Resuming Antibiotics for Lyme-Induced Multiple Sclerosis (MS)

© a rainbow at night

In case you missed it buried within my last post: I learned I do have multiple sclerosis. My neurologist said the official diagnosis as of right now is “Clinically Isolated Syndrome,” which can present with or without optic neuritis. Mine presented with, but I recovered well from that attack and my ophthalmologist confirmed there is no permanent damage to my optic nerves.

CIS and MS are the same disease process, but since MS literally means “multiple scars,” CIS is what you call the first episode, because there are a few people who never go on to develop another attack. But that wasn’t actually my first attack, or even my first documented attack. Because I refused to get a spinal tap at the time, the last lesion was attributed to “post-infectious demyelination” or “atypical MS.” They wanted to test my cerebrospinal fluid for Lyme antibodies at the same time as MS markers, and I couldn’t afford to risk a false-negative Lyme test, which my insurance could’ve used to deny coverage for my antibiotics. I have personally watched someone have their treatment revoked until they did additional spinal taps to prove the bacteria were there, and there was no way I was going to chance that happening to me, as horrendously ill as I already was.

I’ve had about five neurologists since 2008 because they keep moving, so my current neurologist is under the impression this is only my first attack, hence the CIS model. Most doctors rigidly hold the belief that neuroborreliosis (Lyme disease that has spread to the brain and spinal cord) and multiple sclerosis are not related, so my “official” diagnosis will change depending on which doctor I see and their level of understanding about my history. At any given time it’s one or more of the following:

  • Post-infectious demyelination
  • Clinically isolated syndrome
  • Multiple sclerosis
  • Atypical MS
  • Relapse-remitting MS
  • Neuroborreliosis
  • Inflammatory disease of the central nervous system
  • Demyelinating disease of the spinal cord
  • Disease of nerves in arms, legs, hands, and feet (what even is this diagnosis?)
Image from “LYMEPOLICYWONK: Misdiagnosis of Lyme disease as MS” by Lorraine Johnson, JD, MBA, and the Chief Executive Officer of LymeDisease.org. Click for more information.

Without medication, I regularly and predictably relapse about twice a year, about 5 months apart. I think the reason for this is, when my immune system starts to run out of options against the accumulating spirochetes, I usually develop a bacterial infection and require a short course of antibiotics, and those antibiotics also beat the Lyme back into remission for about 4-5 months max. But then the bugs build back up again, and my immune system gets stressed again, and I can’t fight off another bacterial problem again, requiring another short course of antibiotics which tithe me over for another 5 months… And so on. Rinse and repeat for the past five years since stopping Lyme disease treatment in 2012.

It wasn’t always so much like clockwork, though, for many reasons but largely because since “the big relapse” in 2012, I’ve only been able to tolerate an infant’s dose of antibiotics for maybe two days before my brain felt like it would explode. That is, until this year’s miracle happened:

In March, I was able to complete a 10-day course of antibiotics with absolutely no problem, for the first time since The Big Relapse. So, coupled with my new diagnosis, I decided to brave Lyme disease treatment again.

Yes, you read that correctly. What I wrote here five years ago has finally come to fruition:

“My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. … But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.”

My God, to be typing these words… There have been a lot of tears this past week. Over all my suffering, over all the life lessons learned, over all the years it looked like I would never make it here because of the constantly relapsing infections, over all the miracles that took place just in time, every time, so that I evaded further damage, and that I’ve actually healed from much of the damage already sustained… But mainly, over the fact that I am now here, having survived it all physically and mentally, and in a position where I am able to do something about it.

I made it.

And I’m starting treatment again.

We’re going to push it back into remission ON PURPOSE with an ACTUAL TREATMENT PLAN and an ACTUAL DOCTOR, not just skate by on whatever antibiotics I end up on, hoping it’ll be enough to fend off MS for as long as possible. The diagnosis is here! Time is up!


