Hallelujah! Miss Independent

I feel I have gotten a glimpse of independence.  I have gone from missing independence to Miss Independent, well sort of.  I have come to the realization I need help to regain this sense of freedom.  The most useful tools, my car hand controls and my cane.  The hand controls in my car have helped tremendously.  I have now been able to start physical therapy because I can now get myself there, take my daughter to school, and even enjoy a trip to a small clothing store by myself.  

I had a hard time embracing the cane though.  I have to admit, I did not like the looks and the comments of “Oh! What happened to you? Did you hurt your leg?”  Or, “Why are YOU using a cane?   You are so young!”  Well, o.k. the comment about being young is kind of nice.  I will take that one.  But it was hard feeling everyone was watching, wondering “What does she have?”  I tried it without a cane for a few weeks, but after attempting to maneuver Charming Charlie, an accessory store, without it; I changed my mind.  I think the sales lady was totally convinced I had visited the Mexican cantina next door and had WAY too many margaritas.  I was falling into every other display, trying to regain my balance.  My pre-teen daughter was with me, and I caught a few sympathetic glances from the sales clerk to my daughter.   You know the look, “Oh that poor girl, having to be out with her drunken mother like that”.  The truth is, I don’t need my cane every single second of the day, but I reach this moment in time where my body totally locks up, my muscles are too fatigued to go on any more, and I lose my balance.  My walk becomes more of a slow shuffle of pain.  The problem is I never know when that moment will come.  So now I walk proudly with my cane, because I certainly don’t want to be thought of as the local lush.  

 

This whole experience of my adverse reaction, which in my opinion has now turned into chronic disorder, has taken many things I enjoyed away from me.  One of them is singing.  My voice tires easily with long phone calls and singing simple hymns cause me to get out of breath.  I think this is one of the areas where it bothers me the most.  I miss my weekly practice with our church choir and singing the occasional solo for my church.   My voice has a hard time reaching those first soprano notes that at one time was achieved so effortlessly.  This week my choir did a surprise “Random Act of Culture” at a local mall.  They sang Handel’s “Hallelujah Chorus”, one of my favorites.   I haven’t been able to sing with them the past 10 months, but I stepped out of my comfort zone and pushed my out-of-shape voice to sing along with them.   It was glorious, and for a short time, I certainly felt I was Miss Independent.  Hallelujah! 

Thanks for reading!

It Sucks!

This week I asked my husband to be a “guest writer” for my blog.  I thought it would be nice to hear from a family member’s perspective.  He agreed, under the condition that I would not change the content, only help correct grammatical errors etc. So here is his account of me being floxed, warts and all…….

Hello.   For a change Lori is not writing today’s blog, but rather me – her wonderful, fantastic, awesome husband.   (Of course, Lori’s would challenge that statement).   I have never written a blog, but Lori told me to just be honest about how her being “floxed” has impacted me and the kids.   With that in mind, I told her the title would be very honest and easy – because “It sucks!”

Guess I’ll start at the beginning.  The phrase “life can turn on a dime” comes to mind.   You see, I took Lori to the doctor the day she had her IV of Levaquin.   She went in very sick from food poisoning.  After about two hours and two IVs of fluid she started to be like her normal self; and then came the deadly IV!   She immediately started feeling bad.   Within thirty minutes she was in very bad pain and our life has not been the same since.   If I had not been there and seen it for myself, I would have a hard time believing a drug that is suppose to make you better did this to her.  But I witnessed it first-hand.   Boy do we wish we could go back in time and change that day.   Granted, Lori is not alone.   After all, many good people throughout the world have had their lives changed instantly; be it a car wreck, finding out you have cancer, or being floxed.   For any life changing event like that; it sucks!

