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The Loss of a Loved Community Member

The “floxie” community lost a wonderful person last week. His name is Marc Thavenot, and Levaquin killed him. Marc struggled with fluoroquinolone toxicity for three years. He fought for his life every day of those three years. However, in November 2018 he lost his battle.

Officially, his cause of death was suicide. But the truth of his situation is much more complicated than the simple label of “suicide.” I suppose that all suicides have more to them than simply someone taking his or her own life. There is always a back-story.

Marc’s back-story is that he was tortured by a combination of fluoroquinolone toxicity (Levaquin), benzodiazepine damage, and Lyme Disease. On his web site he described his situation:

“In October 2015 after I had a fall and broke my hand i was put on a drug called Valium which is a benzodiazepine for anxiety and insomnia. Then 3 weeks later I was given an antibiotic called Levaquin for what the doctor thought was a stubborn ear infection. Little did I know that not only are these two drugs dangerous by themselves but are contraindicated when given together and risk for toxicity goes up tremendously. Upon taking the second dose of Levaquin, day number 2, I awoke at 4am with the most terrifying symptoms one can imagine. I felt the most horrific impeding doom, burning all over, ringing in my ears, blurry vision, panic, anxiety and fear unlike anything i could have ever imagine. For the next couple weeks these symptoms persisted along with the most brutal insomnia one can imagine with no sleep for days on end. Having already been dealing with having Cerebral Palsy my entire life this was just life shattering yet I had no idea what was yet to come. A couple months of this and things began to get worse with hallucinations, blood pressure spikes, body temperature deregulation, bone pain, shortness of breath, adrenal crashes, immune system crashing, GI problems, food sensitivities, rashes, teeth pain. It was just absolute hell everyday and i was completely unable to function and no doctor could figure out what was wrong.”

For three years Marc dealt with these issues and more. One of the more devastating symptoms that Marc dealt with was tinnitus that ruined his ability to do his job as a music producer and sound engineer.

Marc tried many things that he hoped would help his situation. Tragically, none of the things he tried cured his fluoroquinolone toxicity, benzodiazepine damage, or Lyme disease.

Perhaps with more time some of his symptoms would have faded, or maybe a cure for fluoroquinolone toxicity, benzodiazepine damage, or Lyme disease would have been found. Perhaps the thing that would have helped Marc to turn a corner toward healing would have come in a few more months, or a few more years. Tragically, we won’t know if solutions would have come to Marc. His time here is over, and that is so, so, so horribly sad.

Like many, maybe most, people, I struggle to find the right words to say both to a person who is suicidal and about a person who has committed suicide. I am not equipped emotionally, nor do I have the right training professionally, to say the “right” things to/about people who are suicidal. So, I have steered away from the topic, and suggested that people reach out to suicide prevention hotlines and mental health professionals. I still suggest both of those things. The National Suicide Prevention Hotline can be accessed through http://www.suicidepreventionlifeline.org/ and 1-800-273-8255. The people who answer the Hotline calls have tools and resources to help steer people away from suicide, and I hope that people use the Hotline as a resource. However, I’m bothered by my own suggestion that suicidal people “reach out.” I’m bothered by the suggestion because Marc DID reach out. He reached out to to many of us in the floxie community, including me. He asked questions and he sought advice, and he was given guidance to the best of our ability. But nothing helped, and his health continued to decline until he couldn’t take the pain any longer. Now he’s gone. I wish I had done more to help Marc. I wish I had known the right thing to say to him, or the right advice to give him that could have possibly shifted his path. I wish he was still here.

I know that there are others in the floxed community who feel guilt over not “doing more” to help Marc. I’m sure that you all did what you could. I did. But I wish I had done more, and I feel bad about not doing…. I don’t know…. more. But as a friend pointed out, why are we feeling guilt while the people who gave Marc the drugs that killed him feel no guilt or remorse about their role? The pharmaceutical company creators of Levaquin, the FDA (or the equivalent on Trinidad and Tobago), the doctors, etc. played an active role in poisoning Marc, but most of them have no idea, and they feel no guilt, while we do, and Marc is gone.

