Guess WTF *I* Got Again?!?
satan’s just tryin’ to mess with me…he can go pound sand.
23 years ago, I contracted big-ass Lyme Disease. With no telltale rash, I didn’t know it, though. I developed, overnight, with no explanation, dilated cardiomyopathy. I was a healthy 135 pounds, 5’8”, size 8, never had BP or any real health issues, walked 3 miles daily in 45 minutes. Suddenly one day on a walk, on the street, mind you, not hiking in the woods, I got such horrific chest pains, I had to stop, sit down, catch my breath, pray that I wasn’t really having a heart attack, and decide if I should dial 911. I almost crawled home. Cardio doc said later the tests showed that “Your heart is enlarged.” My priest and church friends joked, “Well, of COURSE you have a big heart!” but it was no laughing matter. My heart wasn’t pumping blood like it should. Doc put me on Lisinopril. (I think.) I began waking up daily, thanking God out loud for another day of living, of not dying from a heart attack. I was 43.
It wasn’t until maybe 6 months later that the atom bomb dropped.
All but one of the rest of the Lyme symptoms hit me then. Imagine pain like two very strong someones having a tug of war with your knee joint, trying to pull it literally apart. Imagine it constant, steady, unrelenting, to the point of crying out, needing serious painkillers. Imagine also: zaps of electric-shock-like pain, like being zapped with a cattle prod, for no activity whatsoever, just sitting still.
Now imagine that pain in every. single. joint. Every single vertebrae in your back and neck, your fingers, feet, knees, shoulders, ankles, elbows, hips. Some days, you can’t even hold a pen in your fingers. It takes 15 minutes of pain to struggle to stand up straight from a sitting position in a chiropractor-recommended chair.
Then imagine sleeping like you were dead, for 10 hours, waking up, getting your child off to school, then collapsing into bed, dead asleep the rest of the day, as though you’d never gotten a wink. Being wiped for the day after just walking a stone’s throw to the mailbox. Unable to stand or walk in a grocery store for more than 10 minutes.
Then imagine forgetting the name of your longtime accountant and your business contacts. Not being able to do even simple math in your head anymore. Forget banking. Imagine not remembering anything you were supposed to do. Or how to do it. Thinking your right hand is actually your left. Or that an odd-numbered address is actually on the even-numbered side of the street. Telling your child a new story about some event, then hearing them warily say, “Mommmmm….you told me that story yesterday. For the fourth time.” And swearing you never did, once.
Then, some days, strangely, you feel sorta ok: you’re able to do light, quick grocery shopping. Without collapsing afterward. But the day after any exertion like just that, you’re racked with full-body pain and stiffness so badly, you can’t get out of bed all day.
Most days, you can’t sit in a chair, stand for 15 minutes or even just lie down, without feeling like a truck has run over you, then backed up over you and done it again.
You don’t look sick. Some people start to think it’s all in your head, or you’re faking it.
And it may be the only disease where an increase or even switch in medication, causes the little bastards called spirochetes to die off, yes, but when they do, they release toxins in you that double, triple or quadruple the pain and arthritis, sometimes for days. Herxheimer Reactions, named for the doc who noticed them first. “Herx’ing,” the bane of a Lyme sufferer’s existence.
The only symptom I never had, then, was the rash. I “heard no incoming,” then.
Thank God for Lyme rashes.
And Lyme can go dormant and resurrect months or years later. I’ve been bitten and reinfected or un-dormanted so many times since I finally recovered in 2008 from that horrid bout, I can’t count ‘em. I’m a friggin’ tick magnet, no matter what I do. Usually it’s the hip pain and stiffness and massive fatigue that’s the tell: I never had a rash, in any of them.
Except the very first one, and now this one.
In the mid-90s, I participated in a Lyme vaccine study, I think it was Pasteur Mérieux Connaught. Turned out, I got the placebo. I know that because during the study, I did get bitten and had a football-sized rash on my thigh. The study thanked me, treated me with the wholly-inadequate 10 or 14 days of Doxycycline, gave me the vaccine for real (gee, thanks!), but then none of the Lyme vaccines (there were several of them) ever made it to market. All were abandoned. Useless? Adverse events? Because of my second, big Lyme bout, I don’t remember.
(So remember, if they try to say they’re looking into a new Lyme “vaccine”, beware. They failed miserably 30 years ago. I plan to run screaming the other way.)
I only know that 10 to 14 days of antibiotic against Lyme does absolutely nothing for 10-20% of us, and may just send it into dormancy to survive and wreck you another day.
Yet the “hallowed” CDC still clings to this stupid canard. Why am I no longer surprised? Because they WANT us sick. They’d be out of jobs if we all actually “controlled our diseases.”
