Friday, July 18, 2014

On Becoming a Floxie

I've only partially told my Floxie story.  Now that I know more I can put things together better.  So here is my story and how it relates to my CFS/ME.

In December of 2012, I got a very bad UTI and ended up in the ER.  I told them about my CFS/ME and how infections tend to rapidly get worse because of my compromised immune system.  So they did some tests and put me on an IV of Levofloxacin which is the drug of choice for UTIs.  Shortly after starting the IV drip all of my joints started to hurt.  It slowly got worse.  I thought it was from lying in the uncomfortable bed for hours while waiting for the test results to come back.  I thought it was my fibro acting up.  I was already completely drained due to running to the bathroom every 15 mins while being in a bad CFS crash.  I had the shakes and headbobbing before lying down so it only made sense to me that my pain levels were now escalating.  Thing was, this was bad and it continued to get worse.  Then I had a full blown anxiety attack.  I wanted to rip the IV out and run screaming from the ER.  I felt chained to the bed and like I was being held prisoner.  I wanted out.  I started to cry.  Hubs rang for the nurse and I told her I was in horrible pain.  Every single joint in my body was screaming by this point.  I was sitting up clinging to the bed rails and crying.  The nurse mercifully pumped me full of morphine.  I very quickly collapsed back into the bed, drugged and pain free.

Looking back I now know that my body had it right.  I should have ripped the IV out.   My body was fighting the toxin invading my joints.  This was the first indication of being Floxed.  The pain levels were way above anything I have ever felt during 25 years of being a fibromite and 3 years of being a CFSer.

I went home with Cipro pills which I dutifully took.  However, I slowly declined again and ended up back in the ER on Christmas night.  This time I had a Cipro IV.  Again they had to put me on morphine for pain.  This time though they gave me the morphine first so I have no idea if the Cipro caused any joint pain that night.  I went home with Bactrim pills.  I finally got rid of the UTI but the fun and games only just began.

Once the UTI cleared a miracle happened.  My CFS symptoms dramatically improved.  I talked to all of my doctors and no one could figure it out.  I asked if it could be the antibiotics clearing up a case of chronic Lyme (since the Lyme patients insist that any improvement while on antibiotics is proof positive that you had Lyme all along) but my doc said no.  The recovery happened too fast.  Lyme takes much longer to resolve so something else was afoot.  Now that I could read I started looking at science papers on Cipro and Levofloxacin.  I discovered two things: Cipro screws with the GABA balance in the brain and Levo causes tendon damage and anxiety attacks.

So, the Cipro did a fantastic job of restoring the GABA/Glutamate balance in my brain making my body function well again.  Not cured but holy crap what an improvement.

The dark side that I was ignoring however is that I had to start Prozac because my anxiety levels were through the roof.   I was having meltdowns at every meeting I had with my shrink.  Normally this doesn't happen very often.  I was crying through virtually the entire one hour session.  Every. Single. Time.  Just not like me at all.  The prozac helped tremendously but I knew I still wasn't normal.  I had an inkling that there was a chemical imbalance but at a loss as to the cause or the cure.  At the time I had no idea that it was the Cipro/Levo poisoning that was causing it.

Then my left knee swelled up like a balloon.  It looked like I had injured it figure skating except I had been lumping on the couch due to the UTI making me so sick.  It hurt like the blazes and I had to ice it, wrap it and put Traumeel on it.  I often couldn't put weight on it because of the intense pain.  The joint pain slowly spread to my entire back, shoulders and arms.  I was downing both Celebrex and aspirin everyday.

So even though I was doing way better with my CFS/ME symptoms I was in huge amounts of pain and having anxiety attacks.  Not knowing that this was from the Cipro and Levo I went back to the doctor for more Cipro when my CFS symptoms slowly got worse.  I took the pills.  Felt great CFS wise but my knee got worse.  By this point I was off the prozac so my anxiety went up again.  At some point in this mess, I also started to have nightmares.

I was walking and swimming and cooking and driving and reading.  While I was excited this was all happening I was also in a knee brace, going through tubes of traumeel, having nightmares and mild anxiety attacks.  Life was good.  Then I had another UTI.  Back to the hospital again.