I’m doing pulsed antibiotic therapy this time–please research if you haven’t heard of it–because it turns out this is the best way to handle late stage Lyme disease that anyone knows as of yet. Continuous antibiotics may be necessary at first, but it will eventually come time for maintenance dosing instead of sustained eradication, because while chronic Lyme disease cannot be cured, it can be managed.

And please don’t come at me with your “it CAN be cured!” comments: People can be functionally cured, where the bacterial load is so low that it cannot cause problems, but there is no known way to permanently cure late stage Lyme disease, yet. It goes up there with all the other infections your body just learns to adapt to and live with, but which can cause problems again if conditions arise, and that is okay.

I wish someone had told me this when I first got diagnosed, but we truly are so much more advanced as a society in our knowledge of “chronic Lyme” than we were 11 years ago when I got infected. Back then, biofilms in Lyme were just a hypothesis, as was the idea that antibiotics were causing the bacteria to hide instead of die, both of which are proven facts, today.

It’s actually a comfort to know that even the strongest of bodies cannot keep these spirochetes under complete control, because it keeps in perspective that this is not just “my” body’s failure, or “your” body’s failure, but it’s not even a failure at all: It is the natural course of this disease to relapse and remit, and it is not your fault. There is nothing you were supposed to have done to keep it from doing whatever it’s doing, what it already did, or what it’s trying to do. I repeat, it is not your fault that you still have Lyme disease, and again, late stage Lyme disease CAN be managed. Alright.

Now, according to this 700 patient survey, only 55% of people with Lyme-Induced Multiple Sclerosis get better with antibiotics once the disease has advanced to this level. However, I’ve beaten the odds many times before, so I’m just going to do what I can do for as long as I can do it. This online research has many limitations but it does mirror the general consensus I’ve heard throughout the years.

Image from “LYMEPOLICYWONK: Do antibiotics help patients with Lyme disease who are also diagnosed with MS?” by Lorraine Johnson, JD, MBA, and the Chief Executive Officer of LymeDisease.org. Click for more information.

The reason for these hit-or-miss success levels is believed to be because killing the bacteria when they have already initiated an attack on your nervous system has the potential to further advance the disease instead of abating it, because when the bacteria die they cause an inflammatory reaction. Adding further inflammation, in the form of your immune system going in to clean up dead bugs, to an area that is already inflamed because the immune system is already active there, will make things temporarily worse. The $64,000 question is whether the brain will recover or is there so much infection that this additional inflammation caused by the dying bacteria will be just as bad if not worse than the inflammation caused by just letting the disease take its course.

People with tapeworms in their brain face a similar dilemma: Because a dead worm in your brain could trigger such a massive immune response to clean it up, many must simply live with the parasite latent in their brain instead of attempting to kill it, which could actually turn around and kill them, too. We need to realign our focus with living a good life, not becoming “bug free.” They are not mutually exclusive.

I couldn’t pulse antibiotics five years ago because treating bartonella was the priority, and you cannot do pulse therapy with bartonella bacteria present. They mutate far too quickly in their attempt to survive, and become resistant to the antibiotics used. Some antibiotics like Rifampin can lose their efficacy after just one break in treatment, rendering it permanently ineffective against the strains present. So, long story short, I needed continuous antibiotics for bartonella for about two years, with lots of complications, it still relapsed, and only starting IVIG two years later saved me. But before all the latter happened, I made it about six months on continuous Lyme-specific antibiotics–the same ones I’m on now–before I hit the infamous treatment wall and became too ill to tolerate absolutely anything. I.e. “The Big Relapse.”

(I feel like I repeat myself a lot here, but I know most people don’t have the time or energy to go back and read how I got here or why my treatment is taking/has taken this route. All that is available, though, if you’re interested–there’s a directory of categories and tags/content at the bottom of this site.)

We’ve no way of knowing how I’ll respond to things this time, but just based on how I responded to mere Amoxicillin at the beginning of this year, I think I stand a chance to respond favorably. I’m running out of time to do something here, regardless. According to my last MRI, there’s a potential “something” in the front part of my brain that they’re going to “watch.” I just did two spinal MRIs and should find out the results this week.

