Thursday, August 28, 2014

Sister Dearest rev.2

There is no doubt that relationships of all kinds are stretched to their limits when you become chronically ill.  Sometimes those relationships break.  

I originally wrote this post two weeks ago when it was all still very raw.  I had to save it as a draft because it was long and nasty and angry.  So here is the revised version.  While it sticks to the facts more and I don't ramble as much, I still get incredibly angry so there are some bad words in it.  Consider yourself warned.  

It has been only two weeks but it already seems a lifetime: I broke off all contact with my sister.  Things have been weird between us for about two years.  She stopped visiting.  I can't travel so that meant no contact.  We were never ones to chat via phone or email.  Mostly I would hear from her when she wanted something.  So this meant no conversations casual or otherwise.  We did visit in passing at family functions. Mostly it was the big hug at the beginning and end of the visit like we were long lost pals but the bulk of the day would be me joining conversation groups only to have them dissolve around me.  After a few attempts at having conversation with various family members, I would decide I was too tired to participate in this game and go into a quiet room to sit by myself for the remainder of the event.  

The cold shoulder from my sister reached new heights this year: I had to invite myself over to my brother's for the family Christmas get together (he never hosts Christmas so I can only imagine that my sister instigated it).  Both my brother and sister didn't visit Mum and I when we were all on Cape Cod together this spring.  Then I wasn't invited to a family dinner this summer that my sister had arranged.  

I had enough by this point and called her out on this.  I sent her a simple to the point email asking why I had been excluded.  (You have no idea how big a deal this is for me.  Standing up to my sister is like challenging Thor.  You risk bringing her wrath down upon your head.  I was proud of myself for sending the email.  It took great amounts of courage for me.  Anyway, I digress...)  I got odd lame excuses for the exclusions.  Things like it was all my brother's fault for the Christmas exclusion even though he never makes arrangements and she ALWAYS invites him to my house.  Or that it was my fault for not arranging the dinner party myself.  While this isn't stellar behavior, it is what I expected from her.  If it was only that, I might have dropped the entire thing.  However, the second half of the email took the biscuit.

The first paragraph was a bizarre attack on my husband for some slight that occurred over two years ago.  None of us can figure out what happened to prompt this.  My sister though has never gotten over her man hating days.  Going through three and a half husbands doesn't elevate her opinion of men either and I think my husband is just a convenient target.  Misandry at its finest.  

I do know hubs was horrible during the first year of my illness and I did almost leave him.  However, he has turned things around and our marriage is almost back to normal now.  It took two years but it looks like things are back on track.  My sister on the other hand seems to want war.  

Okay, horrible and weird but still not a pull the plug on the relationship offence.  This is just normal bat-shit crazy sister stuff that I've come to expect from her.

The next paragraph was the kick in the teeth though: 
"I surround myself with positive people. ...  I choose to have positive thoughts and be with positive people. People that can see the good in everything.  [sic] Not the little negative nit picking little things. ...  Bottom line [sic] I believe that you and I have never had anything in common and never will. ... I wish positive things for you but I do not choose to be around you."

I did do some heavy editing but it was necessary for clarity.  The actual paragraphs wandered all over the place: telling me how awesome my brother was for taping my mom skating; accusing me of mocking my brother; accusing my husband of making jokes at others' expense; accusing me of laughing at said jokes; she doesn't want to be in the same room with my husband; her wishing I would get well; etc, etc.

I would have thought she wrote this while drunk but it was sent at 8:30am.  The writing was all over the place hopping from topic to topic.  But, the basic gist was I'm a bad person, my husband is a bad person, and she wants nothing to do with either of us.  Sorry you are sick but fuck off.

Involved in the middle of that mess was the following question:
"If you were handed today a miracle pill that you could take, and your CFS and other ailments would just disappear - which means that you would have to go back to work tomorrow, clean the house again, and lead a "normal" life....would you take the pill?"
How bloody insulting is that!?!  I've done nothing but try to find a cure or even symptom relief.  Some of my "cures" have made things worse (see the posts on Cipro).  Luckily most cures have been ineffectual or had side effects that went away when I stopped taking them.  Some have helped as I've talked about before.  I would love nothing more than to lead a normal life again.  I HATE HATE HATE her for even asking this.  How horribly mean is this????  She is implying that I like sitting around the house not doing anything.  That I like being sick.  What the ever living fuck!?!

 I just can't write about this without getting horribly upset and angry.  How DARE she!?!  Positive thoughts my ass!

So after much hand wringing, discussions with hubs and mum and my therapist, I cut off all communication with her.  I sent her a brief email stating "There will be no further communication between us.  I will only contact you with regards to Mum's health and well being.  I have copied Mum and [brother] to make them aware of the situation."  If I engaged with any of her content, then a massive massive fight would ensure.  I wouldn't win.  It would take a huge amount of energy on my part for very little gain.  I thought long and hard about things and decided that the best course of action was to severe all contact.  Even my therapist told me that it would be the healthiest thing for me to do; the best way to take care of myself.

You know what I felt afterwards?  Relief.  I'm done with her.  I'm done with her crazy.  I'm done walking on eggshells around her scared that I'll set her off and get yelled at.  I don't have to host any more weird family gatherings where the only people that actually talk to me are my Mum and my niece.  You would think that after feeding and hosting that lot for decades they would at least talk to me.  Fuck them.  Fuck them all.  I'm done.

