a mark in time...

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This is a good representation of my current nighttime baseline. I think I should start posting these from time to time. It would be a good way for me to look back at my progress.

Like many of you other "floxies" know, the intensity can vary. Some days (or months) are better than others so this can change for the worse very quickly. When I do have improvements, it's very gradual. Even just returning to previous baseline takes months after I've pushed too hard or got sick (or stressed, angry, etc).  Not an all-inclusive description, but here is a brief note on where I am now.

Below is a transcript of a recording I made on the 14th of this month.

“Its about 9:30 PM, and I wanted to try and record what some of my typical days or nights are like. Right now, as usual I’m very… I’m just short of breath. And my breathing is very shallow. And like my Nurse pointed out, I don’t seem to breathe too often. And when I do I have a very hard time getting a full breath.  And it feels like there is that closing in my throat that I went to Dr. Li about a few months after this started – 4.5 years ago.

My heart rate is up. My heart doesn’t hurt like it used to. That hasn’t happened since about April or so of 2012. My heart is definitely tired and it does strain, it just doesn’t hurt.

My body is incredibly heavy, and tingly. I have a burning sensation all over my body, including my face. My muscles feel tight. Very very tight. Even to the touch, my leg muscles are extremely tight. And they’re very painful. As are my joints. My hips especially. But my knees have started hurting again. And my body just feels tired. Like I had a workout where I went past muscle failure. My body just sort of shakes.

My eyeballs feel numb, but they also hurt. They sting. My mouth is so dry. Very dry. My nose and my eyes are very dry. So much so that it hurts. And its not the humidity in Colorado, it’s been like that ever since it started and Chicago is a very humid place.

Feels almost like an electrical pain running through my body. And everything feels slow when that happens. My thinking gets slower. My eyes, they are a little blurrier than usual. They seem to strain as I hit the wall.

Saying I’m tired isn’t the word. This is so far past tired. I’m just heavy. My chest is heavy. It’s tight. All my muscles feel tight. Even my biceps. Noticing my hands feel tight… and I’m starting to slow down a whole lot.

This is generally an improvement. Until about June of 2012, it was always far worse than this. The way I feel now is how a single good day would have been back then. It’s just my body is so weak. I’ve become so weak I’ve lost so much muscle. I’m at 137lbs now. And while I’m experiencing some improvements with the intensity of the symptoms, I can do far less because my body is so weak. It’s just really taken it’s toll on me.  But I fight every day. Every day I fight. “

What I recorded that night is typical for me lately. Far better than it was at night 6-8 mos ago, same issues and sensations, just not as intense. There is so much more I want to add that explains what it's like to be in this body and what it's like to work through the mental challenges I now have thanks to big pharma. But I will have to make do with the fragmented thoughts as they come.

I recently had the chance to speak with several more people who have been "Floxed". It felt great to relay the progress I have made and relay as much of the science and remedies I have learned as possible. I found it incredibly helpful for me as well as I was able to simply say the things that I go through. Even though only another "Floxed" person could truly understand what I was saying, the point is that I finally got to speak and be understood. All the symptoms and issues that I have a hard time describing were simply understood as they too are experiencing it.

Best of all, we got to speak about some of the mental challenges we now face. Levaquin (Avelox, Cipro and ALL Flouroquinolones) cause brain damage amongst many other major issues.

Saline is my friend. Lactic Acid is not.

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After the Saline and Glutathione combination I notice an improvement with the tightness and some of the related pain. Today I feel an unusual amount of improved clarity of thought. Clearer in thought enough to write and post. Generally I begin to hit the wall by 4PM at the latest. Which also means that thought becomes much cloudier and tasks like posting this would be something I would not be able to do.  I do however feel that the recently increased dosage of NAC to 2400mg has a lot to do with this as does my recent additions of far better probiotics and digestive enzymes as well.

While I noticed improvements, I am still in fairly intense pain. About a 6.5 overall at the moment (6:54PM).  My entire body is in pain, legs are by far the worst for pain. My knee and hip joints are also intensely painful and feel loose.