One amazing thing I learned, though–again, only by getting a copy of my MRI results–is that I have successfully REmyelinated! The biggest brain lesion from my first Lyme/MS attack is fully healed!! About a year or two ago, I suddenly realized I could walk in the dark again without falling over, which I hadn’t been able to do since my hospitalization around 2010/2011. I assumed my brain had found some way around this damage by using its innate plasticity (i.e. maybe it formed some new pathways to circumvent the lesion) but no! Even better! It HEALED!

I am so proud of my body and its resilience. It’s things like this that inspire and remind me that it’s not too late to heal, and that my body still prioritizes towards homeostasis and wellness.

I’ve finished my first pulse, and I already feel so much clearer in my head it’s ridiculous. I owe this entire post to those antibiotics. In fact the last several blog posts I published before this one were antibiotic-induced (haha), where I hadn’t been able to finish anything since they wore off. The only thing I managed to type for this post before starting treatment last Thursday was one paragraph that took me an hour and a half, that absolutely exhausted me and ultimately made such little sense I had to delete it altogether, anyway. But after antibiotics? I typed the entire draft of this post you’re reading, in one day. Another day was spent editing, and today I finished polishing it up to be scheduled for tomorrow morning. But go ahead and tell us, IDSA, how antibiotics don’t do anything for us, will you?

Experiencing this phenomena again essentially confirms to me (1) how I was ever able to maintain this blog all those years ago, and (2) why I steadily and progressively lost the ability to write the longer I went without antibiotics, eventually getting to the point where I could only post when I’d taken an antibiotic or two, or when I’d scraped together one paragraph per month until I had something legible:

All I ever needed was treatment for this disease.

Damnit.

Until next time,

Kit

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The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?

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?”

30 Things About My Invisible Illness You May Not Know

30-Things

This is a survey of sorts that went around several years back, obviously before I ever made this site. It’s still going around, so I’ve updated some of my old answers in response to more recent developments, and decided to put it here. :) Feel free to fill out this survey for your own blog! (The blank form is at the link.)

