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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My First Real Post in Months: “Something” Has Happened

My birthday was in August and it was incredible. Full of love from friends and family and the amazing gift that I was alive to enjoy it. I thanked my Lyme doctor for helping save my life, because without his aid I know I wouldn’t have made it. The whole celebration affair took two days to get through because I didn’t want to exhaust myself–I tried!–but let’s just say, next year I shall ask for more assistance, especially in opening gifts because I did the closest thing possible to arm-murder for someone with M.E. The eustress still affected me profoundly, and the muscle relapse I experienced took me weeks to recover from. By mid-September I did finally get to a place where I was okay enough to start typing, replying to e-mails, et cetera, albeit at a much-reduced level. I think that’s when I made my last “real” entry… Anyway.

Since my last actual update I have been “officially” diagnosed with vasculitis, upped my Biaxin dose, then had to stop everything completely.

 

After a necessary car ride (read as: hurricane evacuation) put me in the sunlight for eight hours, my sporadically-present vasculitis-of-the-past-ten-years went into overdrive and has been bothering me daily, often severely, ever since. I have to avoid all sunlight and any temperature change…which I always have to do, but right now it’s even more important. I did get tests to see if anything autoimmune had been triggered, but the tests, ANA and the relatives, were all normal, so that’s good. I got the diagnosis of inflammatory vasculitis on the 6th of September, which ironically was two days after upping my Biaxin to twice daily instead of once daily, but the Biaxin was unrelated, since the problems began days earlier with all that sun exposure. My PCP told me all the weird quirks I’d been having–the INTENSE dizzy spells, the blurred vision, that the main vascular problems were in my hands and feet–were all related. She said it starts in the small blood vessels–ears, eyes, extremities–and spreads from there, and to manage it with ibuprofen, which for now, mostly works.

We want to avoid going on steroids if we can, because of how they suppress the immune system… But I’ve been off and on Nasonex (an inhaled corticosteroid for sinus inflammation; I don’t have allergies) and it’s such a catch-22. I always feel better when I’m on it, but it also messes with my immune system so that other problems act up. Sigh.

 

For the most part I had been feeling GREAT with the twice daily Biaxin, but when I’m down, I’m really down. I have no idea what to say about my general health status, otherwise. :\ I always get a bad flare at the beginning of the month because this is one of the bug cycles (I think the Mycoplasma, but maybe the Lyme–I have no idea, I just know it’s not related to my menses because that has no reliable pattern due whatsoever, and hasn’t for years). Well, this month’s flare was absolutely terrible because of being on the doubled antibiotic dosage–“herxapalooza,” as one of my friends calls it.

When I was on Zithro (biaxin’s cousin), there would be one day a month I’d have to stop my antibiotics and let the herx die down, lest I end up it the emergency room. I came very close to going this month, not because of the herx itself, but because of a Migraine that was almost completely resistant to treatment. All I had at my house was off-brand medicine and name-brand Treximet, the latter of which  I cannot take with my type of migraine (which I DID NOT KNOW–need to discuss this with my new neuro!). So it was bad. Bad bad. The aura began with an awful prodrome of Alice in Wonderland Syndrome on Friday (Sept 28th) and the Migraine began two days later on Sunday (Sept 30th). Another two days later it was gone, but I have been sicker than sick ever since.

I have stopped ALL of my antibiotics in an attempt to recover, and I’m planning to resume them Monday if I’m able. If not, I’ll give it another week like I sometimes have to do. It’s been four straight months since having to take any kind of break, so that’s good. I hope it’s just the herxing (my liver is fine, by the way!), because this is a little frightening.

I haven’t needed my wheelchair in months, so I put it in the closet. Then yesterday I went to stand up and almost went to the floor. I’ve had NO trouble walking in months. Now my legs are very weak. It just hits me in “episodes”–one part of the day I’ll be sort-of okay; the rest, I am useless. This would make sense if I were currently on antibiotics, but I am not!