Little did I understand how much that day would not only change Lori’s life, but all of our family’s.  For years, we have joked (with a lot of truth) that Lori is the CEO of our household.  She cooked, cleaned, did laundry, took the kids to school, made sure everyone got to appointments, etc.   Meanwhile, I focused on career and making sure we could pay the bills, pay for the kids’ college, and have something left over for retirement.   After being floxed, things have had to change dramatically with all of us doing more and relying on Mom a lot less.   Now keep in mind, Lori has her way of doing all those household things.   Since I have been reasonably successful in my career; I don’t like being told I’m doing simple chores the wrong way.   Who cares how the freaking towels are folded!   Now, Lori and I can find logical ways to solve these daily living issues.   However, the situation does bring about new relationship and emotional problems.   Okay, let me be blunt.   Lori and I rarely argued, but now they are much more common, and the arguments are mostly over stupid stuff.   We sometimes joke we love each other but don’t really like each other.  .…Hmmm; well to be honest we are often not joking with each other. :(  Even after nine months, we have not successfully conquered these new relationship and emotional issues which comes with being floxed.   It Sucks!

While the daily living issues can be frustrating, it is even more frustrating seeing someone you love in pain most of the day.   And the worst part is not being able to do anything about it.   I am probably like a typical husband.  Even if Lori just wants to vent and talk about her pain, I still want to try to fix it.   The thing is; I know we are past being able to fix it.   Both of us have researched extensively and we have made sure she has seen the best doctors; but there is still no “fix”.   On top of that, I am not a very compassionate person.   Lori probably needs a lot more emotional support from me, but I know I fall short in this category.   Maybe I’m still in an anger or denial stage.   Mostly, I just feel a loss for words.   When she tells me she’s in pain, the only thing I can think of to say is a simple “sorry”.   That doesn’t quite seem to do justice for the pain.    Because she is in pain, anything touching her hurts – so hugging or cuddling is not practical.    Of course, if we had one of our fights about the normal daily stuff, then I wouldn’t want to hug her to begin with. :)   It really just pisses me off (can I say that in a blog?) that the doctors don’t have something to take away more of the pain.   It Sucks!

Now generally I am a private person, but I am going to open up here.   Lori’s floxing really depresses me because it has crushed many of my personal dreams.  You see, I love to travel and do many things while on vacation.   However, now I realize there is no way Lori and I can do all the future plans I had for us.   Yes, we will work in some travel, but not to the degree I was hoping for.   African safaris, whitewater rafting in New Zealand, walking on the China wall, and especially spending time in the Italian wine country; may never happen.   Don’t get me wrong, I’m not giving up.   I’m already researching motor homes to buy when we retire so we can visit all the great National Parks.   My thought is Lori could travel with a nice recliner chair to rest most of the day.   I do recognize we have been blessed in that we have already taken many wonderful vacations as a family – Hawaii, London, New York, DC, and many more.   However, whenever your future hopes and dreams are “stomped on” it is still depressing.  It Sucks!

I hope all of that made some sense.   I know Lori has really enjoyed writing this blog and getting everyone’s feedback.   The online social community has been very therapeutic for her.   Even though we have been married twenty-one plus years, she can still surprise me.   After fifteen years of marriage, I finally heard her sing.  It was a Latin solo for our church.  It was beautiful!   As a mother, she will fight, fight and keep on fighting for her kids.   Our daughter has epilepsy and insurance companies are now scared of her!   Now her passion is advocacy for all of those being floxed.  Little did I or others know that she is an excellent writer!   Granted, she might not get a cure for herself, but she is making a difference so that fewer people will ever have to say – “I got floxed”.

Thanks for reading!

Driver's Education

I went back to driver’s education this week.  I had my much anticipated evaluation for hand controls for my car.  The evaluation was done by an Occupational Therapist (OT).  It felt quite strange being on this side of an OT evaluation and treatment.  We swapped OT stories, which did dampen my anxiety, some.

The evaluation was required by the installing company, not the state of Georgia. I found out that my assumption was correct.  There are NO laws in Georgia regarding adaptive driving equipment or training.  So the experience for me in my state may be different from what may be required in yours.  My training required was simply based on the OT evaluation and her recommendation of what I needed to safely drive. 

My evaluation consisted of vision, cognitive, physical evaluation and of course, a driving test.   The whole process took 4 hours, which totally drained me.  I have not had the endurance for much without frequent rest breaks, so this was taxing on my body. 

