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 the most recent paper (which I’ll source a few paragraphs down), 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.

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 activation 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,” which, as of right now, as I’ve said many times before, make as much sense as saying “lung cancer/chronic cough” or “AIDS/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 isn’t going to be paralyzed; your muscles can and will, with continued use, if you have M.E., 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: RCGP, aka the “Mrs. Simon Wessely” College tries to reclassify M.E. as CFS…again.

So once again the UK Psychiatrists are trying to get M.E. reclassified as “chronic fatigue syndrome.” They’re trying to get a neurological disease and a state of perpetual tiredness, to mean the same thing across all the world. They may as well be trying to reclassify lung cancer as chronic cough, or AIDS as chronic sinus infections. I wish I were just making this up.

Read more.

As if that weren’t enough, they also advise AGAINST testing for infections, so people who DO get diagnosed with this “CFS” category will never find out what their real problem is, which is sickening since most EVERYONE I know with Lyme disease got a diagnosis of CFS first. THEY EVEN RECOMMEND NOT TESTING FOR HIV!!!

When is someone else going to step in for us? If this happened with some other disease the entire world would be in uproar. Spread the word.

“So to answer your question, the main characteristic of M.E., the abnormally delayed muscle recovery after doing trivial things, is essential in any M.E. research, just like a broken bone is essential if you do research into broken bones. If you do research into broken bones with people who don’t have a broken bone, but say they do, then your research is obviously seriously flawed to put it mildly.” (link)

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

Lyme flare recap, pictures, and a small rant

I’ve decided to do things a bit differently this post. I’ve been planning this entry for four days, but I’ve been so severely confused and disorganized that it’s been a huge struggle! I did manage to scrape together some random notes for a private entry on Monday, so I can use those to help me. Several things to say this time around, but first thing’s first, considering the entire reason I have this blog: Symptom recap.

This has been the lightest Lyme flare I have had in months. I was not bedbound! I barely had any dystonia and I had no cardiac involvement whatsoever! I did get parkinsonism. But the main feature has been extreme cognitive dysfunction (brainfog, if you will). My eyes dance over words instead of reading them, my brain hasn’t been able to form sentences in the right order, and my memory is on temporary hiatus. I’ve also had moderate-severe fatigue, which was expected. I’ve fallen asleep numerous times during the day, and the fact that my sleeping has been so disorganized at night does not help. There’s been more difficulty breathing, and my herxing has been worse, which I seem to recall happening last month around this time as well? I did have a day or two where I was extremely thirsty, but I don’t know if it was infection-related borderline dehydration or Zoloft-related cottonmouth… And I had several “headache bursts” from the 19th-20th; it eventually stuck on Monday, and moved to my neck, so I needed Lortab and ibuprofen. My back was hurting, specifically my upper back (another Lyme trend–it used to be my lower spine, but more recently it likes to affect my upper spine), and I also had the strange arm numbness phenomenon that happens, with certain severe headaches. Monday night was severe as far as the dysautonomia is concerned; my tongue was completely numb, and my face tingled. I was also anxious, which tends to happen when the vagus nerve is being.. out of line. Sometimes when I digest, it can feel like an anxiety attack without the anxiety, if one can imagine that sort of thing.

Otherwise,I’ve been seeing things more often (again), starting at least around the 17th. There was a possible bartonella flare on the 19th-20th: I had a ton of shin pain, and moderate amount of foot pain. However, my legs were also sore in general, so I’m unsure if this cluster of symptoms was bart-related or just activity-related. That said, I also had the moodswings, the muscle spasms, and the frontal headache, so…

Being in the sunlight for five minutes on Monday started a systemic reaction that lasted all night, even with ibuprofen. It’s not arthritis or joint pain, but it makes it difficult to bend my joints, because it feels like something is tearing. My joints are warm to the touch. Does anyone else get that? It’s funny, because it’s a Lupus-like symptom, but I happen to be one of the people with (multiple!) negative ANA results! I find that ironic in a world where it seems like everyone with Lyme gets a positive ANA at one point or another.

Also, I’ve had tinnitus for a month now…at least, that I’ve noticed. There is always some type of white noise in my surroundings, and I’ve noticed for the past month that whenever it’s truly quiet, my ears are ringing constantly. They of course started doing strange things when I started the Zithro, and there were those couple of weeks when my equilibrium was completely off, so I’m assuming there’s some inner ear component to this illness. Who knows, I’ve always struggled with ear infections. It was even an ear infection that made the M.E. relape, as well as caused scarring from the persisting inflammation; truly, who knows! But I hope it’s not permanent!