I wrote the above yesterday, but my mind continued to soften (I was starting to hit the wall) and soon I was unable to see well enough to read nor be able to continue communicating my thoughts effectively. Make no mistake about it, the physical damage is devastating. But even with all of the things Levaquin has done to my body, it’s the effects on the brain that really make this nearly impossible to live with.

Back to the subject.

About 1.5 yrs ago I decided I wanted to try to add a Saline drip to my IV routine. My reasoning was that I was certain that certain types of the pain I’m experiencing is being caused by an abundance of Lactic Acid build up. When I try to move my body quickly, like tickling my Son for instance, an intense burning sensation washes over my entire body. Face, arms, legs, chest, back, etc. It stands to reason that I am producing an abundance of Lactic Acid/Lactate which causes the predicable pain I experience.

I used to work out often and am no stranger to Lactic Acid. I know that two of the best things I can do for Lactic Acid and it’s pain is movement and fluids. After workouts, the more you move the less sore you are, right? Well since I cannot move all that much anymore, fluids would be my only weapon.

I asked my primary care Dr for a script for NSS at 500ML. He looked at me like I had nine heads, but eventually agreed. Since then, I’ve been able to try a drip under different circumstances and different types of pain, on the spot since I have the supplies at home and am insane enough to give myself an IV even though my hands shake and I often do not see very well.

As I mentioned in the video, it does help. It doesn’t take away a lot of the pain(s), but none-the-less it takes away more than enough to notice and be grateful. And again, small wins are still wins.

With luck, I’ll be able to post more soon.

Glutathione - your body's 'Master Anti-oxidant'

Site moved to www.ThenCameMichael.com where you will find a new Glutathione section!

This post is now found here:

http://thencamemichael.com/2012/09/14/glutathione-your-bodys-master-anti-oxidant/

Glutathione has been a major part of my progress for the last 2.5 years. If I go more than 5-7 days without, I start going downhill. Fast. It is the reason I can walk again and communicate using words again.

I have learned a tremendous amount on the subject. My Neurologist, Dr. David Perlmutter, pioneered it's use almost 20 years ago for many intense Neurological conditions. He has since taught and/or consulted with a great many physicians on the use and administration of Glutathione over the years.  

 There are many forms out there. From pills to suppositories, inhalers, etc. BUT... the ONLY way for your body to get and use additional Glutathione is through IV. Period.

I have heard a few people suggest they had a less than plesant experience with Glutathione. From personal experience I am certain incorrect handling and/or poor product is the cause. I have personally had bad experiences early on. I had begun to urinate blood (a LOT of blood) immediately following my first few Glutathione IV's from a Dr in Chicago.

After several doctors and a hospital stay failed to figure it out, I went to the Dr's office and inspected his Glutathione supply. It was from some obscure pharmacy and was not only oxidized but also expired. Glutathione is very sensitive to both light and heat. Proper handling is paramount.  That means from the time it leaves the pharmacy until it reaches your bloodstream. Moreover, there is ONE place and ONE place only that I feel should be a source of Glutathione.

Wellness Pharmacy is where Dr Perlmutter has his compounded. As you all can certainly understand, I was not interested in trying anything other than what has been proven to work. That meant for me, I would only get it from the pharmacy that patented it's creation method.

Wellness has patented the method for creating 100% reduced L-Glutathione.  Once I switched to the pure form compounded there, not only have I had ZERO issues, it's potency is dramatically higher than the others I've experienced.

The correct way to prepare and administer Glutathione is through an IV push (NOT injecting Glutathione into a 500ml bag of saline!). It is important to dilute with 10ml of Sodium Chloride into a syringe. My dosage generally is 3000IU of Glutathione, diluted with 10ml of Sodium Chloride.

