Recorded scrap of paper – 25 October 2013

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25 October 2013 – 8:05PM

I’m standing here in the Garage like I always try to do – well not always but often. Very very often try to do. I’m standing because I try to stand as much as I can. That’s my ‘Defiance’. And uh, I’m doing what I frequently do and that’s either replaying conversations in my head when I was desperately trying to ask for help  from somebody – unsuccessfully – and uh, as Nikki pointed out today… uh, I didn’t realize. I’m having a hard time figuring out my mental, uh, situation as well. Nikki pointed out that when I lead the conversation, I have a much better time. Which is why people often, understandably, misread my abilities. When they lead the conversation, like happened last night, I get so… I get very lost and it’s like – like when I was a kid. In the Indiana Sand Dunes, running down the hill. There’d come a point where such a steep Dune and such a steep hill – at least to a kid – uh, you’re running with giant leaps and steps just trying not to fall, tumbling down end over end. And that’s precisely what that point of ‘Terminal Velocity’ – that you reach – is precisely what happens in my head when I start to get lost. And that’s how my head feels. I’m just rushing to keep up.

But I’ve practiced keeping a straight face because Doctors would otherwise, completely dismiss – even quicker anyway – dismiss what I’m desperately trying to tell them unsuccessfully. Explain through the mental problems that I have… besides it [my list of symptoms] just being a giant scope in the first place to figure out on your own. And uh, I’m not depressed about the situation that I’m in. I’m just at the point where I’m waking up mentally enough to see the reality of where I am. And I realize I’m just not getting the help I need. Simply not getting the help I need in any way, shape or form. Well, that’s not entirely true. I’m just not getting the basic help I need. And I’m fighting so hard, in every conceivable way that I’m now coming to the realization that maybe no one will ever understand how hard I fight every day. And how hard I fight through a mental fog, too. Keeping a good attitude and trying hard to make sense of my thoughts, on giant white boards behind me here in the garage, that I had to fight through a mental fog to ask a friend to help me with. Then fight through a mental fog to try and describe what I was to say and do. Everything I’ve done is a huge, HUGE effort on my part and uh…

I’m going to take a break.

The effects of stress and anger

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From my Facebook post – 6 September 2013

Yesterday was a very rough day, some people’s souls are just so ugly.

As you know, I rarely get to leave the house. These last 10 months or so have been rough as I’ve experienced some fairly big setbacks, but I’ll get to that another time. 

Yesterday, Nikki had a root canal and had 2 wisdom teeth pulled. She was a mess, and it was time to pick Aedan up from school. There was no other option, so I drove her to the school. Besides the physical challenges I face daily, I would have been mentally unable to get through that on my own, it’s too much for me to process. The world still happens too fast and my mind and eyes both become quickly confused and overwhelmed. Just like many of you are experiencing.

I parked in a Handicapped space and made it about 50 yards to the door Aedan comes out of. For the last few days, the light tremors had come back. I was already shaking a bit. I made it back to the car, clearly having a difficult time. This was NOT one of the many times this might appear invisible to others. Once I got back to the car, there was an older woman walking around my car, clearly agitated. She asked who’s car it was. I responded that it was mine and I started to try to get in.

She stood in my way and demanded to know if I had a Handicap sticker/placard. I said no. I have permanent Handicap plates. Two of them in fact, front and back. I expected that to be the end of it. But apparently ugliness knows no bounds.

Instead of walking away after seeing my plates, this woman actually had the audacity to block me from getting into the car and proceeded to tell me how I took the spot of a little girl in a wheelchair and how that since I decided to park there, they had to wheel her further. She went on and on… I was stunned. 

In front of me was this woman who was hell-bent on badgering a clearly and severely handicapped man (with PERMANENT handicap plates) for parking in a Handicap spot.

