Thoughts on Emily Collingridge, and being judged for our disabilities.

These two topics complement each other in an unexpected way.

First, the recent death of fellow M.E. sufferer Emily Collingridge has shaken me. And I’m ready to be honest about why. Usually I would skip this part and post the conclusion of my thoughts, but it’d probably be therapeutic for myself and for those reading (whoever you are) to read a different part of the process.

There are many friends I have with M.E. (or, what is supposedly M.E.) that have never known the level of sick that even I have, much less something like what Emily endured in her final years. And that’s good, really! But it’s scary to think that this could be me, because of my susceptibility to this level of sickness. (And goodness knows not anytime soon, because she had the illness twenty-four years and I’m just at ten, but…) It’s not even the death itself, but the way it happens.

Most illnesses so severe will take you out quicker than this. There aren’t many that drag on and on in such a way… In 1995, as Professor Mark Loveless served as Medical Director of HIV/AIDS Programs at Oregon Health Sciences University, he said in his Congressional Briefing that someone with M.E. “feels effectively the same every day as an AIDS patient feels two weeks before death; the only difference is that the symptoms can go on for never-ending decades.” It broke my heart to hear of her suffering so much, for so long, and, just like Sophia, knowing that if she got hospitalized it’d be the worst thing to happen… Then sure enough…

I don’t want that. I want to be home, wherever that might be by the time I’m at that stage in my life. Who knows, maybe they’ll have hospice options for people like us in the future?

My friends say that even when they were at their absolute sickest with Lyme, they could still listen to music softly or watch television with sunglasses on, and they can’t imagine being that ill and suffering that much, not being able to do anything whatsoever. I can’t imagine it, either. I was only like that for a short amount of time, my symptoms being exacerbated by the trauma of those additional infections, and it just sucks all the happiness out of you (being unable to listen to music, in my case, was particularly difficult). It’s so hard to hear of someone enduring that for so long, to be on morphine from so much pain, and to not make it through… Had she not the illness for twenty-four years, she likely would have been able to bounce back to a less-afflicted state of sickness as she previously had, as many do, going in and out of the severity levels. Yes, she was young, but it is still a quarter-century’s worth of disease affecting her body even as it was still forming.

When you get it young, like Emily did, like I did (though certainly not as young as six years old), you usually do experience a remission (most, at around four years after the onset) and a lot of people stabilize after that. Most stabilize after that, actually, into a moderate or mild affliction. It’s just this 30% that get it really, really bad, and it continues to progress over time; almost all the deaths occur from this group. Some never remit, but for the others, something usually triggers it again after the remission or semi-remission, but that could be anything from a year later to a decade later (like a cancer might stay gone for long lengths of time, or come back within months).

I started this blog with severe M.E., my condition having been worsened by secondary infections, and I was very privileged a couple of months ago to remove the “severe” classification from my blog description, “Chronicling a very special way of life, that of someone living with M.E.,” instead of “severe M.E.” Even when I look outside, I can’t help but be reminded of the people who can’t… I remember a year ago, just wanting to be able to brush my teeth whilst standing up. And I have a chance to get better, still. I’ll be in the moderate group, if I can beat the Lyme disease into submission, and that would be good. (Well, not good, but, given my options…)

I never knew Emily personally, though I was a big fan of her her book for sufferers of severe myalgic encephalomyelitis, and linked to it here several times. It is an indispensable aid to those forced to navigate these unstable waters, one that could have only come from someone who knew its unpredictability and cruelty first hand.

It’s really not often I have to think of the M.E. anymore, because the things I do to keep it in check are just.. routine, after all this time. Really, fighting the Lyme disease is my focus and takes up most of my energy. I suppose that’s why being brought back to the reality that even once I get the Lyme subdued, that I’ll still have this terrible disease, has startled me so.

My niece, who I live with, has been sick with a viral-induced cough, and I’ve been thinking, at least it’s not like the flu (which would hospitalize me) so it wouldn’t be that serious if I did accidentally catch it… But then I remembered that it was a viral ear infection that ultimately made my M.E. relapse five years ago. And again, Sophia Mirza, too, was striken into irreversible relapse by an ear infection. So there really is no such thing as a “better” virus when you have ME. Just the thought that if I were to catch something so miniscule…

It was a lot of triggers at once.

 

And it came at a particularly awkward time, after reading an article about a woman with muscular dystrophy who paints:

“With her condition, most people would just be vegetating, watching TV, enjoying checks from the state. But she does a lot of work. She stays strong.”