This time I had a massive anxiety attack when they loaded me up with morphine.  Normally I'm calm as a cuke.  Not this time.  I had shortness of breath, dizziness, again the feeling of being trapped and wanting to run.  Pain was pretty bad from sitting on the uncomfortable bed.  The morphine knocked me back but I was still worried so they put me on oxygen for no reason.  Then they pumped me full of Cipro.  I forget what pills I went home with.

This time I went lame.  I was on crutches.  I couldn't put any weight on my left knee at all.  My CFS symptoms were in significant remission but I couldn't walk.  Shit.

I made the rounds of the doctors.  No one could help me.  My regular doc had never heard of Cipro poisoning.  My CFS doc flipped and told me to never take Cipro or Levo ever again.  He told me that he had patients that were permanently lame from them.  

After much deliberation I decided to never take any of the fluoroquinolones ever again.  I want to go figure skating again and going lame permanently was just too high a price to pay for gaining ground with my CFS/ME.  Since the docs couldn't help I went back to my trusty acupuncturist to work on my knee and the Cipro poisoning.  Woohoo!  Best decision.  Very shortly after seeing him I got off the crutches.  Many months later the pain shifted from the left leg to the right leg which to him was good news.  Many many months later I was walking but my lower back was very painful and limited the duration of any type of movement.  This summer after little improvement I decided to take a break.

My current status is that I have quite a bit of joint pain in my lower back, both hips, right knee and right ankle.  Sometimes my shoulders and elbows join in the fun and every once in a while my wrist and hands but that is rare.  I'm no longer having nightmares or anxiety attacks.  I find that I have to take a vitamin E complex to help with the joint pain (found this in some science paper or other) and often use MSM cream and Traumeel if the pain is unbearable.  I probably should use them more.

The CFS/ME has improved now that I've been on Yasko's MTHFR short cut protocol for several months.  It rebalances the GABA/Glutamate levels in the brain.  I'm back to reading, walking, cooking, and driving short distances.  However, none of this is done without pain.  I can't stand as long as I would like or move around as much as I would like due to searing pain in my lower back.  The break from the acupuncture seems to have done some good since my right knee is no longer screaming at me but the muscles in my right leg seem to be overly tight often forcing me to walk on my toes.

So I have been Floxed.  I am a Floxie.  I have yet another patient group I can belong to and yet another Facebook page to follow.  Not something that I'm very happy about.  I'm already following fibro, CFS, MTHFR and mold pages.  Ugh.

Many of the other Floxies are trying to sue the hospitals, doctors and drug companies.  I don't feel like I can.  I almost insisted that they use the strongest antibiotic on me when I went to the ER.  I'm not sure they would have treated me any differently had I not been a CFS patient but that is a moot point.  Then I went to my own doc asking for more Cipro pills because I had such improvement with my CFS.  I had no idea that the pain, anxiety or nightmares had anything to do with the Cipro or Levo.  If I thought it was my fibro and CFS acting up how on earth can I prove it was the Cipro and Levo in a court?  Plus I really don't want the stress involved.

I am really ready to walk away from the entire thing.  Or should I say limp away...  I really don't want yet another patient identity.

Thursday, July 17, 2014

Going Down the Floxie Rabbit Hole

Weirdly a doc running a MTHFR forum referred me to a Floxie page.  A floxie is someone that has taken a fluoroquinolone antibiotic (Cipro, Levaquin, Avalox, etc) and has chronic debilitating side effects from it.  In my case it is chronic debilitating joint pain in my lower back and legs.  Upon entering the new Facebook page, I feel like I've fallen down another rabbit hole.

I have such mixed feelings about the group.  A lot of them are really really angry.  Many of them are telling me that I don't have CFS/ME and that I must have been floxed prior to my diagnosis.  Many of them are trying to sue the drug companies.  All of them are looking for cures or at least symptom relief.
It sounds like a duplicate of every other rabbit hole I've explored: Lyme, mold, CFS, ME, autoimmune illness.  Each one insists that the set of symptoms are caused by what they are advocating.  I've been told that I really have Lyme, that I've been exposed to mold, etc.  Now they are insisting that I got floxed before getting sick.  Um no.  I was on zpacks not the fluoroquinolones.  Anywho...  This all gets tired pretty quickly.  And I tend to get combative much too easily.  I hate being told by a complete stranger that I just met on the internet that I have my diagnosis all wrong.  It just ticks me off.  So I'm irritated with the group but reluctant to leave it since they post a LOT of useful information there.  I've also found that I can give some useful info regarding diet and what has worked for me as a CFS/ME patient.  I like helping people.  But I also find that they are clinging and desperate.  They keep asking me for the list of supplements that I take.  I keep refusing since it was based on genetic and blood testing so it may not be the right thing for them.  Again irritating.  I want to help but these guys are so sick and so helpless and I'm not a doctor.  Many of them just want a list without getting the testing done and it just isn't that simple.  Sigh....  Enough grousing.

