Video: How Lyme Disease Changed My Relationship with Nature (Post Trauma Experience)

Sundays are usually busy days for my blog, so I wanted to post this so people would see it tomorrow, if they happened across my site. This video is not mine! But it helped me feel less alone, because my view of nature has drastically changed. (I can’t even get bit by a few fleas without contracting whatever the little beasts were harboring, much less ticks, which are so much more inconspicuous!)

I am so glad to know I’m not the only victim who feels this way. Normal people (wasn’t I that, once?) just don’t understand.

“I had no idea how easy it was to contract. And that it’s present everywhere. Trees, grass, dogs, people… Just about everywhere. So when I journey out into the world now, wherever there is nature, I have to be extremely careful. And I feel very conflicted, because the very thing that used to soothe me, and give me a place to go and get perspective on life, is now a place of danger. Oh, it always was, I just didn’t know it.

And when I go out, I observe people putting themselves at risk… But I can’t do anything about it.

Because if I say something, people think I’m loony. It’s just simply hard to believe, that you can get SO sick, by being in nature.”

Sometimes I wonder if people thought ticks carried cancer, if they’d be more cautious? Or if it was common knowledge that Lyme disease = Multiple Sclerosis (MS), Parkinson’s, Lou Gehrig’s Disease (amyotrophic lateral sclerosis/ALS), Alzheimer’s, and disfiguring Rheumatoid Arthritis (RA), just to name a few. :\ Chances are more likely than not you won’t ever be diagnosed with Lyme if you’re not looking, but you or someone you love will be diagnosed with one of those (or CFS, or Fibromyalgia), and then what?

Special thanks to LymeDisease.org, formerly CALDA, for sharing this on their Facebook page.

a rainbow at night

How I Forgave the Doctors That Called Me Crazy

Now, I’m not about to type some grand, philosophical debate about the necessity of forgiveness that will go over everyone’s head… Or at least, I hope it won’t turn into that.

This year I feel I’ve really evolved as a human being. A lot of my focus has been to get rid of the anger I’ve felt… Another major thing I finally let go this year, actually, was the resentment aimed at those who got to enjoy things I may never get to do. Ever. Sure, I couldn’t be angry at friends or family, that was easy enough, but put me in the room with a stranger who’s telling me about how they’re going to a party that night with all their friends, and… You get the idea.

I owe that in huge part to reading Toni Bernhard’s How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, for actually giving me the tools to know how to do that–how to acknowledge those emotions without feeling I was a bad person for even having them, and focus on how much more wonderful it was that they did get to do those things, than it was that I could not. But I honestly don’t have any explanation for how I came upon the realization I’m about to share in this post, besides that my brain has apparently developed some kinder, more mature, more well-rounded ways of viewing things I’ve thought a thousand times before.

Probably close to 95-99% of people who have either Late Stage Lyme Disease or Myalgic Encephalomyelitis–or, if you’re like me, both–didn’t arrive at that diagnosis very easily. (As those are the main two diseases I have, they’re my focus, but feel free to apply this to whatever similar invisible illness with which you’re dealing/you’ve dealt.) No, it probably went something more like:

  1. Go to the doctor expecting a quick fix for unusually-persistent symptoms
  2. End up getting sent to every specialist known to medicine because primary physician has no idea what’s wrong with you
  3. Get called crazy by every single one of them when the tests either come back negative or don’t show anything significant enough to explain why you feel like you’re dying
  4. Possibly get prescribed the most strongly contraindicated “treatment” for your disease because no one knows what you really have, yet, which makes you immeasurably worse
  5. Get called crazy a few more times, and thus
  6. End up being evaluated by five psychiatrists who don’t find anything wrong with your mental state, or blame everything on a mental disorder that doesn’t actually cause anything you’re experiencing
  7. Finally get the correct diagnosis years later, through what seems like the most random series of events that ever played out in your life

Am I right?

All in all, the stage of acceptance known as “Anger” doesn’t really go away like some of the others. The resentment and anger at all the doctors who could have helped you sooner had any one of them just not been so determined to say it was “all in your head”; the anger at those who called you crazy and said there was nothing wrong with you when you actually had a progressive disease; the resentment at those who thought you were faking just because the tests were negative; the anger you experience all over again at remembering any and all of the horrible doctor visits where you were pleading for them to do something, anything, only to be told you just needed to get out more, and probably see a psychiatrist.

