New York Times Article

Only after decades of killing, maiming, and complete destruction of innocent lives (assuming they SURVIVE these drugs) only now are we really getting some news coverage. Face it, we generally have NO clue what Doctors are prescribing. By that I mean that we rarely ever know what these drugs truly do and what their TRUE side-effects are. IF that information is even available, it’s buried in the package insert that you’ll never see.

What did we do to protect ourselves before the information age? Before being able to Google these things, we the people had NO way of knowing the side-effects of the drugs being prescribed.

WAKE UP everyone. Doctors often have absolutely NO clue what these Frankenstein drugs they regularly prescribe do to our bodies. Take it from me. I have so far barely survived modern medicine.

This is a link to original article by the NEW YORK TIMES. Below is the entire article.

http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?emc=eta1

It’s about time the mainstream media shed light on the devastation these drugs are causing.

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Antibiotics are important drugs, often restoring health and even saving lives. But like all drugs, they can have unwanted and serious side effects, some of which may not become apparent until many thousands of patients have been treated.

Such is the case with an important class of antibiotics known as fluoroquinolones. The best known are Cipro (ciprofloxacin), Levaquin (levofloxacin) and Avelox (moxifloxacin). In 2010, Levaquin was the best-selling antibiotic in the United States.

But by last year it was also the subject of more than 2,000 lawsuits from patients who had suffered severe reactions after taking it.

Part of the problem is that fluoroquinolones are often inappropriately prescribed. Instead of being reserved for use against serious, perhaps life-threatening bacterial infections like hospital-acquired pneumonia, these antibiotics are frequently prescribed for sinusitis, bronchitis, earaches and other ailments that may resolve on their own or can be treated with less potent drugs or nondrug remedies — or are caused by viruses, which are not susceptible to antibiotics.

In an interview, Mahyar Etminan, a pharmacological epidemiologist at the University of British Columbia, said the drugs were overused “by lazy doctors who are trying to kill a fly with an automatic weapon.”

Dr. Etminan directed a study published in April in The Journal of the American Medical Association showing that the risk of suffering a potentially blinding retinal detachment was nearly fivefold higher among current users of fluoroquinolones, compared with nonusers. In another study submitted for publication, he documented a significantly increased risk of acute kidney failure among users of these drugs.

The conditions Dr. Etminan has studied are relatively easy to research because they result in hospitalizations with diagnoses that are computerized and tracked in databases. Far more challenging to study are the array of diffuse, confusing symptoms suffered by fluoroquinolone users like Lloyd Balch, a 33-year-old Manhattan resident and Web site manager for City College of New York.

In an interview, Mr. Balch said he was healthy until April 20, when a fever and cough prompted him to see a doctor. Nothing was heard through a stethoscope, but a chest X-ray indicated a mild case of pneumonia, and he was given Levaquin. Although he had heard of problems with Levaquin and asked the doctor if he might take a different antibiotic, he was told Levaquin was the drug he needed.

After just one dose, he developed widespread pain and weakness. He called to report this reaction, but was told to take the next dose. But the next pill, he said, “eviscerated” him, causing pain in all his joints and vision problems.

Debilitating Side Effects

In addition to being unable to walk uphill, climb stairs or see clearly, his symptoms included dry eyes, mouth and skin; ringing in his ears; delayed urination; uncontrollable shaking; burning pain in his eyes and feet; occasional tingling in his hands and feet; heart palpitations; and muscle spasms in his back and around his eyes. Though Mr. Balch’s reaction is unusual, doctors who have studied the side effects of fluoroquinolones say others have suffered similar symptoms.

Three and a half months after he took that second pill, these symptoms persist, and none of the many doctors of different specialties he has consulted has been able to help. Mr. Balch is now working with a physical therapist, but in a phone consultation with Dr. David Flockhart, an expert in fluoroquinolone side effects at the Indiana University School of Medicine, he was told it could take a year for his symptoms to resolve, if they ever do disappear completely.

Guidelines by the American Thoracic Society state that fluoroquinolones should not be used as a first-line treatment for community-acquired pneumonia; it recommends that doxycycline or a macrolide be tried first. Mr. Balch didn’t know this, or he might have fought harder to get a different antibiotic.
Adverse reactions to fluoroquinolones may occur almost anywhere in the body.

