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#40209 - 09/29/08 02:20 PM Ticked Off: Lyme Disease Trip Report
ianmanger Offline

Registered: 04/25/03
Posts: 319
DISCLAIMER: Not a doctor, don't play one on tv. The treatments I describe in the following were prescribed by medical professionals. If you develop symptoms like mine, you should seek help immediately.

I thought I'd write up my last month of 'Lyme disease hell' in the hope that these details might be as helpful to some unfortunate soul as route beta and because these things are often cathartic. For those of you who want the bottom line, I contracted Lyme disease at some point in July or August. This took a significant time to diagnose and has advanced to the point where I have (hopefully) temporary neurological impairment and am starting a month-long course of intravenous antibiotics to clear it. I have no idea of the long term effects, although my physicians do not anticipate problems. And obviously my climbing season for 2008 is completely shot..

I did not see the tick. I either did not get or see the infamous 'target' rash. Apparently many people don't. This is one of the most frustrating things about Lyme. It manifests as a constellation of different symptoms that often lack the hallmarks of classical infections i.e. fever, elevated white cell counts etc, so early on it gets missed and fails to show up in routine blood work. I had multiple sets of draws that failed to identify immune responses. Here's the timeline.

8/28 I was out in California on business. Had been climbing up in the Meadows the previous w/e with my friend Sean, mixing it up on Mariolumne Dome, the West Pillar of Eichorn and Lamb Dome. Such fun and so beautiful. A bit of a workout but nothing beyond the usual happy exhaustion, chips and beer in the parking lot and early to bed.
I woke up on Friday morning with a sharp cramping pain in my left quadriceps which was rock hard, like I had been doing squats for an hour or tucking downhill on skis. I dosed with 400mg ibuprofen and thought nothing more of it until I had to re-up the dose when the ibu wore off and had to keep at it all day. Flew back to NYC.

By 9/1 the same cramping pain was bilateral (in both legs) and I was tossing tylenol into the mix. Every 6 hrs, 600mg ibu and 1g tylenol.

9/3 Got to my primary care physician (PCP) the 1st time. 1st bloodwork, got a scrip for vicodin (5/500) and a diagnosis of 'muscle spasm, possibly viral'. No evidence of muscle breakdown or elevated immune cells in the bloodwork which was all normal. 600mg ibu and 2*5/500 vicodin every 6 hrs. It is critical to keep the acetaminophen below 4g/day to avoid liver toxicity.

Between 9/3 and 9/5 the same cramps started to work into my lower back. At this point I started to lose sleep, which over the next few days became almost total as the drug combos were starting to lose effectiveness. As September wore on, this became the norm and by the middle of the month I was close to raving mad with pain and lack of sleep. But I digress.

Hit the PCP again. Get a scrip for muscle relaxants (Flexeril), lumbar (lower back) MRI, physical therapy. Diagnosis is 'possible herniated disk'. Flexeril makes my body sting. Maybe I am allergic. Physical therapy is a waste of time. Cramp lessens and essentially disappears in my quads.

At this point I am just another dude with a bad back. I whine to my friends.

9/7 lumbar mri. report eventually shows nothing. no herniation.

9/6-9/8 Ascending pain. Surely this is significant. I joke to my wife wondering what will happen when it hits my chest.

I find out. As another sleepless night progresses, I am increasingly aware of shortness of breath and a clenching sensation and pain in my chest.

Fu*king great, I am having a heart attack.

Off to St Vincents we go and do the ER thing. A variety of meds come at me fast. Clenching pain decreases. EKG normal, heart enzyme panels normal. A blessed dose of intravenous morphine finally cuts the pain. Kept overnight in the cardiac unit, attached to a mobile monitor, full of morphine but feeling like I am not getting where I need to go. These guys are EXCLUDING a heart attack, which is, of course, kinda good news, but not looking for what ails me. They give me a scrip for stronger vicodin (7.5/750) and toss me out. The healthcare system does not imitate House. The notion of ascending pain that results in chest clenching and a faux-infarction doesn't get traction, at least amongst people who can do something.

At this point, I had the advice of several dear friends who are actual physicians. One of them suggested that Lyme should be on the differential, and another climbing bud called it correctly. But I'm still just a dude with a bad back joining the millions of others. I quit work and go on disability. I can't think straight and the pain meds just don't cut it. My wife clears out to Zurich for work. I spend my nights pacing, going to the all-night Duane Reade on 6th, watching sh*t tv on Hulu. I watch an entire season of Bones in a couple of days. My mind is entirely shot from this and the lack of REM.

Special Bonus Misery: After taking vicodin and some of its bigger brothers for a week or so, I am severely constipated. I take a variety of sh*t for this sh*t.