Trust me, I’ve been there. So when this sort-of-epiphany hit me, it was like a ten-year burden had been lifted off of me:

Did I truly, honestly think, that any one of those doctors who called me crazy, had any idea that I was actually suffering from a progressive neurological disease? Did I really believe that those people, those fellow human beings, somewhere inside knew that I was dying, and just decided to recommend exercise and antidepressants for the sheer fun of it?

If they had known that what a terrible disease the original version of “CFS” was–that it was myalgic encephalomyelitis, that it was made worse by exercise, that it was progressive in 25% of cases and fatal in roughly 1 of 20–would they have just told me to “get out more,” or “exercise more,” or “get back to work, you’ll be fine”?

If they had known that Lyme disease or Bartonella exists in the south–that it would lead to multiple sclerosis, that the tests are often negative even if you do have it, that I still needed long-term antibiotics based strictly on the clinical presentation–would they have told me there was no way I could have it, that it was harmless even if I did have it, or that it was “only fatal in people with AIDS” and that there was “no reason to treat”?

Absolutely not.

What kind of monsters did I think these people were? No one in their right mind, especially a doctor who has sworn to Do No Harm, would know the truth of a disease so destructive and still call their patient crazy. If someone was suspected of having MS, or HIV, or cancer, or a neurodegenerative disease, these physicians would have done everything they could to identify and fix the problem. If they had known what I was up against and what the right approach to treatment was, they would have done it.

But they didn’t know. And that wasn’t entirely their fault.

Sure, there are always some doctors who go in it for the money and don’t care that much one way or the other, but they are few and far between. And sure, a doctor who keeps up to date on the latest research and alternative therapies is going to be more open-minded when it comes to a rare case–such as my own doctor, who is actually using me to teach her interns. And we can’t forget that it’s not 100% the doctor’s responsibility to figure out what’s wrong with us based on absolutely nothing: We also have to be honest and not afraid to be our own advocates.

My LLMD says, The passive patient never gets better. (And that pretty much applies to anything in life: If you only sit and wait for life to bring you what you want, and take no initiative to help make that happen, you won’t get anything.) But when it comes down to it, there is a whole cluster of reasons to why most of the specialists we saw were completely incapable of giving us an accurate diagnosis, the biggest of which is lack of information. The reason we patients advocate so much is because in our hearts, we know that if someone else has the information we didn’t, they hopefully won’t have to wait so long to get accurately diagnosed and treated.

Now, there are some exceptions. There are doctors who know the facts and, because of legal reasons and public position, choose to turn and look away whenever one of “us” come their way. But that is also very, very rare. Most all of the dozens upon dozens of specialists had no idea what was wrong with me, what was wrong with you, and could only give us the best advice they knew, based upon what they thought was happening. In hindsight I really do understand how someone could think I needed psychological intervention, if they had no clue that my disease really did do all the things I was reporting.

You don’t throw a paralyzed child into a swimming pool (as happened to one internationally-recognized M.E. patient) to try to “snap them out of faking ill,” if you honestly believe they are sick–you do it if you honestly believe they are making it all up, because you have no knowledge of what M.E. actually does. If there is anyone to be upset with, it’s those in charge of spreading real facts about these crippling diseases, and who don’t do it; not the doctors who have been armed with information they believe to be true, who just so happen to be completely misinformed about what we have.

So I finally just stopped being angry at them for not doing what they weren’t even capable in the first place.

You may have heard before that, Forgiveness is letting go of the hope that the past could have been any different (a quote popularized by Oprah though she’s not who originally spoke it). And in my realization, I also let go of the thoughts that any of the doctors who had mistreated me out of their ignorance, could have ever treated me any differently based upon what they knew. If they knew better, they would have done better. I am now going to instead focus on how blessed I am to finally have my diagnoses, and be glad that I am one of the lucky ones who still had time left to begin treatment. I hope this can help some of my readers move past their anger, also, perhaps just a little more quickly than they would have, otherwise.

Be blessed in the New Year, and always!

a rainbow at night

Article: “Brain and body training treats ME, UK study says.” This is so horrible I cannot even fathom its existence.

It’s been a while since I had a good rant concerning the blurred lines of CFS and M.E. and how horrible it makes things for us… I should have known when I clicked on this article, my blood would start boiling. So I’m going to rant here, and get it out of my system.

Chronic Fatigue Syndrome, also known as ME, should be treated with a form of behavioural therapy or exercise, say British scientists.

Symptoms include severe tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep.