In addition to occasional unwanted effects on the musculoskeletal, visual and renal systems, the drugs in rare cases can seriously injure the central nervous system (causing “brain fog,” depression, hallucinations and psychotic reactions), the heart, liver, skin (painful, disfiguring rashes and phototoxicity), the gastrointestinal system (nausea and diarrhea), hearing and blood sugar metabolism.

The rising use of these potent drugs has also been blamed for increases in two very serious, hard-to-treat infections: antibiotic-resistant Staphylococcus aureus (known as MRSA) and severe diarrhea caused by Clostridium difficile. One study found that fluoroquinolones were responsible for 55 percent of C. difficile infections at one hospital in Quebec.

Fluoroquinolones carry a “black box” warning mandated by the Food and Drug Administration that tells doctors of the link to tendinitis and tendon rupture and, more recently, about the drugs’ ability to block neuromuscular activity. But consumers don’t see these highlighted alerts, and patients are rarely informed of the risks by prescribing doctors. Mr. Balch said he was never told about the black-box warnings.

Lack of Long-Term Studies
No one knows how often serious adverse reactions occur. The F.D.A.’s reporting system for adverse effects is believed to capture only about 10 percent of them. Complicating the problem is that, unlike retinal detachments that were linked only to current or very recent use of a fluoroquinolone, the drugs’ adverse effects on other systems can show up weeks or months after the treatment ends; in such cases, patients’ symptoms may never be associated with prior fluoroquinolone therapy.

No long-term studies have been done among former users of these antibiotics. Fibromyalgia-like symptoms have been associated with fluoroquinolones, and some experts suggest that some cases of fibromyalgia may result from treatment with a fluoroquinolone.

A half-dozen fluoroquinolones have been taken off the market because of unjustifiable risks of adverse effects. Those that remain are undeniably important drugs, when used appropriately. But doctors at the Centers for Disease Control and Prevention have expressed concern that too often fluoroquinolones are prescribed unnecessarily as a “one size fits all” remedy without considering their suitability for different patients.

Experts caution against giving these drugs to certain patients who face higher than average risks of bad reactions — children under age 18, adults over 60, and pregnant and nursing women — unless there is no effective alternative. The risk of adverse effects is also higher among people with liver disease and those taking corticosteroids or nonsteroidal anti-inflammatory drugs.

When an antibiotic is prescribed, it is wise to ask what the drug is and whether it is necessary, what side effects to be alert for, whether there are effective alternatives, when to expect the diagnosed condition to resolve, and when to call if something unexpected happens or recovery seems delayed.

At the same time, when an antibiotic is appropriately prescribed, it is extremely important to take the full prescription as directed and not to stop treatment when the patient simply begins to feel better.

Coming out of the woodwork

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


“…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…

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 23rd 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

Today is a typical day

Today is a typical day.

Nikki just took our little boy to the playground. And as always I am at home, too weak to go. I am always weak. Although I do get minor, short-lived bits of increased energy and ability, I am still weak and slow. When I over-do it by pushing my body to move or the more I try to do, the worse it gets. I will hit the wall sooner and with much more intensity. The pain I cause myself from forcing myself to move doesn’t go away with rest. It will last weeks or months, lowering my baseline. Two weeks ago I ‘over-did’ it by simply trying to mop the floor. That caused me to hit the wall hard.

I woke up this morning in pain, my legs are more intensely painful than the rest of my body. But I feel pain/discomfort all over my body. Even have sensations of numbness and slight tingles in my face. My arms are heavy, legs heavy. Mentally I feel like I’m in a daze of some sort, substantial brain fog. It varies in intensity and as the day goes on, the pain and sensations escalate and other issues like my eye sight and mental functions deteriorate.

At some point today I will hit the wall as I always do. When I hit the wall the pain and sensations become dramatically worse and I slow down as a whole. My eyes get tired easily, causing the blurred and doubled vision to become notably worse. My mind gets softer, I become even more easily confused and disoriented.  I have a much harder time walking and my movements become much more difficult and very slow.