  1. The illness I live with is: primarily Myalgic encephalomyelitis (M.E.) and Borrelia burgdorferi (Lyme disease), complicated by additional infections for which I have tested positive: Bartonella quintanaBartonella henselae, andMycoplasma pneumoniae. There is no cure for M.E., and because of immunodeficiencies and extremely delayed diagnosis, I have late stage neuroborreliosis. I finished treatment for bartonellosis, but the disease is prone to relapse, and by mid-2013, it did.
  2. I was diagnosed with it in the year: 2002 for M.E.; 2009 for the rest.
  3. But I had symptoms since: 2000-2002 for M.E.; 2006 for Lyme disease; and 2008 for the rest.
  4. The biggest adjustment I’ve had to make is: putting forth a conscious effort to consider how every little thing I do (or don’t do) will affect me longterm. This is the crux of being a spoonie.
  5. Most people assume: that either none of these illnesses exist at all, or that they have no potential to go chronic or cause the level of disability I experience. Oh, don’t mind me, I’m just dying from something you don’t even believe in, that makes perfect sense…!?
  6. The hardest part about mornings are: dealing with the surge of pain I feel from lack of medication overnight; making sure I don’t pass out; stabilizing my autonomic nervous system.
  7. My favorite medical TV show is: Monsters Inside Me.
  8. A gadget I couldn’t live without is: my smartphone!
  9. The hardest part about nights are: sometimes my headaches are worse by then.
  10. Each day I take ___24___ pills & vitamins.
  11. Regarding alternative treatments I: have been helped more by herbs and specific supplements than any pharmaceutical drug, as far as the M.E. is concerned; but without the drugs for Lyme disease and the infections I picked up, I doubt I’d be typing this right now.
  12. If I had to choose between an invisible illness or visible I would choose: invisible, because I’m not a fan of attention and I like the option of blending in. Using mobility aids like canes, wheelchairs, and mobility scooters has brought me to the visible spectrum, and I still prefer invisible, with that in mind. But I really don’t have to choose, I guess–I’ve been both!
  13. Regarding working and career: I think this blog is the closest I get to working. We’re all here on earth to grow our souls, and it just so happens my soul decided I could best learn through the experience of sickness. As a wise woman once said, there was never a version of this life for me where I wouldn’t have been sick. I.e., this is what I have to work with! Every day I do the best I can for my body so that my soul can continue its journey here.
  14. People would be surprised to know: just how sick I get AFTER they see/visit with me, because my worsening can be delayed by 24 hours or more; that phone conversations give me a fever; that continuous typing or texting can lead me to muscle paralysis.
  15. The hardest thing to accept about my new reality has been: that the odds are, statistically, against me.
  16. Something I never thought I could do with my illness that I did was: travel across the country during nine days of feeling miraculously better (though it still ended with me in the ER) to accomplish my bucket list dream of visiting San Francisco, watching the sun set into the Pacific ocean, and seeing the majestic Redwoods in the Avenue of the Giants. Also, helping so many people with the words I share. At the time of my first editing this post, my site had exactly 26,000 page views. Now on my third edit (2014), it has had over 72,000… How is that even possible? I’m in awe. Thank you for letting me into your life.
  17. The commercials about my illness: are non-existent, which is almost good, because most common information about them is completely false and I’d rather people have no knowledge and come to me with questions, than to have a falsely constructed preconceived idea and think they already know everything because “the television said so.”
  18. Some things I really miss doing since I was diagnosed are: driving; getting lost in a drawing; walking normally/significant distances; laughing without consequences; visiting loved ones without having to plan for it a week or more in advance; being spontaneous…
  19. It was really hard to have to give up: my independence.
  20. A new hobby I have taken up since my diagnosis is: watching concerts on DVD; reading shorter things like articles and magazines; audiobooks; public blogging; painting; zentangles.
  21. If I could have one day of feeling normal again I would: RUN. FREAKING. EVERYWHERE.
  22. My illness has taught me: patience; acceptance; mindfulness; the importance of perspective; compassion; that I am more than what I can do for others; that I am more than what I “do,” period.
  23. Want to know a secret? One thing people say that gets under my skin is: when people attempt to relate by comparing situations that in absolutely no way are similar to living with severe illness. You don’t see me claiming to know “just what it’s like” to lose a child, do you?
  24. But I love it when people: know how to fight for what they want; I respect that.
  25. My favorite motto, scripture, quote that gets me through tough times is:
    “It is the greatest mistake of all to do nothing because you can do only little; do what you can.” (Sydney Smith)
    “When nature moves swiftly, it destroys.” (David Bate)
    “Smile, breathe, and go slowly.” (Thich Nhat Hanh)
    But He said to me, ‘My grace is sufficient for you, for My power is made perfect in weakness.” (2 Cor 12:9)
    I can deal with anything as long as I remember that whatever I need on any given day, it will be available to me. I believe the Universe looks out for us, and that there will always be enough, until there isn’t. Like Thich Nhat Hanh says, when conditions are sufficient, things manifest; when conditions are not sufficient, these manifestations withdraw.
  26. When someone is diagnosed I’d like to tell them: that their life isn’t over. And to properly educate themselves about the illness. As far as M.E.: Do not listen to anyone that says you “just need more exercise” because that one mistake can change the course of the entire disease. As for Lyme: If someone even mentions the phrase “post lyme syndrome,” claims you can’t have it because the test was negative/you didn’t have the rash, or claims that your symptoms must be something else just because you’ve already had the standard one month of antibiotics, get as far away from them as possible, order an IGeneX kit, and find an educated Lyme-literate physician.
  27. Something that has surprised me about living with an illness is: (1) how many people there are who want to blame YOU for being sick, because the thought of anything happening outside of their control terrifies them; (2) how many people abandon you when you get worse, for much the same reason; but also (3) how much some people are truly willing to help, and (4) how your closest friends will find a way to keep in touch with you.
  28. The nicest thing someone did for me when I wasn’t feeling well was: not blame me for the disease worsening; cook dinner for me; bring me back food from a restaurant: clean my house; spend hours drawing things for me; mail me CDs and letters and tea without any expectations that I’d reply (because often I can’t); insert many more things here, because I’ve been truly, truly blessed with support.
  29. I’m involved with Invisible Illness Week because: I think filling out this survey will help others feel less alone.
  30. The fact that you read this list makes me feel: like someone cares.

