When the National Academy of Medicine (NAM, formerly the Institute of Medicine/IOM) released its recommendations for Systemic Exertion Intolerance Disease (SEID) as a replacement for “ME/CFS,” I saw a lot of people spreading this myth: That “post exertional malaise” (PEM) is what differentiates myalgic encephalomyelitis (M.E.) from other illnesses. This is not true, nor is this what’s explained in the NAM’s report. At most, the report says that the presence of PEM helps distinguish it from other conditions, while it is what best distinguishes “ME/CFS” from idiopathic chronic fatigue. PEM alone is not specific to M.E., Chronic fatigue syndrome (CFS), or SEID, just like unrefreshing sleep is not specific to any one disease. Continue reading “The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?”
It occurred to me one day several months ago that I’ve never stopped to answer a question people may have, the same question I often wonder about others in my situation: When I talk about being in pain, what am I actually talking about?
In my case I’m talking about severe head pain, and what some call “malaise,” but… Malaise is what you call it when you are sick and you feel “off,” and unwell, and basically.. gross. It’s also a term you can use for having something as simple as a cold or as insufferable as end-stage AIDS, much like a fever has drastically varying levels of severity.
In “malaise” standards, what I feel is like my immune system is fighting to save my life but it may or may not actually take me down with it. Most types of pain are usually localized, or at least, if it’s everywhere it’s an identifiable ache. This? Maybe I should invent a new term.
Deathlymalaise. Yeah that sounds about right.
What happens in my newly coined “deathlymalaise” (feel free to use that), is this:
I always have “the” headache with it, the one I’ll discuss in a moment.
I have a low-grade fever, and I alternate rapidly–or maybe there is only the sensation of rapid cycling–between uncomfortably warm and sweaty, and clammy, cold, with freezing and numb extremities. It’s like when you have the flu and every five minutes you’re either tossing the blankets across the room or clambering to collect anything made of fabric and burrito yourself in it. My GP says this is my immune system. Apparently it’s trying to figure out what to do with itself.
I feel dizzy and there is often a “buzzing” sensation, but whether it’s nerves sending wrong signals or my vascular system trying to sustain normal circulation, is anyone’s guess.
My lymph nodes, particularly the axillary and cervical nodes (under your arms, and around your neck), have a constant, dull ache, and get stabbing sensations.
I get muscle spasms in my neck, back, and all around my abdomen in general, that are so sudden and severe I usually end up screaming.
I feel a burning sensation in the nerves in my face, as if they were on fire from the inside-out. I think it comes from the same inflammation responsible for my headache. The trigeminal neuralgia is thus usually activated and I have to stop myself from clawing at my face–that wouldn’t help much, now would it?
I feel as if I’m going to vomit, but I won’t let that happen–I take Zofran as necessary.
My joints–moreso on my left–swell and get stiff, difficult to bend or move.
There is substantial fatigue during these “bursts” of deathlymalaise, but sitting or–more appropriately–lying in one place is usually not an option because this is the kind of suffering that, on the pain scale, would be at the level that it interferes with your every thought.
I’m a complete and utter wreck. And please remember, this list is only covering the malaise part of the illness, something that has been very prominent since The Big Relapse. It’s not medication withdrawal, because these symptoms are part of the reason I started taking anything to begin with, and it’s not herxing. It’s just disease. It makes me uncomfortable to even type that, but it is what it is. I can’t sugarcoat something like this.
[ETA, 2016 Feb] In Dr. Hyde’s book about Myalgic Encephalomyelitis (which back then in 1992 he abbreviated as “M.E./CFS”), he describes our malaise like this, under “Pain Syndromes Associated with [M.E.]”:
” ‘Malaise has probably occurred in every [ME epidemic] described in the literature.’ Malaise is accentuated in the Initial Stage and it recurs for as long as the disease process exists. Malaise is almost impossible to describe. It is often referred to as the pain and discomfort that one has during the acute phase of an influenza. However, it is not always the same. The patient feels terrible, feels as though he is about to die.“
“It particularly injures the sensory and dulls the cognitive abilities of the brain. The pain seems to originate everywhere, both on and within the chest and abdominal areas, head and extremities. The rapid muscle and brain fatigue that is normal in [M.E.] becomes accentuated.”
As you can see, what I described when I first posted this in 2013 is almost exactly what Dr. Hyde wrote; I was absolutely floored when I read it, and honestly, most of the book is like this: full of specific, uncanny validation about all the quirky things that occur in this disease. If you have M.E. I highly suggest you buy it while it’s still available.
Some of the other things I wrote are very specific of Lyme disease, such as the burning in my face where the infection damaged multiple nerves, and the “buzzing” sensation, which many Lymies describe as, it’s like you’re sitting atop the hood of a car while it’s running. [/ETA]
I usually feel aghast–but almost in awe–at the reality that a person could possibly feel so horrendous, and helpless at the thought that a hospital–the place you’re raised thinking can always help you during any health crisis–cannot do anything, because there is nothing to stop what’s happening. How do you explain to someone how terrible all that feels, with the word “malaise”?
Several of my friends who also live with Lyme & Company admit to feeling this, some even writing letters or notes to loved ones during the worst “episodes” because they think surely something must be about to go very, very wrong for the human body to give out all these warning signals.
They usually say, “I feel like I’m dying.”
We really do.