Glutathione is your body's "Master Anti-Oxidant". It is a naturally occuring substance that is largely responsible for your overall health and function. Among the many things it does, one is it's arguably the most effective scavenger of free-radicals. The little evil-doers that attack your body and brain continually.

A little over 2 years ago, I taught myself to do an IV push. I had no luck finding (or affording!) Dr's locally who would be willing to help. And I sure as heck wasn't going to go back to BoBo the Circus Chimp who had administered it the first time. He clearly was hardly competent. And Dr Perlmutter was 2000 miles away.

I want to share a video I made during today's IV push for a number of reasons. But most importantly, I made it to show that you CAN do anything - even things you think impossible. Let us not forget: Your thoughts greatly affect your outcomes in life. Whether you think you can or think you cannot - you're right. It's up to you to decide which you choose. Personally, I believe I can.

You CAN and will get through this.

I will soon do another post with more in-depth information on Glutathione as well as other supplements soon. But for now, know that together we will all get through this.

Please, if you have questions or would just like to drop me a note with your thoughts, please use the contact me page.

Coming out of the woodwork

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As we all have guessed, Michael doesn't get out much. Yet, it is really starting to amaze me how, when he does go out, he starts talking to random strangers about what has happened to him and they either know someone or are directly affected by this same family of drugs. For those of you reading this who know Michael personally, you know that with his charisma- something which I have always been a bit jealous of- he instantly disarms, relates to, and then becomes insta-friends with complete strangers. Lately, his world revolves around his condition. This only makes him a laser pointed at a target. And now, when he talks, he finds that people being hurt by this drug are coming out of the woodwork.

Most recently, Michael- who is in Florida for an office visit with one of the best neurologists in the country, Dr. David Perlmutter- started talking to a couple a few rooms away from where he was staying in his hotel. As they started to learn more, there was an eerie acknowledging of all the medical details. Usually terms like neuropathy have to be defined. The couple, though, recognized many of Michael's symptoms, because the young lady had been experiencing a lot of the same ones for 5 years. Though not nearly as severe, she experienced autonomic nervous system damage, fatigue, cognitive issues, and neuropathic pain. When Michael asked, "Did you take an antibiotic before this started happening?", she was surprised, for they had not pieced together that the Cipro she had taken to treat her bronchitis was what caused her 5 yrs of adverse reactions. This couple was from Indiana. They met in Florida. Michael then gave them as many websites as he could to educate them for their new battle, which now has a face. I do not believe this meeting was a coincidence.

This next story I found quite moving when I first heard it and am only now ready to share it.

Michael's father, who does online gaming told Michael's story to a man he plays with over the computer. This man happened to live in Louisiana. Well, remember in April 2010, a little disaster known as the Deepwater Horizon oil spill happened in the Gulf of Mexico. This man was one of many fishermen who helped "clean up" those waters. Many of them reported respiratory distress due to the toxic fumes coming from the waters they were working long hours in. When this man heard Michael's story, something struck a chord in him. He, as well as a large group of other fishermen, were prsecribed fluoroquinolones and steroids to treat their "respiratory distress". He mentioned to Michael's father how since then he has not felt quite the same- extremely tired, like his brain can't work right...Here comes the moving part...This fisherman along with others who were given the same "treatment" stormed the doctor's office and demanded they be put on something different because of what they knew this drug did to Michael. Can you imagine- you are a fisherman whose home waters have been destroyed because of big oil company negligence. You are forced to pick up this job cleaning the waters because it's not like you can fish now. And then you are given this toxic drug that has the potential to ruin your life. What a way to kick a man when he's down. In most sports that is considered illegal.

There have been many other people since then that have recognized parts of Michael's story as something happening to a loved one. Whenever Michael shares what happened to him- which is with anyone he meets- there is a connection. The landscaping man's son, the cable guy's uncle- anyone! 

When I hear him speak to people, what I see is someone who is finally becoming ready to share his story with the World in the hopes to save lives and affect change. And I think to myself, The drug companies don't know who they messed with. Because even being in the condition that he is in everyday, when a fire is lit under this man's a** he is powerful beyond measure.