This is not a disease, it’s most of the stressed out world right now. Tiredness and pain aren’t even necessary for an M.E. diagnosis, yet they remain a integral part in all the “CFS” madness. The main symptom of M.E. is “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, [one should] 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. [A. Melvin Ramsay, M.A., M.D. Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease (London, 1st ed. 1986, 2nd ed. 1988).] Clearly there is a problem when the one thing that exacerbates M.E. is being proposed as the cure for it!

The authors say cognitive behavioural and graded exercise therapies were the most successful, both at reducing fatigue and increasing physical function.

With cognitive behavioural therapy, 30% of patients returned to normal levels of fatigue and physical function.

In other words, 1/3 of the group probably had no illness at all.

“Worryingly, 34% reported that graded exercise therapy made them worse.” The authors suggest that poor advice, such as suggestions to just go to the gym, could be responsible for bad experiences with the exercise therapy.

And in other words, only 1/3  had real potential of having the neurological disease Myalgic Encephalomyelitis, which is irrefutably made worse by graded exercise. Does anyone else notice that they don’t explore other options for why they got the results that agreed with their idea, yet when they find 34% were made worse by it, their first idea is to explain it away with something trivial like the patients getting “poor advice”? That’s just bad science.

The Association of Young People with ME welcomed the findings. It said it hoped that fears about graded exercise and CBT were laid to rest, and that the study needed to be repeated in children.

No one likes the AYME anymore since they took sides with the government, but, I cannot even express the amount this terrifies me. Just because you have a “CFS” diagnosis does NOT mean you have M.E.! Oh lord, those poor children! Exercise is the absolute, number one thing that you must avoid at the beginning of the disease! But because of studies like these, which group people who aren’t even sick, and people who are misdiagnosed with CFS (but who actually have things like thyroid disorders, cancers, and infections such as Lyme), with people who have classic M.E., the government uses these botched studies to propogate that this IS the treatment for “CFS/ME.” And then those children have their lives ruined by having the “treatments” forced on them, or else they are thrown into asylums for “refusing to get well” (this DOES still happen–it IS happening right NOW!), all because of things like this.

When people say it doesn’t matter, or wonder why I get so flustered when someone says “CFS” instead of M.E., or uses terms like “CFS/ME,” this is why. THIS IS WHY.

NICE (the National Institute for Health and Clinical Excellence) said the findings were in line with current recommendations.

There isn’t a single M.E. sufferer out there that agrees with them and their recommendations of not doing any needed medical testing, not supplying adequate pain relief, and using behavioral therapy and exercise to “cure” an often progressive disease of the muscles and brain.

Dr Fergus Macbeth, director of the centre for clinical practice at NICE, said: “We will now analyse the results of this important trial in more detail before making a final decision on whether there is a clinical need to update our guideline.”

Read as: “We will now add this to our arsenal of deluded CFS studies to prove we are right, so people can continue using them in court to force potentially fatal ‘treatments’ on M.E. sufferers.”

I will always be appalled at this. When will people wake up.

My rainbow is a little darker tonight.

a rainbow at night

Lyme time again? And rambles about movement disorders.

It’s been a while since I’ve had the Beginning of the Month Lyme Flare, but I suspect due to stopping the Azithromycin, it’s making a small comeback. No worries, though–I doubt it’ll have time to do much damage before I start Tindamax next month… It’s December now! Yay!

I love the holiday season. Everyone is so giving, and people put forth so much effort to those who are not as fortunate, by means of donations and toys and food.

Two days ago I got a very sudden, very severe headache. I knew when it hit me that it was going to be one of the bad ones. I needed an entire Vicodin and 400 mg of ibuprofen to even touch it–usually I only need half of that! Day two required one additional dose, then today I’ve been okay without medicine, though I still get bursts of pain randomly.

Also for a couple days I’ve had the facial grimacing thing happening–where my face tends to droop and pull toward the left. I have very limited use of my left arm for reasons of neurological-based weakness. Yesterday my walk starting to.. well, where my left leg began to drag and I almost had a tip-toe gait, again. I have been feeling better this evening, but the dragging leg is still happening. I’ve had tremor in both arms, but obviously moreso in my left.

I never bothered to see that movement disorder specialist since everything was exaggerated because of the herxing. My neurologist confirmed dystonia, but as far as what kind, I have no idea.  Reading more about dystonia and hypertonia (so much overlap) and its relationship to upper motor neuron lesions, has left me wondering if some of these issues will ever leave, or just be a remnant that appears whenever my body and brain are stressed? A friend of mine has been diagnosed with hypertonia and spasticity, and while she also has a random spot on her MRI, they never thought to make any connection with it in her, either. Then again I don’t know what area of the brain hers is in, nor the size, nor if she has a positive pronator drift. But the coincidence made me research a lot; I love learning.