In an odd way I feel like this illness has been an opportunity in disguise.  I have lost friends and am now shedding family.  I have lost my job and my career.  But in return my relationships with my mother and son are better now than before.  Hubs and I are on the mend.  I can pick a new job.  I can make new friends.  I can make my life so much better than it was.  All new and shiny and one that will hopefully make me happy.  I'm looking forward to my new life.  I think it will be spectacular.

Saturday, August 23, 2014

CFS vs. Broccoli

Several years ago I tried (and failed spectacularly) to follow Dr. Wahls diet.  In it she calls for NINE cups of vegetables with three cups specifically cruciferous vegetables; i.e. broccoli, cauliflower, cabbage, brussel sprouts, etc.  I ate all of these growing up so I dove in with gusto.  With each meal, I had something from the cruciferous family.  With each meal, my heartburn got worse.  It got so bad that it felt like someone was holding a blowtorch to my chest and it was set on max burn.  Holy cow did it hurt.  I called my integrative doc and asked what the heck was happening.  He asked about my diet and I told him I had switched to Wahls' protocol.  He immediately told me that the heartburn was directly related to the cruciferous vegetables and that I had to cut back.

Nutso.  So much for that plan.  I knew of two people that had their CFS drop to non-existent or manageable levels after incorporating huge amounts of vegetables in their diet.  Here I was stuck with rip my chest out heartburn.

Now, two years later, I find this little gem:
"Is Broccoli Good For You?"
Turns out that a chemical in cruciferous vegetables:
  • Poisons mitochondria (cell energy generators)
  • Inhibits microsomal enzymes in the endoplasmic reticulum (cellular manufacturing and detoxifying centers)
  • Generates reactive oxygen species (these are damaging “pro-oxidants”)
  • Interferes with thyroid iodine absorption
  • Disrupts epithelial barriers (can poke holes in sheets of cells)
  • Depletes glutathione levels (the most important antioxidant inside our cells)

So maybe eating broccoli isn't such a good idea for me.  Maybe my heartburn is trying to tell me something.  One of the reasons that I trusted Dr. Wahls is that she has done extensive research on food, diet and MS.  This is how she developed her diet plan.  Makes me wonder how she decided that we need such a huge amount of cruciferous vegetables in our diet to make us healthy.  This article is the complete antithesis of her work.

In my case it doesn't really matter because right now I can't eat much of any of the cruciferous veg.  Even sauerkraut is giving me heartburn two hours later.  Dang.  I am so not happy about this.

Friday, August 22, 2014

A Question

I'm in the beginning stages of learning biochemistry and neurochemistry so I'm not completely sure I'm interpreting this correctly.  If I am guessing correctly, then I just pulled on the right string in this huge knotball of an illness.

In the video (I posted yesterday) the modeler discovered that CFS/ME patients were all deficient in Phenylalanine.  Of course I had to look this up on Wikipedia:  http://en.wikipedia.org/wiki/Phenylalanine

Two things jumped out at me:
1) If people can't metabolize pheylalamine, they have to monitor protein intake to make sure they don't eat too much.
2) Pheylalamine is involved in neural glutamate receptor binding/activation.

If I'm reading into this correctly it explains two things to me:
1) CFS patients have too little pheylalamine rather than too much.  My craving and eating large amoutns of protein might help build up pheylalamine levels in my system since it is deficient.  I always feel better after eating a heavy protein meal.  Light meals even with small amounts of protein just don't cut it.  I feel lousy later and need to eat again much sooner than normal for me.
2) The phelalamine deficiency might be the origin of the glutamate/GABA imbalance in the brain.  Makes me wonder if the same underlying mechanism exists in autism.  The supplement protocol I'm following was originally designed for autistic patients who also have a glutamate/GABA imbalance.  Maybe the trigger is different but the same treatment works for both.  No matter; it seems that the pheylalamine shortage might be the cause of excess glutamate in the brain.

Now take all of this with a grain of salt since I'm guessing here.  I could be totally wrong.  It is interesting none the less.  I'm looking forward to the treatments that Dr. Klimas and company come up with if the pheylalamine model works out.

To be honest I looked up the Wiki article hoping that I could figure out which supplements I could take.  However, reading the article, it sounds too dicey.  It would be playing with brain chemistry in a big way based on an unproven chunk of science.  Mathematical models don't always work out the way we want when applied to real life.  I'm already making people nervous screwing around with genetic testing and taking supplements based on a doctor I found on the internet.  This would be too cutting edge even for me.

Thursday, August 21, 2014

CFS/ME In The News

Finally some encouraging news from people researching CFS/ME.  People are finally starting to look at the illness as a systemic, dynamic one and looking into genetics/epigenetics.  WOOT!!  This is so very exciting!

First a YouTube video on the mathematical models being developed.  From what I gather it looks like it is based on modeling of dynamic communications networks (yes I used to listen to lectures on this stuff prior to getting sick: I know more about optical packet networks than I care to).

For some reason I can't embed the video but here is the link:  http://youtu.be/I9NhS_rDfTU
And an article on the video:  http://www.cortjohnson.org/blog/2014/08/13/models-suggest-chronic-fatigue-syndrome-amenable-intervention-dr-broderick-talks/

Here is an article on epigenetics and CFS/ME:  http://www.cortjohnson.org/blog/2014/08/20/epigenetics-study-highlights-immune-issues-chronic-fatigue-syndrome/

Good stuff!!

Thursday, July 31, 2014

A MTHFR Girl

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....".