Find out more about Invisible Illness Awareness Week at their website. In particular, you can sign up for their updates to receive a free chronic illness e-book on “263 ways to do more than ‘just get by'”! I’ve browsed through it and it has a little bit of something for everyone.

a rainbow at night

last updated 2014, December 19th

Trigeminal Neuralgia: A Consequence of Lyme Disease

…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. 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 meltdown, 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. (Not in the US or want more help? Click here.)

a rainbow 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.)

My Life IS My Advocacy: Pay Attention to How I Got This So You Can Avoid It.

by me
original zentangle-inspired art, by me

I was going to concoct a more drawn-out post explaining why I’m not participating in any of the awareness campaigns of May concerning my illnesses…but then I came upon the realization that I don’t owe anyone justification for my actions–or “wise inaction,” as it were–and I am comforted by the knowledge that many other people are feeling the same way.

For those who can advocate–and I do it at random, it definitely has its purpose, particularly in our government to let them know we’re still here–that is more than fine. If it gives you purpose, and belonging, and you feel pulled toward it, then do so.

For others like myself, I feel my entire life is an advocacy campaign. I don’t need a month, or a day: I get 365 days, 7 days a week, 24 hours a day, of this is what this disease does.

Pay attention to how I got this, and how hard it is for me to get my health back, so you can avoid it. Know that I was just like you, once. Know that I didn’t think it could’ve happened to me, either. That’s the biggest advocacy I can do.

Talking about Lyme disease or myalgic encephalomyelitis every second of every day for a month and nothing coming of it–because people who have their minds made up are NOT willing to hear anything else–is not going to help me OR anyone else, at all. I am not my disease. I am not Lyme disease, or mycoplasma, or myalgic encephalomyelitis, or autonomic neuropathy, or dystonia. They’re just things that have passed into my life to help shape and change it into something else. That’s all.

I’ve spent the past decade as an advocate, and I think I’ve done my part. In my absence there will be others. I personally think people learn more if you’re not yelling at them in desperation, but that might just be my personal experience. I’ve been blessed to help several people find out they had Lyme disease, for example, and it had nothing to do with advocacy. You can’t force the information on anyone: If they want to know, they will seek. And if they’re interested, I am here.

So instead of advocacy, myself and several, several others are focusing instead on what makes us feel normal.

Sure, our every waking moment may be imposed upon by symptoms and dysfunction, but that is not all we are. No matter how sick I’ve ever gotten, nor how sick I will ever be, there’s always more to me than an illness. This blog has been my health diary, yes, but I don’t want anyone to get the idea that this is all I am or all I do. I have friends and family and pets and hobbies and interests just like anyone else. And I am an artist. Not because the title makes me feel important, but because at my core, that’s how I express myself, it’s who I become when my physical limitations allow.

“Every job is a self-portrait of the person who did it. Autograph your work with excellence.”

So, there will be no post specifically about my conditions (although I did finish the “What is M.E.?” section a while back). It’s time to cultivate the parts of my life that inspire and enhance, that make me feel human and normal, not advertise what makes my life a living hell for the other 90% of the day, mostly to people who already know what I go through, anyway. And I’m so glad to know I’m not alone in this.

I’ll leave you with this link: 60 Ways To Make Life Simple Again

a rainbow at night

Video: How Lyme Disease Changed My Relationship with Nature (Post Trauma Experience)

This video is not mine, but it helped me feel less alone, because my view of nature has drastically changed. I can’t even get bit by a few fleas without contracting whatever the little beasts are harboring, much less ticks, which are so much more inconspicuous.

I am so glad to know I’m not the only victim/survivor who feels this way. (Note: The music introduction only comprises the first thirty seconds.)