First, my brain was too confused to respond. My brain knew what it wanted to say, but once again, I couldn’t speak. That in and of itself is a hugely frustrating part of this sickness. But worse still, is that instantly all my electrical pain, shakes, confusion, etc all became dramatically worse. I immediately found myself in an electrical storm of intense, shaky pain. This is how my body responds to even minor stressors now. I learned about stress/anger and it’s horrific effects within the first 6 weeks of becoming “floxed”. Now 5 years later, it still has the same effects. 

I wasn’t then and still am not too upset about what happened. I wasn’t even that upset at the time, just more in shock I suppose. But even minor stressors will trigger an instant and massive increase in all types of pain, mental/visual and mobility issues. Almost 24hrs later and I’m still shaking and trying to cope with the substantially increased difficulties and pain. Thankfully I’ve learned how to control even small amounts of anger most of the time. If I did allow myself to get angry or more upset than I had been, I would be in a far bigger physical nightmare than I am at the moment. 

This is less about that woman and more about what I’m left to deal with in the aftermath. She struck a chord though in that like the rest of you, I have fought to be believed since day 1. So to have yet another ignorant person insinuate that I’m fine struck a nerve I’m sure. Like most of you, having Doctors be entirely unwilling to believe that something this horrific can possibly happen has taken a toll. And I’m sure subconsciously that bothers me more than I realize. But the black and white of it is here I am, almost 24hrs after one person made brief but insensitive comments, I am paying dearly in tortuous pain and a frightening increase in symptom intensity. For no reason. 

I remember this, this is what I’d feel after every single Doctors appointment. This is one reason I had to give up on Doctors. I could no longer afford the intense increase in symptoms and difficulties after Doctors arrogantly dismiss all that we try to tell them. 

I’m not sure this makes sense or that there was a clear point. I don’t want this to be my first post in 3+ months, but I have to get this off my chest. This is how my life has become, and how easy it is to get physically hurt now. I think most of you would understand or have similar experiences. Thank you for reading, and I hope I’ll be able to post more soon. Until then, thank you all for the kind words. 

Love for you all.
Michael
******************************

Hope.

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Last night while on Facebook, I had met a woman who was trying to support the love of her life, Jeff,  through a severe reaction to Levaquin. He is now bedridden as I was, and seeing his picture somehow brought back a lot of the pain and fear that live in shadows of memories from my nightmare.

See the thing is, I didn’t have help. For those first 18 mos or so where I was bedridden, I had no idea what was happening to me. I didn’t have a Doctor of any type who believed me, and my mind was so horribly affected that I couldn’t explain what was happening to me. To anyone – I was too confused. I couldn’t move, I couldn’t use my mind to help myself. And worse still, I lost my ability to even produce a voice. So there was a time I was completely trapped, I was unable to move, think or speak. It was like being in a coma while awake. I remember the terror and I will never, ever forget the pain.

But I was a new Father, I could not fail my Son. Every day I tried to stand. There wasn’t a single day that I didn’t fight to walk. Even if all I could do was move my wrist or shoulder. Didn’t matter, I fought back. All I wanted to do was make it to the other side of the house where he was. I could hear him playing all day. But most days, I couldn’t move my limbs. Only my wrists. But I fought. And you will too.

The point is to pay no mind to how much it hurts or what you can’t do. Fight back. I would fall, I would often black out. But I didn’t care. I fought from a place inside I never knew existed. You’re alive today. You can kiss your kids, you can smell the air and you can hear the wind. I know it sounds crazy, but that is where life is. Live in those moments you do get. No matter how brief. Those will be the memories that will carry you through your darkest times.

My mental abilities are continuing to slowly improve, I can finally start to share my story. I’d like to hear from you as well. Please feel free to use the Contact Me page at the top and certainly please feel free to leave comments. It’d be nice for me to know I’ve reached those who needed it.

Expect to see many more posts and videos. But until then, I leave you with Hope.

The beginning: Months 0~3

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The Beginning: Months 0-3

My old life:

I was a good man, and I was working very hard to become a great father and provide for my new family. We lived in a house that we loved and that I was trying to rehab.