 

I have never had test anxiety, yet this day I was overwhelmed by it.  The vision test was pretty simple, testing acuity and depth perception.  Which, I have no depth perception and never have my entire life, because of a lazy left eye.  Even though I did not “pass” this portion of the test, it is a deficit I have had my whole life, and I am used to accommodating for it.  

The cognitive test was stressful for me.  I had to remember lists of words, do simple math in my head, comprehend a paragraph read to me and answer questions.  I passed in the “average” range, but it did confirm deficits which I knew I had.  My short term memory and math skills are no longer in their top performance. These are test that I, myself, would give to head injured clients.  It was frustrating that I now could not pass with flying colors.  Thanks Levaquin!

My physical evaluation also did not reveal too many unexpected areas of deficit.  Overall my strength is significantly weaker than it was prior to Levaquin.   My muscle strength (for any OTs reading this) was in the fair plus range proximally.  For those who are not OTs, my hips and shoulders were much weaker than my hands and feet. However, I know from just doing normal activities around the house, such as even typing this, my hands are also weak and fatigue quickly.  The one area that did surprise me was how slow my reaction time was with my right foot.  The OT had a gas and brake pedal attached to her computer to measure my reaction time with my foot, and then with my left hand to see if I could benefit from the change to hand controls.  My reaction with my hand was much quicker and in the safe range.  Because I did not have the movement of the car and feedback from the surrounding environment, I had a difficult time maintaining the correct speed with my foot.  The proprioception in my foot was impaired and I no longer was getting feedback from my ankle and foot where it was positioned.  This also surprised me, because I was not aware that I had this problem. 

 

I also was given the Georgia state written road test.  Good grief, when will the testing end!  The above testing took a total of 2 ½ hours.  The road test was about to begin.  Based on my evaluation, the OT recommended the push/rock hand control with a hand spinner knob used for steering.  After a quick review of how to work the controls, the driving practice began. 

 

I was suddenly catapulted into feeling like I was 15 again, learning how to drive a standard stick-shift.  The sensation of being on those quiet Mississippi country roads with Dad trying to get me to understand how to release the clutch and at the same time apply enough gas came rushing back.  The anxiety and the sweaty palms were included.  The difference here, I am now MUCH older, and the roads are definitely not quiet in the Atlanta area.   I first started in a business parking area, and gradually progressed to divided highway driving.  The driving consisted of many turns, start/stops on inclines, merging etc.  The controls actually require very little pressure and allow my left arm to rest on my knee or on the door arm rest.  The steering knob is used to help with one handed steering.  She originally had it place in the 2:00 position on the wheel and my shoulder quickly became fatigued.  She later moved it to the 5:00 position which was markedly better, but my arm was already so fatigued at that point.  By the end of our drive, I was feeling much more comfortable with it and could carry on a conversation with her while driving. However, my right arm felt like a noodle.   She will give me one more road practice in my own car once the controls are installed.  

I could have never driven that much with my foot, that is for certain, but I was discouraged with how quickly my arms did fatigue.  As I write this, it is 2 days after my road test, and my right shoulder is still quite sore and fatigues even more quickly than normal.  I have come to the realization that long car drives are no longer in my future.  But at least this gives me the ability to take my daughter to school, or run an errand. I am hoping with having the steering knob installed at a lower position, and not having my body so tense from the anxiety of learning something new, I will be able to withstand the driving better.  I also have an option to add in additional arm rests if I need them.  However, I am going to just try what they have recommended for now and see how that works.  They are getting installed on April 11. 

For those that I have spoken to that have been contemplating hand controls, I hope my experience helps you.  I am not going to lie; it can be quite a costly item.  It is not covered by insurance, however it can be applied as a deductible for your taxes as Durable Medical Equipment.   I am sure the cost will highly depend on your state law requirements.  You have to consider the cost of the controls with installation plus, in my case, the cost of the OT evaluation and the amount of training needed.  In my situation, since I still have children dependent on my driving and my husband is out of town a lot, the need outweighed the costs.  I have spoken to some in other states that did not have to undergo such an evaluation that I did, so they only had to pay for installation costs.  Others have told me their state required 10 hours of training, which certainly would make the cost astronomical.   In my opinion I would not get these controls without having someone really show me and train me in how to use them.  In this case, I say driver’s education is a must.   

