Thursday, July 31, 2014


This is a TMI post about girl stuff.  Consider yourself warned.

So roughly two months ago I started Yasko's short cut protocol for MTHFR defects.  I'm taking her

  • All in One Vitamin
  • Ultimate B Complex
  • Phosphytidyl Serine Complex
  • Be Calm Spray (GABA/Glutamate balance)
  • Resveratrol Spray
  • Amino Acids Spray

I'm also taking
  • Lithium Oratate (for deficiency and per protocol)
  • Ubiqinol (per short cut protocol)
  • Zinc (for deficiency)
  • Iodine (for deficiency)
  • Potassium (Celebrex depletes potassium and it helps my muscles)
  • Grape Seed Extract (per protocol)
  • NAC (left over from CFS/ME protocol: good for mito function)
I've been taking this cocktail along with my two meds for just over two months now.  I've been having trouble with my period since January sometime.  After going on the protocol it kicked into high gear.  Constant bleeding and passing clots.  I became anemic and got very dizzy and tired from it.  I ended up in the ER and at the ob/gyn's office.  I had an ultrasound done (they found fibroids but nothing really large): I had a biopsy done (came back clean).  The doc declared estrogen dominance and gave me prescription strength progesterone.  I wasn't too worried about it since progesterone is on Yasko's list of optional supplements for balancing GABA and Glutamate. 

Four pills later and I felt like crap.  I was back in bed again unable to do anything.  I looked into the MTHFR protocol.  Turns out women start menstruating when they start the protocol and it is often very heavy.  It eventually stops but I found many stories of this happening so it wasn't just a single random person.  I just wish it had been mentioned somewhere so I didn't have to get all the tests done and be worried that I might have cancer or some such.  Geesh!

Anyway, after finding this out I stopped taking the pills since they were making my CFS/ME so much worse.  The heavy bleeding had abated by this point anyway.  Woot!  Other than the odd random spotting I've been period free for almost two weeks now.  Woohoo!!   

Having multiple things wrong at the same time makes diagnosis and tracking that much harder.  CFS/ME, fibro, osteoarthritis, floxing, possible menopause and now MTHFR protocol thrown in for good measure.  Dear god the pain.  The blood.  The hot flashes.  Just make it stop.  

At least the protocol is helping.  There has been a steady and marked improvement in my CFS/ME symptoms since starting the protocol.  Now if my girl parts would just behave themselves and I could cut down the joint pain from the floxing I would be pretty happy.

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....".