Living with Guillain-Barré syndrome

Regarding physical therapy—I was actually assigned some spa treatments, but I had to decline them due to my current family situation. I’m flying solo right now with two small children because my ex—after about ten days in the hospital—refused to keep helping with childcare. So... instead, I’ve decided to get my PT done locally, over near the Mayo Clinic area.
I had my appointment with the physiatrist a few days ago, but honestly, I’m already up and walking—running errands, taking the kids to the park, cooking, cleaning, laundry, and yelling at the little ones whenever they track dirt inside (which, let's be honest, is every five seconds)... and so on. My recovery is actually moving quite fast, though I am slow. There are moments where this sensory ataxia just completely frustrates me. In those instances, what helps most is intentionally exaggerating the very movement I struggled to master. I’m taking B-complex and getting B12 via IV. My urine is fluorescent, by the way—but since I work in veterinary medicine, I know perfectly well that’s just the B vitamins doing their thing. I’m also on D3 and taking magnesium and calcium. I’ve been working on squats, push-ups, calf raises, crunches, and various Pilates-style movements. Or, I just use the exercise equipment at the local playground when I’m out with the kids. And that helps me SO much. My sensory issues are still up in the air, but my hands and feet are already far more flexible and sensitive than they were a month ago. I practice my gait first inside the house, then in the yard, and finally out on the street. It absolutely terrifies me—that feeling of insecurity is constant, like I’m a wobbly plank of wood—but I don't have a choice. Not with the kids depending on me... Stair climbing has also been a massive help. I can manage going up without holding onto anything now, but coming down is still a struggle. At least I’m not clinging to the handrail for dear life anymore...
I’m waiting to start PT and am hoping to take the kids to the coast in about a month. I really don't want to disappoint them; I promised them we'd go and even paid the deposit for the reservation before the Guillain-Barré syndrome hit...
My job is on hold indefinitely (I'm self-employed), so that—combined with the kids—is a huge reason why I am pushing myself to recover as quickly as possible.
And, despite facing daily frustrations and a lack of understanding from people around me, I am profoundly grateful for the progress I've made so far. Honestly, I think I’ve done incredibly well!
To anyone else in a similar boat, I say this: do not give up. Give it everything you've got and believe in yourself! Exercise whenever you possibly can, and set new limits for yourself every single day! But—and this is crucial—listen to your body. When it becomes too much, stop!
The one thing weighing on my mind is—what if I catch another bug from the kids? Has anyone here dealt with something similar? Am I even allowed to risk catching a virus, or COVID, or something else, without the danger of a relapse?
I don't know how to feel about it. I caught Varicella-Guillain-Barré from the kids, but I only had three spots (one on my chin and two on my torso), no fever (well, I think not, since I barely had time to check given they were constantly crying and running around), and it all seemed very mild... or so I thought at the time.
I also breezed through COVID by basically walking around like a hermit and avoiding any contact with the rest of humanity...
As for the flu my oldest son had, it felt like I didn't even catch it, even though he slept next to me for ten days with a 102+ fever and ended up in the pediatric ward...
Yet, somehow, about two or three weeks after the Varicella-Guillain-Barré...
So, that is my experience—the doubts, the uncertainty... I'm sharing it in case it helps anyone else... 🙂

Karen Wells17 said:Hey everyone, just wanted to bring this topic back up for a second.
So, I’m finally back home, about a month after being hospitalized and getting Intravenous immunoglobulin treatment at the neurology ward at Mayo Clinic for, of course, Guillain-Barré syndrome.
Even though I'm typing this with fingers that still feel totally numb—I'm hitting near-normal speeds, mind you—I can walk about a mile or two on my own every day now.
But how did this whole mess start?
I honestly don't know if the trigger was Pfizer (because I had a similar, though way milder, sensation of tingling and weakness in my limbs right after that), the actual COVID virus itself (which I also caught), or even chickenpox that my kids brought home from daycare, which basically held our house hostage for over a month (since I've got two little boys).
Anyway, it started with this symmetrical tingling in my arms and legs that just kept getting worse over about two weeks until I could barely walk, let alone wipe myself after using the bathroom... I started tripping over everything and practically bolted—well, figuratively, since I couldn't run anywhere—straight to the ER.
After a lumbar puncture and some neuro tests, they diagnosed me with GBS, so I ended up stuck in the hospital hooked up to an IV drip.
Now, here's the thing... I'm a smoker. Which means I was basically half-dead, crawling around outside with a walker just to grab a coffee and have a smoke. I don't know if that actually saved me or anything, but I was the only one in the room who managed to stay mobile (even if I nearly poked my own eye out every time I tried to brush my teeth...🤦).
Since I'm always out and about (I work professionally with dogs and even wild animals), I was exercising like a maniac even while I was in the hospital.
They let me go after ten days, even though the doctor wasn't exactly thrilled about it—probably because I was driving them crazy constantly pacing the halls (even if I was doing it on all fours like a total nutcase)...