My short term memory was all but shot by that big, second bout (2001-2008). I feared I could never work again. I couldn’t go back to my lucrative career: I couldn’t remember some clients’ and candidates’ names or how I was supposed to have known them. Never mind hundreds of them. All it would take is blanking on one VIP’s name or details, and my business would be toast.
Was my big bad Lyme a new infection, with no rash? Or was it resurrected from the 90s one? Were my almost-annual flareups since then new or old? I found a few ticks over the years, but not always. I’ll never know.
Twenty-four days ago, I got stabbing, sharp pain in my left knee. No reason. The next day, that rash, pictured, and swelling. Left knee a half-inch bigger than the right. 2 + 2 +2 = Holy S#1+!
I couldn’t walk on the leg. Couldn’t put weight on the knee. It was the same old pulling-apart pain. Limped to and through work that day, and daily for the next 2 weeks. Old folks in parking lots offered me their extra canes. I politely declined.
I got on my “regimen” pronto that day, after virtual-doc-visit. This published, peer-reviewed study I’d found years ago, said Lyme (including the persister, encapsulated biofilm cells) was best eradicated in vitro by the combo of Doxycycline, Cefuroxime (Ceftin) and Daptomycin. The latter is an IV and beaucoup bucks, which I didn’t have, being poor from being unable to work for 7 years, so when I got reinfected/undormanted a few years back, I’d showed my then-GP the study (my second, good Lyme doc had since retired), he agreed to try it—in vivo—and it worked.
30 days of both Doxy (100mg BID, that’s twice daily) and Ceftin (500mg BID)—voila—killed it off. Or at least, sent it into dormancy again. I’ll never know. Only once in the past 16 years did it not work, then 60 days is what it took. Thank God for the doctors who were open-minded enough to evaluate the published study and agree to prescribe.
I hope that 30 days will do the trick now. The pain and swelling in my left knee was almost as bad as the pain from 22 years ago, until a week ago. Hoping I got on the abx’s in time to keep the bastards from spreading elsewhere.
What was the “treatment” 22 years ago?
(Hold on while I stop laughing a minute.)
I won’t describe the doctor I started with. Not on the Internet. As most Lyme-aware folks now know, the “tests” for Lyme are shit. Back then, they didn’t even test for all the “bands” that were most indicative of Lyme, so if you were “missing” or “insufficient” for a band or 2, they said “You don’t have Lyme.” I said, back then, “Doc, I have all the G-D debilitating symptoms of Lyme!” or words to that effect. He said, “OK, we’ll treat you since you have the symptoms.” Doxy BID, it was. For months. Herxes galore.
Sadly, that did not dent the bastards that had invaded every square inch of me from head to toe.
So they stuck a PICC line in my elbow-crook, switching me to Rocephin (ceftriaxone), an IV bag a day, also for months.
He neglected to tell me, or maybe I just couldn’t remember, the side effects of Rocephin. He was a high-mucky-muck doctor. I trusted doctors.
More months went by. That fall, I started having massive gas-attacks. Doubled over in pain, like I was being stabbed in the gut. Tums, useless. Gas-X, phehhh. Filling my stomach with water to displace gas, nothing.
Finally I called my Lyme office. The kind nurse said, “Stop the Rocephin immediately. You may have damaged your gallbladder.”
ME? **I** damaged my gallbladder??
No, doc, ROCEPHIN damages gallbladders.
Eating anything fatty when you have gallstones or even thick gall sludge, causes what I was having. So Thanksgiving dinner came and went without me. Christmas dinner too.
After my January surgery to remove my gallbladder, with its 20 friggin’ gallstones, I learned I was the 2nd or 3rd one having that surgery from among my Lyme doctor’s patients, that week.
Meanwhile, I asked my doctor to complete my Longterm Disability insurance forms. He did not (ahem) comply, for months. I fought him for months. Once he submitted everything needed and I got my coverage paid (TIP: keep a daily, even hourly, diary of your symptoms, for as long as it takes: it’s the main thing that got my LTD policy to pay), I dumped him and never looked back.
Went online, found a respected Lyme doctor. So by this time, I’d seen another year’s worth of neurologists, rheumatologists, etc, with tests up the wazoo. Brought all the records to my new Lyme doc.
He asked, “When they tested your IgG levels a year ago, did they ever tell you they were in the toilet?” I said no.
Apparently, my immune system was pretty much destroyed.
My new, good Lyme doc said “Let’s try a monthly IVIG to boost your IgGs, see if we can kickstart your immune system into producing them for itself again.” By then, still unable to work, on Medicaid, which covered this, I got the treatments for some time, and they helped, but the pain, arthritis, brain fog, and what I called “sleeping sickness” hadn’t gone away completely.
