chronic lyme disease with a taste of nut
Another Saturday night. Another Saturday night in my bedroom herxing “to high heaven,” as my lymie mentor says. She says if I’m herxing to high heaven then that means the treatment is working.
Wow, then it is working!
Last Saturday night was hideous. Like hand over the mouth kind of hideous.
More seizing only I became self-conscious about calling them seizures. People were getting worried. I threw around some phrases:
Nope. It was more than that.
Not a grand-mal seizure as I’m sure some were picturing. Thankfully, not nearly as awful as that.
This was more like my body was trying to spit out the toxins and puh-tewing all the poisons out via my legs, arms, and head.
My arms and legs would get heavy and buzzy. My head would start to become a fun little bobblehead and the world around me turn blurry. My arms would then turn cold on the inside, like cold water rushed down each arm turning them numb. These tell-tale sign would signal that I ought to lie down ASAP. Last Saturday, I believe, I didn’t lie down fast enough and I tipped over onto the couch. Hubby rushed over and stood over me as I puh-tewied over and over, what I guess you can call “convulsing.”
Despite some people recommending I see a neurologist (and yes, the referral is in), I really do believe it is a severe herxheimer reaction (see above How Rude picture).
It became a teensy bit fun to test my knowledge of my body and see if I could tell when a puh-tewie convulsion was coming on. Fun, you ask? Hey, when you’re in bed most days and can’t read, write or talk much, you tell me what fun things you figure out to do. Anywho, gratefully, this pasttime of mine developed into useful information. I’m still learning how to integrate it all. For instance, I had to leave my middle child’s school orientation due to the crowds/lights/noise triggering a puh-tewie convulsion which included a definite brain pressure I hadn’t experienced before. I knew this event could be a problem, but I pushed myself before the event, didn’t take enough detoxing precautions, and pushed myself at the event. Thus, hubby had to come to the school while I went home trying not to puh-tewie in the car. Don’t worry, I live a few blocks from the school. I got home fine.
The following day (I’m talking beyond Saturday now) I took my eldest to do some errands. Our last stop out of three was at Wal-Mart — oh, did I already write that blog entry? My brain just oopsie-daisied on myself and almost told you that whole story again. Sorry about that. No money-back guarantee on this blog.
So suffice it to say I have pushed myself and seen the results. Last Saturday it dawned on me what was causing the severe herxing and why the herxing chose Saturday to be its special day. Despite being on my two “off” weeks last week and the week before (remember, I’m taking heavy antibiotics two weeks on and two weeks off as per my LLMD’s orders) I still took my gaggle of supplements and yeast controllers, Diflucan and Flagyl. The Diflucan I take Mondays and Wednesdays and the Flagyl I take Thursdays and Fridays. My Lymie mentor tells me this is good because they “mop up” the dead spirochetes. However, one can herx on these meds as well because they cause Candida die-off. Flagyl, taken every Thursday and Friday has decided to be particularly nasty as I knew it would be. I just didn’t put two and two together until now.
Now I know what foolhardy Flagyl is up to.
While using Flagyl last year for non-lyme-related infections, I noticed it gave me a very bad psychological reaction. So bad that I refused to take it again and my primary doctor looked at me funny and said, “Flagyl doesn’t cause that” but put it on my list of allergies anyway: “adverse behavioral reaction.”
What my primary doctor and I didn’t know was that when I took Flagyl for that little infection, it was killing off the bad guys in a much bigger infection known as lyme disease. Now I see that I experienced a herxheimer reaction last year without even knowing it.
Fast forward to these past four Saturdays and the obscenely rude way Flagyl has insulted my days. And yet…as my Lymie mentor says, “if you’re herxing to high heaven it means it’s working. That’s a good thing.”
And I know it will happen again and I will still have to take you.
Flagyl, you are my best enemy and worst friend.
But look at the kitten. So cute, no?
So, all in all, knowing what to expect has become one of my best weapons. Knowing how to detox has become the best weapon and I’m still gathering my arsenals. That will be another blog entry.
Now that I know when my puh-tewies are coming on (like now for instance), I can take measures to rest and either prepare to ride them out or, sometimes, I even ward them off all together. More often than not, I just ride them out. Thankfully, they are not nearly as frightening.
Yesterday was Friday, not Saturday. Yesterday brought on a new and still-absurd symptom which I’ve lovingly called the “popdizzy.”
A popdizzy is something that has happened three times. To explain it is like explaining polka-dots to a blind person. But here goes.
My heart will beat very fast, I’ll get out of breath. I’ll be sitting or standing or talking or anything, really, and suddenly my consciousness jerks back as if someone just popped me in the face and everything goes black for such a tiny nanosecond that I don’t think anyone except me would be the wiser. Everything gets super shaky and dizzy and I feel as if I’ll fall over. Though it feels like hours, it really only lasts 5-10 seconds (the odd sensation, not the blackness. The blackness lasts one tenth of a nanosecond so I’m not too concerned). My husband didn’t even know anything had happened yesterday apart from me going, “Woah!” and grabbing onto whatever was nearest.
My Lymie mentor says I will experience a host of odd and weirdo symptoms that come and go. Therefore, to lessen the fear and raise the humor factor – always a good thing – I’m going to utilize my enormous talent for spontaneously naming things (yes, my car has a name; don’t judge me) and create a whole new vocabulary for this stuff. Hence the puh-tewies and popdizzies.
As I type this I think they are both laughing at me (see haha picture above, only in reverse. Which is still: haha) because I’m convulsing or puh-tewing in the head and arms as well as experiencing tiny popdizzies every few minutes.
Here are the following triggers I’ve noticed to bring on a puh-tewie or a popdizzy:
And the next day: in bed all day in puh-tewie hog heaven.
I really ought to get some patents for these names.
Ok, I’ll put my odd sarcasm at the door and leave you with this:
Inspiration is important. Reading about people who have walked this road before is helpful. Finding ways not to fall into various lyme pits is important. YouTube can be a can of sneaky worms waiting to devour you but it can also be a beacon of hope and the following video is one I return to again and again – when I want to see two people battle some pretty bad odds and give credit to a pretty big God and give us a reason to hope.
My reason to hope for today, this Saturday the 29th of August, is the fact that I only puh-tewied a few times and popdizzied once or twice and I didn’t spend the whole day in bed. I was able to make myself a meal which is a Saturday unheard of thing to do. I did a lot of things today that I haven’t been able to do previous Saturdays. And today was my 6th wedding anniversary. And while one trip to the grocery store was enough to send me back to the car puh-tewing and insulated in my house the rest of the day, the windows were open to let the cool breeze in and I was not bedbound! There is gratitude in action.
So at the end of a hope-full Saturday, I give you this hope-filled story. Trust me; it’s worth the hour and twelve minutes! I corresponded with these two after watching their video and am truly inspired by all they do for others:
To inspiration and Saturdays being grateful they aren’t like other Saturdays.
— lymie out…
A Literary Magazine that gives platform to writers and artists with invisible illness.
Staying grounded while recovering from Lyme disease
A therapist's journey through chronic illness
A Blog About Living with Lyme Disease
Radical hope. Compassionate change. Equipping those affected by chronic physical and mental illness through community and education rooted in Jesus Christ.
My journey in getting treatment for Lyme Disease
Advocacy is FREE and its never-ending ripples spread awareness for all worthy causes!
A Lyme Disease Blog from Bruce county ontario
Recovery from Lyme Disease, chronic pain, and fatigue
How the light gets in.