Thanks for reading!

I Can't Drive 55

Well, it is official.  I can’t drive 55, or at least I can’t unless I have the help of my cruise control.  My reasons for not driving 55 are very much different from Sammy Hagar’s.   My husband has been hounding me, yes HOUNDING ME, to look into getting hand controls for my car.  I am having increased pain and weakness in my right foot.  I keep thinking it will get better, hoping, praying.  However, it has now been almost 9 months of very limited or no driving at all.  The day it really hit me that I needed to give into this request was an early Monday morning.  My husband was out of town, and it was up to me to get my daughter to her school that was 15 miles away.  I got into the car, started the engine, put it into reverse to back out of our garage.  I pressed the gas, nothing, tried again, still nothing.  My muscles just were not going to cooperate.  So I gave it some help by pressing down on my knee with my hand to force pressure on the gas.  Hmmmm, I don’t think this is safe anymore.  I dropped off my son on the way, and FINALLY, I was on the divided highway.  Aaahh, relief for my foot!   I could use the cruise control now.  With the constant pushing of “accel, accel, accel” on the cruise, I finally got the car up to the right cruising speed to finish getting us to our destination of her school.  By the time I got back home, I was in tears from the pain and the frustration.   I called my husband.  “I think it is time for the hand controls”.  Since then I have done little to no driving, and the loss of independence is disheartening.
 

The task of finding out how to go about getting hand controls has not been easy.  We finally found a facility that installs them, but not until I undergo a 4 hour assessment from an occupational therapist.  This therapist is about to go to therapy, a weird change of roles for me.  Early in my profession I too would assess head injured clients to see if they could be deemed safe to be drivers.  Now it is me in that “drivers ed” seat, being assessed for hand controls.  My evaluation is coming up this Friday.

One of the most difficult things has been to find out Georgia laws regarding evaluations and drivers training for such things. Do I need a doctor’s referral?  Will I be required to have a certain amount of hours of training?   We searched everywhere, and could only find laws on PARKING.  So in Georgia, I guess you can drive however you want, but you better be careful where you park when handicapped.  Go figure!  We found plenty of laws for other states, but none for Georgia.  We still are not clear about this. From what we understand, I will need to undergo the evaluation, and then it is determined if I will need further training from that point.  After the evaluation, I will then need a written prescription of what type controls I exactly need.  Then the appointment will be set up with the installers.  I have also called many times to see if a doctor’s prescription is needed with NO returned calls.  I will not be happy Friday, if I get there and they don’t have everything they need to proceed.  This whole process is not very clear cut, and very frustrating. 

 

I am not exactly jumping for joy with the thought of getting hand controls.  I want to fix me, not change the car.  I have said this hundreds of times.  However, for me to become more independent and drive safely once more, I know I need them.  Because without the use of the cruise or the dangerous use of my hand to apply pressure, I just can’t drive 55!

Thanks for reading.

Mito or Not Mito: That Is the Question

Mitochondrial Dysfunction* or not, that seems to be the common question regarding my health.   I now have had THREE doctors say they suspect I have mitochondrial dysfunction.    Now proving it is a whole different matter, and a series of events I am not sure I want to undertake at this time in my life. 

Here is the problem with testing for mitochondrial damage, or at least how it was explained to me.  It is not a run-of-the-mill test. Only a couple of labs in the US know how to test for it, and it can costs from thousands to tens of thousands of dollars.  Often insurance will "pre-approve" it, only to later not cover it.  I had my follow up visit with my neurologist this week and we had an hour and a half discussion weighing the pros and cons of having this testing done. A muscle biopsy has been suggested by two neurologist and the most recent, my rheumatologist.   However, that will entail a 6 inch incision in my bicep and/or thigh.   It would only confirm whether I have mito dysfunction or not.  There is no cure for it.   The other option is to have both my mother and me undergo testing to look at the mitochondrial DNA.   A person’s mitochondrial DNA only comes from their mother, and by comparing the two, they can tell if there has been damage.  She has Parkinson’s, and I don't want her to have to endure a lot of testing.   Although she said she would do it.   But again, very few labs are equipped for this, and it would just confirm it or not; still no cure.  It would only give me an answer on whether I will get better or get worse.  I am not sure I want that answer.  Right now I have hope for getting better.  I am not ready to find out differently.  So for now, I am not doing the testing.  If in a year or two, I am still having muscle fatigue that interferes with daily life, then I will consider it again.  If they are closer to a cure, it may also be worth it.   Here is a website about mitochondrial dysfunction.  Their recommendations for treatment: rest, energy conservation, good nutrition, supplements.....that is what I am doing now. http://www.mitoaction.org/