I saw my primary physician on Monday, which is why I left the house. She was very glad to see the treatments are finally working for me; even she was starting to wonder whether they’d be worth it. She was pleased with the combination of medications I was on, also. She said Rifampin added to other antibiotics can increase the effects of those other antibiotics, so even a small dose is still like a superdrug. Makes perfect sense to me, and helps solidify all the things I’ve “heard” about Rifampin increasing the effects of other antibiotics: It’s true!

Now, would anyone like to see a few photos for a change? First off, about three weeks ago an “anonymous” friend mailed me a Giant Microbes plush of Lyme disease. I took a picture of him! (And eventually found out the friend.)

Then the day before, another friend mailed me a box of assorted presents, including a belated sugarfree Easter bunny! There was also origami (cranes in a box and one dragon), a gorgeous necklace, more sugarfree chocolate, soothing scented candles, and.. baby spirochetes!!


Aren’t they just adorable? I unraveled the one at the top to sling around a bit, ha! What I didnt include in the picture are the new notecards (complete with rainbow-esque case), but that’s because I was too busy using them to keep myself organized!

Also, the card has a Yorkie sticker on it. That’s because I have a yorkshire terrier/maltese mix (technically a Yorktese), named Muffin. My family has been taking care of her for the most part until just recently, when, with my improvement, I’ve been able to be more of a dog mommy to my own dog. She’s still growing her hair, but here is a recent picture of her!

It took so long to get a good shot of her–I eventually had to put the camera on the ground!

If you rememeber me briefly mentioning Zoya Nail Polish in my first video post, I believe I was wearing Yummy. I recently applied it again (just one coat, though) and thought I’d share. I’d like to start encorporating more of my “real life” in this blog (things that don’t revolve around symptoms and disease advocacy) as hopefully, with my improvement, I’ll have more of that to share.

There’s still a health-related hook, though. The main reason I love Zoya–beside the fact that they are free of dangerous chemicals, particularly camphor, whose toxicity can be inhaled–is that the application lasts so long. No more chipping in just a day or two, ladies (and the occasional fellow); with Zoya I can use two quick coats and have it last all week. It’s become a ritual of mine that helps brighten my mood and my self esteem. If I cannot do it myself, a family member will help me, but every Friday night I redo my nails, as I briefly mentioned long ago in my How to Deal with a Bad Day post. :)

And one last thing. As a fair warning, please do not send me e-mails telling me how you do not “believe” in M.E., or chronic Lyme disease, or whathaveyou. I’ll simply block you, like I’ve had to do once already this week. (What a  coincidence–or not–that someone found my blog this week by searching for “myalgic encephalomyelitis why no one believes my pain.”) It’s bad enough that I can’t talk to people with Lyme disease without them doubting that M.E. exists, and that I can’t talk to people with M.E. without them doubting that chronic Lyme disease exists. They BOTH exist. I had one, then I got the other; I am your proof. Do you have any idea how hard it is to get support in either of those communitities? And for that, I blame the CDC, for literally CREATING the category of “CFS,” so that people are forever being misdiagnosed with this catch-all syndrome instead of their real ailment, whether it’s M.E. or Lyme or cancer or whathaveyou. Like a friend said: If I had HIV, would people question that I couldn’t have HIV because I had Lyme, or vice-versa? No. They understand that they are distinct, both disastrous, and you can have them both. You treat them, and you do the best you can.

I’ve given everyone lots of accurate information about both M.E. and Lyme disease through the links on the right side of this blog. Please make use of them before contacting me about such offensive matters.

Until next time!

a rainbow at night

I’m allowed to have some enjoyment in life.

I do have a facebook. And today, I watched movies on television practically all day. I can’t remember the last time I did such a thing. It’s very draining for me to watch movies, but commercials help as I can mute and rest every 10-15 minutes to avoid overstimulating my nervous system, so today, that’s what I did! And so I mentioned this on facebook, about me having a lazy movie-watching day.

Someone replied with “I wish I could have a lazy Saturday.”

I deleted the comment immediately.