What I can draw from it in my one day of Googling is,

Lyme disease and/or Bartonella → Upper Moton Neuron Lesion (w/ Positive Pronator Drift) → Spasticity → Hypertonia → Rigidity, and/or Dystonia, and/or Parkinsonism, and/or Dystonic Hypertonia (and probably a ton of other things)

In other words, an infection leading to a brain lesion that leads to various movement disorders. (Everything there can have more than one cause and result, don’t misinterpret that.) I just wonder if it’s permanent? Both my friend and I have experienced that, even when we feel better, we experience progressive neurological deficits the more physically active we are… I simply wonder whether or not that’s going to go away, or if it’s related to the spots on our brains, and thus it.. probably won’t. It always gets worse when oxygen levels are out of balance… So if my friend’s problems are anything like mine then I assume the SPECT scan she’s having will show lots of abnormality, which should serve as a basis of proof for her disability case. It’s ridiculous that someone who can only barely get out of bed on most days and makes emergency room visits every few months, has to prove disability even when all infection tests show positive… :\

I should be better in a couple more days.

a rainbow at night

Why I think the new Myalgic Encephalomyelitis International Consensus Criteria are not much better.

I’m sorry I haven’t posted with my IGeneX results, yet. But right now I feel like talking about the new International Consensus Criteria for Myalgic Encephalomyelitis. And no, I’m not one of those people who tries to find something wrong with everything. I just wanted one thing, and I didn’t find it…

First, none of this will make sense if you don’t understand this fact: Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) are two distinct entities. If you look to the right of my blog, you’ll find this, which I’ll repost:

CDC agrees that M.E. is not the same as CFS:
“Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.

The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.

Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.

However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. 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 (CDC), US

This brings us two points:

  1. CFS has an internationally accepted case definition. This definition is based upon the symptom of fatigue without a known cause. All other neuroimmune symptoms are secondary and non-essential for diagnosis. So, if you have unexplained fatigue with sore throat and lymph nodes, headache, and post-exertional exhaustion, while another person has unexplained fatigue with poor sleep and memory, with muscle and joint pain, you both have the same illness as far as “CFS” is concerned, despite fatigue being the only thing you have in common.
  2. Myalgic encephalomyelitis also has a distinct case definition, accompanied by neurologic and muscular signs. The best definition for M.E. is Ramsay’s definition of 1986, which describes the key feature being “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.” He goes on to write, “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.” [A. Melvin Ramsay, M.A., M.D. Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease (London, 1st ed. 1986, 2nd ed. 1988).]

After several outbreaks of what was undoubtedly M.E., the CDC did a mediocre investigation (if you can call sending one person to collect a few blood samples then announcing “mass hysteria” an investigation) and invented this “new” syndrome of chronic fatigue. Over the past 30 years, it’s become a catch-all group for anyone suffering from fatigue for which no cause can be found, which includes anyone with undiagnosed cancer, hypothyroidism, depression, Lyme disease, myalgic encephalomyelitis, and various other physical and psychiatric disorders that have fatigue as a symptom. The only thing any of these people have in common, is that they are tired, and are very sick; some of them are dying due to misdiagnosis. In a recent paper by Dr. Bruce M. Carruthers, this is written:

“In a study of the Reeves empirical criteria [for CFS], Jason et al. reported that 38% of patients diagnosed with Major Depressive Disorder were misclassified as having CFS and only 10% of patients identified as having CFS actually had ME (Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. (2008). Journal of Disability Policy Studies, 20(2), 93-100).

Needless to say, it’s a very, very poor category to fall into when you’re sick and trying to cling to life. I’ll leave the conspiracy theories out of this, though nearly everyone has an opinion about how it came to happen that a deadly neuroimmune disease got classified as the same thing as a syndrome with “general unwellness and fatigue” as the main symptom. Ultimately, several “specialists” went into a room and decided upon the name of CFS for all the “new, unexplained” outbreaks (which they really did think was mass hysteria) even when knowing-virologists walked out, refusing to take part in classifying a viral-induced illness that was killing people as a “fatigue syndrome.” There’s much debate over if other pathogens can trigger M.E., but it usually has viral onset, and is contagious in the beginning stages. If you wish to know more, please see the links on the right of this blog.