I was furious at this.

It’s just more proof that you’re only allowed to be disabled and worth something at the same time, if you still do things. If you can’t, if you’re really, really sick, then you’re just “vegetating and watching tv and enjoy checks from the state.” Nevermind that we need those “checks from the state” to survive, or that watching tv might be the only relief we have from the every day, nonstop suffering…

People don’t want to hear of the severely disabled. They only want to hear of people who are disabled and yet still do things. They don’t want to hear of people who are bedbound to the point of being unable to do anything at all but exist, like so many people I know, and the person I have been (and will be again, one day). People like Emily, when she became too ill to even eat on her own.

Finding that article all started because I was wondering if there was any way I could still do art with the M.E. besides just taking a very long time to complete things. So I googled muscular dystrophy, which, with its similar progressive muscle weakness, was the closest thing I could think of to M.E. that might have more information out there about how to manage it while being an artist.

Then I find an article whose interviewer says that if I can’t do it, I’m just lazy and not strong enough in character!

It was infuriating, and the reason I wrote my “Media and Resilience” rant a long time ago. I really don’t take it as a compliment anymore when people say I’m “so strong” because I’m still doing something

Because what, when my M.E. gets to the point that I can only lie there and breathe, then I don’t matter anymore?

It’s just horrible being reminded that there are people out there who would look at you and think you, as a disabled human being, are inferior, weak, and lazy, for the sole reason of you existing without also inspiring them.

As fellow blogger and severe M.E. sufferer Laurel stated, Emily embodied “strength, spirit and determination — all of which she continued to demonstrate to the very end,” and which was not determined by how much she did.

She did do a lot when she was physically able, even though it took so much out of her. She thought her causes important enough to spend her very valuable resources on them, but when she became unable to continuing doing in her last years, that did not, and does not, make her any less strong or determined.

Lastly, I would ask you to take the time to read Emily’s Appeal, which she wrote over the course of several weeks while she was still able. Additionally, Emily’s story, from her own words, can be found here.

I’ve no idea what kind of conclusion statement would be appropriate for such an entry… Most of this post is a combination of things I’ve written in other places over the past week, that I edited to make into a blog post. So that so much needless sickness no longer occur, I hope that things change for us in the near future.

Somehow.

a rainbow at night

Remission from Fibromyalgia?

Fibromyalgia is a pain syndrome that is usually triggered by a physically stressful event, such as a car crash, surgery, accident, severe infection, or another illness worsening/starting; more or less, it’s the consequence of something else. The pain is primarily in the muscles, and the tendons that support the joints, lending to severe, widespread pain and joint stiffness, but without actual inflammation. The syndrome does not damage the joints, muscles, or any organs–it just feels like it! There is an extreme sensitivity to pressure (allodynia): Things that would not normally hurt, such as receiving a gentle hug, become extremely and lingeringly painful. The pain never stops, is absolutely everywhere, all the time, and may particularly revolve around the tender point locations necessary for diagnosis.* Someone with FM will be hurting when they are sitting, standing, walking, and lying down.

Temporomandibular joint disorder (TMJ) is very common, and a major contributor to headaches. Irritable bowel syndrome is also extremely common. Sleep problems may include an inability to fall asleep, but particularly revolve around problems staying asleep. Someone with FM may wake up every single hour at night, due to the brain’s inability to conduct normal sleep waves–in this case known as an alpha-wave intrusion, causing bursts of brain activity during what should otherwise be restorative sleep. FM is thus also accompanied by a great degree of fatigue that may or may not be manageable. Cognitive problems are multiple and very prominent, including things like an almost complete lack of short-term memory, working memory, any ability to recall the names of everyday items, and silly things like placing the television remote in the freezer and the popsicles on the coffee table. (Or pouring your cup of tea into the sink instead of your cup… I may or may not be speaking from personal experience…)

Other symptoms include tingling and numbness of the extremities (your arms and legs), muscle spasms, sensitivity to weather changes (instead of turning on the local news, ask your Local Person with FM if there’s rain or snow coming), and a high rate of restless legs syndrome.

Stress is NOT the cause of fibromyalgia, but stress exacerbates any chronic illness, so proper management of stress is essential to keeping your pain, fatigue, and sleep problems as mild as possible.

Fibromyalgia is not an inflammatory disease. It is also not a progressive disease, though symptoms wax and wane over the course of several months, and can be disabling. If you are experiencing inflammation and/or illness progression, see another doctor for other illness possibilities besides fibromyalgia, which may only be a symptom of another, more serious disease process or underlying infection.


