Remission from Fibromyalgia?

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

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

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

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

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


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

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

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

  1. Magnesium

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

  2. Foam mattress topper

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

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

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

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

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

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

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

  6. Exercise daily

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

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

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

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

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

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

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

a rainbow at night

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

Black bean brownies, anyone?

Time for something lighthearted now, yes? Last week I made black bean brownies. Yes, you read correctly: Brownies made from black beans. The recipe I used is this one, but I altered it so that in addition to being gluten free, dairy free, and soy free, they’re also sugar free. :) Use these directions if you’re feeling brave enough to consider a baked delight with beans instead of flour (and remember, chocolate comes from beans!).

Ingredients

  • 1 (15.5 ounce) can black beans, rinsed and drained
  • 3 eggs
  • 3 tablespoons vegetable oil
  • 1/4 cup unsweetened cocoa powder
  • 1 pinch salt
  • 1 teaspoon vanilla extract
  • 1 cup Xylitol
  • 1 teaspoon instant coffee (technically optional, but highly recommended)
  • 1 teaspoon baking powder (also optional, but recommended if you want cake-like brownies)

Directions

  1. Preheat oven to 325 degrees F (160 degrees C). Lightly grease an 8×8 square baking dish.
  2. Combine the black beans, eggs, oil, cocoa powder, salt, vanilla extract, xylitol, instant coffee, and any optional ingredients in a blender; blend until smooth; pour the mixture into the prepared baking dish.
  3. Bake in the preheated oven until the top is dry and the edges start to pull away from the sides of the pan, about 30 minutes.

Nutritional Information

Serving Size 1/16 of a recipe
Servings Per Recipe 16

Amount Per Serving
Calories 126
Calories from Fat 48

% Daily Value *
Total Fat 5.3g 8 %
Saturated Fat 1.8g 9 %
Cholesterol 40mg 13 %
Sodium 144mg 6 %
Potassium 139mg 4 %
Total Carbohydrates 18.1g 6 %
Dietary Fiber 2.6g 11 %
Protein 3.3g 7 %

Vitamin A < 1 %
Vitamin C 1 %
Calcium 2 %
Iron 10 %
Thiamin 5 %
Niacin 7 %
Vitamin B6 2 %
Magnesium 8 %
Folate 12 %
* Percent Daily Values are based on a 2,000 calorie diet. Your daily values may be higher or lower depending on your calorie needs.

Of course you can add walnuts or anything else you might like. The purpose of the instant coffee is to bring out the flavor of the cocoa. Also, I didn’t use baking powder, and my entire family was thrown off by the texture, so you probably want to add it; I’ve never met a brownie I didn’t like–fudge-like or cake-like–so it didn’t matter to me!

For my version of these, I lowered the original recipe’s temperature because Xylitol requires this. Xylitol is a popular sweetener in the Lyme world, because not only is it a natural alternative sweetener for folks like us who need to be on reduced-carb and reduced-sugar diets, but it actually helps reduce levels of candida yeast! It tastes exactly like sugar, but please don’t take this as an excuse to over-indulge. First off, studies have shown that the absence of sugar (glucose) is actually more beneficial to the reduction of candida levels than is the addition of Xylitol. In other words, don’t think that just because you eat still sugar but also eat xylitol, that the xylitol will take care of the candida, because it won’t. Also, xylitol (like all sugar alcohols) can have a laxitive effect if you consume too much!

But otherwise, happy sweet tooths, my dear readers. :) You can find Xylitol at most all health food stores, but it’s also available online under names like XyloSweet.

a rainbow at night

A positive post, with more improvement!

I’ve set some goals for myself:

  1. Brush teeth standing up.
  2. Get out of wheelchair.
  3. Cook for myself.
  4. DRIVE again.
  5. Be able to sit up straight, before I get back problems.

I’ve even already made progess with a few of them. The other day I was able to stand while brushing my teeth, and I’ve been doing it ever since. =) And I’ve been out of my wheelchair most of the time. Yesterday, I even danced! My POTS symptoms, as I mentioned in last post, are much improved but it just depends upon the time of day. I’m trying at various intervals to sit up straight, but I can’t push it too much. I only just now became able to sit up on my own at all; I mustn’t go too far! I now eat twice a day, every day, with lots of healthy snacks in between, and haven’t needed to supplement with Ensure as much. I don’t have as much digestion-related dysautonomia, so I don’t have to split up my meals like I have been for the past two months. It’s such a relief. Since my hospitalization, I was subsconsiously on edge because I never knew what would trigger that domino-effect of terrible symptoms, but I finally feel stable again.

