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.

I have been thinking a lot lately about this blog and it’s purpose. I think it has many, but I started to realize this can/should be a place I just let it all out. Maybe some days I’ll post random memories of my journey. Or others I’ll post how I was that day, good or bad.

For the first 4-5 months, I kept logs describing as best I could how I felt and what was happening. While my mind was already experiencing brain fog and my thoughts were slower, I was still able to write somewhat. Around month 4, the Dr’s at the Mayo Clinic suggested I stop keeping logs as that wasn’t helpful they said. I believed them thinking I might just make myself crazy. So I stopped keeping daily logs and soon found myself worsening quickly.

Soon unable to understand the world around me, unable to produce a voice or keep my head up as my head was too heavy. I couldn’t swallow food, breathing became shallow and forced. Heart problems, vision problems… far too much to write.

Soon, my body was too heavy to move at all and I was stuck in a chair at the back of our house. For nearly 2 years. I wanted to cry out for help so badly, but I simply could not.

I have since tried hard to write about what was happening. But up until recently the cognitive issues had been too debilitating for me to have more than minimal function, so very little made sense to me. Good days have been few and far between. I did make a bunch of audio recordings on a handheld recorder. I haven’t listened to any yet, I hope I recorded in good detail as I don’t want to forget even a single day of what I’ve been through.

Since I became “floxed” and severely disabled, I have been almost obsessed with being positive for those around me. I didn’t and don’t want to be a downer. I keep a strong face despite the pain, heart/visual/mental and mobility issues and I try hard not to let it show. I don’t talk about this much and try to think about it even less. I want my family to live outside of the sadness and struggle of my every day life. I too wish to live outside the sadness and struggle.

While perhaps a theoretically unhealthy way to ‘cope’ on my part, that has had some amazingly powerful unforseen side effects. I have become stronger and yet more peaceful. I have become truly greatful for each little moment of life that my body allowed me to participate in – however small or brief. I am told that I’m an unusually positive and funny person to be around. So while this has taken everything else, it has not taken my spirit. Yet.

I hope to write a great deal more about that aspect soon as I want to share the other side of this journey, the good side, with all who care to listen.

But I also need to start letting this out. Even if it makes sense to no one but myself. I don’t talk about the details of this much. Not even with Nikki. I mean, she is well aware of all that is going on. But I just don’t see the purpose in continually reminding those around me how much this really sucks to be in this body. EVERY second of EVERY day is an excruciatingly painful struggle for me, in every concievable way.

And today it hit me. Just write… it doesn’t have to make total sense. Just write.

So, I ask you. How much can a Man take before his will and spirit are broken?

Those of you reading who have been poisoned by Levaquin (or Avelox, Cipro, etc) will understand this all too well. Getting Medical help has been all but impossible. I have seen countless Dr’s who completely dismissed what I was trying to tell them, and even more who just wanted me out of their office as fast as possible. That all took physical and mental energy that I couldn’t spare and would cost me dearly in added pain and weakness for weeks or months afterward. Not to mention the added mental stress of trying to figure out how to explain ANY of this to a Dr in the 15 mins you’re given before they nudge you out.

Sadly, I have mostly given up on Doctors. But, I didn’t give up on my survival. It simply isn’t an option.

Not able to find a Dr (or afford to) to help, or to even do IV’s for me early on?
Fine. I’ll do it myself.

But wait, I have no clue how to do it and no one to show me? Only one way to figure it out. Keep sticking until you hit a vein.

Terrified of needles? Blurry and doubled vision? Have tremors and shaky hands?
Don’t matter. Do it anyway. Be Aedan’s hero.

I cannot afford proper Medical treatment for what Levaquin has done to me. I cannot afford to eat properly as, thanks to Levaquin, my food costs have almost trippled. I must eat only organic and/or natural foods because that sh*t is in OUR FOOD SUPPLY too. In all of the Chicken and Beef you find in every supermarket. In fact, an estimated 70% of the sales of Levaquin and those in it’s class (Fluoroquinolones) is to… wait for it… THE AGRICULTURAL INDUSTRY!

So I must eat only Organic Grass-fed Beef, natural pasture Chickens, etc. to avoid re-poinsoning myself. Further, I can only eat organic produce as well. The pesticides and chemicals used in regular produce is more than my body can process.

When was the last time you checked the price of food that isn’t synthetic, tampered with, genetically modified or chemically altered for profit??  Not cheap. But no use getting angry or upset right? Right. I just eat what I can. Keep my chin up.

Statute of Limitations ran out before being able to find a Firm willing fight Golliath? Suck it up Michael. No use getting upset over something I cannot control. I took it on the chin as I have every second of every day of these last four and a half years.

I could go on and on. This little bit doesn’t really cover even a little of what’s happened. Point is, I took it all in stride as best as possible. Which has been an amazingly enlightening experience for which I am greatful.  BUT…

MetLife, my disability insurance company, had cancelled and stopped paying many months ago. Saying essentially that they didn’t feel I’m disabled. So naturally we filed an appeal.

Today, we got the response back. DENIED.

Citing the vague-ness of all the Doctors I had seen since day one and the subjective nature of my complaints, Doctors HIRED BY METLIFE determined I “do not meet their definition of disabled”. Despite having a letter stating my substantial disability and Mitochondrial dysfunction from one of the best Neurologists in the world… Despite all crystal clear evidence, they denied our appeal. Because they can.

Of the many lessons I’ve learned during this journey, one disturbing lesson is that clearly far too many in this world will not do the right thing unless forced to by law. While we DO have laws to “protect” us as citizens and consumers, sadly, the truth is those laws have no bite for extremely wealthy corporations. They are above the law.

And just like I have been, those hurt by these companies are simply left for dead.

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The above is from 28 September 2012. I didn’t want to post this as it is becuase the last half didn’t make sense to me as written and seemed too negative. But it is my truth. And my truth must be told.

We have been trying to keep a roof over our heads and as much food on the table as we can afford. I am only taking a small portion of the supplements I should be taking and obviously cannot afford medical care. We are trying hard to make it on Social Security Disability and hopefully soon we’ll have food stamps.

But considering my Injectables (Glutathione, B12, HCG) are near $650 per month and my bare-bones supplement routine is upwards of $300 per month. That’s almost $1000 per month to survive what an incredibly weatlhy corporation did to me. I also desperately need Hyperbaric Oxygen treatment and Stem Cell therapy, both of which would make a massive difference leading to substantial improvement.

I keep pointing out the weatlh of the Big Pharma Corporation (JOHNSON & JOHNSON who owns Ortho-McNeil) that did this to me becuase they can more than afford to make this right. I can’t even afford FOOD. But again, doing the ‘right thing’ is clearly something that’s been lost along the way.

I just cannot process how people can sleep at night knowing what they’ve done to so many victims of their greed.

I for one would have no heartburn about bankrupting my company, even driving myself bankrupt to make it right for every single person I had hurt. Without a second thought. I would then spend the rest of my life continuing to support those who suffered.

I will teach my Son those same values. Even though clearly uncommon now, right is right. Truth is truth. And no matter how lonely the road may be, always hold true to your belief in doing the right thing. Above all else, above self, at any cost.

At any rate, thank you for reading. I just had to get this out.

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.

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.

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.

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.