We know Fibromyalgia can disappear on its own when it’s associated with Myalgic Encephalomyelitis.** But what about otherwise? Does treating the disease that triggers FM always make the FM go away? That certainly wasn’t the case when I fell ill: Although M.E. triggered my fibromyalgia, when the M.E. went into remission, the FM remained to torment me…until it, too, slowly abated a year or so later, ironically right as the M.E. relapsed/returned. I halfway expected that additional neurological trauma might re-awaken the fibromyalgia, but even throughout the Lyme disease ordeal that followed, the FM never returned (although I am now left with permanent, disabling pain).

So, does it ever naturally remit on its own in other circumstances? We may never know, because the consistent over-diagnosis of FM has severely muddied scientific research. For instance, there may be thousands of people diagnosed with FM who also have M.E., who just had the unfortunate circumstance of being diagnosed with FM first then stopped looking for additional explanations. Also, nearly everyone I know battling Lyme disease–I am not exaggerating–initially had a diagnosis of either Chronic Fatigue Syndrome, Fibromyalgia, or both. It was only their persistent digging that eventually afforded them the actual cause of their progressing pain, fatigue, brainfog, and neurological disturbance. If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate medical specialist, you probably do–you can read this and call IGeneX to order a test kit for your doctor, as they test for all possible bands (NOT just the most common thirteen available on standard testing). Additionally you may watch Under Our Skin, am excellent documentary film containing people with FM (as well as other diseases like Multiple Sclerosis and Parkinson’s) who found out Lyme was the cause of their symptoms.

I don’t claim any of the tips below to be a cure–I think my FM most likely remitted naturally of its own accord–but I can at least share how I treated the syndrome while I endured it, in case that might be of help to others. I could always, always tell when I was forgetting one of them.

  1. Magnesium

    You’ve probably read about this all over the internet, right? Sure you have. Well, it’s not just hype. I’m not going to pretend to know the mechanics behind why it helped, but daily supplementation with magnesium not only reduced my Migraine attacks (a condition I was born with) from twice a month to twice a year, but greatly reduced my muscle pain. I’ve read many an article over-analyzing the right “type” of magnesium to take for Fibromyalgia, but I can only tell you this: I bought the plain old Magnesium oxide with chelated Zinc from Walmart and it worked without fail. One important thing to note before you dismiss this one: I’ve always had normal serum magnesium in blood tests. The amount in your blood is not an accurate way to determine the actual amount of magnesium in your body.

  2. Foam mattress topper

    Actually, this might ought to be number one… It’s that important. Fibromyalgia is made worse by pressure on the 18 tender points…which are practically everywhere. It should be easy to grasp, then, why relieving this pressure whilst sleeping is essential to easing your symptoms: You’re pressing on them for eight hours at once! Invest in this, no matter what. You will not regret it. Personally I couldn’t sleep on anything that didn’t have two inches of bed foam for even one night. When I would try to visit friends and family and sleep there, I would awaken after just a couple of hours in excruciating pain, all from the pressure on these tender points. Also, sleeping better will help improve your cognitive abilities (memory and mental functions) and fatigue.

    • For TMJ-related pain and/or head pressure, invest in an amazing pillow. You deserve it, and you need it! It’s all about support and relieving pressure on a body that interprets pressure as pain. I’ve personally been using Simmons Latex Foam Pillow (I cannot stand memory foam) and mine lasted 7 years before needing replacement–you will get your money’s worth!
  3. Protein

    You know what honestly made me start increasing my amount of protein? It was back in the day when Montel Williams still had Sylvia Browne (a world renown psychic) on his show on Wednesdays. Every time someone mentioned having fibromyalgia (which was largely unheard of back then), she’d tell them to eat more protein (and less sugar). I figured, it couldn’t hurt me one bit to try it, so I did. And I’ve been doing it ever since. (I’m not vouching for her abilities one way or the other, but that information helped me. I now also know that people with infections requires 50% more protein in their diet than those without, so that’s another reason for me to continue.) I made a pact with myself to get an adequate source of protein every single day for two weeks to see if it made a difference. Obviously, it did! For me, it was chicken, and luckily there are hundreds of ways to prepare it so I didn’t get bored. For vegetarians it might be soy, or something similarly protein-rich that contains all essential amino acids. I noticed I had more energy and wasn’t as weak. I highly recommend you try the same test.