Now, I know this person, and I know they didn’t mean anything upsetting by it… On the same note, I highly doubt they thought it through, making a comment like that to someone who is.. well, me. But it severely struck a nerve with me, for this and every other time someone has ever said something to the effect of “well I wish I could just do [insert something that people usually find relaxing] instead of [whatever hard "real life" thing they're doing].”

And I do understand it’s a normal first thought reaction from someone who is very busy with this “real life.” I hope to soon have a “real life” of my own. But you just don’t say that to people who are chronically ill and disabled, especially with a so-called “invisible” illness, i.e., the diseases that no one could tell you had unless you told them.

It brings up our entire history of getting accusatory looks and people making snide, judgmental remarks, which all aim to imply, You can only do “sick people” things, because real sick people don’t have any fun. The same looks that say, You have to prove to us that you are actually ill by acting ill; the ones that say, You’re not allowed to be anything but miserable because if you really felt so bad then you’d show it; and the looks and words and hints of ableist elitism when someone sees us buying a movie instead of a bottle of medicine, a chocolate bar instead of a salad, a CD instead of something “medically necessary,” or spending any small amount on something for us instead of putting it into savings, because clearly it’s just an abomination that we should have any enjoyment out of life, that we should try to hang on to some of the things we used to love, right?

It brings up all the doctors giving us strange looks when we still manage to laugh; people in parking lots giving us dirty stares because we park in the handicapped spaces but don’t looked “disabled enough”; the government literally spying on us during our “good days” when we’re out, and using that to argue a case that we must no longer be disabled and our payments need to be stopped.

It brings up everything that we’ve suffered through from others over the years, that constantly try to strenghten the divide between the sick “us” and the healthy “them”, and seeks to affirm the following: You are different, we are not the same, so be what I expect you to be.

So no, don’t say you wish you had what I have, or were doing what I was doing, or that you could trade.

Don’t say things like, “I wish your relaxation was all I had to worry about,” unless you really think being unable to function due to disabling illness 95% of your waking hours that is every so often intervened by short moments of reprieve where you’re actually able to enjoy yourself, sounds like your idea of a vacation.

a rainbow at night

Still waiting…

Times like this when I wonder if my treatment has stalled out, or if I’m just being impatient.

I think the breathing episodes from yesterday could have been the result of redirected blood flow to my intestines, even though I didn’t eat a lot. I had a small episode of breathlessness about two hours after last night’s Rifampin, and again two hours after today’s. The culprit was dysautonomia, which has been getting more irritable since this last Lyme flare started, as I mentioned here in reference to the numbness rearing up again. After the digestion stopped, things went back to normal again. I can’t say for sure that’s what happened for three hours yesterday, but it’s worthy of note, regardless. My limbs went numb, and I had physical symptoms of anxiety without the mental anxiety; typical of “the episodes.” It’s like I’m herxing worse, for some strange reason.

Today I’ve been in another limbo. The entire day has been a back-and-forth of “I feel okay” to “I feel horrible.” I wish it would just pick one so I know how to react. This instability is maddening. Right now I’m in one of the bad parts, and my evening headache has arrived so I’m on more Lortab. I need to add ibuprofen because the other one alone does not relieve inflammation and therefore doesn’t do much. My eyes hurt and are sensitive. My neck hurts. It’s been hurting a lot recently, actually. It now pains me to look downward, and I can’t past a certain point, which I noticed today. I halfway wonder if I’m dealing with subclinical meningitis. I mean, if it can happen in syphilis (A chronic subclinical meningitis (meningismus) is sometimes associated with syphilis)… There’s no telling what goes on inside you when you have at least three infections in your brain and spinal cord. (Ironically, the next few lines after that quote talk about offering Rifampin as a treatment…! The book is about the hidden connection of AIDS and syphilis; in modern days, we’re dealing with the same retrovirus + spirochete combination, except now, it’s XMRV and Lyme.)

It feels like I go through stages with the headaches, as well? Honestly, the strange patterns these diseases take. I go through a spell where I barely have any headaches, and then I go through a few weeks where I get them daily. And back and forth.

You know what I don’t feel the need to do anymore? To say I’m thankful. To remind people that even though I’m frustrated, I do appreciate the things I have. I used to care too much of what people thought, and that if I took a moment to explain why I was distraught, someone might take the wrong way and just act like one of my doctors or ill-advised family members and respond with, “You just need a better attitude! Think of the positive!” Well, I no longer feel the need to explain that I always do that, even on the days that I’m frustrated. If I can gain any lesson from days like this, I’ll take that one.

a rainbow at night

Frustrated rambling: I simply feel sick.