Now, the real specialists we admire (no sarcasm there) have nearly succeeded in making a new, international definition for M.E…. You’d think I’d be happy (and I almost am), but they’ve completely left out the MAIN SYMPTOM, which is an abnormally delayed muscle recovery after doing trivial things.  The core symptom of M.E. is in the muscles. How is this new international definition any better, if this main symptom is not the focus?

If you ask me, people with chronic Lyme disease are still going to be misdiagnosed with this new definition, which still focuses on “physical and/or cognitive fatiguability in response to exertion.” It includes “neuroimmune exhaustion,” now, but did you know that Lyme disease also causes an immune system dysfunction 24-48 hours after activity (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses, Joseph J. Burrascano Jr, MD. September 2008.)? I’d imagine other chronic infections can do this, too. In the new paper, they source the recent CFS study about spinal proteins which claims to distinguish CFS patients from “Post-treatment Lyme disease,” but the fact that they are even mentioning the phrase “Post-treatment Lyme disease” is horrifying, as such a category doesn’t exist: Ongoing infection (which has been proven) is the cause of so-called “post treatment” Lyme symptoms, and to not acknowledge this shows a huge misunderstanding on their part, which will be greatly detrimental to their efforts. You cannot afford to not understand something which shares so many symptoms with the disease you are studying, and also, how can you possibly quote a study that uses the same flawed definition of CFS you’re trying to protest, as a support for your paper?! That is a circular argument, and just.. completely unsound!!

Thanks to a link at THE NICEGUIDELINES BLOG, I’ve been able to view the full paper that was ultimately published in the Journal of Internal Medicine. I recommend you visit there and read the paper for yourself, but here is the proposed new definition, via photo:

All of that said, I really do think this new definition is a huge step in the right direction. We’ve all been begging for a new definition for years. I’m a big fan of the Nightingale definition, but it’s not commonly used. I believe the Canadian Consensus Criteria were developed in 2002? It’s been almost a decade since we’ve seen any new definition, and if it had to be anything, I’d surely choose this one over the mockery of “CFS/ME” definitions that exist in other countries, and “CFS” definition we have here in the United States. It will help eliminate some of the other misdiagnoses, especially of psychiatric origin. If THIS becomes the new “CFS,” it will make sense to use terms like “CFS/ME” and “ME/CFS”–while as of right now, as I’ve said many times before, that makes as much sense as saying “lung cancer/chronic cough sydnrome” or “HIV/chronic sinus infections.” In other words, none at all, and it’s extremely offensive to those who have it.

And at least the definition does focus more on the rapid loss of energy that occurs, physically, which does include the muscles… I just highly, highly dislike the “and/or cognitive fatiguability” part, which means you can still be included even if your muscles aren’t the part that’s weakened. Your brain experiencing cognitive dysfunction isn’t the same as your muscles becoming weakened and eventually paralyzed with continued use, and that’s a major part of the diagnosis that needs to be considered, as Dr. Ramsay said back in 1986 before he died.

I have a family member who becomes extremely mentally fatigued as the evening wears on, and would qualify as having M.E. (or this new term of “atypical M.E.”) if someone used these new international criteria–yet they in no way qualify as having the same disease I have. So I definitely see where this will be a problem in the future… But at least it’s a step, right? Comments are welcome.

a rainbow at night

Fireflies, Coyote Arias and Friendships Adrift (via My CFS Life)

I’ve been struggling a lot again lately with feeling marooned. In my spirituality, I am increasingly aware that I am intended to live differently, and that it is both grace and blessing. That doesn’t make it easy – this feeling of being left behind.

As I stand here at the edge of my world, on my shore, friendships drift into the distance. Caught by other currents, destined for other ways of life and sailing for distant lands I can barely remember exist; they embrace lives I cannot have and for which I often ache. Ever greater expanses separate us and though their signal flares can sometimes yet be seen, I cannot quell all pangs of sadness as I stand with my feet planted in the shifting sands of my shore.

I look over my shoulder at this place where I stand, there is great beauty here and much to be discovered, but it comes at a price and I get so weary of paying. Sometimes supply ships come to my shore, my happiness to be among them mixed with challenge to my peace. They bring things I need and also tales of larger life that can be hard to hear, fanning the ember of longing into dangerous flame. One ship’s crew, a frequent visitor in the past, asked me how I manage here and when I said “I pray and God helps me” they left with laughter. Oh well, they asked and what was I to do, lie? I did not preach, only answered a simple truth.

Some of the ships arrive less and less frequently, more fulfilled at busier ports of call. Some, I suspect, will not return, and though difficult to accept – it may be for the best. I can do nothing to change it anyway. Read More

via My CFS Life