What did you deal with first—the vaccine or the actual virus? Because if you already had COVID, you really should've checked your antibody levels to see when you even needed the shot. Your family doctor can tell you that stuff. Maybe the chickenpox was just the "final straw," which can definitely leave lasting effects, especially as you get older. It's a tough question figuring out what the trigger was. I wonder if they checked your homocysteine levels; it's expensive, but you can see it in the spinal fluid and through a lumbar puncture. If you don't mind me asking, how long did you have to wait for those spinal fluid results?
In a weird way, smoking probably helped save you in part...
And as for your ex—most guys these days are just "fair-weather" types. As soon as things get messy, they vanish without a trace.

Yeah. This is exactly what I’m always getting at when I talk about methylation. If your homocysteine levels are high, it means you aren't actually getting enough B12 or B6—it's not that they aren't there, it's just that your body can't absorb them unless they're in methylated form. That's why seeing high homocysteine should be an immediate red flag for MTHFR gene issues.

Kimberly Ward said:What did you have first—the COVID vaccine or the virus itself? Because if you had already survived COVID, you really should have had your antibody levels checked to determine when you actually needed a booster. That’s what any decent family doctor would tell you. And was chickenpox perhaps the "final straw"—which, mind you, can leave its own lasting effects, especially as we age? It's a good question, what served as the trigger here. I'm not sure if they bothered to check your homocysteine levels—it's quite expensive, after all—but one can see things clearly through cerebrospinal fluid and a lumbar puncture. If you don't mind my asking, how long did you have to wait for those CSF results?
In one sense, it likely saved you—and smoking too—
As for ex-partners—men, in most cases nowadays, are nothing but "fair-weather" types. The moment trouble arises, they vanish into thin air.

I caught COVID after being vaccinated, but since I experienced similar—though much milder—symptoms following the shots (not after the actual virus, though!), I suspect the vaccine might be to blame... Now, usually, because of my background in veterinary medicine, I tend to lean toward the pro-vax side of things, but it seems to me we were dealing with an unfortunate cocktail of the vaccine, the virus, and exposure to varicella acting as a trigger... I suppose I'll never know for certain...
The lumbar puncture was performed in the ER, and I received the results within just a few hours. That allowed us to rule out meningitis and, due to elevated protein levels, conclude it was Guillain-Barré...
And so, here I am, still struggling to walk steadily while chasing the kids (two little terrorists, aged 4 and 6, who are brawling every five seconds—you really have to stay on your toes!🤣)
Well, I managed to climb the stairs at the local high school today without any trouble, so I'm trying to comfort myself with the thought that things are improving... And I'm already carrying my younger child—who weighs 19.5 kg—from my bed to his without any issues... so, at least muscle atrophy isn't something I need to worry about just yet...
But my hands are still quite wooden. My feet are almost back to normal...🙏 I still deal with ataxia if I get distracted and suddenly look up while walking or something. I'm not falling flat on my face, but I still wobble...🤦
In any case, it is an incredibly exhausting illness...

Jacob Lopez51 said:Exactly. That’s precisely my point regarding methylation—if your homocysteine levels are elevated, you aren't actually getting adequate B12 or B6 because your body simply can't absorb them unless they are in methylated form. High homocysteine should be an immediate red flag for the MTHFR gene.

Well, if my memory serves me right regarding my lab results—and I'm not going digging through files right now because I'd risk waking the kids—my homocysteine was fine. I wasn't looking for anything specific, though, other than things falling outside the normal physiological range, so I assume I would have noticed... As for the MTHFR gene, I'm somewhat skeptical since I don't have any other symptoms; besides, my biochemistry shows quite decent levels of all the B-complex vitamins in my blood (this was even before I started treatment—meaning it was this way right when the Guillain-Barré syndrome first appeared). Now, I am still getting B12 via intramuscular injection once a week. I'm also taking Neurobion, so we shall see... I'm trying to be careful not to overdo it.
The only deficiency I have is Vitamin D (though, honestly, it's quite "mild"), but then again, that seems to be the general rule for most women.
I've also added some salmon oil capsules—omega 3 and 6; there shouldn't be any harm in that when dealing with neurological issues (well, that's just my personal take, sort of a "veterinary" approach—after all, we are all just mammals, aren't we?)🤣