Before this happened, I wouldn't say I was very progressive or liberal about my political and social opinions. In fact, I'd call myself blissfully naive. I didn't know the influence of pharmaceutical companies. I trusted anything a doctor told me. I believed in a system that I now see does not look after me.

Inside a quiet room

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"...at my worst when I was stuck in that chair. I couldn't move. I couldn't talk. I could barely keep my head up and all I would do was stare at the patterns in the carpet just to make sure I was still in there and alert. I remembered where each stain was. I was scared to sleep. I was afraid I wouldn't wake up if I did...."

As Michael talks about that period of months that happened less than a year after his first symptoms of poisoning began, you can hear him well up with tears. Remembering the period of months that he could barely walk- when even standing in one place was unreliable, and at the worst, when even talking seemed to take too much from his body- is an unbearable road to go down.

In those days, the quiet room at the back of our house was his prison. He isolated himself to protect his family from his constant suffering. He refused to fill the house with that kind of energy, and mustered up the biggest smile he could anytime we went back there to visit him. It sounds completely crazy. Why would a person who needed constant care be adament about being left alone for hours at a time? To live hearing distant voices laughing and playing and yet being so far removed and unable to participate in your own life....Is that a life? It was a prison. Truly his body was his prison and the quiet room contained it.

Michael had to relearn how to walk. He does so now, but under extreme concentration and only for short distances. Indeed, some of his physical abilities came back. He's not using a wheelchair anymore and can stand erect without it appearing awkward.



   But his mental impairment is very present. Many times thoughout the day Michael must escape to a quiet area of the house because his brain has had too much. Even trying to field the many questions that a curious 4yr old shoots at him can be too overwhelming. Sometimes he goes out to the garage. Where we live now, he has a nicer den area on the other side of the house where he can lie down. Anywhere we go, he has to have this escape route so he can quiet his mind down again and rest. Unfortunately, this quiet room is not impenatrable to our son. When he wants to find daddy he knows exactly where to look. But usually, the quiet room is his sanctuary.

On a much deeper level though, his "quiet room" can be anywhere. Michael stands outside the garage a lot, taking in the sunshine, listening to the birds, staring at the mountains. He becomes so in tune with his environment that he can tell which trees the wind is blowing through by the difference in sound. Listening to him talk is like listening to someone who has practiced meditation all their life. Even more profound, Michael deals with his pain by "becoming friends" with it. Sometimes, lying silently he becomes very aware of where pain lives and moves throughout his body. He can pinpoint one specific type and track it, and breathe through it, and live in it. Not many people I know can say that when they feel pain, they want to get to know it. Masking pain or removing it is more the norm. It amazes me how, through this illness, Michael has found this place within himself that is peaceful, and silent, and strong. To be able to access that quiet room within, is the greatest and healthiest gift he has found for himself. 

Out of the darkness comes light…

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It’s said that before you die, your life flashes before you.  For most of those first 500+ nights, I didn't think I would live until morning.  Worse still, my mind was so heavily affected that I couldn’t articulate what was happening to me very well. I hardly understood it myself. And I was all alone…

All day and all night, I was stuck in a chair in a back room of the house. Unable to move, so many intense pains and sensations starting… all of them so far beyond anything I’ve ever felt. Once the heart issues started to become more intense (roughly May/June 09), when I would try to speak, almost immediately my heart had a very intense sharp and burning/clenching pain. That pain would increase in intensity as I continue to speak and subsides rather quickly when I stop speaking. Around the time of these videos, I lost my ability to speak entirely for nearly a month and had to type to communicate to Nikki. Shortly after that, my hands became too numb and I couldn't control my fingers enough to type. I became locked in, unable to communicate in any way.