The progression of my headaches has been a monster all its own. Their onset began with occipital neuralgia four months after my tick bite, almost seven years ago. Bartonella came with its own, mostly frontal-oriented headaches; I don’t have those any more. But almost without fail, I have had a particularly severe headache for 4-5 consecutive days every four weeks since the Lyme invaded my nervous system. Now, that exacerbation happens about every two weeks, thanks to the Mycoplasma (or at least, I assume).
I used to requite prescription-strength medications for breakthrough pain only a few times a year for the attacks of occipital neuralgia. As things steadily progressed (especially within the past two years), I went from needing them an average of 1-3 days per month, to having 3-week-long bouts of unrelenting head pain which alternated with 3-pain-free weeks, seemingly for no reason. Now, since my relapse in October, I’ve needed them every single day except 1-3 days per month. I guess all of this is why needing them so much frightened me: I wondered–and still wonder–if there is no turning back from this point. Regardless…
This head pain is a throbbing sensation at the back of my head, the base of my skull and down into my neck. I wouldn’t outright call it occipital neuralgia, because my attacks of O.N. are even more severe and almost completely untreatable. But otherwise, it’s just like them. Baby neuralgias? They even exhibit the so-called “ram’s horn pattern,” and the top of my head often goes numb, and I am sensitive to anything touching my scalp. There is no sensitivity to sound, but extreme sensitivity to light. I get bursts of nausea. Since vasculitis has been such a major feature of this relapse, these “headaches” may have some vascular component.
As of right now, later this month my pain management doctor wants to try a shot in my neck. I’m uncertain is he intends a nerve block for O.N. or another route, but since this has gone on so long, it’s time to try something new.
There’s not really a pretty way to close this article. But when I talk about being in pain, to all of this is what I refer.
♥ a rainbow at night
“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.”
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
Source: Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi
Background: Lyme disease is a tick-borne illness caused by the spirochete Borrelia burgdorferi. Although antibiotic therapy is usually effective early in the disease, relapse may occur when administration of antibiotics is discontinued. Studies have suggested that resistance and recurrence of Lyme disease might be due to formation of different morphological forms of B. burgdorferi, namely round bodies (cysts) and biofilm-like colonies. Better understanding of the effect of antibiotics on all morphological forms of B. burgdorferi is therefore crucial to provide effective therapy for Lyme disease.
Methods: Three morphological forms of B. burgdorferi (spirochetes, round bodies, and biofilm-like colonies) were generated using novel culture methods. Minimum inhibitory concentration and minimum bactericidal concentration of five antimicrobial agents (doxycycline, amoxicillin, tigecycline, metronidazole, and tinidazole) against spirochetal forms of B. burgdorferi were evaluated using the standard published microdilution technique. The susceptibility of spirochetal and round body forms to the antibiotics was then tested using fluorescent microscopy (BacLight™ viability staining) and dark field microscopy (direct cell counting), and these results were compared with the microdilution technique. Qualitative and quantitative effects of the antibiotics against biofilm-like colonies were assessed using fluorescent microscopy and dark field microscopy, respectively.
Results: Doxycycline reduced spirochetal structures ~90% but increased the number of round body forms about twofold. Amoxicillin reduced spirochetal forms by ~85%–90% and round body forms by ~68%, while treatment with metronidazole led to reduction of spirochetal structures by ~90% and round body forms by ~80%. Tigecycline and tinidazole treatment reduced both spirochetal and round body forms by ~80%–90%. When quantitative effects on biofilm-like colonies were evaluated, the five antibiotics reduced formation of these colonies by only 30%–55%. In terms of qualitative effects, only tinidazole reduced viable organisms by ~90%. Following treatment with the other antibiotics, viable organisms were detected in 70%–85% of the biofilm-like colonies.
Conclusion: Antibiotics have varying effects on the different morphological forms of B. burgdorferi. Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease. (Emphasis Added.)
Read as (what us “Lymies” have known for years): The bacteria change forms to evade the different classes of antibiotics, and none of the antibiotics they researched had greater than a 55% success rate at eradicating Lyme disease’s biofilm form. Rifampin supposedly treats the cyst form, I wonder why they didn’t test that? Granted, all of this was done in-vitro, and sometimes things react differently when in the human body.
First off, I have to say this makes me feel very good about my LLMD suggesting that I go on Tindamax after the Rifampin! If the Rifampin is killing the round/cyst form right now, and this study shows that Tindamax (tinidazole) eliminated up to 90% of both forms of the Lyme bacteria… Goodness, I could be cured at that rate! (Well, unless they’re making biofilms… The jury is still out on how to completely get rid of those.) I’m also impressed that tinidazole kills even more than its close-cousin Flagyl (metronidazole), because we all know how well Flagyl works for neuroborreliosis. From what I’ve looked at, Tindamax also has less side effects.
At first I was shocked to read Doxycycline actually increased the round/cyst form of the Lyme bacteria, but then I remembered Doxycycline does not kill, it only stops the replication process. So if the bacteria cannot reproduce one way, they will just morph and produce in whatever way enables them to survive. This study actually proves that.
I think this study was much-needed, and even a bit groundbreaking, if you ask me. But shhhh, “chronic Lyme doesn’t exist,” you know…
♥ a rainbow at night
[ETA: This makes more sense today, so I had to edit a few things. I got confused into thinking that the biofilm and cyst form were the same thing, but now I remember from the Under Our Skin documentary that the biofilms are those little clusters of spirochetes stuck together in that gel-like substance. You can go here to read further explanation.]