“I had no idea how easy it was to contract. And that it’s present everywhere. Trees, grass, dogs, people… Just about everywhere. So when I journey out into the world now, wherever there is nature, I have to be extremely careful. And I feel very conflicted, because the very thing that used to soothe me, and give me a place to go and get perspective on life, is now a place of danger. Oh, it always was, I just didn’t know it.

And when I go out, I observe people putting themselves at risk… But I can’t do anything about it.

Because if I say something, people think I’m loony. It’s just simply hard to believe, that you can get SO sick, by being in nature.”

Sometimes I wonder, if people thought ticks carried cancer, if they’d be more cautious. Or if it was common knowledge that Lyme disease can equal Multiple Sclerosis (MS), Parkinson’s, Lou Gehrig’s Disease (amyotrophic lateral sclerosis/ALS), Alzheimer’s, and Rheumatoid Arthritis (RA), just to name a few. :\ Chances are more likely than not you won’t ever be diagnosed with Lyme if you’re not looking, but instead you or someone you love will be diagnosed with one of the above (or Chronic Fatigue Syndrome/CFS, or Fibromyalgia), and then what?

Special thanks to LymeDisease.org, formerly CALDA, for sharing this on their Facebook page.

a rainbow at night

Starting Treatment for Late Stage Lyme Disease (Neuroborreliosis)

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:

  1. Brain Stem
    • 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)
    • Cerebellar symptoms
  2. Limbic system, greater limbic system, extended amygdala
    • Altered attention, emotional, and behavioral modulation
    • Pathological psychiatric syndromes
  3. Cortical (May be from either cortical or sub-cortical nuclei involvement)
    • Signature syndromes
    • Processing difficulties
  4. Peripheral Neuropathy”
The Neuropsychiatric Assessment of Lyme Disease, Robert Bransfield, M.D.

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!

[Update: January 1, 2013 – Edited some of the above because, well, things didn’t go as planned…]

a rainbow at night

IGeneX Results

So a few weeks ago my IGeneX results returned to me.

  1. My Lyme test is more positive. This is actually good, believe it or not! As you improve and your immune system is less burdened, you get more positive results. I now have bands 31, 34, 39–the most Lyme-specific of all, 41, and 58. I’ve never had band 58 before, and I’m not happy about it because this means the bacteria are now resistant to my fever response. This might explain why I don’t even get fevers during my Lyme flares, anymore. (See, this is your proof that they evolve.) And my band 41 now has THREE stars next to it… I didn’t even know you could get three stars! I.e., a very very positive band! I applaud my immune system for its abundance of “+” marks, whereas I’m usually only capable of “IND” bands, the very weakest positive response.
  2. NO Anaplasmosis. Also good! (Tested via IFA.)
  3. NO Babesiosis. VERY good! (Tested via IFA and FISH.)
  4. Possible exposure to either Ehrlichiosis (HME) or (and most likely) Rickettsia. I’m thinking Rickettsia felis–aka flea-borne spotted fever–is the most probable suspect, given my history of hundreds of catflea bites and the fact that I had a changing spotted rash on my feet for two years afterward. Good news is, Rifampin can treat it, which I’m already on, so. There wasn’t a specific Rickettsial infection test, so my results are technically showing exposure to E. chaffeensis, but it says on the paper it can cross-react with at least four other types of bugs, including all Rickettsia species.
  5. I FINALLY SHOW EXPOSURE TO BARTONELLA. So take THAT, fifteen other insensitive tests from Quest and Labcorp that said I never had it!!!

Both the Ehrlichliosis/Rickettsia and Bartonella tests were in the middle category of either resolving or active infection, depending upon your levels and symptoms. My bartonella score was basically borderline positive, but both results came from my IgG, i.e., where I have my primary immunodeficiency (PIDD, the reason most of my tests don’t show positive, because I don’t produce an adequate antibody response). Which means, if I weren’t immunodeficient, the scores would have been higher, theoretically high enough to surpass the “borderline” category. Or at least, my bartonella result would be. Regardless of anything, I do have the antibodies to this bacteria. I am fighting it.