What strikes me as odd is that ALL of these illnesses share almost identical symptom sets.  Which is part of the reason that each new forum I wander into the population insists that I've been misdiagnosed and I'm really one of them.  Sweet on the one hand but very irritating on the other.

So it seems to me the basic model is that while all of these illnesses have a different trigger, tick bite, mold exposure, antibiotic use, the body craps out in an almost identical way.  Somehow the mitochondria become damaged and the brain and/or CNS become inflamed.   Makes me wonder if chronic Lyme is really damage from the antibiotics and/or the bugs damaging the mito.  They are all way too similar to each other.

This group as with all the others have their own mythos as well.  Claims that the body damage can occur months to years after exposure.  Neuro damage, CNS damage in addition to the acknowledged tendon damage.  Claims that the drug erodes nerve cells.  And other odd things.  Basically people with little science background trying to explain what is happening to their bodies.  There is quite a lot of stuff on fluoroquinolones in the science literature but you have to be a microbiologist to be able to read it.  No wonder the science is being buried in the mythos.  Makes me very dubious to read many of the postings.  I prefer to read the actual science papers.

I'll probably wander around in the Floxie rabbit hole a bit longer but wander back to the MTHFR rabbit hole soon.  That hole seems to hold more answers for me than the Floxie one.  Maybe they are related as well.  Things that make you go "hum....".

Friday, June 27, 2014

Sam E Follow Up

BTW, I stopped Sam E a week ago after I woke up after four hours of sleep with a severe case of restless leg syndrome.  I don't normally have RLS so this freaked me out.  And it annoyed the hell out of my cat who was trying to sleep on top of my legs.  Luckily I saw my acupuncturist that day and he did a detox treatment (I love acupuncture for treating drug/supplement side effects.  It works awesome!).  I had the best sleep I've had in months that night and the following two nights.  Anywhere from 8-12 hours of solid sleep.  No waking up.  Just blissful heavy sleep.  Now that I'm off Sam E and catching up on sleep I'm feeling WAY better.  I guess no Sam E for me.  It just doesn't agree with me.  As far as I can figure I had too much dopamine in my system.

CFS and the HPA Axis

Every system in my body went wonky when I contracted CFS.  Thing is everything is so interwoven and interconnected I'm never sure which string to pull on first to mitigate some of the symptoms.  

Here is an interesting tidbit on why sex hormone regulation goes on the fritz.  

the enzyme that converts cholesterol to pregnenolone is limited, and it requires a lot of ATP, which is cellular energy.  It’s an energy-intensive process.  That means that the amount of pregnenolone we can make in the body is limited
Turns out that pregnenolone is the master hormone which regulates everything else in the body.  Guess what we have a shortage of with CFS?  Yup, ATP.  We have very limited cellular energy.  I must interject here that my general health did improve when I added more cholesterol and fats to my diet.  However, before I can say definitively that it made a huge difference I have to say that I made the switch to Paleo at that point so other things may have been a factor in the improved health.  Anyhoo, I digress.  Back to the topic at hand....

Oh and if we are under stress (read that as "sick") then the little amount of pregnenolone we do manage to make is converted into cortisol.  So for us CFSers it is pretty much a lose-lose situation.  So what happens downstream if we don't have enough pregnenolone as women (men are different)?

  • low progesterone-high estrogen
  • possible PCOS
  • hair loss
  • facial hair growth
  • loss of sex drive
  • irregular periods
  • mood imbalance
BTW, that entire list describes me except for the PCOS.  One of the first things that went wonky on me was my period.  I also started growing a nice mustache and I'm a girl.  Not that I had great sex drive before I got sick but I have NONE at all now.  My mood has stabilized since going Paleo but I can still have bad days as evidenced by this blog.   Also, my hair doesn't fall out by the handful anymore which I'm very happy about.