This still happens, although now it only happens when my baseline is low enough – which is frequent now, but not an everyday occurrence as it was. The heart pains I described in the video are the same that caused my heart issues in Sept - I leak Troponin when this happens which marks the death of heart tissue and beginnings of congestive heart failure.  The Mitochondrial damage explains this...
I am still very weak and have gotten significantly weaker in the last 12 mos.

 My mind was not right, I had an extremely difficult time thinking my way out of it. My mind was then (and still is) very slow, I was so confused. So detached. I would liken it to being in an awake coma of sorts. I knew what was going on around me, but the world was/is happening way too fast for me to process.

I still have all of the same issues. Thanks to the Glutathione IV's the intensity has gone down somewhat. Now I can walk very short distances around the house and most of the time I can walk upright now until I hit the wall. Which doesn’t make too much effective difference in functional ability as compared to “normal” and my improvements are completely dependant on the Glutathione. But it’s enough of an improvement to make me grateful.

Since this began, I have been struggling to be able to write about it. I get very confused. I am having a very difficult time summarizing this in a way that I feel makes sense and accurately explains what it’s like to be in this body.

I want so much to be able to give those like me a place where they can read the experiences of someone going through the same thing. I cannot imagine what it would have done for me early on to be able to find that there were others like me. I just sat there and let this thing impose it's will on me. 15+ long months where I was mostly bedridden/stuck in a chair. No way to get help as I saw it. I know there's more out there like me... just sitting there. Taking it, trying hard to fight alone because they're confused too.

Recently I began looking through my old logs and through all the scraps of paper I’ve written my scattered/random thoughts on. In the process I came across a bunch of videos that I didn’t recall making. I want to share them with you now with the hope that if you’ve been devastated by Levaquin as I have, that you’ll find solace and know you’re not alone. And most importantly, know you're NOT crazy and that no matter what the Doctors initially tell you, this IS happening and you WILL find help.

These videos were taken during a time where I was experiencing what I now call "hitting the wall". Once my body becomes exhausted enough as a whole, this is what happens to me still - although to a slightly lesser extent.  Some days are better than others.

There is much context I feel I have to add to describing what I was going through at the time so that what you’re about to see makes sense. But I’ve decided to just try to write whatever comes out.

Hopefully soon I will find it easier to describe in greater detail, but I think these videos speak for themselves. Because I was having a difficult time speaking clearly, I have also provided a transcript for each video.  But don't just read. Watch. Turn the sound up, it’s hard to understand me…

Video transcript:  6 August, 2009 – 9:10 PM

I really hope you can hear this, my voice is mostly gone. Like Laryngitis – but I’m not sick with Laryngitis. Something’s pushing in my throat. The more I talk now, the more my heart really strains and hurts.  And I’m trying to record this now because the last hour or so, I think, I very rapidly became like this. Everything is real heavy in ways I’ve never felt before. Every bit of my body – everything – instead of just like arms and legs or whatever. It’s hard to move and…(unintelligible) – It’s almost as if my body is covered in lead, all – all of it. Like a suit.  My face is heavy, my skin is heavy. I’m very slow. Like moving through molasses kind of slow. And up until a little while ago, I wasn’t able to move myself at all… too heavy. Arms too heavy, my body too heavy.  What little I could move made my heart hurt so bad. Which is kinda how it’s been…

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Video transcript: 6 August, 2009 - 9:20 PM

(unintelligible) …

Even my Brain is slow.

… My chest hurts so bad.  Right here. Right here is where it really hurts. And my breathing is very shallow. You can see I can move my arms a little bit. But they end up flopping around like they do when they’re asleep.

The pain just got very sharp. Right here…

I should have made a lot more of these videos. There’s a lot of times like this. Mostly since the 23^rd of June at Northwestern.  It’s been almost always like this. But I did have a brief period of improvement  from that, a few weeks ago. This is different. As it always is. It’s always worse somehow.

My actual eyeballs feel heavy. And I want to move my arms and body… I can move a little bit, but…

I don’t understand this. As you can see, I’m pretty calm about it. This is about as hyper as I get.  It’s all – clearly this is happening.