I was a Senior Network Engineer with a great and a very large Non-Profit. I absolutely loved working there, it was a very relaxed atmosphere compared to the hectic pace of the client sites I was used to as a Consultant for so many years. They were all great people to work with and were so good to me.

I had a good Career. I was working out nearly every day, I was eating a clean and very healthy diet. I was on track to provide a secure life for my family.

Even though I was very fit and healthy, I was having a very difficult time getting quality sleep. I had learned that I had Sleep Apnea a few years prior, but now that I was a family man I had to do more for my health than just toughen my way through it.  In September of 2008, I had scheduled a minor surgery to help correct the Sleep Apnea. A few days before surgery, I developed a chest cold and had a slight cough. I would have thought nothing of it, being a common cold and all. But I didn’t want to just show up on the day of surgery sick only to find that for some reason they’d have to cancel surgery. I called the surgeons office on 15 September 2008 to let them know and ask if it would be an issue. They said no, but ‘just in case, I’ll call in a prescription of antibiotics for you to pick up’ . Over the phone, I was prescribed Levaquin ‘just in case’. I went to the Pharmacy down the street from work to pick up my prescription. I found not only Levaquin, but I also found I had a prescription for a Medrol Dose Pack of Cortico-Steroids.  I was not warned of any dangers, I did take the time to read the brief insert that was in the bag. It said in RARE cases, perhaps tendon damage may occur and “mainly in the elderly”. What a lie.

My life as I knew it was over, in its entirety – and it was about to take a horrific turn into a nightmare of indescribable torture from which there is no escape and there would be no help… Only I didn’t know it yet.

Surgery went as scheduled. They made my tonsils and the base of my tongue smaller, put 3 ‘pillar implants’ in the soft tissue above my Uvula and a few other things all in effort to create a larger airway. It worked in so much as my Sleep Apnea has much improved, I might even say it’s gone now. But there were complications afterward.

After a week or so of recovery time, I was back to work for a few days. I was still very slow and run down, I was still recovering. Looking back, I now recognize how badly my mind was already affected. I was very detached from my body and my life. It was like I was living in a movie or a dream of some sort. I was on Auto-Pilot going through the motions of the day, but being completely severed from the presence of it. My thinking was much slower and I was having a rough time processing things. Meetings, easy questions my co-workers would ask. I just couldn’t seem to follow conversations. I noticed, but thought I was just still recovering from a rough 10 days. But perceptually, I was a hot mess.

Around the 3rd day back at work, my throat had an area of razor sharp pain and I noticed I was having a little trouble swallowing. I left work to go see the Surgeon in his Downtown office. He did an endoscopy and saw a burn mark from one of his tools in my throat as well as swelling. He gave me a high dose prescription of Prednisone for the swelling, another Cortico-Steroid as well as another prescription for Levaquin “just in case it becomes infected”. Luckily I didn’t start the second bottle of Levaquin, I was forgetting to take them at times so I had about half of the first script left. But I took the steroids as prescribed and stayed home from work as I was becoming sicker. The Doctor also told me to take NSAID’s for pain (Advil). Years later I’ve learned you’re not supposed to prescribe Fluroquinolones with steroids or NSAID’s. I also learned that NO ONE is held to blame in these cases. We’re just left to die.

2 days later, I was admitted to the same hospital in the City where the surgery took place. My Surgeon was concerned I was becoming infected as I had a fever and was a little weak. There at IL Masonic I learned that I suffered from “Viral, Fungal and Bacterial infections”. Somehow despite being on the worlds most powerful class of antibiotics I was riddled with infections (I later learned this is not uncommon in Fluoroquinolone Toxicity). On discharge 4 days later, I was given a prescription for the antibiotic Avelox. Another Fluoroquinolone. I was still on my first bottle of Levaquin, and because of the Hospital stay I hadn’t taken any in those 4 days. I am not sure if they gave me IV versions in the Hospital or not. But I hadn’t taken any on the day that I was discharged, I was too spaced out to remember to take them. The next day would mark beginning of my nightmare.