I’m still seeing things. I get headaches every evening around 4-5 o’clock, which has been my pattern since starting the the Rifampin in January. After the Zithro in the late evening (around 6pm), they get worse. Last night my neck was very stiff; it was difficult to even turn my head to the side. I need ibuprofen almost daily at around the 4-5pm interval, as well. The lymph nodes in my throat begin to ache and I feel generally inflamed. I’m lucky that after a decade of taking it, I can still tolerate the ibuprofen, which I attribute to always, ALWAYS taking it with food, or a full glass of milk to coat the stomach. (The aloe vera gel I’ve taken every day for the past seven years probably doesn’t hurt, either.)

Probably the most amazing news I have, is that my 2nd Lyme flare cycle–which I’m near positive began after taking grapefruit seed extract (GFSE) in July of 2010–is, from what I can tell, vanishing. GFSE is known to be a cyst-buster, so my best assumption is that.. it actually did, and the result was another set of replicating Lyme bacteria? This 2nd flare cycle was always milder than my “main” flare cycle (which occurs roughly around the 16-20th), but still encompassed the same type of symptoms: Left sided problems, spine pain, cardiac arrhythmias, severe headaches, and higher fever.

I made a brief mention of this last month, while I was wearing the holter monitor and expecting it to pick up on the arrhythmias that would be happening near the beginning of April… Only to find out, nothing happened at the beginning of April! And this month is the same. I’ve not had any fever, nor severe headache, nor explosion of arrhythmia, nor spine problems. There was the neck pain from last night that I mentioned, and I had one episode of spontaneous arrhythmia yesterday, but this is nothing compared to what “should” be happening. This must mean something very good. =)

Also, I don’t think I ever got to mention my cardiologist appointment on the seventh. He basically said there was nothing there but a fast heartbeat…which is ludicrous, because 90% of the time when I had to press the alert button, I was lying down with a normal heart pace. :\ Unfortunately my appt was early in the morning and I wasn’t able to probe deeper and dispute his “it’s just fast” theory. Doctors are trained to not worry the patient unecessarily, so my best guess is, since he kept repeating “it’s nothing dangerous,” is that whatever was there, he doesn’t think is enough to cause concern. Because of this vanishing 2nd flare cycle, I never did get to record the main, most-troubling arrhytmias that I was having… Which is bittersweet, right? I’m glad that they’re gone, but I wish they had happened while something some recording!!!

I think I’ll end this entry with a new ability scale checkpoint. :) As of right now I think myself to be at.. 20% physical, 35% cognitive, and 28% symptom severity. I had went downwards since my last checkpoint, but I’m back up again, so my physical ability is about the same, I’m slighlty better cognitively, and much better (compared a 7%, at least) with symptom severity.

My mother and I are planning a trip to Walmart for tomorrow. Two sickly women with illnesses that contradict each other, plotting how to attack a supermarket. It should be interesting! I need to find the right time of day to approach so that I won’t need to wait 20 minutes for a mobile scooter to become available! This will be the first time I’ve left the house since that April doctor visit. I can’t wait.

a rainbow at night

Update.

I’ve been feeling mostly “okay” recently, in that I can now function throughout the day. In fact I was even wondering whether it’d be time to increase my antibiotics… And then this week happened.

This week has been exhausting. My menstrual cycle found its way back to me on the 11th, so. The weakness has been terrible, I’ve been half-asleep most of the time, and my air hunger has returned (in that I constantly need to yawn). My appetite is also quite poor.

Yesterday was really bad. The night of the 13th I got a severe headache (Lortab needed) and then the following day (yesterday/14th) I woke up angry at the world and came very close to needing oxygen again… I mean, no doubt I should have used it, but it was just so depressing to think of needing it after a month and a half of NOT needing it! I pulled through, obviously, but could have come out of it a bit quicker had I just grabbed the O2. Sigh. Oh well. That’s my stubborness, and as of last night I was feeling much better.

Bartonella flares appear to be happening as follows:
~ April 3rd
~ April 8th (bad day)
~ April 14th (bad day)

Last night I drunk an Ensure… I wasn’t thinking and had the entire drink. So what happened that night here happened again. Trouble breathing, numb tongue and throat, limbs tingling, numbness in right arm. It was even more startling when I wanted to inhale but my body wasn’t doing it…! But I knew the dysautonomia was causing it, so I didn’t spaz. I’ve been drinking two bottles of Ensure a day, in 4-ounce doses to not overload my digestive system, which I should have done last night, but forgot. :\

So I think I should still be on this small doses. The herxing just hasn’t been as bad, which is good, but.. as long as I’m still herxing a little, right? I still flail and have bursts of strange thoughts after the Rifampin. And after the Zithro, my gosh…! I am so dizzy. In fact I need to mention that I’ve been dizzy for the past three weeks. I may even need to be keeping track of it, more. It gets so bad sometimes my eyes cross and I can’t focus.