As I write this, I feel that pain shooting down the back of both legs (I’m in a chair with 2 cushions) plus the flesh all over my body feels numb like it’s asleep. Face and eyes feel it too. Flesh is very noticeably tight, getting tighter. The tightening of my abs, chest and arms make me feel like I’m being pulled inward towards a fetal position.  My eyes feel numb, vision bouncing and doubling a little more. Burning painful sensation all over, like I have acid for blood. Intensely painful cramped muscles in legs and outer glutes. Same with shoulders, chest etc, but at a lower intensity than my lower body. My face too.

 

 

 

 

 

… he just kept singing…

          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. 

Recorded scrap of paper – Friday 2 September 2011.

 

I’m on autopilot of sorts and  uh, I guess you could say, you know, with the detachment from the reality around me in the sense that everything’s like a movie or something. And while I can now control my limbs and talk and function, to varying degrees, all of which is minimal at best, but nonetheless very degrees of completely nonfunctional, nonspeaking, nonmoving, to looking good on the outside for a few minutes at a time. But being on autopilot, by that I mean, I do a lot of things that I don’t know how I do them. For example – well because my vision is so undoubtedly and obviously uh, proven, uh, but my vision is so poor at times. And I am trying to concentrate as best I can on how I do things and why maybe. At least try my best to make a mental note and pray that I’ll somehow remember it – by some minor miracle.  But at any rate, um, so I’m starting to notice things and so I think its real helpful to record into this recorder.

But I think I may have figured out a way to start to summarize some of it and it began with me being on Auto-Pilot, in the mental sense. I also have severe cognitive difficulties which I believe is a separate issue. Because I’m confused, my thoughts are scattered, wholly disorganized, completely random and rare. Although, with Glutathione daily and also with Adderall for some energy and a little bit more focus, um,  I’m able to start to articulate some of this a little bit better as that streak of glutathione successfully, which is and has been really difficult to achieve… but if I can continue a string of Glutathione back to back everyday, and Adderall, um, a little more movement is possible and so is a little more thought.  Even with the Glutathione alone, if I remember right, I might have made note that it seems that as time goes on that I start to think a little bit better at some point. Although I think it plateaued, but um…

I think I can finally start to summarize my days, uh, somewhat, and it’s that my function just in general, overall – visual, audio, mental, of course physical moving it’s kept to a very very bare minimum and I save my movement for stuff that’s important. Like going and uh, maybe tickling the boy a little bit or cuddling on him or something. For the most part that’s all I’m capable of doing generally. I’ve never been able to play with his T-Ball set – none of that kind of stuff. But its kept to a minimum.  And so in the morning I’ll go and sit on the couch in the Garage, because it’s reasonably warm out, sometimes very warm out. And I just rest. I just simply exist. Although I’m always in a very peaceful state whenever I become very detached or very spacey or when my body starts shutting down. I’m always in a very peaceful state, I’m happy and I’m grateful for everything I have. I know that this sucks, but I feel as though I’ve learned to deal with all of it very well and search for the beauty of life – which I think I’ve done as best I can. I’m in a peaceful state, but I just simply exist. I’ll stare at the trees for an hour or two or three, or however many. Or I’ll stare at the sky. I try to move a little bit, and even if that’s pacing, or standing up looking like I’m doing something… um, but really just resting my eyes and my brain as well.

If my body is capable of doing anything, at all, I try to push it to its absolute maximum. Whatever that might be. However little, or however much. I push my body to the maximum, but I try my best to rest my eyes a bit and my mind – I found that when my body is able to do something for 5, or 10 minutes and I was sitting on a nice stool with the car in the garage, just working on cleaning some spots on the body or something very minimal. Only for a couple minutes, and then I would have to sit somewhere else. Or do something different, or even just stop entirely and stay sitting wherever I was. Just kind of space out and rest myself. That’s a good day. A very good day.