9/10-9/19 Still just a dude with a bad back. I have good and bad days. The pain is severe in my thoracic spine, less so in the lumbar. The PCP and I try to focus on managing the pain. We try a bunch of muscle relaxants, oxycontin, trigger point locals, diclofenac. I have a medical massage, havng discovered a clinic that will take my insurance and work on my back. The results are miraculous. I emerge, Lazarus-like, eat a slice at Joes, stroll down Bleeker like the good old days. I wonder if I can scare up some climbing for the w/e. My wife comes home, and finds me eating pineapple, standing upright and being normal.

I go to bed and wake in the night with a spasm and the nightmare continues.

9/20 I have another chest clenching episode. ER-shopping, we go to NYU and I try to convince the docs that its not cardiac, its muscle. Finally they give me two diezapam (valium) and toss me out. I am mad, frustrated and sick as a dog.

9/21 The diezapam makes me walk around like the village idiot. My wife finds me drooling on a street corner having set out for the MRI shop. I take enough vicodin to enable me to relax and get into the magnet to do thoracic and cervical MRI.

9/22 PCP calls, MRI says my t- and c- spine is fine, mostly.

9/23 My wife notes that one of my eyes is drooping lower than the other. I walk like the village idiot to Starbucks and get coffee. I can't face my buds at the Mudtruck these days. At SBUX I make a startling finding. I cannot form a lip seal around the small hole in the lid of the cup. I go home and realize that half of my face isn't working. I can't close my right eye, wink, smile evenly, show my teeth. Or blink.

The fact that half of your face isn't working is indicative of either complete or moderate levels of fuckage. You do not need the other half to join in. Either 1) you have had a stroke, in which case your central nervous system is bolloxed or 2) have Bell's palsy, which is only peripheral. One of my physician friends and my PCP suggest that this is the latter, and that my fuckage level is moderate. However, Bell's is a hallmark of the peripheral nerve damage inflicted by Lyme disease, so this is the first clear symptom that I am not just a dude with a bad back.

9/24 My PCP suggests that this is Lyme and that I should go immediately to the ER at NYU. She smooths my passage through triage. I do not have to do a lot of explaining as they rapidly do a spinal tap, take chest Xrays and neural CTs and fill me with iv antibiotics and morphine. I see infectious disease people and neurologists. They promise to keep me for several days until they confirm/find out what is wrong. I sleep, seemingly for the 1st time in a month.

9/25-9/26 They keep the morphine and IV antibiotics coming. A parade of med students come to marvel at my half-working face. I get a confirmed diagnosis on the 26th. Its Lyme. Woo-hoo.

At this point, the disease has advanced to the point where the oral doxycycline that they would give you IF you saw the tick and got the rash won't cut it. It has to be Ceftriaxone, IV and lots of it. For a month. You can do this in the comfort of your own home, through what is call a peripherally inserted central catheter or PICC-line which is simpler to maintain for longer periods than a regular IV. Essentially this is a line into the main vein above your heart. It sounds more f*cked up than it is. I work in labs, and am no squeam, but I am still weirded out. They insert the PICCline, set up the drug delivery to my home and a nurse to show me how to dose myself everyday and kick me out. I feel nauseous.

So thats where I am. Dosing daily. My Bell's is improving, so the damage is not permanent. The Starbucks test is negative (I can form a seal!)

I benefited greatly from having kick-ass medical insurance, friends in the business and a super-stoic wife and it was still a fucking nightmare. A further downer is that I'm not immune next time. I thought I was going to be able to pimp through the forest all bare-chested and manly while my sorry-assed Lyme-negative buds were struggling with Deep-Off and other foul-smelling shit. But I am just as vulnerable next time. Oh well.

Please take care out there. Get insurance if you can.


#40210 - 09/29/08 02:29 PM Re: Ticked Off: Lyme Disease Trip Report [Re: ianmanger]
Architect Offline

Registered: 08/19/04
Posts: 210
Loc: north by northeast (from jerse...
Dude, seriously, dude \:\(
-Karl - Looking for a clucking partner

#40212 - 09/29/08 03:06 PM Re: Ticked Off: Lyme Disease Trip Report [Re: Architect]
Smike Offline
Carpal Tunnel

Registered: 05/01/01
Posts: 3143
Loc: in your backyard
Well Ian, I can relate first hand. I won’t go into all my details, but similar chain of events, and tests and ER visit. Although I went through a bout of things, then they sort of went away, before coming back full course 12 months later. One thing I did have was a fever of 100-104 in June 2 yrs ago with little other symptoms for about a week straight. Nothing like that to get the doctors attention.

Anyway, to make a long story short, that was 2 years ago. It’s been a slow road back to near normal, most things are gone, some things still there but very manageable. Some of them I believe are related to damage from Lyme others related to the treatment.

