because I am grateful, and all of this isn’t because I’m not.

My being thankful to be alive and also tired of fighting are not mutually exclusive.

I am so happy to still be here, to have all these things that help me, and people who love me… And sometimes, I just want that to be enough. Sometimes, I just want to embrace my accommodations, enjoy what I have, what life I have left, and live out the rest of my days in as much peace as possible, without the fighting to stay alive part every day, without the medications that are keeping one disease from progressing but which may be setting me up for worser things in the future.

The choice is ultimately mine, I know.

I don’t often say this, and it might be a bit crude, but I should get an award for not offing myself yet. I have friends with this disease who have tried, and friends who have succeeded, and I don’t blame them at all. No, I don’t blame them at all, in the face of a disease that takes you oh-so-slowly. To hold on when there is little hope of a cure, and you know what you’ll face later on: that is a true survivor, no matter what the disease does to you.

Well, actually, I did get an award; a blog award, and I’ll talk about that… In my next post. Along with some facts about the me, the person behind the blog.


For others going through a relapse right now, I offer you this:

What is a relapse?
It is an unexpected deterioration in the condition of a sick person after partial recovery.

Conclusion: A little Allegory
Imagine, if you can, a tranquil English breakfast table. The kettle steams, the electric toaster is in action, but someone forgets to adjust the thermostat. Suddenly the smoke alarm shrills from above and is wrenched from its socket before upsetting the neighbours.

Despite our wonderful self-regulating kitchen gadgetry, all is in chaos! In future, pay careful attention to your body’s thermostat, your daily variation in energy and activity and remain grateful for the commotion set up by your immunological stress alarm if it prevents another set-back. Good luck!

http://www.tymestrust.org/pdfs/nosmoke.pdf

a rainbow at night

Attention: I’m not suicidal.

Mycoplasma and Reflections on Having PANS/PANDAS

The most important thing to report this time is that my random cough continued to be persistent and began to worsen, so I saw my primary physician who says I now have asthma. (Well, asthmatic bronchitis–two in one, aren’t I lucky!) If I were to assume this to be infection and/or herxing related, I would say this:

Since I’m fighting Mycoplasma pneumoniae, a bacterium that usually causes pneumonia (but also loves to attack your nervous system), my best guess is that treating this beast has caused a lot of herxing/die-off/inflammation in my lungs, where it’s most likely been hiding out, at least partially. And said die-off may be causing the inflammation that’s triggering this asthmatic response… I mean, it can’t be any coincidence that as soon as I start trying to kill the pathogen that has caused lung problems for me in the past, I get inflammation in my lungs. Right?

But if that’s not it, then I have genetics to thank. I’m going to go with “will hopefully go away as I treat Mycoplasma” theory until it proves itself otherwise. At least I’m not having any trouble breathing. I just have this cough, which, after three days on Dulera (which is literally just my Nasonex in an inhalable form…mixed with formoterol), I’m much, much better. :)


I’m convinced I had PANDAS (PANS) as a child; it just wasn’t a diagnose-able condition back then. If so, then I definitely still have it, because my body has clearly reacted the same way as an adult. This might sound like baseless self-diagnosis but this will make sense as I’ll discuss further below.

It stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections,” and is basically what it sounds like: An autoimmune response to strep that causes damage to the brain, primarily resulting in neuropsychiatric illness like obsessive-compulsive disorder and tic-disorders like Tourette’s Syndrome. (PANS refers to “pediatric acute-onset neuropsychiatric syndrome,” the same as PANDAS but without being caused specifically by streptococci.) In the “My Story” section, I ponder over whether or not something triggered my childhood-onset disorders of OCD and Tourette’s Syndrome, whether that might have been a brush with tick-borne infection, or something similar. After realizing there is an actual condition that does exactly this, it all makes too much sense:

  • my primary immunodeficiency disease makes me extremely susceptible to infections (especially Strep)
  • a history of autoimmune responses to things (like vaccinations)
  • the fact that both my OCD and Tourette’s were acute-onset
  • those conditions flare up whenever I get additional infections, especially bacterial

As Lisa Wolk-Kilion writes for one national magazine:

“Although the word ‘pediatric’ is in both names, it is surmised that the disease is not merely a childhood one. . . The encephalitic-type illness is brought on by an infection, resulting in antibodies that barrage the basal ganglia. … Once the autoimmune system is damaged, any germs can trigger a PANS flare.”