 On the not so good days, I stay on that couch and I don’t move. Or I move very very little. And a lot of times I’ll keep the garage door closed if I’m doing that because I get kind of self conscious, you know. It kinda looks weird you know. Here’s a guy that looks reasonably normal on the outside just sitting there. That’s kind of weird, so… But even on the bad days, so long as I haven’t been without Glutathione for too long, even though I can’t move or its very hard for me to move very much or sustained or whatnot. If I… It seems that I’m saving my energy, whatever I might have and it’s usually not very much, for the last half hour or 45 minutes of the day before Aedan goes to bed at about 6 o’clock. It’s like clockwork with the kid. So it’s perfect because I hit the wall at about that time, at the latest. But that last half hour, 45 mins… man, I just swing for the fences. Anything I can do, short of blacking out – you know because I’ve kinda learned to walk that line very delicately …  I just go for it. And I love life. In those moments. I just kind of exist all day peacefully just saving up for those moments. But anyway…

Maybe every 45 minutes or an hour, maybe a little more so sometimes I suppose, I will go inside from the garage from just sitting on the couch or slowly and gently pacing back and forth – I mean very slowly, or anything. Then I’ll go inside and maybe give the boy a kiss on his head or something. Or I’ll sit with him for a couple minutes, or as long as I possibly can stand to. Because the pain becomes very intense when I stop. Oddly. So when I can move it helps some of the pain, sometimes. And it’s only certain types of pain it helps. Doesn’t help all of the different types because there are multiple types at once. But after a couple minutes with Aedan or however long I can sit – and again, a lot of times its very difficult for me to sit still. In the garage I have the freedom to move and not look normal about it. Just sporadically get up off the couch and walk to the table which is 2 ft away in the garage. Or anything. I can move very haphazardly and randomly which helps sometimes. But then of course it zaps whatever physical energy I had. But sometimes it helps keep some of the pains from getting too bad – some of them. But anyway, my eyes get real tired. My brain gets real tired when thinking. And again, it seems like that’s a completely separate issue. The cognitive problems  vs how disassociated I feel with the world, disconnected. I don’t remember anything about myself in a lot of ways, I don’t recognize myself as me… it’s really difficult to explain. I can’t, I haven’t watched movies in years. Since I got sick. It’s just something my brain can’t do. If I can watch anything at all it’s things like American Restoration or something. It’s a half hour show where I can just space out, there’s no real storyline that I have to pay attention to like anything else. It’s just watching pretty images of some guy restoring a random 1920’s firehouse or something weird. Or American Pickers for the same reason. But generally my eyes just blur out and I’m completely spaced just staring at the TV. Every once in a while checking in when something either catches my interest and I seem to wake up just a tad, or if I’m not capable of even that some days or at some points, then I just kind of blur out and stare at things. And try my best not to look weird when doing it. And uh, it’s kind of hard. Kind of hard to describe is what I meant.

It’s hard to fight through a lot of this because it seems that if I can scream loud enough at the movie screen, or somehow get this Auto Pilot to do something, like try to feed myself – and it’s rare that I’ll remember or realize I’m hungry. I lose track of time. When I’m in that blanked out state, which is more often than not, then the concept of organizing some kind of food setup for myself, finding the food, what do we have, what ingredients can I find… or, you know, the normal stuff. Open the fridge, what do we have… visually I’m almost immediately overwhelmed with the fridge, and I get – I don’t know if confused is the right word but, um, all of this again with a completely neutral reaction. I’m not having any emotional reaction. I’m not freaking out, I’m not happy or sad. I’m just at absolute peace somehow. But things just overwhelm my mind in the sense that it can’t seem to process it. Again, like looking at the fridge, it just confuses my brain somehow. But if I can get through that, which is difficult, and trying to fight through that sometimes it causes a physical pain in my head – in my brain – it’s amazingly difficult to describe. It’s almost tough for me to believe, but it’s true. I even noted that a long time ago.

But then, I don’t have the energy to do any of it at some point. The physical energy – my body starts just shutting down. All of the sudden it’s like a weak battery in a flashlight. You know, when you first turn it on you might get a little something out of it for a couple of seconds. And it seems reasonably bright. Nowhere near full power, but the bulb is bright enough. And then all of the sudden, once it starts to dim just a little, all of the sudden at some point it just starts going down down down down bang. Like it just starts to slide down a little, getting dimmer and dimmer, then it hits this slope and bang. Gone. The light bulb goes out.