Good luck.

#40213 - 09/29/08 03:37 PM Re: Ticked Off: Lyme Disease Trip Report [Re: Smike]
The Lisa Offline

Registered: 04/26/05
Posts: 411
Loc: Da Bronx
Ian, so sorry to hear about your trials and suffering. Thankfully you are being treated correctly although it is a sorry state of affairs when being able to suck on Charfux is a victory (Dunkin Donuts, please!! ;\) )
Thanks for giving out the 'beta' for us to learn from it. I know of one other person who also ended up having one side of the face paralyzed before being diagnosed. Last I saw him he was 99% recovered and on the way to being 100%. I have my doctor test me for Lyme once a year, out of paranoia, although I know false positives/false negatives can result.
Here's to getting better and showering in DEET next climbing season.
Sent from my iPad.

#40215 - 09/29/08 03:55 PM Re: Ticked Off: Lyme Disease Trip Report [Re: The Lisa]
chip Offline
Carpal Tunnel

Registered: 10/06/01
Posts: 2679
Loc: Sittin' Pretty in Fat City
DEET is my friend. Sorry to hear of all this misery for you. Speedy recovery. Good thing you can still climb without a perfect face!

#40224 - 09/29/08 05:26 PM Re: Ticked Off: Lyme Disease Trip Report [Re: chip]
Mark Heyman Offline
old hand

Registered: 12/23/99
Posts: 1123
Loc: South Jersey (Pinelands)
You have been though a lot and I wish you well on your recovery.

Climbers haven’t seen me at all this summer due to still undiagnosed problems that I blamed on Lyme’s. I twice treated myself with oral antibiotics which seemed to help but never provided a real cure. PCP, Infectious Disease, and Rheumatologist all say I don’t have Lyme’s but haven’t been able to help at all. Note that I went through my symptoms 20 years ago and after two oral treatments and finally one of Ceftriaxone which did work back then.

I recently had a very unusual series of cramped calves. Architect – do you feel your cramped quads were related to Lymes?

Anyway Docs I'm just a dude with arthritis joining the millions of others - but I know got my arthritis in just a few months and went from an hour a day of exercise to none. They think still able to work and can’t see any reason to suspect something is wrong besides an “advanced age of 50 years” – unless I am in the early stages of something and much worse and uncurable anyway.

Mark Heyman

Edited by Mark Heyman (09/29/08 05:27 PM)

#40229 - 09/29/08 06:00 PM Re: Ticked Off: Lyme Disease Trip Report [Re: Mark Heyman]
CrackBoy Offline

Registered: 02/06/02
Posts: 2435
Loc: Republic of Davis
yea, lymes sucks. i luckily caught the rash in the 2ish days it was around and i brought photo evidence to my doctor. for me the worst part was the antibiotics, i felt worse on them than i did off. i had 3 weeks of cipro for it. i still feel like i get relapses every now and again when i am really stressed, but that is apparently not that uncommon.
Just Call me Mr. Enthusiasm

#40231 - 09/29/08 06:11 PM Re: Ticked Off: Lyme Disease Trip Report [Re: ianmanger]
Julie Offline

Registered: 01/16/00
Posts: 2090
Loc: SoCal
I'm so sorry to hear that - how very scary! I'm sorry your climbing season is shot.

Scott had Lyme this summer. For him it was a week-long 100-104 fever with killer headache.

He did have the rash. BUT!: it was only there for a few days; really, only clearly annular for a day or two. In addition, it was on his underarm (ticks like body creases). On top of this - he felt quite badly, and was in bed most of the time ... covered up! It was only by chance that I caught it. Plus which - what if you don't have someone watching for a rash for you?

So while the literature tells you that the rash occurs ~80% of the time ... my take-home message is that it's probably less likely to be seen than that. Maybe 80% of the people who present themselves to a doc, have a rash .... but I'd bet there's a lot more who feel quite badly and missed a rash entirely.

#40240 - 09/29/08 07:02 PM Re: Ticked Off: Lyme Disease Trip Report [Re: Julie]
chip Offline
Carpal Tunnel

Registered: 10/06/01
Posts: 2679
Loc: Sittin' Pretty in Fat City
A conference I recently attended said only 50-60% of lymes victims will have a rash and many will not appear annular (target lesion). I was fortunate the first time I had it that one of my residents noticed the rash on my arm while scrubbing for a case. Again, glad you are getting treatment and hope all heals quickly.

#40242 - 09/29/08 07:08 PM Re: Ticked Off: Lyme Disease Trip Report [Re: chip]
talus Offline

Registered: 08/23/04
Posts: 1259
ian get well soon. when you travel into the woods eat lots of garlic the day before
John Okner Photography

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