In general, I am in and out of the wheelchair. I can usually walk to get something, but cannot stand in one place, even for a few seconds. In the evenings and night, I am always better, but this is nothing new. Waiting for my appetite to return… STILL NO CARDIAC SYMPTOMS!!! This is so significant and amazing! :D And my eyes have stopped twitching… :)

a rainbow at night

Slowly but surely…

…I think the pieces are coming together. I had several “episodes” since I last posted, and.. let’s be clear, that by “episodes,” I mean the thing that happens when my face and tongue go numb, my arms (or arm) goes numb, I shake and temporarily cannot swallow, which may or may not be precipitated by an urge to urinate. I’ve had lots of different types of numbness over the past several weeks, so I felt a need to clarify.

I eliminated several other things that had any timing whatsoever to do with these attacks and/or my Migraines.

  • Ensure
  • BOOST High Protein shakes
  • things with Vinegar
  • things with nitrates
  • caffeine
  • black tea (even decaf)
  • coffee (even decaf)
  • Truvia
  • Splenda,
  • and Aspartame (which is the devil anyway).

Because anything and everything can give me a Migraine attack these days. I had something marinated in apple cider vinegar and my body had a general meltdown. I had green olives with half a protein shake and had another “episode” almost immediately, so I can’t tell which was the culprit. But, having done all this, I actually haven’t had a Migraine in two days. I can’t believe that’s an accomplishment, but… I’ve been getting them every day, otherwise. I even left the house yesterday, and didn’t get one! And in the mornings, I don’t have much numbness in my arms and face, but I can’t yet determine if it’s the absence of Truvia or just a well-timed symptom. I’m scared to find out the hard way, right now. The general battle is finding out what cluster of symptoms is the bartonella, what cluster has to do with my Migraines, and how do we prevent them both. One interesting thing though: It happened this morning, and I hadn’t any Truvia, or any.. anything! Which means it can’t be purely the Truvia, despite me having a decrease in overall numbness since ceasing it. (And there’s the kicker. None of this is purely anything, but it seems to be a lot of stuff happening wrong at the right time. Which is another characteristic of my Migraines: They don’t happen until a lot of triggers add up, and then just one more will push it over the edge.) Now, what affects me worse in the mornings? Bartonella. So, which is it? My conundrum should be apparent.

My LLMD put me back on Rifampin as of the 17th since I didn’t have anything crazy happen after a month and a half on it. Then, instead of adding Doxycycline, which is driving me out of my mind with its effects and herxing and messing with my throat/vague nerve, we’re adding the Zithro! I’m pleased to report I can handle all temperatures of food and drink and have no trouble with food texture. :D I’m on just 250mg, but considering this lowest dose still makes me feel like I have the flu every evening, I’m glad we’re starting so small. I’m still on a normal dosage of Rifampin and therefore we’re killing the bartonella at a reliable level, so that’s great news for me. I will still improve at a fairly decent rate, and can expect a change in ability levels within just a few months. I’m also lucky to not have developed any reaction to Rifampin, which can happen when you stop and have to start it again. It’s apparently still working as well, because the bartonella flare I had after I restarted it (which happened to be the next day) was insane. As in, curled up in a fetal position in a dark corner of my room, sobbing hysterically, not knowing what’s going on, or even how I got there, insane. So… We definitely have to kill them bugs. Kill them dead. (This goes in the category of “things I’d never admit did I not know they happened to most people with chronic bartonella.”)

The Topamax is amazing and I’m at the full 25mg right now. My Migraines… Well, I’ve had them a long time. So I can identify when they’re coming on, but lately they have been so complex, it’s ridiculous. Usually, my migraines affect the right side of my face, with numbness and pain and temporary facial unresponsiveness; my speech slurs and I cannot tolerate any sound or light. Bartonella attacks the right side of my face too, though. :\ This recent development where my arm goes numb and my tongue goes numb? It’s anyone guess whether that’s part of a Migraine or part of a bartonella flare or herx. (It’s sometimes accompanied by this “zap” sensation as well, which I’ve never felt as part of any Migraine.) But after searching LymeNet I found out that other people with bartonella are experiencing numb tongue accompanied by numb arms. How strange is that?! One thread even talked about the general numbness that’s been creeping up on me since I started the Rifampin! And on that note, twice after taking Rifampin this time around, I couldn’t feel my legs, and all of my limbs generally have that “fallen alseep” feeling at various parts of the day now. Especially at night, when I wake up and notice my limbs are cold and numb. (That’s a bit scary, but as long as the sensation returns, I can deal with it.) So! The mystery of the random arm numbness and terrible headaches that often precipitated them, may be solved! My severely increased Migraines may just be an unfortunate consequence of treating bartonella. What also falls into place, if this is true, is why all all of this gradually got worse throughout treatment, until I got on the Doxy and all hell broke loose. Hopefully being on Azithromycin will prevent such a severe cumulation of symptoms.