I have been sleeping a ton, and in bed all day regardless, only getting up for the essentials like restroom. And the pain… Oh, the pain. A day or two ago–they all blend together at the moment–I couldn’t so much as roll over in bed without a dose of Vicodin. The “headache phase” (because that Migraine went on to irritate every surrounding nerve) has died down for the most part, but now I’m facing exhaustion, flu-like sickness, numbness in my right leg and foot, a bizarre action-related tremor in my left hand/arm that has actually been progressing instead of going away… I am hydrated but my blood pressure is poor, I am resting but my heart is weak… My heart has felt weaker the past several weeks, at random. I don’t know what that’s about (side effect of doubled Biaxin?) but my next cardio appointment is in November.

It’s just such a drastic change, and I was doing perfectly fine (relatively speaking) on the doubled dose of antibiotics until this hit… And despite being off of them, it doesn’t appear to be getting better yet, which is concerning when I’ve literally spent the past week in bed and usually this combination lends to me feeling better… Or at least, when it’s M.E.-related, this lends to me feeling better. I suppose, with that in mind, I should stop thinking of it in those terms, because even though the majority of my troubles the past month-and-a-half have been M.E.-related and those ARE improved with rest, these problems I now face probably are not M.E.-related, and therefore there’s no sense in thinking rest will help them.

Maybe I’m rushing things, or being impatient. I just wonder what happened that I’m taking so long to recover, and I hope this will all pass over without me being forced into a lower state of functioning in the mean time.

So as to my absence…! I have been doing mostly okay, seemingly doing much better–even starting to prepare my own meals!–until “this” happened.

a rainbow at night

No more minocycline and guilt over happiness.

The reason I have this blog is to keep track of my symptoms and occasionally share a ramble. I never imagined I’d be getting thousands of visitors… Thank you, for your views and your comments, and I sincerely hope the things I’ve written can help someone else. Many of you have shared that they have, and I will always feel blessed by it.

So yes, I need to update on a few things for future reference… The first one being: My brain fog. If I haven’t said it before, let me say it now: Flagyl gives me the worst brain fog ever. I’m glad I only take it four days a week. My typing has been fairly atrocious lately (sometimes worse than others) so I apologize in advance if this entry doesn’t come out right. I know some of you have to translate it into your native language and this one might not be.. erm.. see, I can’t even think of how to finish that statement! :\

My eyes have been hurting for weeks. I’m so sensitive to light, and I get stabbing pains in them. I’ve spent the past week in the dark. My nervous system has been very sensitive, in general, since I started treatment, however my eyes don’t usually hurt this much… I’m wondering if the Nasonex has anything to do with it. I’ve taken it for.. probably a decade, now? But I had a two year break, and I don’t recall it having an accompanying Glaucoma Warning in the past…? But it does, now. I’ve stopped needing it, so I stopped it two days ago. Today my eyes ARE better, but it’s impossible to draw any conclusions from that. It’s probably just coincidental timing and I’ll get a severe case of eye pain tonight like I did yesterday, aha. If in the future, however, I start Nasonex and get crazy eye symptoms, I’ll know something.

It would appear that warning-hive I got a few weeks ago held true to its title. On the 12th of May, I got very, very sick, and had to stop all antibiotics. Aside from the fact that I felt completely flu-ish with a severe headache, I’d gotten to the point that I could not eat anything, even drinking water was becoming difficult, and amassed in me shaking, becoming dehydrated, and needing Zofran three times a day to keep my nervous system from having a meltdown. These are the same things that the Doxycycline did to me last year before I was hospitalized for five days. We were worried that the minocycline might do this, too, which is why we’ve been easing into it for all these weeks… It’s clear now that I can no longer handle the tetracyclines. I’m just glad that (1) I knew what was about to happen so I stopped the medicine in time, and (2) that I basically had available to me the same medications that they gave me last year to pull me through it (except re-hydrating took a tad bit longer without an IV). After three “missed” doses of antibiotics I was able to eat a chicken sandwich, and it’s been a steady improvement since then…well, at least in regards to being able to eat and keep food in my system.