    • We all know too much sugar is bad for us. I switched to honey instead of sugar in my coffee, and cut down on my intake of white-flour, empty-calorie foods (which admittedly wasn’t very difficult since I didn’t eat a lot of that stuff to begin with). Honey is structurally different from sugar, containing mostly fructose and glucose (instead of sucrose), which is fancy language for: Your body can use more of it for energy instead of donating it to your fat reserves.
  4. Aloe vera

    If I had a dime for every person who told me “thank you” for telling them about this one! Fibromyalgia is, without fail, associated with some degree of irritable bowel syndrome; if ever a case existed without IBS, I’ve never heard of it. This stuff will help if your digestion is too slow or too fast (and many IBS sufferers cycle in-and-out, sometimes even within the same day). I’ve had people tell me they’ve been able to start eating foods they previously couldn’t touch! Hopefully, if you try this, you’ll have the same reaction?

    • I’ve always taken Puritan’s Pride aloe vera gel capsules because I can’t stomach the drinkable form. I’ve been taking them daily for eleven years and while it has many other health benefits, it’s mostly to protect the intestinal tract and help keep things from acting out, whether to one extreme or the other. Note that it’s very important to consume the inner aloe vera leaf gel, not just ground up aloe vera leaf like you may accidentally purchase if you’re not paying attention…or having a healthy dose of brain fog. You can get the same relief from drinking it, but the gel capsules are much simpler, if you ask me.
  5. Flexeril

    This is a muscle relaxant that used to be one of the only things your doctor could give you for Fibromyalgia, before Lyrica and all the others came around. People with fibromyalgia do not enter the restorative stage of sleep as often as they need, so the next best thing is to make it count whenever you do. Flexeril makes it to where your muscles relax during those rare restorative sleep stages, allowing your body to heal more than if you hadn’t taken anything. The difference is noticeable, particularly when you’re in one of those “waking up every hour” phases that leave you a zombie during the day (which contributes substantially to the “fibro fog” part of the illness). If sleeping aids cannot keep you from from awakening fifty times a night, at least you’ll get the most rest out of whatever REM sleep you do get. I personally had to switch to Robaxin (methocarbamol, another muscle relaxant), but just be sure to try something.

  6. Exercise daily

    If you’ve made it this far down the list, I hope you’ll stick with me through this section! I cannot stress enough how essential exercise is for fibromyalgia…nor how difficult it is to get started. But second to none does it improve fatigue and stamina, and second only to perhaps the mattress topper did it so quickly improve my pain. I.e., it helps a lot...and you probably want to start with all the others first (except the aloe vera, which is just for intestinal troubles), to give your body the best chance of recovering from the exercise. I could always feel my symptoms worsen when I hadn’t exercised for a day or two. The type of exercise I’m talking about is, for all intents and purposes, graded exercise therapy. This is the type of exercise that studies claim helps chronic fatigue syndrome, but do not mistake this for being a treatment for M.E. (which is not the same as CFS). I absolutely could not exercise until the M.E. began to go into remission. Only then was I able to very slowly start doing exercise, gradually adding on more and more activity.

    The first goal is to have fifteen minutes of activity a day. In the beginning I could only walk around my house for three minutes at a time, five times a day. Next, I moved up to five minutes at a time, but just three times a day, so still fifteen minutes total but more activity at once. When I felt comfortable with that level of activity, every morning I began rotating my joints across their range of motion; it was practically the only way I could fight the terrible morning stiffness, especially in the colder months. Feeling less stiff, I finally started adding in very gentle stretching exercises, similar to the ones you’d do before a run. First, just five minutes a day of very slow stretching, only as far as my muscles could go without feeling a strain. Eventually I was able to work this up to a full fifteen minutes straight of stretching, using my favourite music to make it more enjoyable.

    DO NOT try to do it all at once and DO NOT force yourself to exercise like a completely able-bodied person would. Right now you have an illness to manage. Just because you can’t do things the way you used to, doesn’t mean you can’t do them at all–you just have to do it differently, and that is okay.

    Even with this graded approach, it was still unbelievably painful. The first two weeks will be absolute hell. Probably not the best motivation, I know, but I want you to be prepared. Plan in advance to take care of yourself extra well. With fibromyalgia, you can’t stop just because it hurts the next day: If you do, it’s the same as stopping a new medicine, and you will lose whatever progress your body has accomplished. When I started this, I was exhausted and beyond sore the next day, then more-so the next day, then even more-so the day after that and so forth…until the breakthrough happened. “The pain stage” finally passed, I started to reap the benefits of my exquisitely difficult labor, and from then on? My symptoms were actually worse if I didn’t exercise! There *is* a light after the tunnel. I wouldn’t recommend this for any other reason.