By the time I had to quit the IVIGs (child graduating high school, I couldn’t stay on Medicaid without applying for total disability and I still believed I could get back to my job somehow if I could just shake.this.thing), my immune system still wasn’t producing the IgGs itself. The kickstart hadn’t worked. I was still stiff as a board, in pain and brain fogged.
Now unable to afford the expensive IVIGs, I had to just stop it. Had to sell my home. Start over at the bottom rung of the ladder, literally. Moved in with God-sent friends as I couldn’t afford an apartment. Found a part-time retail job, afraid I’d never be able to learn or retain anything new I tried to learn. From upper middle class to scraping the bottom of the barrel in a blue collar.
And it’s what forced me to stop doing the original After Abortion blog.
I don’t reveal all this to suck up for pity.
I reveal it only to possibly help others:
1) that Doxycycline 100mg + Cefuroxime 500mg BID both for 30-60 days worked for me. Which, I might add, the effing-clueless FDA and CDC don’t say Word One about, though 21 years after my big-ass Lyme diagnosis, the CDC finally admitted that Lyme is an infection that can have unexplained chronic-ness (archived page for when CDC decides to un-admit this):
“Infections can sometimes leave people with symptoms that last for weeks to months or longer, even after appropriate treatment. Some of these symptoms are well-recognized and specific to the type of infection, for example, loss of smell and COVID-19. Other symptoms are unexplained and general (e.g., fatigue or difficulty thinking). Similar symptoms can follow many different types of infections.
Some disease agents that have been linked to chronic symptoms
(In alphabetical order)
Borrelia burgdorferi (bacteria causing Lyme disease)
Took ‘em 21 years after my own bad-ass Lyme debacle for them to acknowledge it wasn’t all in my head, or any of the other millions who’ve suffered similarly. Proving they’re jackasses.
I had a friend in New Jersey who, even before I got sick back then, was told, “You can’t have Lyme, you don’t live in Connecticut. Only Connecticutters get this disease.” She was a Wall Street investment banker. She went undiagnosed so long, she could never work again, period.
Another friend went diagnosis-denied so long, he could no longer work, has permanent fibromyalgia, could never be 30 minutes away from home and rest and a heating pad, due to the pain and debilitation.
It’ll probably also take CDC 21 years to acknowledge the harm they caused by blacklisting available, cheap, effective, Nobel-Prize-winning drugs that many MDs, medical scientists and other medical professionals said would have stopped Covid-19 in its tracks everywhere, not just in certain parts of the world like India (“No joke!” as The Resident would say), drugs they couldn’t possibly allow because then the Medical Industrial Complex would never have been allowed to get their fearmongering E.U.A. to instead make gazillions of $$$$ off a gene-modifying therapeutic (for which they had to redefine what a “vaccine” really is and has been since 1796), that was pitifully under-safety-tested, and now it’s coming out that it’s truly harming people.
Not to mention that the “total number of excess deaths in 47 countries of the Western World was 3,098,456 from 1 January 2020 until 31 December 2022...despite the implementation of containment measures and COVID-19 vaccines” (archive copy here) in the Excess Deaths category.
Imagine if you or a loved one was one of those 86,068 excess-deaths a month worldwide, every month, for 3 years.
If the CDC takes 21 years to finally acknowledge their crime against humanity, that’d be about in 2042. If I’m still alive, I won’t hold my breath.
2) That IVIG infusions may have been what eventually got me back to the land of the living and my ejection fraction back to borderline normal: to where I could get off Lisinopril, hold down a full-time, still retail job, afford my own tiny apartment, develop memory aids (repetition, notes, notes and more notes), work my way to better pay and even save a little for that inevitable rainy day. (I’ll still never be able to fully retire; will have to work till I drop).
3) that I only just learned of the great value of compression stockings/sleeves for leg or arm where the rash/bite/pain is, and lymphatic massage therapy.
I happened to already have scheduled a full body Swedish massage for a week after the pain started. Afterward, I felt like I had a new, glorified body (though it clearly isn’t): there was not an ounce of pain or stiffness! It only lasted till evening, but it was proof that gently, correctly massaging the lymphatic areas works. I’ve since done some simple lymphatic massage on my own knee, and damn! but it actually does help reduce pain. And the compression thigh-high does reduce pain and stiffness. Guess increasing the flow of toxin-laced lymph fluid away from the knee toward the heart is helpful!
This Lymphatic Education and Research Network site gives help in how to find and select a certified lymphatic massage therapist (CLT), and the Lymphatic Association of North America also has a search tool.
4) Gentle, slow stretching twice a day or more, though painful, actually helps reduce stiffness and pain, as does icing the knee, which is hot to the touch as there’s a warzone in there.
Reminder: I’m no doctor, and not giving advice. Just saying what works for me.