Karen Wells17 said:I caught Corona after getting vaccinated, but since I had similar—though way milder—symptoms right after the shots (not after catching actual Corona!), I'm starting to wonder if it was the vaccine... Look, I'm in the veterinary field, so I'm usually pretty pro-vax, but honestly? It feels like a disastrous cocktail of the vaccine, Corona, and maybe being exposed to chickenpox acting as a trigger... I guess I'll never know for sure...
And they did my lumbar puncture in the ER; I got the results back within a few hours. That ruled out meningitis, and because my protein levels were up, they concluded it was Guillain-Barré...
So, yeah, now I'm still stumbling around trying to deal with my kids (two little terrorists, ages 4 and 6, who are fighting every five seconds—you really have to watch your step!🤣)
Anyway, I managed to walk up the stairs at the local mall today without any issues, so I'm telling myself things are looking up... Plus, I can already carry my youngest, who's 43 lbs, from my bed to his without trouble... so at least muscle atrophy isn't my main worry...
My hands are still kind of wooden, though. My feet are almost back to normal...🙏 And the ataxia trips me up whenever I get distracted and look up too fast while walking. I don't fall flat on my face, but I definitely wobble...🤦
In any case, this illness is just exhausting...

I don't know, I'm leaning towards it being chickenpox, or maybe both of those. All three together, plus the aftermath of Corona and the shots. But who knows. I didn't realize they'd even run a spinal tap in the ER—but I guess that's just what happens in neurology. I'll dig through all those test results I've done, but the specialists in neurology usually do a good job. Because in the world of neurology, I've been a patient since 2009 and I'm still full of doubts. My neurologist actually recommended something once, I think it was CoQ10 or some kind of coenzyme.

Kimberly Ward said:I don't know—somehow my gut is telling me it’s chickenpox, and then there’s these two other things. All three together, plus the lingering effects from Corona and the vaccines. But who can really say? I wasn't aware they even performed spinal fluid analysis in an ER setting—though, given the symptoms, it was likely a neurology referral. I need to go back through all those test results I've been collecting, but honestly, the specialists regarding neurology tend to do a decent job. Because when it comes to neurological fluids, I’ve been a patient since 2009 and I still find myself questioning everything. My neurologist actually recommended something for a while—I think it was related to CoQ10, a coenzyme.

Exactly. It’s highly probable that some incredibly unfortunate cocktail was brewed—the mRNA vaccine, the original COVID virus, and then a little extra sprinkle of chickenpox... quite the "perfect storm," wouldn't you say? And my immune system just completely short-circuited because of it...
And at the ER, they drew hectoliters of everything—blood, CSF, plasma... sweat, you name it...🤣
Well, I suppose it could have been much worse!
Right now, they have me on such massive doses of B-complex that my urine is practically fluorescent yellow, and I’m constantly bloating myself with various mineral and vitamin supplements—so now I smell like a flowery meadow! 🤣
Not to mention, my bowel movements might actually make meadows fester because I’m basically passing lightning bolts and pure magnesium! But, jokes aside—I absolutely recommend Magnesium. If I hadn't started taking it days before heading to the ER, I suspect things would have turned out muuuuch worse. Truly, within a day or two of starting it, my symptoms were significantly alleviated, so I highly suggest it.
I also recommend Omega-3 and 6 fatty acids; they are vital for cell membrane repair in general (at least in veterinary medicine), and since we are all more or less mammals...😉

@Mist_Dragonlady

So, as you can tell, I went through GBS back in January 2020.
It was a total grind. I did the whole plasmapheresis thing—spent nearly a month at Mayo Clinic—and even hit up some Spas to try and recover.
Then, mid-July, things got seriously sketchy. Let's just say I barely made it out alive, so I won't bore you with the gory details.
Right after the surgery, I caught COVID-19. That really put me through the wringer, but somehow I managed to dodge a GBS relapse.

They say the three years following a GBS diagnosis are the make-or-break period.
But honestly, based on everything my favorite doctor over at Mayo Clinic tells me, I think I’ve cleared the hurdle.

I'm rooting for you. Hang in there, stay tough, and keep your head held high.

P.S. With my medical history (I'm sitting at 25+ diagnoses right now), I haven't pulled the trigger on the vaccine yet. I'm planning to touch base with my neurologist at Mayo Clinic soon to get his take, because I am definitely not looking to repeat that nightmare when Coronavirus absolutely leveled me.