    Important: This is the exact opposite of treating myalgic encephalomyelitis, and part of the biggest proof that M.E., CFS, and FM are not the same entities. If your muscles begin to slow down the next day and are accompanied by burning muscle pain only upon movement, and these symptoms become worse every additional day until you are experiencing paralysis, you have more going on than “just” Fibromyalgia. If you’re suspected of the viral-induced neuromuscular disease myalgic encephalomyelitis, exercise will only cause symptom progression and irreparable damage, so STOP immediately. Other illnesses that cause different types of progressive muscle weakness in response to exertion are: Lyme disease, babesiosis, chronic viral infections such as CMV, EBV, and HHV-6, hyperthyroidism, and myasthenia gravis (which also results in paralysis). However, this is NOT AT ALL the same as experiencing more pain, more soreness, and more fatigue like you would with Fibromyalgia, because let me restate the obvious: You are going to hurt, be more exhausted, and not want to continue. But I can also tell you on behalf of myself and everyone else who’s ever successfully initiated an exercise routine with Fibromyalgia: It will help you.

Am I cured forever? Maybe. I have days where something strange will happen–a Lyme herx, a day of severe stress, a strong storm passing through–where I will get a rush of pain that feels just like fibromyalgia, and this leads me to think maybe the mechanisms behind it are not actually gone as much as they’re just not currently active… But I no longer suffer from its trademark symptoms. I no longer have a dull, gnawing, all-encompassing ache in my entire body that never quits and doesn’t respond to any painkiller, that makes it difficult to move any joint from the stiffness, that makes it impossible to sit or stand in one place too long because the pressure causes a flare up in most of the tender points; I no longer have irritable bowel syndrome; I no longer wake up 10-20 times per night; I no longer have the specific sleep-deprivation-like brain fog that accompanies it.

Granted, I am still very much disabled, in constant pain, and live with cognitive impairments that sometimes make forming a sentence impossible…along with dozens of other symptoms. But at least it’s not fibromyalgia. I can only keep hoping that it never gets re-triggered, especially since there is practically no information out there about the recurrence of fibromyalgia-like pain syndromes in myalgic encephalomyelitis… But I have the feeling, with all I’ve been through the past eight years, if it were going to reappear wouldn’t it have already done so?

a rainbow at night

* Well, not anymore. The criteria for being diagnosed with FM no longer require you to have any tender points.
** You can read The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) to read about the various pain syndromes that accompany the disease; an FM syndrome is known to occur then slowly abate after several years, which is what happened to me, even though I still experience severe, incapacitating pain as a result of M.E. + damage from neuroborreliosis.

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

Letting go of society’s expectations, symptom recaps, and improvement with bartonella.

Despite the fact that my brain has been functioning a lot better recently, I haven’t much felt like updating. Completely the opposite of several weeks back, when I couldn’t think to save my soul but desperately had things to say! I’m learning a new language, so most of my spare brain energy has been going into that. It will also help me decide if I may be able to attempt finishing my degree come next August. If I cannot, however, I think I’d be okay with just letting it go. Afterall, I do have at least one degree–even if it’s not what I set out for–and my health is too precious to waste on going to university to finish a degree I may never be able to use, and which may worsen me trying to complete.
I have fought too hard to get to this point, and I don’t want what society says I should be doing to dictate what would actually be best for me. If I do reach the point where I am finally stable, then I would love to try and finish and become a researcher, or at the very least, a counselor. But that would take a lot of trust in the fact that I’d still be stable and healthy enough to actually do those things after my degree was finished. If I never again become that well, wouldn’t it be better to attempt some type of small job with the degree I already have, than use up everything I’ve gained in pursuit of something that won’t do me any good? But even that would require more health than making sure I don’t starve on my own. If I only improve enough to take care of my basic needs, I will be thankful.

Illness has taught me my worth is not defined by how much money I make, or what level of degree I have, or what job I have (if any, if ever). I am worthy because I am here, because I exist.

Randomly: I’ve gotten several followers the past few weeks from all over the world–oh, the power of the internet is amazing!