6 October, 2008.

The morning of 6 October, 2008 I woke up with a feint but somewhat intense tingly sensation in my legs. I could move them, but they didn’t feel right. I could feel the sensations in my legs, but when I would try to use them I couldn’t feel them. As if I was disconnected from them.  Walking now meant that I had to watch my feet to see if they were under me or not. The brain-fog was intensifying and I was starting to feel confused. I thought I’d been through a lot the past few weeks, and I did just get out of the hospital. So I thought I’d give it a day.  I called the ENT Surgeon’s office again the following morning. This time, they just took a message saying they’d have the Doctor call back. I just wanted to know if this was normal or not. I wasn’t worried too much, but I did think it at least warranted a call. Two more days and several more calls to the Doctor. Nothing, no call back. Finally on the third day a Nurse came to the phone to ask what the issue was. She sounded frustrated when I told her I couldn’t feel my legs and was having a hard time walking. She snapped back saying “ The Doctor says to call your Primary Care Physician” and promptly hung up.

This was the Doctor who prescribed these antibiotics, he should have told me to immediately stop taking them.  HE was responsible for this.

That was a Thursday. The next day, Friday, Nikki drove me to the ER at the local hospital. I was having an increasingly difficult time walking. So they brought a wheelchair to the curbside and brought me in. Immediately they recognized that my left eyelid was drooping – a sign of Neurological damage – and we skipped the typical admission and triage process. They did that while I was on the gurney in the hallway in between the Neurologists questions.  I was able to speak clearly, but I wasn’t able to say much of what I was feeling or thinking. I was confused already by the multitude of symptoms and by the motion around me. I was able to tell them that my legs were tingly and that I couldn’t really feel them when I try to use them or walk.  I felt oddly calm during the whole process, but I just couldn’t seem to use the words I wanted to. They performed CT’s, MRI’s , blood work and a Spinal Tap and settled on Guillan Barre which is a type of Peripheral Neuropathy, damage to the Peripheral Nervous System. They told me a little of what to expect as it progressed but I really couldn’t follow what they were saying.

The next day I was transferred to Rush University Medical Center for ‘Elevated Care’. I was immediately admitted to the Neurological Wing of their Intensive Care Unit. There they explained again what the previous Neurologists did. I was told to expect it to progress quickly and that as it moved up from my legs it would paralyze everything in its path. Organs included. I was told that I would be on Life Support for an undetermined period of time and would have an unknown prognosis. A lot of talented Doctors and none made the connection to the antibiotics I was prescribed.

After numerous standard tests came back normal, I was told this was all a panic attack. They sent their Psychologist to my room who found me to be perfectly sane and found no reason to believe any of this was in my head. Both his opinion and my insistence that something is very wrong with me did me no good. I was discharged and sent home. In less than an hour, I went from being in Intensive Care to being in the parking lot. I didn’t understand.

This would become a pattern in coming months and years. IF we even learn what’s happening to us, MOST of us never find help.

Once back home, things continued to worsen. All the sensations I was feeling were becoming more intense and new Neurological and other issues developed daily. Within 2 weeks, I was in a wheelchair. At the time, Rush University was ranked #4 in the country for Neurology. If they couldn’t figure it out and thought it was all in my head, where do I go now for help?

My cognitive abilities were worsening fast. My intellect was still intact, but it was like trying to think through an intense electrical mist. Add to that, worsening visual and perceptual issues. I didn’t recognize the mental aspect as an issue or symptom at first, I just figured I must be overwhelmed and needed to try harder. I decided that after the embarrassment at Rush University, I was not going to bring anyone with me to my appointments anymore. Big mistake, but I had no way of knowing.