You just get kinda numb, you know? You don’t dwell on it, you just go with it. So I’m coping with it, not causing it. That just might be the hardest part of this whole thing. Doctors being lazy or arrogant.  Just throwing everything you tell them is wrong into the big abyss of “Neuropathy” – so they can go onto their next patient and not be challenged. They don’t like to be challenged.

Not that I ever really call the Dr much. I did for the heart thing, and the upper airway obstruction that I didn’t just develop.  It just took me almost 8 weeks to get a Dr to believe and listen for themselves.

I’ll make another one…(video)

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I still have a long way to go. I require a lot of care and have a Nurse that comes 3 times per week to help me.  But if you take the time to enjoy what you DO have, you will find a way to live through it all. In my case, my Son has been my reason. Looking at these videos is hard for me, I can't believe I lived through it (so far). There is strength in momentum. Get some. One giant lesson I've learned through this is that it's exponentially more important to feel strong than it is to be strong. It is up to you to find your strength in the love around you. Hold on with both hands and never let go.

Love and peace to you all,
Michael

... he just kept singing...

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It's been about a year since we left Chicago, and despite the enormous hurdles of finding and trusting health care in a different location, we accomplished quite a bit. We finally proved his mitchondrial DNA damage. He is taking his L-glutathione IVs fairly regularly. We constantly work on his nutrition. We live a beautiful life despite the medical baggage. In the morning, we wake up to hot air balloons rising outside our window and Michael gets to be there as Aedan goes off to preschool for the first time.
         Last night, though, shook me out of any piece of mind I thought we built for ourselves.
         It started like any other night. Aedan's bedtime meant that he, Dada, and I go to his room and lie with him for a while (read him a book, cuddle, sing him a song). He loves it when Michael sings to him. Lately, his favorite song is a sweet ballad by Pearl Jam titled "Just Breathe"

"Yes I understand that every life must end, aw huh,..
As we sit alone, I know someday we must go, aw huh,..
I’m a lucky man to count on both hands
The ones I love,..

Some folks just have one,
Others they got none, aw huh,..
Stay with me,..
Let’s just breathe."                   

                                                                                                                    

As Aedan drifted off to sleep Michael finished with the words,

"Nothing you would take,..
everything you gave.
Hold you till I die,..
Meet you on the other side."

These last words will forever haunt us now, for little did I know, but halfway through that song Michael started having intense pain in his left arm followed by a clenching pain in his chest. Last night, while singing his little boy to bed, Michael started having a heart attack.

But this is the thing about Michael- he is so determined to live through those few sweet moments of life that he gets, he just kept singing. He sang to that last line- until he knew his son was sound asleep- before he crawled out of his bed and stumbled down the hallway.

When I found him, his heart rate was elevated to the point of an Olympic sprinter yet he said he was freezing. He put on two sweatshirts and quickly took aspirin. The thing that really got me scared though, was that HE suggested that I might have to call for an ambulance. For a person with normal medical needs this would be a no-brainer. But that's where it got complicated. 

I remember a time when going to an emergency room was like date night. We would go to the best hospitals in Chicago, and yet, it always seemed like Michael knew more about the medicine of his own body than the attending physicians. The waxing and waning nature of mitochondrial damage would completely confuse doctors who needed concrete results. The fact that Michael, having dealt with this for so long, could actually talk and understand doctors using technical terms tested their own knowledge and conceit. There were many instances when he even had to explain that his medicine, L-glutathione, was a tripeptide, a chain of amino acids, and not some crazy drug with adverse side effects. Because of being failed so many times, we learned how to survive a hospital visit and not to just go and trust you will be seen and helped.

This was why we didn't rush to call an ambulance right away.

We started weighing options instead. How could Michael explain what was happening with his heart along with the rest of his 3 yrs of rare medical conditions to a completely new doctor? Can we trust that someone good will be working Saturday night on Labor Day weekend? How can we be sure nothing that they do for his heart attack won't aggravate his other symptoms? Soon the super intense pains started to go down- thank God for aspirin- leaving Michael with a different and scary, yet manageable, new sensation.