I want to write but I’m not even sure how to start. My brain is not in a good-enoguh place ot make much sense. I’m frustrated. And I can’t tell how much of this is just my mood or real, honest frustration.

This is the kind of post I wuld keep to myself, but… I think it’s important to post so that others who see my blog don’t feel so alone. Hey, we all feel this way. So I’ll make it public.

First off, yesterday I felt.. really good! It was just a simple not-sick feeling that is pretty rare. I had enough energy to take a bath in the middle o the day. :) But I was also really, really moody, and I had a lot of random derealization. I don’t know why I bother to say “I’ve lost track of my bartonella flares” because every time I announce it, it’s like they hear me, and remind me. I was irrationally angry (and this was after finding peace with whatever issues had actually been on my mind!) and volatile for no good reason. My feet really hurt, particularly my right one. I had stabbing head pains. But no fever yesterday!

Perhaps I’ve been spoiled by how well I’ve been feeling. I felt really good when I recovered from the hospital in March. Then I entered three weeks of feeling horrid in April… Then I came out of it by May. Then the end of May come around and I started to feel horrid again.

Yesterday wast he end of my Lyme flare; my headache was compeltely gone and again, I felt good. Today has been the opposite. I was so out of breath for about three hours. It was scary. It wasn’t “air hunger.” If I had my oxygen I would have used it, and I think I needed it, because I fell asleep like I used to a long time ago when I was unware of the infections an dI couldn’t stay awake so I’d slip into this involuntary semi-coma because of my O2 levels dropping. Trying to move only made me further out of breath. I had not taken anything unusual, nor eaten a big meal. When I woke up, the “spell” had passed, and I’m not having nay trouble breathing otherwise. I’ve no idea what it was. It started at about 3pm and lasted until I woke up at 6pm. I’ve been in bed all day, too generally out of breath to stay upright.

I just hate being in this limbo and not knowing why, because then it becomes impossibel to figure out if it’s something I’m doing or something inward that I have no control over. I supposed the best I can do is just to do whatever I can correctly, and chalk the rest up to my body being my body… Perhaps I just got a little too excited with my last improvements, that things were going to keep being like that. I don’ tknow, maybe they still will…

Battle of the Pills

I always said I’d do this one day. Post a picture of all the medicine I have, about a third of which I must take every day, a third of which are as-needed/to save me from worser things, and a third of which I take several times per week depending on symptoms. But I never did, and getting to the bottom of why is almost more of a journey than I’m prepared to write about.

I still feel ashamed. I feel ashamed that I need so many medications while the majority of people in my age bracket might have none or maybe one or two prescriptions. I feel ashamed and scared at the very real fact that if you were to take them all away from me, I would crumble and my body would become a non-functioning mess, a shell, encompassed by disease; it’s painful to be reminded of how much I need them. I feel resentment at myself, because a little part of me still thinks that posting this only says, Hey, look at all this medicine I take. I must be really bad off if I need all this medicine, because only sick people need this. Sick sick sick Sick SICK. And that’s not what this is about and “sick” is not all that I am… Even though it’s impossible to seperate yourself from what is–a human being living with chronic disease–even moreso when every three hours you have to remember to pop one of these pills, “or else.”

I feel anger and guilt and any other number of emotions because some people look at this and go, “You can’t possibly need that many pills. I don’t like taking pills. They have side effects. They might do something. I don’t know how you take all of that.” Well it must be nice to have that choice of whether or not you get to take something, because I don’t have that. Not if I want any kind of functioning ability; not if I want to be able to do anything at all; not if I want to give myself the best chance at a “normal” life (that will never, ever be normal anyway).

These are all of my current prescriptions. There are 25 of them, here, that are still useful and/or necessary. These are excluding the ones I’ve taken in the past but no longer need, such as Nasonex, Ambien, Doxycycline, Sporanox, Nizoral…

 

 

 

 

 

 

 

And these are my prescriptions, plus necessary supplements and herbs that I have to buy myself. Now the count rises to 37, but this doesn’t include the three from other rooms I wasn’t able to get, so the total I suppose comes to an OCD-friendly “40.” This is after years of dwindling them down to the ones that genuinely do something.