In general, the “episodes” and my migraines are getting less severe and less frequent. I still have trouble when I eat sometimes, however. (Things that HAVEN’T been happening, barely at all? No dystonia, no air hunger, and no troubles with low oxygen.) I will be sticking to this “Migraine diet” until I feel safe enough to come off of it. The Ensure drinks are once again off-limits, but that’s okay because my appetite is very healthy and I’m not losing weight! I’ve been gradually adding back my supplements and herbs as well, and I’m able to tolerate them again. I’ve actually been walking around more in the past few days than I have.. possibly since January, which is amazing. As long as I don’t overdo it, I think I’m finally at a stable point again. I’m not tired, so I’m having to force myself to rest and not do more than is necessary, which is.. well, it’s annoying. It’s like sitting a healthy person in front of an amusement park with unlimited tickets and telling them they can’t get up. :| But if I’m good now, in the future I shall be able to be active without dire consequences, so I must be patient. God’s given me the best opportunity for having rest, so I need to take advantage of it. On the scale right now I’d say I’m at, 20% physical, 30% cognitive, and still 7% symptom severity. The symptoms are definitely the worst part of this right now. They are still terrible and flare so easily. But I do have a lot more cognitive functioning so I can at least use my brain more. :)

Ah, and I saw my primary physician. I had to update her on everything that’s happened during the past three months. She says not to be too worried with the brain lesion unless it changes…which is good advice, right? It’s there, it’s done; it’s if it changes that will be cause for concern. She also wants me to see another cardiologist in case something else is contributing to the mitral regurgitation. Which is, again, sound advice. Just because I have things that affect my heart doesn’t mean nothing else can be going on. So for peace of mind, my mother is taking me to one Tuesday to get a bunch of tests run, just to make sure there’s nothing there we can potentially fix.

I’ve had the same doctor for ten years. She’s seen me from the moment I started going downhill, and through the M.E., and through the remission, and then through the relapse and these infections… So her advice means more to me than any other doctor. She briefly mentioned to me something that.. sort of startled me, in a strange way. She said something to the effect of, I know you’re at a race against time to treat these infections, but you know, even in cancer patients, if the chemo is going to end up killing them… Sometimes it’s wise to just let things take their course, if the treatment is going to be just as bad or worse than the disease, so I really hope you can get on something that will work, soon, because it pains me to see you continuously going downhill like this.

…Insert sad face here?

Hearing her say that just sort of drove everything home for me, I think. These past three weeks–goodness, nearly a month!–since ‘all of that’ happened, have just been one big blur and me taking it one hour to the next, to not upset the delicate balance that my body is struggling to maintain. Consciously I do realize what I’m up against, but there’s something about talking to your doctor for twenty minutes and having her sum it up all into that

It was never a surprise that things might get this bad. Even in my old journal from the past year, which I reorganized, I found where I’d written things like this:

December 5, 2009

“Two weeks ago I couldn’t make it down my hallway. Tonight I shuffled around in the yard, and made a snowman. No, I wasn’t exactly running around, but I was STANDING UP and doing so for more than two minutes…

I’m making this post now because if what I feel right now is any comparison, tomorrow is really going to suck. No one wanted to come out in the yard and make a snowman with me. They walked outside for a minute then watched from the door as I shuffled about, but… Hell, I have no idea what condition I’ll be in next time it snows, especially if that’s a year from now. I could be better, yes, I hope, but I could very well be bedbound yet again, or worse; anyone faces these risks for some reason or another, but that knowledge is always in my mind because of.. you know.”

I guess it’s sort of like when everything tumbled in July of 2010, and I ended up living with family again, barely having a spare moment to think because things had reached a new level of bad and it all happened so fast… It just happened again, I guess. And now I’m realizing it. (Granted, I’m back on my olive leaf extract, so I’m much more “aware” of everything again!) But somehow–and the media doesn’t help–you just imagine that with enough determination you won’t “let” yourself get this sick. Ahaha. Like it’s a choice…

a rainbow at night