Okay, let’s see. From the 16th-23rd I was having a typical Lyme flare… How is it possible that this pattern hasn’t changed, practically since the time I got it? Is it really THAT predictable? But yes, severe headache and neuropathy issues, and I also recall being more cognitively impaired during then, as well as thirsty–again, all typical. What’s not-so-typical is that I’ve had nasal allergies the past week. I can’t tell if it’s eosinophilia related (hopefully not) or something I’m exposed to in my environment. It’s not like I go outside or even open the windows lately, with it being so cold, but either way, since I’m not allergic to anything except chamomile, this is puzzling! I’m definitely reacting to something–I just don’t know if it’s internal or external. I have Astelin, until I figure out what’s going on.

I felt it’d be okay to restart my stretching routine a couple weeks ago, so every other day I get some exercise! No relapse, yet. I’ve been able to cook a lot lately, also, which is encouraging. It’s still difficult and frustrating because of my muscles and their tendency to fail the day after using them, but hopefully that will improve more soon. If it got worse when I got these infections, surely it will improve as I continue to treat them.

Dare I say that the bartonella eradication is going as planned? The Bactrim is amazing, and I think the bart is.. well, it might be gone, or at least, finally beat into submission?! The protocol is to continue treatment two months past the cessation of symptoms, and I talk to my Lyme specialist next month, so we’ll see what he says. Then I can start Tindamax to finally treat the Lyme! The antibiotics I’m on now treat it, but only very minorly–just enough to keep it from taking over. I’ll be stopping the Rifampin since I can’t take it with Tindamax, but I may stay on a maintanence dose of the Bactrim, since bartonella has a crazy-high rate of relapse, and I do not want to go through this again. I feel I’m probably being unrealistic that I should never face it again, with the way my immune system is, but… For now I’d really like to enjoy my improvement.

Three days ago I started my Zoloft to ward off PMDD and control any outstanding OCD symptoms. I don’t think I was having PMDD yet, but since I was supposed to have taken it again in September, it’s bound to show up soon. My OCD has been flaring and I’ve been hungry all the time, so I know some brain chemicals were out of alignment. I last took it in June, I think, and it was by far too late then!

The past three weeks I’ve had this odd collection of symptoms that fit the description of pelvic floor dysfunction–not saying I have that, but symptom wise, that’s what’s going on. All of my muscles there would randomly tense and were very uncoordinated, no doubt the result of nervous system disruption. :\ I have gotten this on and off over the years, for a day or two at a time, but never three weeks. It’s mostly gone away now. My menses started two days ago so they’re somewhat on schedule again, with every 45 days being my usual. However, if things continue to be.. bizarre, I may see myself going to yet another doctor, so it’s worth keeping track of, yes? I’ve been slightly anemic even before this, and yesterday I had the most random craving for crushed ice (a further sign), so it’s probably no wonder I have been beyond exhausted and out of breath with every move I make. (Anyone else start singing The Police just then? No? Okay.)

A recent study found a correlation between high doses of Vitamin C and a reduction in the rate/increase of heart failure symptoms. Granted it’s just a correlation, but now I feel even greater about taking two tablets per day since last year!

Til next time

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

ARTICLE: New Hampshire doctors can now treat Lyme disease with long-term antibiotics

“New Hampshire residents suffering from chronic Lyme disease will no longer have to worry about finding a doctor who will treat with long-term antibiotics.

A bill, HB 295, that states doctors are free to treat Lyme disease with long-term antibiotics and cannot be punished by the Board of Medicine because of such prescriptions was passed Thursday.

The bill’s prime sponsor Gary Daniels, R-Milford, said the bill is an important step in helping both patients and doctors as it acknowledges chronic Lyme disease is a real ailment.

The text of the bill reads, “No licensee may be subject to disciplinary action solely for prescribing, administering, or dispensing long-term antibiotic therapy for a patient clinically diagnosed with Lyme disease, if diagnosis and treatment has been documented and monitored in the physician’s medical record for that patient.”

Daniels said Thursday, “The problem we were encountering, and it seems to be a nationwide trend, is there are two standards for treatment and there seems to be favoritism over one standard that basically says there’s no such thing as chronic Lyme disease.”

He added that typically, if people have Lyme disease for longer than the four week average associated with the disease, they’re instead treated for other diseases such as fibromyalgia or chronic fatigue syndrome.”

[Source]

Clinically diagnosed, even! This is so amazing. Finally some will be able to get treatment for the disease trying to kill them without worrying that someone who has no interest nor knowledge of their situation will try to stop it.

Someone mentioned there was a bill passed recently in Texas, but upon looking what I found was a statement saying that there didn’t exist a law that prohibiting the use of long term antibitoics, which basically means the doctors cannot be taken to court like in so many other states.

I feel this is such a big step for us Lymies! Spread the word!!!

a rainbow at night