The gut issues we almost universally have as CFSers also gets into the act:
Impaired gut function can mess with hormones in several different ways, so if you have a parasite or a fungal overgrowth or dysbiosis or leaky gut, that causes inflammation.  Inflammation suppresses the function of the hypothalamus and the pituitary in the brain, which produce the stimulating hormones, and then it also suppresses the function of the adrenals and the ovaries and the gonads in men that produce the actual hormones.  Inflammatory cytokines can also cause hormone resistance, 
Interesting that he mentions inflammatory cytokines which are a known problem in CFSers.  Another strike against us.

As for myself, I've tested negative for everything except leaky gut.  I have done what I can with my diet and my gut is definitely doing better than five years ago.  However, I'm not perfect as I've mentioned before and cheat WAY too much.  I'm not sure I can ever climb back on the perfect Paleo bandwagon.

While there is lots of good basic info in the podcast, the author never really gets around to saying how to treat this properly.  People even complained about this in the comment section but there was nothing forthcoming from the author.  I did find it interesting how so much of the CFS issues overlap with HPA problems in the general population.

Here is the link to the podcast:

Here another somewhat unhelpful article on how to fix the HPA when you have CFS:
Mind that the article is written by a dietitian and not a physician.  Basically she covers the use of low dose hydrocortisone (which I did with mixed results: not much improvement but I did win an extra 20 pounds of body weight), getting adequate sleep (but she has NO idea about the severity of sleep dysfunction in CFSers and offers only the usual sleep advice) and reducing stress levels via meditation.   Like I said not helpful.  I need to do some reading on other sites regarding fixing the HPA axis preferably without drugs.

Even though these two pieces didn't help with fixing the problem I do like it when I learn what the problem actually is.  That knowledge gives me things I can search for on Dr. Google.

Thursday, June 19, 2014

The Sam E Conundrum

It has taken me a while but I've managed to get all of the pieces of Yasko's short cut protocol in place.  While reading her book Feel Good Nutrigenomics there was a chapter on Sam E in which she recommends adding it to the short cut protocol.  All fine and dandy.  I happen to have some in the fridge from some other protocol I tried or something I read somewhere.  (great memory can you tell??)

Anywho, I started the Sam E.  All sorts of nasty things happened.  Lots of mood alterations, heart palpitations, heartburn, trouble sleeping despite my sleep meds.  So off to to see about side effects of Sam E.  Much to my dismay I can't take it with the drug I'm using for sleep since it is really an antidepressant and Sam E can interact with them and cause what is called a seratonin storm.  Take it from me it is pretty unpleasant and if I hadn't caught it early it can be fatal.  Ugh.  Now I remember why it is in the fridge.  I went through the exact same thing when I first got the Sam E; it interacted with the prozac and trazadone and I needed those meds more than the Sam E at the time.  Sometimes I swear my brain is trying to kill me off.

So after much debate with myself, I decided to continue with the Sam E and quit my sleep med for a few weeks to see how things settle out.  Apparently, Sam E can also lead to pretty severe detox so I cut back to taking it every other day.  I was still having nausea and heartburn but it toned down after about a week and I've been doing better in that regard.  Thing is my sleep still rots.  It is BAD.  I'm waking up often.  I'm very restless.  Can't get back to sleep after I wake.  I'm waking up tired which just gets worse each day as the sleep deprivation accumulates.  So two weeks into this and I'm doing horrible again.  First the brain fog came back so I couldn't read anymore and finally today my body crapped out on me and I'm having trouble walking.  I can't even see properly; everything is fuzzy and out of focus.  Sigh..

I had a nice chat with some people on Yasko's forum about this and they said to cut WAY back on the Sam E for now.  Like crush the pills and eat a small part of the dust way back.  So I decided today that my sleep is more important to me right now than the Sam E experiment so I'm switching back to my sleep med and dropping Sam E.  They also told me that I really need to get the GABA/Glutamate in balance first along with getting my lithium levels up.  They gave me a long list of supplements I could use but I'm too brain fogged to figure out which ones I should take.  It would suck if it was the entire list.  It will cost me a small fortune in new supplements.  

