After almost seven years with this infection, I think the bartonella may be gone for good.
If you recall from this previous post, I talked about how my health was either about to nosedive or finally overthrow this infection thanks to the millions of antibodies I now get infused into my body every four weeks (certainly many of which are bartonella antibodies, since this bacteria is so common)… Guess which one happened?
Since April, I’ve been having none–none–of those symptoms I talked about eight months ago.
My favourite part of this (aside from the “won’t have bartonella-induced damage as a possible cause of death” thing, of course) is that I finally have my personality back, without a lapse every five or six days. I am emotionally stable! I also think that toxoplasmosis may have been playing a far greater role than my doctors originally thought, because my level of extraversion is also completely gone and I am now a solid INFJ instead of the ambivert I’d been for most of my life… But that’s a topic for another day.
…Or bartonella. Or mycoplasma. Or similar infections that are commonly found in the same tick that carries Lyme disease. Unless you’re like me and you happen to get them from other sources like fleas, because you’re immunocompromised and collect infections like some people collect stamps.
I’m not sure which is the true culprit. I know I started getting occipital neuralgia about four months after my tick bite, so that is definitely Lyme disease-related, but I haven’t had an attack of that in a long time; I think it’s been a year?
My serious cranial nerve involvement began when I got Bell’s Palsy immediately after contracting mycoplasma pneumoniae, an infection that usually causes “walking pneumonia” but has been known since the 1970s to also wreak havoc elsewhere, like the nervous system. It can cause just about everything that Lyme disease can, and persist even after treatment by mimicking the body’s own cells (outer surface proteins). My right eye twitched and my face drooped. I’ve mostly recovered, but some of the damage is permanent. Then my left eye began twitching and it got damaged. That is also permanent. It was all downhill from there as far as nerve damage goes, but I’m here to talk about the ones in my face.
I began treating with Rifampin and Doxycycline in January 2011, and all hell broke loose: That’s when the autonomic neuropathy made itself apparent, culminating in its diagnosis a few months later. I can’t coordinate how it all fits together, but I know my vagus nerve became damaged, my trigeminal nerve got involved somewhere, the Bell’s palsy is a factor (i.e., damage to the seventh cranial nerve, literally called “the facial nerve”), and my migraines are connected.
When the autonomic mayhem landed me in the hospital, I would try to eat something, get an “episode” where my vagus nerve would trigger all sorts of things it wasn’t supposed to, and I’d get a migraine. I got so many migraines I had to be on Topamax for almost a year. Now these days, instead of my nervous system having a meldown, I’ll sometimes get facial pain when I start digesting, again triggering migraine-like pain on the right side of my face until the digestion stops. This can happen even if I haven’t eaten, but the act of eating can apparently be a huge trigger for trigeminal neuralgia; more on that horror story, below. But how did they all end up triggering each other?
The trigeminal nerve is implemented in migraines and facial pain.
The facial nerve can also be implemented in facial pain (ha, no kidding!), and the tongue numbness I get.
Episodes of trigeminal neuralgia can involve the trigeminal nerve and the facial nerve simultaneously.
And the vagus nerve–as it pertains to this post–is responsible for digestion-related reflexes…
But again, how did it come to be that my vagal reflexes got connected to my trigeminal response, in ways they previously were not? All I know for sure is one or more of these infections attacked my cranial nerves, and I’m left with odd, painful remnants as my body has attempted to heal.
After my last post, the “tension-headache-thing-that-wasn’t-quite-a-tension-headache”-thing went away and was replaced with the worst episode of trigeminal neuralgia I’ve had to date. Perhaps the tension-like pain was a precursor? (A Lymie friend on Twitter mentioned that she often gets headaches or migraines before her trigeminal neuralgia attacks, too.)
The best way I can think to describe what happened is that, I ate a bowl of crunchy cereal, and immediately after it felt like my teeth were going to explode. It’s one of those things where, if someone else told me the level of pain they were in, I would swear they were exaggerating because how is that possible? My other attacks have been similar–extremely severe, extremely sudden pain that makes you start shaking from its intensity–but it’s never lasted quite this long.
I remember a long time ago writing about another unusual headache, something that acted like “an ice pick headache that keeps on going.” In hindsight, that headache that felt like someone stabbed me in the forehead may have been an episode of trigeminal neuralgia, too. :\ It certainly sounds like it, from what I wrote.