Lucky for him, this event stabilized enough to get him through the night. I would wake up just make sure he was still breathing. The next morning he checked himself into the ER where they ran blood labs and confirmed what he knew all along.

It is frightening to think you are on an uphill climb and then suddenly get hit with something so fatal that even if you do recover from the event you will still be set back years of struggle. 

It is a wake up call for us to stay diligent about every life choice Michael has to make now.

It is a testament to what makes up a man who despite mind-altering pain, will choose instead to lay there with his son and just keep singing until he knows his son is peacefully asleep. 

the strength of a father in a time of crisis- by Nicole

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 When I first became pregnant with our son, I'm pretty sure Michael blew a head gasket. Not for reasons like, he didn't feel stable enough or that he didn't think that I was the one with whom he'd love to have a family. But because of deep-rooted emotions, he was certain that he simply did not know how to be a good father. And yet, he refused to fail his son. I remember him going out of his way to keep me comfortable and at the same time being completely awkward when it came to Aedan. Every time his little baby cried in his arms or preferred me over him, I saw a look that I had never seen before in Michael. For a man that always succeeded, this devastated him and brought back all the painful memories that shook him to the core. In a very humbling way, I saw his weakness, open wounds, and fear.

          Sixteen months into his son's life- just as Aedan began really walking and interacting- Michael was given his first dose of Levaquin coupled with a steroid pack. A routine sleep apnea surgery followed soon after and then the prescription for Avelox. October 6, 2008 is the day none of us will forget. On that day, he started feeling numbness and tingling in his legs. For a new father who was finally feeling more at ease, this ripped the ground right out from underneath him.

          Still, I have never seen a man so determined to raise his son with such joy, peace and safety. Aedan never came with us to the emergency rooms. He didn't see the tears or feel the full impact of the stress. In those darkest moments when all Michael could do was sit in an armchair barely able to speak or move his arms, Michael went so far as to "hide out" in the back room because he was so adamant about not having Aedan see his daddy like that. 

          It was like a scene out of the movie "Life Is Beautiful". Out of all the darkness that was around us, we surrounded that boy with a stable, loving, and playful house. Now 4yrs old, Aedan remembers the wheelchair. We would give him rides around the house on daddy's lap. He knows about medicines and how daddy needs to rest sometimes. More importantly, he knows daddy has the best tickles, always knows the coolest music, and is brave and strong.

  
Michael always says he is giving his son front row seats to watch a good man live his life.

When it comes to being a father, I am proud to know that Aedan learns about bravery and strength and perseverance from this man who transcends suffering to live for something that pain cannot touch or take away- the loving eyes of his son

reflections from the darkness

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I am not Michael. I am not strong enough to be Michael. However, growing up in a family of 5 kids you learn to be loud...and observant. So I will be his voice when he is too weak to speak...or write. They say when you have found your soulmate you are of one mind. So I will let him talk through me. 

My name is Nicole Frantilla. I have been with Michael for over 10 years. We have a beautiful 4yr old son and a 65lb yellow Labrador lap dog.

And Michael... Michael suffers almost every adverse reaction from Levaquin and Avelox (toxic antibiotics given to him for a cough) listed on the black box warning. This has been going on for almost 3 years now. As far as we know, there is no recovery.

But Michael... Michael proves everyday how much suffering a body can take and yet his spirit makes him an unstoppable force of nature.

He is my inspiration and the reason why on the 1000th day from the start of this poisoning we promised each other to reach out to others and tell our story. After years of doctors, emergency rooms, pills, and cross-country trips we are able to speak out of hindsight about a story of courage, hypocrisy, tenacity, and pain.

This is a story I hope our son reads when he is older and is finally able to understand why daddy couldn't play or be with him all those times. But that when he did, it lifted his soul so much he fought even harder and loved even deeper.