The pain in my right foot continues to increase.  It is now suspected I have Tarsal Tunnel Syndrome (like carpal tunnel, but in the foot).  At first I was excited by this news…maybe I have better hope of getting treatment.  My foot causes me the most amount of pain and also interferes with my independence the most.  However, I am finding that this condition is rare. Yay me! (dripping in sarcasm).   However, it is a common occurrence with Levaquin adverse reactions.  It does not always respond well to treatments, including surgery. My neuro has started steroid injections (I know, I know ~ no steroid for floxies!), and is planning on a repeat nerve conduction/EMG in a month to test specifically for this condition.  He is waiting the month to see if the injection and an increase in my Gabapentin will help.  However, I can tell already it is not helping.  After that, it sounds like I will be getting yet another doctor referral for this condition.

This past week has been a roller coaster of emotions for me.  I now am hearing from a third doctor they suspect irreversible mitochondrial damage, I have Tarsal Tunnel Syndrome, and I received a PERMANENT handicapped parking tag.  You always think you want one of these, until you HAVE to have one.  My husband, with stubborn protests from me, is also looking into hand controls for the car.  Not a proud moment for me.  I want to fix me, not the car.  However, I can’t drive, and his work is requiring more and more travel.  A non-driving mom of two just does not work in today’s world. 

 I have dusted off the cane; and I now have to use it again due to increased pain, increased atrophy in my right foot, and decrease in my balance.   This back slide in progress is frustrating.   However, I am hoping that getting a confirmed diagnosis of Tarsal Tunnel Syndrome will open up treatment options for me, giving me a small light at the end of this long tunnel.

Thanks for reading!

* It is a theory that the fluoroquinolone antibiotic adverse reaction causes mitochondrial problems with those of us who have been affected so much.  Levaquin works by destroying the mitochondria of the bacteria.  It is a theory that it has caused damage of the mitochondria to the "good" cells also.  Statin medications have also been found to do this.  Please note this is a very simplified explanation.  Article on Mitochondrial Toxicity:  Mitochondrial Toxicity  (note added 3/15/11)

Ob-la-di, Ob-la-da, Life Goes On

February has been a trying month for me, forcing me to realize that despite how I feel, life goes on.   My husband’s travel has picked back up, requiring him to be out of town for the majority of the time.  We were fortunate that since I was floxed in July, his travel had significantly decreased until now.  His increase in travels occurred at the same time I was asked to help co-moderate one of the fastest growing online FQ support groups on Facebook.   Thankfully, we have a great team of moderators that have helped pick up the slack.   The increase of the demands on my body has not been easy.

I am learning that I have to pace myself, to leave energy for me at the end of the day when the kids come in the door needing snacks, homework, and dinner.  Unfortunately, these needs don’t stop just because my body has a hard time keeping up.  I have been lucky with the timing of my son’s driver’s license which has been beneficial in helping out in the chauffeuring area.  Driving is one of the most difficult things for me to do physically.  I STILL cannot drive for long periods of time.  My foot and arms will hold out for the two trips to my daughter’s school, but that is about it.  I will have to say this hindrance has been good for our checking account, since I am unable to carry out any shopping sprees, uh, I mean errands.  I find my body does not respond well to unexpected occurrences, such as kids’ illnesses, extra trips to the grocery store, sick dogs, or any “stressor” out of the norm.  I have a slow paced body, in a fast paced world. 