I hate how deceptive it can be, when it starts to fade away only to attack you suddenly again. It took several days to completely go away and stop fading in and out. I have moments of unexplained facial pain daily, anyway, but nothing so severe as that. For my usual, spontaneous facial pain–the kind that is often tied to my digestion for some unexplained reason–butalbital is a huge help. It’s a huge help in my neuropathic pain in general, actually, even though I’ve never heard of anyone else using it for that. Half a tablet of Fioricet (or Bucet, which is the same as Fioricet but without the caffeine; most doctors don’t even know it exists) and that kind of nerve pain is usually gone.
Like occipital neuralgia, nothing much helps trigeminal neuralgia, or at least nothing that my system can tolerate. (Things like carbamazepine are completely out of the question for me.) That night, I was already on hydrocodone and ibuprofen, but had to take twice as much as I usually need, and it still only dulled it enough so that I wasn’t shaking. I couldn’t lie down and put any pressure on my skull until it began to ease.
The gratitude I had for being able to take those pain relievers cannot be put into words. And I’m still trying to wrap my head around the fact that something can hurt that much, and that I went through it. If you’d have told me two years ago I’d be going through something that would make my face feel like I was being stabbed and my teeth as if they were going to explode out of my skull at any moment, I’d have called you crazy.
I feel so much for people who have to go through TN, especially if they have no idea what is causing it. At least I know what is causing mine.
If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate Medical Doctor or LLMD, you probably do–you can read this and call IGeneX to order a testing kit for your doctor. Igenex has an accuracy rate of 95% and tests for all possible reactive bands, unlike standard testing which only checks you for the most common thirteen and produces a staggering rate of false-negatives. Additionally, you may watch Under Our Skin, an excellent documentary film containing people with illnesses like Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Parkinson’s, and ALS, who found out Lyme disease was the cause of their symptoms; most recovered.
♥arainbow at night
(Postscript: This is not related to TN, but with this month’s Lyme flare up, I had my old parkinsonism symptoms of slow movements and “freezing” while walking. It’s been a few months since I’ve had those, and they definitely caught me by surprise, especially with how slow my hands were functioning. Those of us with Lyme disease know how startling it can be when you’re doing (relatively) “okay” then suddenly your body thinks it has succumbed to Parkinson’s overnight! Luckily, as usual, it only lasted a few days and I am all right, now.)
Fibromyalgia (FM, FMS) 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 as well as 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 fibromyalgia will be hurting when they are sitting, standing, walking, or 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 fibromyalgia 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, which causes bursts of brain activity during what should otherwise be restorative sleep. Partly because of this, fibromyalgia is accompanied by a great deal of fatigue that may or may not be manageable. Cognitive problems are multiple and very prominent, including things like severely impairedshort-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.
It is known that fibromyalgia can disappear on its own when it’s associated with myalgic encephalomyelitis (ME).** But what about otherwise? Does treating the disease that triggered FM always make the fibromyalgia go away? That certainly wasn’t the case when I fell ill: Although myalgic encephalomyelitis 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. returned/relapsed. I expected that additional neurological trauma might reawaken 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 fibromyalgia ever naturally remit on its own in other circumstances? We may never know, because the consistent over-diagnosis of fibromyalgia has severely muddied scientific research. For instance, there may be thousands of people diagnosed with FM who also have M.E., who’ve just had the unfortunate circumstance of being diagnosed with fibromyalgia 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 fibromyalgia (as well as other diseases like Multiple Sclerosis and Parkinson’s) who found out Lyme disease was the cause of their symptoms.
I don’t claim any of the tips below to be a cure–I think my fibromyalgia 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.
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. (I currently use magnesium l-threonate, however.) 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.
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!
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! I noticed I had more energy and wasn’t as weak. I highly recommend you try the same test.
♦ For me, it was chicken, and luckily there are hundreds of ways to prepare it so I didn’t get bored. For vegetarians or vegans it might be soy, or something similarly protein-rich that contains all essential amino acids but without soy, like this delicious chocolate protein shake that I also use.
♦ 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.
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 back and forth between loose and hard stools, 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 can’t stomach the drinkable form so I’ve been taking them daily in capsules for eleven years. While aloe vera 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 these aloe vera juice softgels are much simpler, if you ask me.
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.
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.