I hope that Marc’s family and friends know that the thoughts and prayers of many people throughout the world who “knew” Marc through the fluoroquinolone poisoned community are with him and them. He was clearly loved, and he is missed.

Levaquin, benzodiazepines, and Lyme disease killed Marc. He was tortured by the illnesses brought on by these pharmaceuticals for years, and I can’t say that I don’t understand how they could lead to his suicide. But, with all the love and respect in the world to Marc and his loved ones, can I please encourage all my floxed friends reading this to not go down the same path? Death is permanent. With death there is no hope or chance of healing. For every day that you are alive, there is a chance that healing will occur. There is the chance that discoveries will be made that will lead to cures. There is a chance that your body will cross a threshold toward healing. There is a chance of joy. There is a chance of love. There is life. There is hope.

I hope for strength for each of you. I hope that you get through fluoroquinolone toxicity. I hope that your body, mind, and spirit heal. I hope that you maintain hope, and that tomorrow (or the next day, or the day after that) brings the healing that you are hoping for.

I hope that Marc’s loved ones know that he touched the lives of many people throughout the world. He is missed, and our community is in mourning.

*****

Marc’s friend Nicholas asked me to share this message. It includes Marc’s last message.

Marco and I were friends since we met in 1999, best friends since 2002. We had a business together and we helped each other through some tough times and eventually, unwillingly, we were forced to dissolve the business for economic reasons and a shift in the landscape of home studios. It wasn’t easy. We had our differences of opinion and that coupled with other developments in my own life caused us to grow distant for a while though we frequently spoke via phone and message. We overcame our differences, our defunct business, and leaned on each other again and became brothers.

Over the last 3.5 years of him suffering we visited when we could, but spoke at least 3 or 4 times a week minimum for 30 mins to 3 hrs depending on how he was feeling. During the last 2 months, we spoke every day. I am recovering from my own issues, and I always hoped that he was doing the same, but it never came to pass.

Most people couldn’t endure watching him suffer. It was my honour to do so and help him through it, but to all who feel a ‘how’ just know, he understood. He often lamented that all those that surrounded him before had disappeared, but he knew how hard it was to watch someone suffer. He held no grudges.

Above all he wanted me to pass on this message so that people could know what he went through, what this drug, this dangerous ‘last resort only’ drug that is still treated like it was Panadol, did to him.

He was suffering from brain fog, which will be evident in his writing. I think it brings the message home with greater strength…

Marc’s words:

I wanted to write to you to thank you for all that you have done. Not once did I think that you didn’t do everything possible for my well being

The more I understand of my situation the more I realize I’m stuck in a very complicated viscous cycle. Iv just had a lot of trauma in my life that Iv struggled to let go of and it’s not because I have not tried but because it’s trsuma I have to relive everyday from young I was in pain and it was a physical and emotional struggle to do simple daily tasks even though I didn’t show it I certainly felt and I kept strong and pushed through. This built up trauma eventually weakens ones immune system and emotional health which I why I struggled so much with depresseion even though I didn’t show it as much

My accident breaking my hand was another trauma that started the ball rolling and then having surgery introduced anesthesia that also did not help the situation. Then came the final blow the levaquin which obviously damaged me in very serious ways I’ll never know for sure but I know was never the same after taking that drug.

I cannot begin to describe pain Iv felt everyday with having to live with CP. it was agony that existed both emotionally and physically. Then getting floxed and experiencing absolute nightmare symptoms daily And then to have so much taken away and have having fought to heal only to get worse and relapse due to who knows what. Fq toxicity is no joke and it has been just too much for me to deal with I have no life. This is not living.