Over the next 2 months I had seen several other specialized Neurologists and various Doctors. One suggested AIDS as a possibility, another “expert”, Dr. Barry Arnason at University of Chicago, tried hard to convince me that I was suffering from Migraine Headaches. Yep. All this was due to Migraines. He also helped me up out of my wheelchair to the hallway where he started screaming at me to “RUN – C’mon, RUN!! Like you’re late for the bus”… “C’mon, it’s just Migranes. RUN” he yelled. Talk about embarrassing and infuriating. I was IN A F*CKING WHEELCHAIR you A-HOLE. I will never forget the humiliation and the hopelessness he caused.

I was so confused, the brain-fog had intensified as well as the perceptual issues of living in a movie. So I just couldn’t understand what was happening around me or to me. What I DID understand is that I had been to a handful of otherwise talented Doctors and they all seemed to think it was in my head. I doubt I’ve ever met a Man who wouldn’t feel embarrassed and ashamed. I mean, how many times can you drag your family through going to Doctors and Hospitals only to be told this is all a panic attack before you become so ashamed that you just stay quiet? I felt I was the only one who believed me. And I sure as hell wasn’t going to drag my family through this anymore. I saw the pattern developing. What’s a Man supposed to do?

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Christmas 2008

 

It would be almost 3 years until I was diagnosed with Mitochondrial damage, a unique and horrific condition that disrupts the energy production in the cells. Mitochondria are responsible for 90% of the energy required by the body to sustain life. Mitochondrial damage explains all of my symptoms and the pattern(s) it follows daily. But until that time, I/we were left in the dark to try to make sense of this confusing pattern of intense events.

 

By early December 2008 (beginning of month 3), besides the growing list of Neurological issues, my entire body was becoming extremely weak at times. Sometimes much weaker than others, and this was confusing me too. I had more than a few otherwise talented physicians telling me that all or most of this is in my head. And now I’m starting to notice slight waxing/waning of the intensity of symptoms. One day I could at least stand – maybe even walk short distances and make it look good – where as other days it seemed like blinking took more energy than I had. At that same time, the brain-fog seemed less intense as did other symptoms. All the symptoms travelled as a group. Meaning when one thing improved, it seemed like nearly all symptoms improved (and vice-versa), any improvements were gradual.

It wouldn’t noticeably improve overnight; improvements would be slight and noticed over days or weeks. But it sure as hell gets worse in an instant. Below is an exerpt from one of my “scraps of paper” where I wrote my fragmented thoughts over the years.

It was about mid-November (month 2-ish) or so where I felt the effects of stress and/or anger for the first time. I was in a slight upswing in symptom intensity and was able to walk short distances. Nikki and I went for breakfast and when we came home, I remember getting angry about something. Instantly, all the improvements I had were gone, many new sensations appeared and I felt the electrical pain for the first time. In literally less than a second, my entire body was on fire with intense electrical pain – face included. I started to shake and quickly became weak. I was able to make it from the car to the back room near the garage that would later become my prison. Whatever was happening to my body because of that burst of anger was getting worse. The shaking and intense electrical pain lasted for days, but the weakness and worsening of symptoms that it caused lasted much longer. This was yet another thing to the Doctors credit I thought. Stress and/or anger makes it worse??? No way, now that sounds like something that’s in my head and since it seemed to affect all my symptoms, my logical brain thought maybe almost all were in my head too? The Doctors must be at least a little right I thought. It all just sounded crazy to me. My shame bucket was filling fast.

 

This is where the mental warfare really began I think. It would get much worse in coming months and years, but this is where it began. I was struggling to believe myself, but to the Doctors credit, this was making less and less sense to what little mind I had left. I mean, something that severe doesn’t just improve for no reason, right? I mean, if it’s really affecting me that much, it should always be reasonably close the same intensity right? If I need a wheelchair today, I should reasonably expect to require one tomorrow. But that’s not how it went. At least at first…

During and up until this time (early Dec 2008) I had tried very hard to work from the hospital or home. The Management at Rotary were very flexible and supportive, but after nearly 3 mos out of the office I was not able to keep up with my duties. It was then suggested I go on disability and focus on my health. They made the right decision, my health was poor and becoming worse by the day. But still, I felt I was beginning to lose the life I built and knew. Little did I know just how much I would lose in coming months and years.