 

 

The main reason I remember wanting to do this, was specifically because I had a problem with it, and I don’t like anything holding power over me. I didn’t want to show anyone. Sure, when my family and friends visit, they see the eight or so bottles I have stacked on top of my bedside table. And they see me grab a bottle or two in the middle of our conversations, either because it’s time for another dose of something or symptoms arise. But it’s easy to allow those very close to you to see what you go through. Not so much to disclose it and say to everyone, “This is how things are.”

This topic isn’t something I very often see discussed. And maybe because no one ever talked about it, is part of the reason I had/have so much trouble talking about it, myself. But I’ll be glad to get it over with.

This is the pharmaceutical side of having myalgic encephalomyelitis, a disabling neuroimmune disease that has no cure, “only” a bunch of symptom-based regimens. This is what it’s like having Lyme disease, and bartonellosis, two potentially-fatal bacterial infections of the nervous system that may persist even after months or in many cases, years of antibiotics.

And this is the shame, the result of years of subtle and not-so-subtle messages from society (and even friends and family members) that say, “Be quiet about your disease, lest you make the rest of us uncomfortable.” Well, if someone doesn’t do something about these illnesses–because both disease rates are increasing–this is going to be you. People need to know all that it does, not just the side of it that makes the newspapers because someone “miraculously” recovered. Pardon me if I don’t want to be quiet about it anymore.

 

a rainbow at night

I think this is confirmation.

All right! So we have the mystery of random limb numbness/limbs falling asleep most likely solved, and the mystery of the “episodes” just about solved… And this morning it happened again! So if that doesn’t confirm it, I don’ t know what does!

Took Rifampin. First my tongue began feeling strange (never any swelling), then the top of my right arm began going numb, then my hands and feet went cold and mildly numb, and the right side of my face was only half-responsive. As in, if I smiled and only exposed the right side of my face, you would only barely be able to tell. Went to the restroom… And everything died down. I find this absolutely remarkable! I suppose as long as I’m not on Doxy or having extreme herxes like I was this time last month, I can probably avoid the emergency room, since the “episodes” haven’t been that severe.

My Migraine numbers are down. I haven’t had a full blown one in.. huh, it might be a week, now. No more reactions to temperature/foods since being off the Doxycycline. I don’t think there is anything left that’s without some sort of explanation… I figured it would piece together eventually if I just rambled enough! Haha. Things are a little more comforting, because now that I have an idea about what’s causing things, I know what to do in order to avoid them, or at least, not make them worse.

Last night I had Truvia with strawberries…and did experience a lot more limb numbness, however, yesterday I also started the Rifampin twice a day, for the full 600mg, which also causes the numbness, so! The jury is still out on how much it affects me. I’ll figure it out eventually. Even after the first additional dose, I needed Lortab for the horrible headaches, so I’m glad we started slowly this time. Then after last night’s dose I had small surges of sudden anxiety and really terrible thoughts, but I was able to talk to friends until they passed. Yesterday may or may not have been a bartonella flare, anyway, so I guess it’s good timing that I was to up the dose then. My thoughts are still a little sporadic today. The dystonia is back.

Right now I’m struggling with the idea of going to three more doctors in the next two weeks. Infectious disease specialist –> Neurologist –> Primary physician –> Cardiologist –> Neurologist –> Immunologist –> Cardiologist –> Another neurologist

I am burnt out, and sick of wasting all of my energy and my insurance’s money on these people who do not help me. It’s taking all I have not to just cancel everything. I especially do not want to see this additonal neurologist but three people have referred me to him… I can’t figure out whether to check the “Chronic Fatigue Syndrome” and “Fibromyalgia” boxes on the applications they sent me to fill out for his visit. I had FM but do not have it now, and I never had “CFS” but yet was misdiagnosed with it and it’s on a lot of my old papers… The only conclusion I can come up with is to write down “was misdiagnosed with” and bring Dr. Byron Hyde’s book on M.E. and CFS in case he wants more explanations.

Blah.

a rainbow at night

Another development: Is this the answer?

Okay. So we’ve figured out that other people going through bartonella treatment experience limbs that fall asleep and general messed up blood flow. Many even experience the same tingling tongue + numb arms that I get, though sans Migraine.

But something happened the other day that makes me think I’ve come across an epiphany as far as what is ultimately causing these “episodes.” They might seriously be some sort of dysautonomia attack.