ETA: I thought this much was obvious, but just in case: Please work closely with your doctor while attempting an exercise regimen so you don’t hurt yourself and so they can do any further testing that might be required based upon your response to exertion. These days you may even be able to find rehabilitation services specifically designed for fibromyalgia.
Am I cured forever? Maybe. I have days where something strange will happen–a herx while treating Lyme disease, 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 of the pressure causing a flare around the tender points; I no longer have irritable bowel syndrome; I no longer wake up 10-20 times per night; and 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?
As most of my readers may know, I contracted Lyme disease in 2006 from an infected tick. It had crawled onto my scalp, and had a family member not seen it, I may have never known I’d been bitten. I’d always heard “there’s no Lyme in the South” so I didn’t think anything of it, but fast forward to 2009 and a Western Blot revealed possible exposure. Once the disease has advanced to the late stages, the bacteria hide in your organs and usually evade blood tests as well as the immune system, which is why regular labs didn’t yield results. Further testing via IGeneX, a specialty lab, gave confirmation.
The infection has spread many places due to my late diagnosis, but has attacked my nervous system in particular (neuroborreliosis) because Borrelia species really, really love the brain. The disease affects me–and many others in this situation–in ways similar to multiple sclerosis.
“Late stage neuropsychiatric Lyme disease can best be conceptualized as a disseminated and progressive, (predominately sub-cortical), encephalopathy. Animal studies and autopsies have contributed to our understanding of the disease process. (25,26,27,28). As symptoms progress, additional symptoms occur and increase in severity.
These symptoms may be categorized in the following manner:
Cranial Nerve symptoms
Autonomic symptoms. Dysautonomia may be the result of involvement of brain stem, involvement of other parts of the autonomic nervous system, or end organ pathology – i.e.: migraine, temperature dysregulation, sexual dysfunction, bright light sensitivity, mitral valve prolapse, irregular pulse, neutrally mediated hypotension, asthma, non-ulcerative dyspepsia, irritable bowel, and irritable bladder
Hormonal symptoms: From the result of either hypothalamus or end organ involvement, i.e., thyroid disease, HPA axis dysregulation, decline of sex hormone functioning, hypoglycemia
Long track disconnection syndromes (very late in the progression of the disease)
It is highly unlikely I will ever get rid of this disease, but today, I’ve begun the battle to keep whatever health I can.
My insurance is still trying to cover Tindamax, so until then (hopefully next next) I am on Flagyl. I took my first dose today, and I’m doing okay! The neuropathy I’ve experienced just being off my bartonella meds for one week (which were the only thing keeping the Lyme disease subdued enough so that it wouldn’t take over) is amazing. This disease truly is frightening, and I’m so glad to finally be on something to stop its progression!
This year I feel I’ve really evolved as a human being. A lot of my focus has been to get rid of the anger I’ve felt. One major thing I finally let go this year, actually, was the resentment aimed at those who got to enjoy things I may never get to do, ever. Sure, I couldn’t be angry at friends or family, that was easy enough, but put me in the room with a stranger who’s telling me about how they’re going to a party that night with all their friends, and… You get the idea.
But I honestly don’t have any explanation for how I came upon the realization I’m about to share in this post, besides that my brain has apparently developed some kinder, more mature, more well-rounded ways of viewing things I’ve thought a thousand times before.
Probably close to 95% of people who have either Late Stage Lyme Disease or Myalgic Encephalomyelitis–or, if you’re like me, both–did not arrive at that diagnosis very easily. (As those are the main two diseases I have, they’re my focus, but feel free to apply this to similar illnesses.) No, it probably went something more like:
Go to the doctor expecting a quick fix for unusually-persistent symptoms
End up getting passed around to every specialist known to medicine because primary care physician has no idea what’s wrong with you
Get called crazy by every single one of them when the tests either come back negative or don’t show anything significant enough to explain why you feel like you’re dying
Possibly get prescribed the most strongly contraindicated “treatment” for your disease because no one knows what you actually have, yet, which makes you immeasurably worse
Get called crazy a few more times, and thus end up being evaluated by numerous psychiatrists who don’t find anything wrong with your mental state, or who
Blame everything on a mental disorder that doesn’t actually cause anything you’re experiencing
Finally get the correct diagnosis years later, through what seem like the most random series of events that ever played out in your life
Am I right?