Shortly before that burst of anger in late November, I was able to borrow a spare wheelchair from my Grandmother. Getting one of my own would mean accepting a reality that I wasn’t ready for. Besides, I felt if I had one of my own that I wouldn’t work as hard to stand or walk, which was becoming increasingly more difficult.

About 2-3 weeks or so after I got the wheelchair, I began to lose my ability to move myself around. My hands, arms and shoulders would fatigue extremely fast and were pretty weak. Walking was very difficult at best, but I couldn’t use the wheelchair if my hands/arms were too weak.  I was properly motivated to walk on my own but I just couldn’t seem to most often.

Logically, very little of this was making sense to me. I mean not even 12 weeks before this I was in the gym for 2+ hours every day. After the experiences I’ve had with Doctors up until this point, and after I failed to make sense of this in my head, the shame started to take over. Eventually, I just quietly stopped using the wheelchair and since I couldn’t walk either, I found a spot in the back of the house to hide during the day using the wheelchair only at night to make it to the bedroom or to kiss Aedan goodnight – I didn’t realize it yet, but that hiding spot would be where I would ride out the darkest of times and would be forced to face my deepest fears through terror I can’t yet describe.

I didn’t know how to explain what was happening. I couldn’t wrap my mind around it, and I didn’t realize how badly my mind was affected. I noticed it of course, but I thought I just needed to try harder. And I was so detached from reality and slow. There were so many sensations and so many different types of pain, in my mind it felt like I was in a room with hundreds of people screaming at me for attention – so many that I couldn’t understand any of them. And unless I knew what to say or felt I would make sense, I wouldn’t say anything. I felt that the more I would complain or the more I would say, the less I would be believed. And after the experiences with the Doctors up to this point, add in the slight waxing/waning of my symptoms and my inability to understand it myself.

This is when I started to worry I would lose my family over this. I had no reason and years later I realize how foolish it was to think that. But I was convinced that if this were to continue to play out this way, I would absolutely and inevitably see my family torn apart. I had to take this all on myself I thought.

Poof… I blew a fuse somewhere.

Glutathione Part Deux: How to self administer a Glutathione IV if alone

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How to prepare and self administer a Glutathione IV alone, without help:

Over this last week I’ve been able to finally log onto and use my Facebook account that Nikki made a year or two ago. It was only 6 mos ago when I last tried to learn it, but it was far too much for my eyes to process and I couldn’t understand what I was seeing. Did log on, got through that part. But I couldn’t understand the screen. I did see a box to type in, so I did and I just hoped that went somewhere that it was seen. So I’m happy to report that’s a fairly big improvement for me. I’ll write more on this later, it’s a big deal to me to be able to finally start communicating again.

The point of this post is to answer a question I’ve been asked too many times in this last week. Which is “What if I don’t have anyone to help me do this?” , referring to the video I made on self administering Glutathione. Or, “I’m too scared to do this”, etc… If you’ve been where I have, you’re far past a place where fear plays any role. So you are not too scared, you’re so much stronger than you think.

Well you’re in luck. In 2010 when I first started to do my own IV’s, I made a couple of videos.

For those first few years, especially when was unable to speak, I had this dream I held onto which was that someday I would heal enough to find people suffering like me. And that when I did, I would be able to help. Then in early 2010 I had my first dose of Glutathione. Within minutes I was substantially more clear minded, I could stand and walk with comparative ease and I could speak clearly. I was still trapped inside my own mind, unable to effectively communicate and still so so confused. But I couldn’t wait to tell those who suffered like I did all about it.

After some quality control issues with the supply my local Dr had (I urinated a LOT of blood after each Glutathione treatment), I didn’t understand how to find other help. Again, my brain was so useless then. Since I couldn’t understand the outside world enough to find help, I decided I would have to do it myself. So I set out to find the Doctor who pioneered the use of this miracle substance to learn about it. And I did.