It was in the “morning” (or at least, my version of it) and I hadn’t taken anything, not food nor medicine; only water. My body began digesting and wiggling around inside, you know, general bowel movement (BM) organization. Then, all of a sudden, “it” started: The right side of my face began to go numb, my tongue felt weird, and my right arm began to get cold and numb like it’s been doing. So nature called and I had the BM, and then.. everything went away!

I was stunned.

I’m no stranger to my body reacting abnormally to digestion. As I mentioned previously, sometimes when I have to digest, my POTS symptoms get much worse because of the diverted blood flow. (There really isn’t a predictable pattern to it, but eating large meals or meals that require more work are a trigger.) My body just doesn’t know how to correctly compensate for the changes, in the same way that it can’t correctly compensate for my changes in position. There’s not enough blood for the rest of me, my blood pressure plummets, and my heart rate climbs trying to keep things normal…but it can’t, so I cannot sit up or I risk passing out. Often my limbs will run cold from the lack of proper circulation. Caffeine has always helped me cope with this, I assume by getting the blood where it needs to be more efficiently; whatever mechanisms work to do this, I’m not exactly sure, but it’s nothing to do with hormones or chemical levels (adrenals), at least that much has been studied. (Do a quick search on “postprandial hypotension,” “autonomic failure,” and “caffeine” and you’ll get some interesting results…even from the 1980s!)

But… What else does caffeine do? Well, for some people, it makes them have a BM! For right now, this MIGHT explain why I cannot tolerate much caffeine without everything going awry. It seems I can tolerate a little caffeine again, because I’ve needed it in my Fioricet tablets. But I’m scared to try much else right now. It would also explain the second time I ended up in the ER because of these “episodes,” even though that morning I’d done nothing but take my Rifampin: For whatever reason, Rifampin always creates a BM about two hours after I take it. A lot of the “episodes” were also precipitated by a sudden urge to urinate an abnormal amount of liquid; I don’t know what that means, but it could definitely be related to dysautonomia as well, and I know several of the “episodes” I felt things digesting but without the need “to go.”

The dysautonomia theory would ALSO explain why these episodes seem to be correlated with my eating in general, and not correlated with WHAT I eat, but just that I eat. It’s not the food, it’s what my body does in reaction TO the food!

This morning, for example, I had only taken my olive leaf extract, and I started getting a small “episode.” My stomach began moving about, and a BM later, the symptoms went away. Then I took my Rifampin. The usual herx reactions, but also the beginnings of numbness and a tingly tongue. Again, another BM because of the medicine, and the symptoms went away again!!!

Now, I seriously, seriously think–with good reason!–that the increasing dysautonomia problems and blood flood difficulties I’ve been having since I started treating the bartonella, may be directly to blame for the “episodes,” and my increasing Migraines, because migraines are the result of problems with nerve conduction and altered blood flow. What is the main factor in my dysautonomia? Problems with nerve conduction and altered blood flow.

Oh, and GUESS WHAT ELSE is controlled by the autonomic nervous system?

Swallowing!

So even why I sporadically cannot swallow during these “episodes” would make perfect sense!

With all the spasming my circulatory system has been through today, I’m in this “pre-migraine” state that I’ve been in more often than not. It’s.. constriction of the blood vessels in the right side of my head, and it’s painful, but I can still function. It’s not a full blown Migraine, but if I gave it another trigger (like I had previously been doing with the various foods and things, like vinegar), I think it would turn into one.

So it’s all coming together, I think! I’m not saying everything is explained by just one factor, but all of them together? All of this mess–the bartonella, the migraines, the dysautonomia, the Rifampin, the Doxycycline–they are/were all collaborating, and my nervous system is just fried. But since I’m not the only person to have this happen while treating bartonella, I feel better about it.

I’ve noticed my own blog comes up when I’m searching for things, and that quite a few people have ended up here while searching for dysautonomia…

  • dysautonomia and numbness in face
  • rifampin postural orthostatic tachycardia syndrome
  • rifampin made my pots worse
  • post infection dysautonomia
  • dysautonomia lyme disease
  • need to compress legs for dysautonomia
  • nausea dysautonomia

So if this is happening to you, please know, you are not alone! And even if it feels like an anxiety attack–because the one I had this morning almost did–you are NOT doing this to yourself! Staying calm will definitely help, but ultimately, you’re not to blame if your nervous system can no longer control its most basic of functions.

a rainbow at night