That’s kind of what it’s like in my body. As if I can get a short burst of energy or something, like turning that flashlight on after you let it sit a while. The bulb lights up, and then I might try to do something. Like get off the couch in the garage and try to do something that would be productive, or that might entertain my mind. Like making a little jump for Aedan for his Monster trucks out of wood or something. I have varying degrees of small amounts of energy. And if I can get up and do something – so for example even going to the kitchen to try and find something to eat, uh, do everything I can, fight as hard as I can to feed myself. Then I get confused about it. And again, that’s IF I can remember, IF I can get close enough to reality and/or scream loud enough at that movie screen for that character to do something, then my mind is actually confused by the process. And if I can somehow get through THAT, I end up with very little, if any, physical energy to actually do it. And so I just bloop –  that’s it. I mean again, I don’t freak out about it. I’m in a perfectly peaceful state. I mean, it is what it is. Freaking out is a luxury I don’t fucking have. So I don’t. I mean, what’s the point? It’s not going to change anything, I’m gonna be like this. And freaking out is going to rob Aedan of a Father he can look back on with any goodness. You know, and it’s going to take away a lot of his world too, just by the negativity. NO. You know, it is what it is.

I’m not even that connected to reality in real-time when those things are happening to say what I just said, or to think it. It’s just the way it is. I’m perfectly cool about it. I don’t even process it, it’s just like POOF – a fuse gets blown and I’m just totally spaced out. And that’s it. Then it’s just like I’m some Zombie robot or something. I really can’t do much about it, so I just go back to wherever I was sitting. Or just go sit on the couch in the living room if it’s later at night and Nikki’s working. And I’ll just sit. Because that’s all I can really do for the most part. And I just, you know, exist. Happily and peacefully, but I exist.

I kind of went off course, but I’m just trying to let it all out as best I can. So I kind of lost my original point, but hopefully I’ll get something useful out of this later.

 

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

          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

Cliff notes to a Life

Hello.

I am very ill and am fighting for my life. On 06 October 2008, I woke up unable to feel my legs. That was the best day I’ve had since. It went downhill. Fast.
As I write this, I am in brutal and unrelenting pain. In every single area of my body. Even my face – my eyeballs too. I have been in intense pain every single second since it began. Ranging from a 5/10 to 10/10, usually closer to the latter – every second. I am largely unable to do anything physically as I am too weak. Mentally, writing this is taking extraordinary effort (read below).

Our family’s home was lost to foreclosure. Car was repossessed. Were homeless and separated at one point. COBRA insurance expired. Cannot afford the medications I need for even minimal function, the Dr visits, the Hyperbaric Oxygen treatments I require, etc etc.

BUT… I fight. With the heart of a giant, I fought for my life. Every second of these last 1,021 days. It nearly killed me, but I refuse.  God himself will have to come get me. I will never, ever leave my Son.  Those of you who’ve known me for decades understand my conviction and understand the fury with which I’d fight for him. Aedan gives me the strength and courage I needed to save my own life, and the will to fight to get out of bed each day.

I am proud of the Man I have shown to be. And despite it all, I live a beautiful life.
________________________________________________________________________________________________________________________

I was prescribed the most prescribed Anti-Biotic, Levaquin, for a COUGH. Soon, a Nuclear Bomb went off in my body. Three days after I lost sensation in my legs, I went to the ER. Soon transferred to Rush University Medical Center for ‘elevated care’. In the Neurology wing’s ICU, I was told it was form of Peripheral Nerve Damage known as Guillian  Barre. That I would soon be paralyzed from the neck down & on life support. Days later, a new Dr. came in and discharged me saying I was having a panic attack. Really? I can hardly use my legs, numb/tingly…
I soon found myself outside the Medical System as no Dr I saw since couldn’t figure it out. 8 mos into it, I went to Mayo Clinic in Rochester. They found the Autonomic Nervous System damage right away. They all but refused to believe all the other issues I was listing were possibly happening. Even after their Psychologists examined me and told them it wasn’t in my head.
I fought, with a severely crippled mind to be heard, but was without Medical help entirely through some very scary and nearly fatal nights. But I never gave up.  It was only 6 weeks ago that the worst of it all was finally  diagnosed. This was a big deal to me to finally be able establish what had happened to me. I can now understand enough to be able to relay some of what’s happening to me.