I’m sure the rest of you floxies will understand this part too; I had too much shame about being sick that I couldn’t bring myself to ask for help. I also refused to let Big Pharma’s killing machine to take away from her or my Son anymore than they already had.  I didn’t want Nikki to have to see this, she deserved better I thought.  She did help those first few times. But I really needed it everyday, and I was so ashamed of what had become of me that on most days I wouldn’t ask. And I’d go without, even though it made me so much worse without. I knew that had to change. My family needs me to get better.

So I found this Dremel Desktop Vice on amazon which I thought just *might* work as an extra hand. When it came I was so excited because I was going to make a video that perhaps someday I’d be well enough to share with those like me.

The last video is a little longer, but please watch. Yes, I’m showing you how to do it. But most important, it’s the first time I had recorded my thoughts and words for those like me. Through these I am talking directly to those floxies who are just like me. And I would very much like to share them with you now.

This is the very first time I tried this, but I wanted to record my first time so y’all knew what to expect. I’m glad to finally share these.

This is also the first blog post where I simply write and post. So I hope it makes sense. Usually a post takes me at least a month to write since I can’t always find the words I want to use. Same thing with speech.

Last, I’ve opened comments up to all since it sounds like some were trying to contact me but couldn’t. So feel free to post any comments or questions.

This is in 3 parts.

This first video is showing and explaining the proper preparation process for the Glutathone IV.

This second video is the set-up process and final preparation before injection.

Last, this third video is the actual process from start to finish without any help. During the IV I share my thoughts with you on things I hope you’ll find helpful. So please watch.

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.

How much can a Man take? Devistating news today…

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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.

________________________________________________________________________________

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.

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’

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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.

 

A switch to Gluten-Free living

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Maybe Michael has always been gluten-intolerent. If he has, we hadn’t noticed in the past. You see we are from Chicago, so our diet used to consist of Pizza, Italian beef sandwiches, and Pizza.

Then in May 2012, his neurologist, Dr Perlmutter, recommended a test for gluten intolerence. It came back showing that, in fact, Michael was very intolerent to gluten and that it must be cut out of his diet immediately.

So I did what any normal mother would have done- open my kitchen pantry and cry at the stockpile of whole grain pasta, crackers, cereal, and the other many various kitchen staples that has built the American diet for the past couple decades, and that we could not eat anymore. Then I went online and to the library to research how to live gluten-free.

Michael has been gluten free for months now- every once and a while I’ll tap into the gluten stockpile and offer a different meal to Michael than I do for Aedan because I don’t want the other food to go to waste. And I have to say, only good things have come from this change.

Michael still has bad days where he struggles to get enough energy to walk across the house, but overall, the removal of gluten has lessened some symptoms. It is hard to quantify because his symptoms inhabit so many body systems but I can say that relatively speaking many things have improved. On the pain scale from 1-10 Michael often existed at a 7. Now he can say that he’s down to a 5. While still too painful for me, any improvement is monumental. His brain fog that caused him to sometimes walk about the house at a zombie’s pace has been upgraded from “zombie” to “tired person”. Most importantly, his symptoms are more…predictable…He knows that if he does too much or skips out on his supplements, his body will react accordingly whereas before it was more random.

This new focus on proper nutrition is life changing for all involved. Pizza and Italian beef has been replaced by Kale and Roast Chicken. My scientific brain gets to enjoy the chemistry behind why the body needs certain vitamins and minerals. My inner child gets to be the “Swedish Chef” from the muppets as I make gluten-free bread from scratch.

Gluten-free white birthday cake for Michael’s 39th Bday was the best cake I’ve ever tasted!

In the end, I’m not surprised Michael’s body cannot tolerate gluten. For decades wheat starting being cultivated so that the strains containing the most gluten were in high demand because the American taste buds liked the gooey texture of high gluten wheat. It just doesn’t surprise me that the same culture that created these Frankenstein-like drugs also creates food that the body cannot process. Whatever turns a profit I guess.