If I don’t have the Rickettsia…well I just HOPE I have/had that one instead of the Ehrlichiosis! It must be the easiest to treat, because I no longer have the spots on my feet and the IgG for it was the lowest it could have been without being negative: Anything below 40 is negative, and I got.. a 40. Accommodating for my PIDD, and it’d probably be slightly higher and thus be “borderline positive,” but this is nothing to worry about, I don’t think. With no obvious symptoms and such low levels, this is most likely in the “resolving infection” category rather than “active infection” (in contrast to the bartonella whose titers are much higher and symptoms still active). Perhaps it is also low because of the cross-reaction factor? Again, I was tested for E. chaffeensis, so if I was tested specifically for Rickettsial antibodies, would it be slightly higher? Who knows.

But mainly I am so, so elated that we finally have something that says, Look, the bartonella is here, in contrast to the.. dozen or so other tests I’ve had in the past two years that said I never had it. Pfft! (Only in the chronic illness circle are you happy when tests show something is wrong.) I wish I would have gotten tested for this via IGeneX, sooner! Because:

These are my results after six months of Rifampin and Zithro–I only wonder what they’d have been in the beginning!

And by the way? The bartonella species I tested positive for was B. henselae–the cat scratch disease variety! I wasn’t even tested for B. quintana, the type that does the classic five-day fever cycle like I have, which prompted my doctor to start me on treatment… So, based upon my symptoms and flare cycle, there’s a high chance that I actually do have them both like I feared last year. (Cat fleas–from which I acquired it–can carry up to five different species of bartonella.) Speaking of that, B. henselae follows more of a seven day cycle, or at least a less-defined flare cycle than the B. quintana strain… So there: Maybe the bartonella seriously is the reason my Saturdays are so “inexplicably” and yet, reliably, messed up recently…!

As far as how I feel about the results… In a sense, I’m a little relieved to find out that I’ve had two strains of bartonella, and one other resolving Ehrlichiosis or Rickettsial infection. It helps me better understand why I became so unimaginably ill within such a short time frame.

I’ve always thought, How on earth can two infections at once bring me down that quickly, even if I did have M.E. and PIDD. But basically (already having the Lyme for two years, albeit unknowingly), within a matter of two months, I got four infections at once: The bartonella and rickettsia strains from hundreds of catflea bites, and Mycoplasma pneumoniae from the children of a family that came to stay at my house during a bad storm. It makes me think that, even though I was already steadily going downhill with the undiagnosed Lyme disease, at least it did take more than two additional bugs to bring me to almost completely bedridden within eight months.

This is also proof that a negative test means nothing. People need to realize this fact, above all else. Your levels have to be very obvious and you need to have a functioning immune system in order for the routine tests to work. Those are the conditions they were designed to work under, and even then, the CDC admits the rate of inaccuracy is very high. And I haven’t even talked about how the bacteria themselves evade and suppress your immune response, causing false negatives. There is a reason Lyme disease is the fastest spreading infectious disease in the United States.

If you’ve ever been diagnosed with Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s Disease or Motor Neuron Disease), Parkinson’s Disease, Rheumatoid Arthritis (RA), Lupus, Chronic Fatigue Syndrome (CFS), or Fibromyalgia (FM or FMS), please find a Lyme Literate Medical Doctor (LLMD), the people who risk their lives to stand up to the infectious disease society and treat people who are dying. Or at the very least, someone else who completely understands how common these tickborne (and fleaborne!) infections are becoming. Yes, all of those aforementioned illnesses can exist on their own, but far too many doctors unknowingly use them as catch-all categories due to their ignorance of infectious diseases such as Lyme disease, et cetera.

And even if you have M.E., you still need to be tested, because we are susceptible to infections that most people don’t even have to think about. (You’d be well off reading a pamphlet on having HIV, and how to avoid things–like kittens or feral cats!–that are considered high risk for the immunocompromised.) Lyme disease can also cause false positives on autoimmune tests (such as ANA and ESR), so even having “confirmation” such as that is no cause to think your diagnosis is accurate.

