Friday, August 23, 2013

CFS and the Quinalone Antibiotics

So I'm going to take a WILD guess here and say that maybe perhaps my CFS improvement has to do specifically the Quinalone class of antibiotics, more specifically Cipro and Levofloxacin.

I am trying to read this article that gets into detail about how this drug class interferes with the CNS.  Of course I don't understand most of it but what pops out at me is that it diddles with the GABA receptor sites.  Now I know that GABA is a problem in CFS/ME.  I just can't remember if it is a shortage or abundance.  Maybe someone can tell me.  I'm too muddled up right now to go hunt it down myself.

In the six days I've been on the Quinalones, I'm already doing better than ten days on Xifaxan.  Yesterday was my last day on the drug so now I'm in the detox phase.  Tomorrow I'll start eating ferments to load up on my probiotics.  I can hardly wait to see how my CFS is doing in a couple of days.  I just might be back to walking around the neighborhood.  WOOT!!!

BTW, my left knee hurts like the Dickens and I've now got a very bad limp.  I'm crossing my fingers that it goes away.  That would be very nice.

Antimicrobial Safety: Focus on Fluoroquinalones
FDA Beefs Up Fluoroquinalone Warning

Tuesday, August 20, 2013

CFS vs My Left Knee

About five years ago, when I was healthy and relearning how to figure skate, I spent my entire practice session doing three turns.  This involves a nasty torquing of the knee.  For some reason my left knee took issue with this and blew up like a balloon.  After that practice session, it was never the same again.  I had multiple cortisone shots into it which didn't last very long so I turned to my awesome acupuncturist, who kept me skating without resorting to surgery.

Step forward five years to January of this year and the raging UTI that put me into the hospital.  But what does this have to do with my left knee you ask?  Bear with me... To cure this nasty infection, I had an IV of levofloxacin and was sent home with Cipro pills.  A week later I was back in the hospital and this time had an IV of Cipro and was sent home with Bactrim pills.  Not only did this get rid of my UTI but I made a huge recovery of function from my then severe CFS symptoms.  This left the docs scratching their heads and me going for pee tests, poop tests and even SIBO tests.  Of which, nothing showed up other than I needed more Bifida in my diet.  Nothing pointed to why the drugs helped my CFS.

Two months after the hospital visits my doc and I decided to give another round of antibiotics a whirl to see what happened.  My CFS symptoms had slowly gotten worse since Christmas so what the heck.  I took ten days worth of levofloxacin in pill form.  Again I had significant improvement of my CFS symptoms.  Due to holidays, doctor vacations and kid going back to work full time (no more taxi service for me) I couldn't get another round of antibiotics after this even though I wanted to try them again to see if I could improve further.

Now, somewhere along this timeline and of course I have no memory of when exactly my left knee started hurting.  It blew up like a balloon and behaved as if I had been ice skating and weight lifting.  I started to ice it daily.  I had to be careful standing up since it occasionally wouldn't bear my weight. It hurt to go up and down stairs.  I occasionally limped.  My chiropractor tried adjusting it which only made it worse.  Again this was another medical mystery, since I had been couch bound due to the UTI and moving even less than normal for me, there was NO reason that my knee would suddenly start hurting so badly.

Then I finally saw my CFS doc and he told me that Cipro and Levo can cause muscle and joint problems in some patients and he didn't want me taking it any more.  So we came up with a plan to try Xifaxan instead, which I did three weeks ago.  The whole thing was a cluster fuck disaster which I'll get into in another post.

Last Friday I came down with another raging UTI.  Now these things take off fast in me due to my compromised immune system thanks to the CFS.  Within 12 hours I go from "gee there is something wrong" to "get me some f'ing pain killers NOW".  So I was back in the ER being pumped full of IV Cipro again.  I'm now on Levofloxacin pills.

Two days ago I found this:

FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection  

Yes, this include Cipro and Levofloxacin along with a few other antibiotics I've never heard of.

So HELLO knee pain.  It is from the drugs.

However, upon reading the release from the FDA I decided to look into both Cipro and Levo more in depth.  It turns out that this class of drugs can affect the central nervous system, brain and/or heart in some individuals.  Could this be the reason my CFS symptoms improved???  These drugs are doing something to my brain, heart or CNS to make me more functional again?  I mean I was swimming for cripes sake!!  I walked several hundred feet with no crash afterwards!  This a few months after being unable to make dinner most days.  To me it was a miracle!