Everyday since since I took that drug levaquin iv felt unattached, like my Head was filled with cotton and I couldn’t focus. every bit of sleep I got which was minimal I woke up to me extremities feeling like they were being crushed and burning. The main symptoms that were horrific with adrenal surges and BP spikesc of 210/110. Then it would drop to low 90/50. I have internal vibration that felt like if I was hooked up to a low voltage shocking station. I have severed moods swings with crying fits for no reason, my body felt heavy like someone filled me with lead. I feel completely exhausted but couldn’t sleep because i felt this pressure in my back my head that squeezed my head almost like if I had a parasite octoputus like thing in my head. Everyday I have severe abdominal pains that would feel like someone stabbing me with a knife. My mid and lower back would ache feel tense. I had several parts of my body feel numb and go completely week on a daily basic. My teeth would ache everyday. My jaw would be tense. My ears suffered horrible as they would be extremely sensitive to sound and burn life fire inside. I have nerve pain all over my body . I have stabbing bone pains in shins and arms. My vision is double blurry and not what It was. My chest feels like someone sucker punched me in the soloplexus. I have skin burning all over which feel so bad sometimes even taking a shower hurts. I feel like I’m out of my body with extreme brain brain fog fatigue and pressure all over my body and when I push to do anything I feel pressure all over my body with fatigues like some sucking energy out of me get worse. fingernails hurt and have arthritis like symptoms that make it hard to type play guitar etc. I have severe digestive issues with bloating constipation food intolerances. I can’t tolerate the sun or groups of people which makes going out or liming with friends almost impossible. My ears click with damaged euststion tubes so I hear things louder and sounds like resting a glass down on a table or a speaker phone would hurt my ears and I would hear audible distortion in my ears if I tried listening to music even at very low levels. All of these symptoms and more iv have endured from the day I took those pills. It’s now over 3 years and I still experience all of them in groups randomly everyday. Lack of sleep and depression have been a huge challenge as iv been not able to work feel joy do daily activities etc. fq toxicity is no joke and it ruins lives. Iv had countless doctors tell me it’s in my head it’s anxiety disorder. Bullshit. Cause after 2.5 years of hell I went on to antianxiety medication which barely helped. Except I feel more sedated but still can’t sleep. Fq toxicity can include damage of receptors in the brain that are responsible for managing our neurotransmitters. It can cause dna damage. Vegus nerve damage. Totally destroy your microbiome. Damage to mitochondria which is your main cells Responsable for energy production. It can damage immune function and send you body into extreme fight or flight which it did for me. Allowing infections viruses etc to wreck havoc as they have the oppertunity. After extensive testing in my journey to try and heal. I’m positive for Lyme , babesia , Scarlett fever, ebstein bar, cmv, herpes hsv 1 7 and 8, hpv. Rubella and a collection of parasites. What I did find out was I didn’t get my cerebral palsy from lack of oxygen at birth which usually leads to full body defects and speech problems. I had a different cp which is common with cmv virus infection in the nervous system. This would explain all my life I struggled with being unable to relax and have an easy time with relationships because my nervous system was compromised. It was difficult for me to be social. Well thing is the levaquin I took activated that virus and made it much worse along with everything I mentioned above so my cp got worse I now I’m forced to walk in crutches. Fq toxicity damages cyp450 liver engine pathways which responsable for metabolizing herbs drugs etc. no longer can I take pain killers thc or several other things that could have helped ease my suffering. This has affected me greatly as it’s affected my detox pathways and left me unable to detox like a normal person. Which creates a very toxic environment in your body which leads to more symptoms due to leaky gut and poor methylation.
These are things doctors are commonly unaware of and is why Iv had no real help because there really is no solution to what iv been going through. After 3 years and I’m actually worse off now after everything I’ve tried I really don’t know what else to do. All I know is life is absolute torture everyday and a struggle and I never knew someone could feel so bad. Only one who has experienced this could ever possibly get it.