Everyone owes it to themselves to make sure they don’t have a treatable infection like this, especially when it can and does lead to death if not addressed.

a rainbow at night

Guilt Be Gone! (via Chris’ Companions of Lyme)

“Emotional pain can’t be cured by logic, and Lyme comes with an incredible amount of emotional pain.  You are the cause of a drastic change in lifestyle, are a financial burden, and can’t be there for the ones you love.  Lyme becomes you world, because controlling your Lyme is your survival.  All of that brings tremendous guilt.

It’s not your fault.

“I keep telling Cee it’s not her fault.  She didn’t go running into a hot bed of ticks with a Bite Me sign on her.  She didn’t plan to be in pain for years and almost die just for the fun of it.  It happened.”

Read More

via Chris’ Companions of Lyme

Our tribute for Angela Quinn Hausman… (via knowlyme.com)

Our tribute for Angela Quinn Hausman... “Angela had Lyme Disease. She was bitten by a tick in San Diego over 10 years ago. Doctors treated her for everything under the sun until she finally found a Doctor who specialized in chronic diseases. They almost immediately diagnosed her with Lyme Disease. She suffered for years and the stupid medical profession still won’t admit to the world the devastating effects of that disease. Lyme Disease has now taken another life. She was 36 years old and leaves behind a great husband and two beautiful children.” Read More

via knowlyme.com

Article: Evaluation of in-vitro antibiotic susceptibility of different morphological forms of [Lyme disease]

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.]

Battle of the Pills: What Managing Chronic Lyme Disease Really Looks Like

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 worse 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 take one or two, or maybe none at all.

I feel scared at the reality that if you were to take them all away from me, I would crumble, my body becoming a non-functioning mess, encompassed by disease before it slowly withered away; it’s painful to be reminded of how much I need them.

I feel resentment at myself, because a little part of me thinks that posting this only sends the message, Hey, look at all this medicine I take, I must be really bad off if I need all this medicine, doesn’t this make me seem attention-seeking, and that it will attract a more vicious crowd. Because that’s not what this is about and “sick” is not all that I am by a long-shot…

But it’s impossible to separate yourself from what is–a human being living with chronic disease–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, after constantly being told, “You can’t possibly need that many pills. I don’t like taking pills because they have side effects and they might cause something else to happen; I just 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 not everyone has that. I certainly don’t. Not if I want to function or be able to do anything at all, like breathe or eat or walk, on a good day; not if I want to give myself the best chance at having a “normal” life, one that will never, ever be normal anyway.

These are all of my current prescriptions. There are twenty-five 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, et cetera…

…and these are my prescriptions plus all necessary supplements and herbs that I have to buy myself. This doesn’t include the three from other rooms I wasn’t able to get, so the total comes to forty.

This, 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 this post. 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 have arisen. But it’s easy to allow those very close to you to see what you go through. It’s something else entirely to disclose it to the world and expose yourself to scrutiny. But…

This is the pharmaceutical side of having myalgic encephalomyelitis, a disabling neuroimmune disease that has no cure, only symptom-based management.

This is what it’s really like having chronic, late stage Lyme disease, and bartonellosis, two potentially-fatal bacterial infections of the nervous system that may persist after months, or, in many cases, years of attempted treatment.

And this is the shame resulting from years of subtle and not-so-subtle messages from society, friends, even family members, that say, “Be quiet about your disease, lest you make the rest of us uncomfortable.”

People need to know all that these diseases can do, not just the side 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

We did it! Another CFS and Fibromyalgia patient actually suffering from Lyme disease

We helped another person find out she has Lyme after a decade of being sick and misdiagnosed with “CFS” and Fibromyalgia. But she also has a ton of mental symptoms, anxiety, depression, disassociation, etc…. Something wasn’t right, and we’ve been trying for months to get her to understand that she needed better testing. The stars finally aligned, and she’s getting treatment now!

This is such a great feeling. I’m so blessed to be a part of it in any way… Another person who doesn’t have to think they are crazy! And another person who can be an example for others. ♥ Praise God.

a rainbow at night