So, an autoimmune disease that responds to infection by attacking your own brain, instead. I was practically a walking target to get myalgic encephalomyelitis in the future, wasn’t I? :\


On that note, I have to state the obvious, that Mycoplasma and Strep are very similar in this respect: They usually cause upper respiratory infection, but in the immunocompromised, they can wreak havoc everywhere, especially the nervous system. You know what happened to me when I got both Bartonella and Mycoplasma a month apart from each other in 2008? My Tourette’s syndrome and stuttering flared up so bad I could barely talk for three months. I also got extremely paranoid, showing clear neuropsychiatric involvement. Additionally, that’s when my movement disorder began worsening. I had the beginnings of the dystonia since getting Lyme disease (even though I didn’t know I’d gotten Lyme, yet), but after those two infections, things progressed very quickly. (The Tourette’s and stuttering eventually died back down, though they love to pop up at random, especially when I’m under emotional or physical stress.)

Treating Bartonella helped the dystonia symptoms A LOT…a lot a lot. But the thing is, the antibiotics that treat Bartonella are the same antibiotics that treat Mycoplasma (or at least the ones I was on, except for Bactrim), so I have no idea of knowing which infection is responsible for it. It’s not gone yet (as evidenced by my oromandibular dystonia showing itself more lately), but the worst parts of it stopped progressing after a year on Rifampin (with other antibiotics).

This is one of the reasons I can’t type up a post explaining my Bartonella experience and treatment: Because even though I can pinpoint a lot of which symptoms were caused by Bartonella–especially the ones that recurred every 5-7 days–I have absolutely no way of knowing exactly which infection caused what, specifically in regards to my dystonia and other related movement disorders. Because I got those infections a month apart from each other, and I treated them both at the same time. I can type about my theories, but I can’t put a bunch of information out there that people are going to read, without being sure. All I have are correlations, and patterns, which I happen to have a talent at spotting.

Two years ago I hypothesized that Mycoplasma (which I easily tested positive for on the first try, unlike the others which I had to coax out with speciality labs) was going to play a much larger role in my health issues than I had at first assumed… I had no idea how right that would be.

[ETA 2017: It’s been 5 years since this post and Mycoplasma pneumoniae has now been recognized to be a determining factor in the diagnosis of PANS, which all these additional years of disease and severe psychiatric relapse have unequivocally proven me to have.]

“The association of mycoplasma with diseases like arthritis and chronic fatigue syndrome, which has been implicated with a response of the body’s immune system against its own components, is consistent with the growth and behavior of mycoplasma. The absence of a conventional cell wall allows mycobacteria to penetrate into the white blood cells of the immune system. Because some mycoplasma will exist free of the blood cells and because the bacteria are capable of slow growth in the body, the immune system will detect and respond to a mycobacterial infection. But this response is generally futile. The bacteria hidden inside the white blood cells will not be killed. The immune components instead might begin to attack other antigens of the host that are similar in three-dimensional structure to the mycobacterial antigens. Because mycoplasma infections can become chronic, damage to the body over an extended time and the stress produced on the immune system may allow other microorganisms to establish infections.
“Strategies to eliminate mycoplasma infections are now centering on the strengthening of the immune system, and long-term antibiotic use (e.g., months or years). Even so, it is still unclear whether antibiotics are truly effective on mycoplasma bacteria. Mycoplasma can alter the chemical composition of the surface each time a bacterium divides. Thus, there may be no constant target for an antibiotic.”
Mycoplasma Infections via Encyclopedia.com
World of Microbiology and Immunology | 2003, The Gale Group Inc.

If anyone has any experience or information they want to share with me about PANS/PANDAS or similar things triggering OCD and Tourette’s Syndrome, feel free to comment or contact me.

a rainbow at night


Updated December 2015 to add helpful links about PANS/PANDAS
Updated May 2017 to add more helpful links and confirm diagnosis

Relevant Links: