"Have you tried (insert remedy here)?"

Something odd happens when you tell people you have chronic fatigue syndrome.

People’s reactions are not often quite what you’d normally expect following the disclosure of a very serious and debilitating illness. Typically, there are a few standard responses. Below are some of the more common replies I've had in the 13 years I've been ill.

First, there is often laughter. Yes, sometimes people actually laugh. They then usually make a variation of the same joke, something along the lines of "Oh, I think I have that, too!!" Or, "Yes, and don't we all!!" I also once even had someone say to me, "Man, they make up syndrome names for every little thing now, don't they?!"

Other times people are able to restrain their amusement to some degree, and simply smile. They smile because they think you basically just told them that you're a hypochondriac who can't really cope well with life.

And then, of course, there are the rare instances when you meet someone who actually is informed about CFS, knows someone who has it, or who is just generally compassionate, and they thus respond to you with sympathy and kindness. But this happens far less frequently than it really should.

I find that, most often, when you tell people you have CFS, you get unsolicited advice. This used to surprise me: the idea that someone who had no real conceptual idea of CFS or the pathogenesis involved could be so certain they had all the answers for me. I often would wonder if I instead had MS, cancer or late stage AIDS (illnesses that the CDC equates CFS to in terms of symptom severity and disability), would they be so quick to offer a fast and easy remedy?

Now, don’t get me wrong. Most of these suggestions, especially when coming from caring friends or relatives, are all very well intentioned, and sometimes they can actually be of value. For the most part, I find people quite genuinely want to help. And, of course, suggestions from fellow sufferers and others aware of CFS are ALWAYS welcomed. One unquestionably wants to hear what others in a similar situation did with any measure of success. I’m referring here primarily to the passing suggestions of strangers and acquaintances who don’t otherwise know me, or have any idea what chronic fatigue syndrome is even about. And don’t get me started on doctors. ;)

For the sake of amusement, here are some of the more memorable "Have you tried....?" type of suggestions I've received at one point or another in the many years I’ve been ill.

• "Have you tried drinking extra coffee in the morning? I couldn’t get through the day without a lot of coffee either".
• "Have you tried drinking Jolt or Mountain Dew? How about No Doz? That stuff will totally rev you up."
• "You may be depressed and not even realize it. Have you tried seeing a therapist?"
• "Have you considered just taking naps?"
• "Have you tried smoking marijuana? It’s very calming."
• "Have you tried drinking Sleepytime tea at night? It always knocks me out and I wake up feeling great!"
• "You look fine to me. You just need to get motivated!"
• "You probably just need some iron. Have you tried taking iron?"
• "I’d be tired too if I sat around doing nothing all day. Have you tried taking up a hobby?"
• "Are you getting enough sex?"
• "Why don’t you just ignore it? I get tired, too, but I don’t let it interfere with my life."
• "Have you tried splashing water on your face throughout the day?"
• "You just need to exercise! Exercise is great for energy. Have you tried step aerobics? I feel great after step aerobics."
• When magnetic therapy didn’t work for me: "Wow, I'm shocked it didn't help you. Magnetic therapy always helps with fatigue. Have you tried seeing a doctor? You might actually be sick or something."
• "You are lovable and worthy of being well. You know that, right? You won’t get well until you can love yourself."
• "You create your own reality with your thoughts. As within, so without. If you are sick, it’s only because you’re thinking all the wrong thoughts."
• "Have you tried eating sugar for an energy rush?"
• "Have you tried eating less sugar to avoid energy rushes?"
• "What benefits do you think you get from being sick that might be keeping you ill?"
• And among my favorites: "Do you pray? God will heal you if you just pray." (Yes, I pray). "Well, you are clearly not praying hard enough, Sweetie."

Again, I know these suggestions are all well intentioned, of course. With a name like chronic fatigue syndrome, it's easy for people to assume you are just sleepy all the time, as that’s what the ridiculous name implies. And such a problem can surely be easily remedied. After all, it's true: who HASN’T been chronically tired at some point in their life?

But CFS is not about being tired. It's about being sick. It's about immune system dysfunction, mitochondrial damage, and disturbances in the endocrine, cardiovascular and autonomic nervous systems. It's about viral activations/reactivations, gut dysbiosis, orthostatic intolerance, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, glutathione depletion, oxygen toxicity/cellular hypoxia, diastolic cardiomyopathies, and delayed low V02 max (maximal oxygen utilization) following exercise or exertion.

So, as much as I appreciated the above-mentioned suggestions, I'm afraid a cup of coffee and a few splashes of water on my face isn't quite going to do the trick. But what the heck, I'm willing to try anything. ;)

A Note on Lyme Disease

Something I have yet to really mention on this blog is my dual diagnosis of Lyme Disease (which came in 2004 -- eight years after becoming ill). This is in part because I've always struggled with how big a role Lyme is actually playing in my case, and on when, where, how or even if I really have it.

Testing for Lyme is complicated, confusing and not very reliable. False negatives are common. I was negative for Lyme with standard tests through regular labs, as are (from what I understand) most patients if tested years after the initial infection. I tested positive, however, through a specialty lab called Igenex. This in and of itself might leave some doubtful, as Igenex (with good reason) considers certain bands indicative of Lyme Disease that the CDC does not. But I was not just positive by Igenex standards; I was positive by CDC standards as well. Twice. I'm told this is quite a feat, as antibodies may no longer be present so late in the game, and the Lyme-causing bacteria (known as B. burgdorferi) are not always easily detectable. Apparently, they are a bit sneaky, and like to hide.

Given these results, and thus assuming that Lyme is a contributing factor in my case, how did I manage to contract it on top of viral-induced ME/CFS? Two possibilities come to mind. I did once have a tick bite as a child. I was about 11 years old, and found a tick on my back almost immediately after it bit me. It was not engorged. My mother removed it with tweezers, and that was pretty much the end of it. I never developed a rash or any other symptoms, so we didn't think much of it. Is it possible I contracted Lyme then but it remained latent all those years until I got mono, sending my immune system into havoc? Maybe, though I'm skeptical. I was quite vibrantly healthy up until that fateful day I fell sick, and there's no doubt that my illness had a clear and sudden viral onset.

However, for a few months previous to that onset (following a trip to Colorado), I remember feeling unusually tired quite a bit of the time -- almost like I was constantly fighting off a cold that never actually came to fruition. The fatigue was not anywhere near enough to interfere with my life at all, but it was enough for me to take slight notice. This makes me wonder if I may have somehow contracted Lyme during that trip, perhaps unknowingly getting a tick bite while hiking around a bit in the Rockies. Then, when I came down with mononucleosis a few months later, my immune system went berserk on me, ultimately resulting in ME/CFS.

I will never know for sure, I guess. Still, I feel ME/CFS to be my primary issue; not just because of the viral onset, but because I fit that picture so much better than the Lyme one. I don't tend to relate to Lyme patients as much as I do to those with ME/CFS. I don't have joint pain, tremors, numbness (other than from poor circulation) or all that much muscle pain unless I over-exert. Also, if I were to say what my most debilitating symptoms were beyond or even above the severe exhaustion, they would be orthostatic intolerance and post exertional setbacks (a worsening of all symptoms upon even the most minor of activity) -- the latter of which is considered to be the hallmark of ME/CFS. This is true of Lyme as well, of course, but it is something you see more distinctly and profoundly in ME/CFS, it seems.

It's also quite plausible that chronic Lyme is yet another form of ME/CFS; that is, if ME/CFS is caused by an infectious agent (viruses or bacteria), the bacteria that causes Lyme could be one of those possible triggers.

Of course, all that being said, assuming I do have Lyme, it is clearly complicating my case. I have tried a multitude of treatments for it, just as I have for ME/CFS: a growing list of antibiotics, mepron, herbs, diets, protocols, IV's, nutritional supplements and alternative/natural therapies. Thus far, nothing has worked.