We have had some spring-like days lately, and although my neuropathy pain welcomes the warmer weather, it only makes me realize that the world continues to change around me.  I feel, in a way, I am being left behind.   As the days become longer and I see the new growth and rebirth of my backyard, I feel even more stagnant in my recovery.  I am craving to be able to work in my garden that I have spent years trying to create.  It is frustrating to stand by and see someone else take care of it or see it not done at all.   My body’s endurance is just not up to it.  It has been 8 months since my reaction, and I was hoping for more of an improvement by now.  I feel I have reached a plateau, neither getting worse or better.  I have had an increase in pain and weakness this month, but I feel it is more related to the increase in my activity level.   My muscles still fatigue quickly causing them to become sore and weak after very little effort.  I have learned that I need to tackle tasks in small steps, taking frequent rest breaks.  I have certainly come a long way from the first 3-4 months, but a far cry from being full mended. 

Doctor appointments are starting back again, and I received another opinion from a second rheumatologist.  He confirmed that my problems are neuromuscular, and my joint problems are more than likely secondary to joint instability from weakened muscles.  I am due to see my neurologist this week.  I feel I have reached my limit in acquiring any more answers from tests or doctors.  I believe there is not a whole lot the medical community can do at this point.  The best healer is time.  So for now as winter morphs into spring and I try to modify my living, life must go on.  Thanks for reading.

The Blame Game

Who is to blame?  This question has entered my mind time and time again.  Who do I totally blame for my adverse reaction to Fluoroquinolones?  This can be a loaded, and unfortunately, not a clear cut answer.  Well, at least in my case.  I knew I had several “mild” reactions to medications when I entered that immediate emergency care facility.  I could remember them all, except for one. I was so disoriented that I could not recall the name.   The physician rattled off several suggestions, but none sounded familiar.  Ugh! I should have made a list and kept it in my purse.  (Fault- mine)

The nurse later entered my “cubicle” where I had already received two bags of IV fluids.  I was feeling better, and could have a somewhat lucid conversation now.  He started my third and final bag of fluid, and injected an “antibiotic” into my IV.  He had been present when I stated I had a reaction to an “unremembered” medication.  He did not mention the name of what he was giving me.    I immediately started feeling horrible.  I started having the most severe headache I have ever felt in my life, which is saying a lot since I have a history of migraines.  I could literally feel the pain move down my spinal column and into my hips.  I started shaking uncontrollably as if I had a high fever.  After checking my temperature multiple times, it was determined I did not have a fever.  The pain started moving down my legs, into my arms, sternum, and jaw.  It was unbearable.  Why was I suddenly feeling worse when, I had been getting better?  The staff’s response was that my body had been through a lot from being so sick, it was most likely that.  “What medicine did you give me?”  The answer was, “Levaquin”.  I knew immediately that was the medication I could not remember.   Why had they not SAID the medicine BEFORE entering it into my IV?  (Fault- nurse)

Believe it or not, even though I was having difficulty walking, and I obviously was turning for the worst, they discharged me home.  I was in unbearable pain that night.  I returned the next day to the same clinic.  I mentioned to a “new” physician of what occurred the previous day, and that I had been given Levaquin, a medication which I had a mild reaction from before.  I described that I felt like I had been hit by a car.  Anything bound by connective tissue was in extreme pain.  I also had a rash covering my neck and chest.  The doctor questioned why I was given Levaquin in the first place, and stated he did not see that it had been needed.  My WBC count was up because of the food poisoning, so no need for the antibiotic. He proceeded to order IV Prednisone and non-steroidal anti-inflammatory to help counteract the reaction.   I started feeling somewhat better during the IV, and thought it was helping.  I returned home, with a prescription of more prednisone and Zantac to help stop the absorption of the Levaquin by my body.  However, I started feeling even worse.  I now felt like I was being burned by acid from the inside out.  It was the most excruciating pain I have ever had.  Since it was still the weekend, I once again returned to the clinic.  But this time I had done some research…..prednisone and NSAIDs are specifically listed on the Levaquin patient information sheet not to use during adverse reactions, because it will make the reaction worse.  Steroids cause an increase risk of connective tissue damage, and NSAIDs cause an increase in Central Nervous System reactions.  I asked this same doctor about this new revelation, and his response was, “That is only for 70 year olds, not for people like you.”  He once again gave me a shot of NSAIDs, and I stupidly accepted his answer. (Fault- physician)  (Fault- me for stupidly believing him)