But now I face a decision:  stay on the drugs and risk permanently injuring my left knee or continue to take them so that my CFS improves.  Talk about being stuck between a rock and a hard place.   I can't bring myself to talk to anyone about it and every day that I take one of these pills my knee gets worse.  The pain never really went away since it first started in winter.  Now I'm having to keep it bound to reduce the pain and swelling and so that I can walk on it.  If I permanently injur it I may never skate again which would devastate me.  But I want to get better from CFS.  I can't stand being so sick I can't shower, cook, clean, walk, shop, read...


Friday, August 9, 2013

Interval Training for CFS

Back when I was healthy, I used to do interval training.  This is where you exercise as hard as you possibly can for a fixed amount of time and then drop to a low intensity for the same amount of time.  It makes you feel like you are going to drop dead of a heart attack but it is very effective at increasing lung capacity and cardiac capacity.  I used to do one minute intervals on a rowing machine.

CFS crash recovery reminds me of interval training.  For every 30 minutes of light activity I have to lie down in a quiet shady spot for 30 minutes.  This allows me to get things done without causing my symptoms to worsen.  Activity is cumulative when it comes to crashes.  Unless you allow yourself to return to baseline, it can quickly become a downward spiral.

I was fighting this crash.  Mostly because I was doing so well prior.  I assumed that I would recover in a couple of days and go back to having tons of energy.  I pouted.  I railed.  And yesterday, after some crying, I accepted that this was going to be a prolonged crash and that I needed to start CFS interval training.

Today, each time I got the least bit brain foggy or tired, I went and laid down in a quiet spot.  I never slept but would close my eyes and empty my mind.  I would just shut off for a bit.  After a while my eyes would open and a while later I would get restless and start fussing.  Time to get up again.  So my day went: breakfast, rest, dinner prep, rest, dress, rest, paperwork, rest and so on.  My rhythm turned out to be 20-30mins on and 30 mins off.  Paperwork causing brain fuzz much faster than physical work which I found surprisingly odd.

So, I'm plodding through my LTD paperwork.  I got quite a bit done today.  I had decided not to stress out over it and not to set any goals.  With the intervals, I managed to get out three faxes, two emails and a letter all requesting medical records.  I also managed to fill out four forms which are always extremely hard and taxing for me mentally.  I also made a wonderful crockpot chicken dinner, scrambled eggs and sausage breakfast and managed to get dressed.  WOOT!!

You can't deny that this method works.  I'm slightly fogged tonight but I'm not the headbobbing incoherent mess that I was yesterday or the day before.  So it looks like CFS interval training for me for the foreseeable future.  I would love to say this crash will end soon but there is just no way to predict things with this illness and this is definitely a prolonged crash.

BTW, today is my last day on Xifaxin, an antibiotic.  Tomorrow I load up on probiotics.  I'll probably start my day with a large glass of clay to help flush stuff out.  By tomorrow night, I'll be eating fermented pickles, beets, cabbage, and maybe some yogurt, kefir, and kombucha.  One of the food bloggers I follow call kraut, kefir and kombucha the trifecta of ferments.  She believes they will cure anything.  Here's hoping!!

Wednesday, August 7, 2013

Day 11

Yup.  I'm still fucked up.  I'm not helping myself though.  As soon as I get a good day I think I'm all set and overdo it.  Turns out this is one of those lllloooonnnggg recovery crashes.  I have to be careful everyday or risk getting stuck in bed the next day.  I slept most of Sunday.

Now to add fuel to the fire, I got notice from my private LTD that my case is up for review and I have to get all my records to them by the end of the month.  This includes all medical notes, all test results, letters from my treating physicians, names, addresses, diagnoses, prognoses, why I can't work yada yada yada.  I'm too messed up to read or think straight right now and I need to be able to put together a HUGE packet of information since this will cover the last three years.  I need to get letters out to docs requesting they write letters; I have to get requests out to clinics and hospitals for test records; I HAVE to be organized.  This is such a nightmare at this point.  I'm now kicking myself for going swimming the other week.  I could handle this if my brain still worked but it doesn't.  At least I know better than to just fill out the dinky form they sent me.  What I have to send them is more like my medical tome.