So, what do I do after being diagnosed with two illnesses that are poorly understood and lacking in viable treatment options? The only thing I can: keep trying, keep searching, keep looking for answers, and keep hoping.

For a brief trailer on a newly released documentary on Lyme called Under Our Skin (now in theaters), check out the video below. It is a must-see.



*Note: For those who are more knowledgeable about Lyme than I am, please feel free to correct me if I got anything wrong. I am much more well researched in the area of ME/CFS than I am in Lyme Disease. :-)

For those looking for more info on Lyme, please see some of the websites linked on this page.

A Personal Lesson in Humility

The CFIDS Association of America recently took a poll in which, among other things, they asked their members what kind of personal stories they were most interested in hearing about. Not surprisingly, somewhere at the top of the list were stories from those who had recovered. People want to hear about what others did to get better. They want hope.

In that light, one can probably anticipate which stories were among those that generated the least amount of interest. Who did they not want to hear from?  People most severely afflicted with this illness. People who are bedridden. People like me.

Those of us fully homebound with this disease can feel so isolated and invisible. We often (quite literally, in my case) don't have a voice. No one wants to hear our story. Not even, it seems, many of our own fellow sufferers.

But really I shouldn’t have been taken aback by this. After all, when I was still working full time, I often came across stories like mine, and for the most part, I didn't want to hear them either. It was too scary and depressing. I refused to believe becoming homebound or bedridden was even a remote possibility for me, and didn’t want to let the idea of it needlessly enter into my mind.

In fact, when I first got sick, I remember I actively sought out only those who had fully recovered from CFS. Not those who had merely improved, but only those who had completely regained their health. I did this because I firmly believed that was the only possible outcome for me.

People who had fully recovered were difficult to find at the time, but I was not deterred by this. If even one person had been able to restore their health after battling this illness, then that meant I could (and would) as well.

But it didn’t quite turn out that way. Not yet, anyway.

If I could do it over again, I would have been much broader in how and from whom I sought advice and wisdom. I would go back and read the stories of those who had become bedridden, and I would listen to what they had to say. There’s a lot to be learned not just in hearing what people felt they did right, but also in hearing what people felt they did wrong. In many ways, I think I would have gained even more insight from the sickest of patients than from those who had gotten well, because their stories would have humbled me. I would have more fully realized what was at stake, and perhaps been better able to let go of the idea that I was invincible.

If I could speak as myself now to the highly determined young woman I was back then, this is what I might say:

First, don’t worry. If you listen to your body -- truly listen to it -- then it’s extremely unlikely you will end up anywhere near where I am now. Second, treat your body like the temple that it is. Eat healthy, meditate, stay only as active as your body allows, and rest when your body tells you to rest. Never put a job, other’s opinions or anything else above your own health. Similarly, don’t let your ego, your pride, your need to please or your desire to accomplish get in the way of doing what your body tells you to do. Letting my ego, my ambition and my need to please others take priority over my own failing health was, I think, my gravest mistake. It is something I still struggle with on a daily basis even today.

Now this isn’t in any way to say that it’s not possible to recover from CFS. While full recovery is  rare, it is most certainly possible. Nor do I mean to imply one needs to let go of ambitions or stop trying to achieve in any way. Far from it. I certainly have not let go of any of my life-long goals and, given my health, I overcome more obstacles now in one day, comparatively speaking, than I did in a full 40-hour work week. It is only to say I wish I’d learned earlier that, contrary to what I’d previously believed, the course that any given illness takes is not solely measured by the strength of your spirit, optimism or determination. If only it had been that easy. It’s about balance. Balance, pacing, and listening.

Of course, finding appropriate treatments (should they someday exist) would be of tremendous benefit as well. 

In the end, I think the most important thing for all of us, no matter what level we are at, is to stay positive, trust that things will get better, and that the answers will soon come. And, without a doubt, to never let go of hope.