All in all, the stage of acceptance known as “anger” doesn’t really ~just go away~ like some of the others.
The resentment and anger at all the doctors who could have helped you sooner had any one of them just not been so determined to say it was “all in your head”; the anger at those who said there was nothing wrong with you, when you actually had a progressive disease; the resentment at those who thought you were faking just because the tests were negative; the anger you experience all over again at remembering any and all of the horrible doctor visits where you were pleading for them to do something, anything, only to be told you just needed to get out more, and probably see another psychiatrist.
Trust me, I’ve been there. So when this sort-of-epiphany hit me, it was like a ten-year burden had been lifted off of me:
Did I truly, honestly think, that any one of those doctors who called me crazy, had any idea that I was actually suffering from a progressive neurological disease? Did I really believe that those people, those fellow human beings, somewhere inside knew that I was dying, and just decided to recommend exercise and antidepressants for the sheer fun of it?
If they had known that what a terrible disease the original “chronic fatigue syndrome” was–that it was actually myalgic encephalomyelitis, that it was made worse by exercise, that it was progressive in 25% of cases and fatal in roughly 1 of 20–would they have just told me to “get out more,” or “exercise more,” or “get back to work, you’ll be fine”?
If they had known that chronic Lyme disease (or bartonella or mycoplasma) exists where I live–that it would lead to multiple sclerosis, that the tests are often negative even if you do have it, that I still needed long-term antibiotics based strictly on the clinical presentation–would they have told me there was no way I could have it, that it was harmless even if I did have it, or that it was “only fatal in people with AIDS” and that there was “no reason to treat”?
Absolutely not. What kind of monsters did I think these people were?
No one in their right mind, especially a doctor who has sworn to Do No Harm, would know the truth of a disease so destructive and still call their patient crazy.
If someone was suspected of having MS, or HIV, or cancer, or a neurodegenerative disease, these physicians would have done everything they could to identify and fix the problem. If they had known what I was up against and the right approach to treatment, they would have done it.
But they didn’t know. And that wasn’t entirely their fault. Sure, there are always some doctors who go in it for the money and don’t care that much one way or the other, but they are few and far between. And sure, a doctor who keeps up to date on the latest research and alternative therapies is going to be more open-minded when it comes to a rare case. But when it comes down to it, there is a whole cluster of reasons why most of the specialists we saw were completely incapable of giving us an accurate diagnosis, the biggest of which is lack of information.
The reason we patients advocate so much is because in our hearts, we know that if someone else has the information we didn’t, they might not have to wait so long and suffer so much before getting accurately diagnosed and treated.
We also can’t forget that it’s not 100% the doctor’s responsibility to figure out what’s wrong with us based on absolutely nothing: We have to be honest and not afraid to be our own advocates. My LLMD says: The passive patient never gets better.
Now, there are some exceptions. There are doctors who know the facts and, because of legal reasons and public position, choose to turn and look away whenever one of “us” come their way. But that is also very, very rare. Most all of the dozens upon dozens of specialists had no idea what was wrong with me, what was wrong with you, and could only give us the best advice they knew, based upon what they thought was happening. In hindsight I really do understand how someone could think I needed psychological intervention, if they had no clue that my disease really did do all the things I was reporting.
You don’t throw a paralyzed child into a swimming pool–as happened to one internationally-recognized M.E. patient–to try to “snap them out of faking ill,” if you honestly believe they are sick. You do it if you honestly believe they are faking ill, because you have no knowledge of what M.E. actually does. If there is anyone to be upset with, it’s those in charge of spreading facts about these crippling diseases, and who don’t do it; not the doctors who have been armed with information they believe to be true, who just so happen to be completely misinformed about what we have.
So I finally just stopped being angry at them for not doing what they weren’t even capable of in the first place.
You may have heard before that, Forgiveness is letting go of the hope that the past could have been any different, a quote popularized by Oprah although she’s not who originally spoke it. And in my realization, I also let go of the thoughts that any of the doctors who had mistreated me out of their ignorance, could have ever treated me any differently based upon what they knew. If they knew better, they would have done better.
I am now going to instead focus on how blessed I am to finally have my diagnoses, and be glad that I am one of the lucky ones who still had time left to begin treatment. I hope this can help some of my readers move past their anger, also, perhaps just a little more quickly than they would have, otherwise.