I want everyone to know that there is so much more to what’s was going on with me that I would take a lifetime to explain. But the pain and torture that I go through nigh and day over and over again is just too much for one to endure. So please if your reading this don’t be angry or mad or sad or hurt because you think Iv done a bad thing. Know that I’m free of the worse pain and torture that I could ever imagine and please feel a sense of ease knowing that I no longer suffer. I know I’m my heart that my soul is in a beautiful place. And that it was just stuck in a sick body.

I Heart The Floxie Community

DiegoMelanieJose

Diego, Melanie and Jose

Diego posted the above picture with the note, “Sometimes in life you come in contact with people whom God puts in your path! Although it was unfortunate that our paths crossed due to being affected by the same type of antibiotics we have supported and encouraged each other! Building our lives back to complete health! Thanks for ur friendship guys!”

Isn’t that lovely and awesome?

Diego also wrote:

There is something definitely powerful in uniting yourself with others who have a drive and determination to get better. This weekend I had the privilege of meeting other individuals who were affected by fluoroquinolones and we talked about our symptoms of course. However, there was conversation about our dreams, goals, and fire to keep pressing through this pain. I felt empowered to keep fighting and felt so much peace about knowing that we will all recover. We shared our remedies and gave each other tips about getting better. Our lives are definitely forever changed. I choose to believe that it will be changed for the better. Hang in there we will OVERCOME this!!! Now, I am blessed to call Jose and Melanie my friends. I can’t wait to meet more people affected by these antibiotics. Keep fighting, keep pressing, keep believing, YOU ARE WORTH THE FIGHT!

<3!!!!!

None of us would have asked to become a floxie. None of us would have asked for the painful peripheral neuropathy, the torn tendons, the chronic fatigue, the brain fog, the loss of money and relationships, or, really, any of it. But the awful did happen. It’s unfortunate, and if we could turn back time and re-do things, I think that most us never would have taken those drugs. But if we turned back time, and were never floxed, we never would have gained the friendships and community that many of us have as a result of banding together with other floxies. And since we can’t turn back time, we may as well appreciate the friends that have come into our lives because we are part of the floxie community.

As the wonderful admins of The Fluoroquinolone Toxicity Group (4,600+ people – wow!) always say to new members:

welcome to a group that no one wanted to join! Actually, this is the best group of people you will ever meet but the reason we’re here really sucks. The friendly folks here understand what you are going through and really want to help, whether you are a victim of fluoroquinolone toxicity, or a loved one who is taking care of one.

Indeed–The Fluoroquinolone Toxicity Group is full of friendly, thoughtful, wonderful people! People in the group spend hundreds of hours helping each other, advocating for each other, supporting each other, giving information to each other, and more. Floxies spend time and energy supporting friends who they’ve never met, who would be strangers if it weren’t for the unfortunate connection of being mutually poisoned, through some of the worst times in their lives. The generosity and caring of those in the community truly is amazing. Thank you to everyone who is part of this amazing community!

Floxie Hope also has a community of people who help, support and nurture each other. There are more than 15,000 comments on FloxieHope.com as a whole, and 10,000 on the home page. The thoughtful comments that reflect generosity, caring, knowledge, and a desire to help others, are beautiful and greatly appreciated! THANK YOU to all my wonderful friends who have made this site into a community. I am humbled by your generosity and grateful for your friendship!

I’ve had the opportunity to meet some floxie friends in person. Here is a picture of me with Suzanne:

SuzanneLisa

It is amazing beyond words to connect with someone who really understands what you’re going through, and what you’ve been through. Fluoroquinolone toxicity is so strange, and so unintuitive, that it’s really difficult for those who haven’t been through it to understand. Fellow floxies understand. They “get it” without struggle. It’s wonderful to have friends who understand and empathize with you.

Empathy, friendship, connections, community and understanding – they’re what life is all about. I am thankful to everyone in the floxie community for their friendship and for the wonderful community that has been formed! You are all greatly appreciated!

 

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