Cliff Notes of what has happened to me:

Levaquin punctured a hole in my blood brain barrier (noted on 09 Oct 2008) and caused systemic damage. Including but not at all a complete list:
·         Brain Damage
·         Mitochondrial Damage (Toxic) – Mitochondria is  responsible for providing energy to every cell in your body. When damaged, it’s like you’re a battery that discharges too fast and/or does not charge. Your Brain has by far the largest demand on Mitochondria
·         Autonomic Nervous System damage – This is the ‘Traffic Cop’ of your body. It can manifest symptoms and/or life threatening disfunctions literally anywhere in the body.
·         Neuro-Psychological disturbances. De-Personalization and De-Realization. Substantial Cognitive issues.
·         Irregular Heartbeat, palpitations.
·         Muscle wasting (substantial)
·         Musculoskeletal damage, connective tissue damage
·         Visual Disturbances including Double and Blurry vision. Each eye blurs independent of each other and change constantly, at different rates.
·         Skin damage.
·         Circulation issues
·         Vast Neuro-Muscular issues

I have issues system wide. Including my GI, Cardiac/Circulatory, Renal, Dermatologic, Visual, Hearing, Respiratory, even Endocrine systems. All of these issues and many many more are all happening at the same time. Sadly, this is NOT as rare as we are led to believe.

I am easily confused and disoriented. I am extremely forgetful, in fact a couple days ago I lost count several times when trying to count out 4 cups of water. I am mostly unable to prepare meals for myself. I absolutely cannot multi-task at all, and can rarely complete a single task. Still to this day, the world is happening way too fast for me to process. I have difficulty thinking of what words to use and often slur my words when I do.
Although I get rare and short lived bits of strength and energy, physically I am very weak. I rarely am strong enough to leave the house with my family and have missed a great deal of Aedan’s first few years. I have watched my Son play and experience the world through pictures.  Without energy at the cellular level and the great loss of muscle, I am fragile at times. It goes far beyond tired, unlike anything any of us have experienced before.  At times I have been too weak to raise the fork to my mouth.

It was only until recently that doctors were able to conclude damage to my actual mitochondria- the parts of all cells that makes all energy for life Without them cells  die. My Mitochondrial DNA (MtDNA) is believed to have been damaged as well. MY DNA.

When the Mitochondria dysfunction becomes bad enough, besides physical weakness, one of the things that happen is my brain functions slow tremendously and I am quite often in what seems like a catatonic state. I have wanted so desperately to be able to communicate, reach out for help, talk to those who care for me. For almost 3 years. But I have been unable to even answer the phone most of the time.  Writing this has taken me many months and I intended to post something (anything) on my 1,000th  day, 3 July 2011.  I struggle for words and communication is extremely difficult for me.

This is a very condensed high level summary of events and how I am as of this writing. I have been far worse. The actual details and chain of events will leave you disgusted with the ‘Medical’ system in this country.

I have been through unfathomable torture, and to this day am severely disabled and in unrelenting, excruciating pain literally every single second.  BUT…

If I didn’t tell you, you wouldn’t know by looking at me. When I can stand, I stand tall and I stand proud. I don’t let the pain show, I don’t want Aedan to see me that way.  I have learned to handle pain, not letting it steal even one precious second I get. In the process learned true peace. I am truly grateful for every second of life I get, no matter how hard it is to use my body or mind. I soak up each moment I get with Aedan and truly live each one. I appreciate the beauty around me. The sounds of the birds, the sky. The smell of the air, the concert that the rustling leaves play when the wind blows.  Despite it all, I live a beautiful life.

Please, do not feel sorry for me. I don’t. Amazingly, I have not once felt sorry for myself. Not for a single second of the 86,400,000 seconds as of my 1000 day. I am a demonstration of what the human spirit is capable of.  My intention in writing is to finally be able to try my best  to simply communicate what has happened to me to any and all who care about me. I have fought this alone, no Doctor I could call. No ER that could help. I so badly wanted to reach out for the help I so desperately still need. I just simply could not until now.

I hope to be able to write more soon. But until then, know that I will never, ever give up.

Love and Peace to you all. Michael

reflections from the darkness


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.