Thank goodness the weekend was now over, and I made an appointment with my general physician.  By this time the uncontrollable crying had started.  I could hardly tell her what happened over the weekend through the hysterical sobs.  I was in SO much pain!  Somehow she was able to get the gist of it, and I am convinced she now thought I was crazy.  I showed her my prescriptions.  She fortunately was educated enough in Fluoroquinolone reactions that she knew I needed to immediately stop the prednisone and NSAIDs.  She instructed me to keep the Zantac to interfere with the absorption of the Levaquin.  She gave me a prescription of Hydrocodone for the severe pain.  (Thank God!)  She had never seen a reaction like mine, and thought something else was also an underlying cause.  I will stop here with this recount, because if you have been following my blog, you know the doctor visits started, and I now have been diagnosed with large and small fiber peripheral neuropathy.

But for most, the blame game does not end there.  Most often the tables are turned on the victims themselves.   I have been fortunate that my neurologist does not blame me, but many others are being blamed for their reaction.  Perhaps they were under stress, perhaps they have MS or Fibromyalgia and did not know it, they exercise too hard, or maybe they were predisposed for a neurological problem.   The list goes on and on.  FQ toxicity victims are not getting support from their physicians to help their fight against the drug manufacturers.   One recent post on the FB Fluoroquinolone group, describes it this way.  “[It is like] a rape that you report and no one believes. There’s evidence, proof, but they turn a blind eye. The rapist is free to keep raping over and over.  Everyone thinks that the one you are blaming is innocent....he hasn’t done it to other people. Why would he do it to you? So, they let him roam around....and he will attack, again & again!!!”  A response back, “Yes. And the victim gets blamed for everything.”

I cannot end this post without mentioning, in my opinion, the two most important parties in this incident, the FDA and the drug companies; (Johnson & Johnson makers of Levaquin, and Bayer the makers of Cipro.)  In my opinion, physicians have no intention of harming their patients.  They do their best with the knowledge they have.   However, I do blame the drug companies for poorly educating physicians, or the pharmaceutical reps that are pushing these medications.  Doctors are not educated in what to do for adverse events, which in my case made the situation worse.  They push the pharmaceutical reps to convince the doctors that these are great meds, even for minor bacterial infections.  In reality, these meds were originally intended for severe infections in which other antibiotics did not work, or for treating anthrax or malaria.  There is a black box warning for Fluoroquinolones for tendon ruptures, but I am finding that most never were given information about the warning.  If you receive an IV, as I did, no paperwork or warning is ever given to you.   (Fault- drug companies for not educating proper use and what to do for adverse reactions).

 The FDA mission is to protect the public from unsafe drugs.  However, they are doing nothing about the daily reports of adverse reactions.  Many of these medications are being severely restricted or banned by foreign governments, yet they are the number one prescribed antibiotic in the United States right now.  Just look on askapatient.com to see how often severe reactions are reported on that website alone, and that does not include the people who do not find that page.  There are 2600 court cases pending right now for tendon ruptures alone.  These do not include people that have been affected in other ways, like me.  The problem is the FDA acquires a lot of funding from pharmaceutical companies.  This causes a huge conflict of interest; therefore medications are not pulled from the market.  The current black box warning is only as a result of a lawsuit by the consumer group Public Citizen against the FDA, for ignoring long standing evidence that FQs cause tendon ruptures. (Fault- FDA for not protecting us)

So, who is to blame the most?  It certainly is not me or any other victim of Fluoroquinolone Toxicity.  It is easy to play the blame game; point fingers at the victims, the doctors, the pharmacist, or the nurse.  But in reality, it is the drug company that educates all of these people and the FDA that is supposed to protect us.  That is who I place the blame on the most.