So my current game plan is to wait two days until the Sam E is out of my system then go back on my trazadone so I can get some good sleep.  Once that happens I should be back to functioning well again.  Crap I was taking short walks once or twice a week.  I don't want to be stuck on the couch again.  

I also found out that I can't take my zinc and lithium at the same time so I've separated those two.  Zinc in the morning and lithium at night.  They also told me to stop the taurine until I have a urine test done to see if I even need it.  So it looks like more testing will be in my future.  I'll need a hair metal analysis to find out how my lithium levels are doing and it will also tell me if I have any metal toxicity (I wouldn't be surprised if they find mercury and aluminum in my system since I've been exposed to both).  I'll also be having another pee test.  Such joy.  

This is going to be a very long two days.  Blech...  ALL I WANT IS A GOOD NIGHTS SLEEP!!!

Saturday, June 14, 2014


I've been out of sorts this week.  I know I'm doing better physically since I am amazingly bored.  I'm at that in between stage where I'm too sick to do anything but well enough to want to do stuff.  I really thought that this was just boredom but this evening I suspect it is something else....

A feeling of profound purposelessness came over me.  I used to set goals for myself: taking new classes, learning new subjects, getting pins at Toastmasters, passing tests in skating, putting in plants to improve the garden.  I can't do any of this now.  Not just physically but mentally.  I've been trying to learn about the methylation cycle and it is just too much for my brain.  I'm really trying.  I used to be really really smart so this is just killing me.

The last couple of days I've just given up.  All I've been doing is getting up, plopping onto the couch and hanging out on the internet all day.  The only time I get up is to prep food.  I have no motivation and really am just sinking in to despair.  I don't like this.  I'm not sure if it is just a chemical imbalance or a real crisis.  Maybe a bit of both.  More than likely I'll slouch around until my energy levels come up and then I'll be able to do stuff again and this will pass.  But in the meantime I'm going to mope a lot.

Wednesday, June 11, 2014

Taurine and CFS/ME

Been a while but I went through one of my withdrawal phases.  It happens.

Anyway, during my absence from here I've been doing tons of reading on MTHFR, genetics and supplements.  Details to follow at a later date.  Suffice it to say I'm seeing marked improvement in brain function now that I've been on Amy Yasko's "short cut" protocol for two months.  I'm reading again.  Woot!!  Still not tons of energy but I'm having more good days more often and shorter recovery periods after my bad ones. Improvement is slow but steady.  Double Woot!!

On to taurine...

I've been fascinated with taurine ever since my foray into trying to understand why Cipro made my CFS symptoms go into remission.  The only thing I could find is that it readjusted the glutamate/GABA balance in the brain which resulted in reduced brain inflammation.  Since I had a severe reaction to Cipro continuing to use it wasn't an option so I started looking for other ways to rebalance glutamate/GABA.  I ran across a couple of sentences in Dr. Wahls' book Minding Your Mitochondria that taurine supplementation would help.  However, it didn't go into why so I started supplementing with it with minor but noticeable improvement.

In the meantime, a Japanese study came out showing that yes indeed brain inflammation was present in CFS/ME patients.  Nice to have my own suspicions confirmed (my CFS symptoms improved dramatically after steroid shots for an unrelated problem but only lasted the month that the shots were effective for). Actual paper:

Today I ran across this presentation by Dr. Stephanie Seneff (BA in biophysics, EE in Electrical Engineering and PhD in Computer Science all from MIT and she is currently on staff at MIT: i.e. a very very smart woman) on Taurine and it all ties neatly back in on itself: taurine, brain inflammation, sun exposure, nitrous oxide cycle, mitochondrial dysfuction, toxin buildup, etc, etc, etc.

It gets a little technical but is fascinating how this all appears to be interlaced.  Looks like I'll be adding taurine back in to my supplement regimen.  I had paired down to only Yasko's supplements so that I could see how the raw protocol worked and so that I didn't have any drug/supplement interactions (which did happen. twice. yuk!).  Now I'll add it back in and cross my fingers.  Yasko claimed that taurine could build up in the brain but Seneff says that is a good thing.  My impression is that Seneff has a better grip on taurine chemistry than Yasko does so I'm adding the stuff back in.  And the Grand Experiment continues....