Wednesday I couldn’t breathe again, having much the same symptoms as two weeks prior. And I’m still having that problem: I cannot breathe when I sit up, but as long as I’m lying down, I’m pretty much okay, though I still have to gasp for air every so often.

Now, I’ve had flare-ups every two weeks for almost two years, now–since summer of 2010, I believe, when I took grapefruit seed extract (GSE) for a few weeks–so this isn’t too much of a shock. But I usually have Lyme symptoms during those flare ups. This time, I haven’t. At all. I’ve had lung pains, and coughing a lot, and an inability to breathe right. That can’t be Lyme disease?

The reason I assumed the GSE had woken up the Lyme disease when I took it, and gave me flares every two weeks instead of every four weeks, is because GSE is a supposed to be a destroyer of Lyme cysts (i.e., the cysts that the bugs were hiding in, open up and start causing symptoms, then you can kill them with antibiotics)… Well, I’m on Flagyl, which is THE cyst buster, so could that have anything to do with my minor Lyme symptoms during these flares? Or is this not Lyme disease at all, and is it Mycoplasma? My money is on the latter for this particular scenario, given the hive and the breathing problems and lung problems which are all the things that I was worried might happen. :\ Because I tell you, my other symptoms are very mild. Shockingly so. When I was off antibiotics this past week, my neuro symptoms barely even flared up! I’ve been having mild “hot foot” sensations in my right leg, and that’s about it. (My tags say I last had that.. well, let’s just say that every time I’ve mentioned it, I’m also talking about Mycoplasma… The evidence mounts!) Nothing went to attack my arms, nothing started quickly progressing like a starved animal waiting to pounce… That is very exciting, and makes me feel like we’ve at least done something the past four months. As I usually say, time will tell! I’ll keep updating on it, and hopefully a pattern will emerge.

Until then, we just make sure I’m on both Lyme and Mycoplasma antibiotics. So I started Biaxin today! I’ve heard great things about this one, and it treats borrelia burgdorferi and mycoplasma pneumoniae and even bartonella, in the event that some of those critters have survived and are saving up for a revolt. Also, the pills are bright orange!

Ah, and so far, I feel accomplished with my goal to not be advocacy-frenzied. I’ve reposted/retweeted a few things, but that’s about it. Life is good, despite everything. I’m happy, even though I feel like I have society and ten thousand other sources telling me I’m not allowed or shouldn’t be… I’m sick, I’m “supposed” to be complaining about everything, right? Ha. Last week I felt the urge to announce, “I’m so happy to be alive.” Because I was. Because I am. And afterward I felt so odd about it. One friend said, “You feel odd because society tells you to complain about your woes. You’re happy because you see what matters most.” Which is pretty dead-on. Another said that people see someone like me “who is thankful for another day and enjoys life as much as possible, and they make a hateful comment” because they’re trying every materialistic avenue available to them and still can’t feel happiness and appreciation.

I suppose when it comes down to it, I was worried someone would take it in the wrong way, or find a way to interpret it negatively, or think I was just “saying it to be saying it” even though I really do mean it. Also, I didn’t want it to sound conceited? I know people going through minor troubles who are very bothered day in and day out, and I have.. erm, well, a lot of daily troubles and suffering and yet lately I have maintained happiness. It’s just a fact. So I don’t want it to sound like I think I’m better than anyone, or something. Because I used to be bothered by daily insignificant things, too! I’m just so happy to not be that person anymore, to have inner joy no matter what, and I want to keep that balance between expressing that happiness about it, but not rubbing it in everyone’s faces. Then again, I only have so much control over how other people interpret what I say, especially when I know my heart is in the right place: Again, balance.

a rainbow at night