Tag Archives: stem cells

Deciding Which Treatments to Try

The following is a guest post from Stephanie. If you are interested in writing a guest post for FloxieHope.com, please let me know

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I really get bombarded all the time with, “go get stem cells how could you not?” I get so anxiety ridden from it. I know people mean well but it’s so hard on me. It feels like harassment and not love at certain points–like they can’t handle me being sick so I have to heal for them to be okay.

I just want people to know that whatever they do to heal is their own decision.

I’m constantly deciding–how much do I want to be tested on, and what treatments do I want to try?

I’ve been floxed for almost five years and it’s a 5 steps forward and 4 steps backwards dance where I hold onto the one step forward as best I can–because it’s better than the times where it’s 6 steps backwards and I fight just to get back to where I was.

The crazy part is that it all becomes a matter of how much I want to be tested and treated, AND how much I want to pay for it.

There still isn’t enough data to answer one simple question: Will this procedure help me or hurt me?

Because these side effects feel like a bomb went off inside my body that made things crazy, it feels like it’s impossible for any doctor–western or natural–to give me a straight answer of, Will this treatment help or hurt?

People can list out what helps but no one can know for each person. How I look at it is we are all being tested on to get more data and to pay for it.

So, I constantly have to weigh out, do I want to risk what I have for an unknown promise of healing?

That carrot is so tempting and so hard to answer.

For me, I weigh everything on what happens if it goes wrong how much will it mess up my life. How much can I afford this to mess up things?

My husband has medical issues too and he needs to be made to take care of things too.

So, it’s a dance that is never ending.

When people ask me why don’t I try this or that it’s because I don’t like to be poked and prodded and tested like a guinea pig.

I have to feel like the odds are somehow going to be in my favor because I’ve seen various experimental treatments make people so much worse, and I often think that it’s not worth the risk.

It’s easy to talk when it’s not your life and you are not the test bunny.

Why we have to pay for everything is beyond me.

Why we have to constantly be told yes these are side effects and you get to pay to maybe get your health back is beyond me.

So, for anyone out there that is pressuring someone like me to try something, please understand it’s really easy when you are not the one being poked, prodded, and tested–when it’s not your body and your life that may come crashing down if the treatment doesn’t work as-anticipated.

It’s not easy to pick what to do and how much you are willing to spend to go through treatments that haven’t been proven to work for everyone, much less everyone.

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My Dear Friend Suzanne

My friend Suzanne was “floxed” as badly as anyone I have ever heard of. She was bed-bound for about a year. She was almost completely paralyzed for a period of time, and it even hurt for her to chew and blink. Every single tendon, ligament, and muscle in her body was damaged and weakened, and she experienced body-wide pain. She suffered from profound fatigue and weakness, and other toxicity symptoms that are far too numerous for me to list. Every cell in her body was adversely affected by the Cipro she took post-appendectomy. Her friends and family feared for her life for a long time, and there were even some times when she didn’t know if she would make it through.

She did make it through though. Suzanne was initially floxed in 2011, and I became familiar with her journey in 2012 when I saw a video of her taking her first steps post-flox (walking out of a pool while doing physical therapy). I had the pleasure of meeting her in-person in 2013 when we both went to Washington D.C. to advocate for fluoroquinolone toxicity awareness, recognition, and change in how fluoroquinolones are prescribed. At that time, Suzanne could walk several steps at a time, though her Achilles tendons were damaged in a way that made it impossible for her to put her heels to the ground, and she always had to have a wheelchair nearby. In-person I got to see what a strong, lovely, kind, thoughtful, interesting, and spirited person Suzanne is. We became friends after that meeting, and corresponded regularly.

In one of her messages to me she said, “While I appreciate your efforts in telling people that recovery is possible, I am not going to recover.  Too much damage has been done.  Some of the damage is irreparable.  I just need to come to terms with it.”

I responded with the post, “Redefining Recovery.” Here is an excerpt from it:

She knows her body, so who am I to argue with her?  She knows that the cartilage in her joints is not going to grow back.  She knows that she will never be able to do the physical things that she used to do with ease before she got floxed, because some of the damage done to her truly is permanent.  She will never run, she will never jump, she will never skydive or play soccer.

She has to come to terms with these things – these limitations that were unfairly and unjustly inflicted upon her.

She IS coming to terms with them.  As difficult as it is, she is finding peace and acceptance of her current condition and realistic future prospects.

Her story is not one of doom and gloom though.  Her story is one of perseverance and strength.  It is an amazing, beautiful recovery story.

My friend has come so, so, incredibly far.  She was completely paralyzed for a while – to the point where she couldn’t even chew and blinking was painful.  Now she can stand and even take a few steps.  She is working hard, with physical and mental therapy, to recover.  And she is recovering.  She is improving every single day.  She is working incredibly hard to do things that most people take for granted – chewing, walking, showering, having lunch with friends, etc.  She is doing those things.  Each one of those things is an accomplishment.  Each one shows recovery.  Each step that she takes is the result of a huge amount of strength, perseverance and bravery.

Suzanne continued to show a tremendous amount of strength and resiliency as her body healed. She had good days and bad, but overall, her momentum was forward, and her capacity increased. She never got to the point that she could return to work, or jog, or do many of the other things that she used to do pre-Cipro, but she did get back to living life. When I saw her again in 2016 she was able to drive, and even walk around without a wheelchair nearby.

Lisa and Suzanne

In 2017 she had a relapse in which the connective tissues in her hands and wrists were attacked, and she was scared that she wouldn’t be able to use her hands any more. Though that relapse was horrible and painful, she survived it, and emerged from it able to use her hands (not like she did before she got hurt by Cipro, but well enough that she was able to live her life).

In 2018 she has suffered a horrible relapse that she is still going through. She is completely bed-bound again, and is suffering from partial paralysis and severe pain. Her neck is swollen and painful, and it hurts for her to both swallow and breathe. She is suffering from CNS symptoms that include hallucinations and dark thoughts. She describes her situation as, “I am currently bed-bound, can’t walk or talk, and am living on baby food and pureed soup. I am suffering from extreme pain in the front of my neck and esophagus and also from central nervous system issues.”

Again, her family, friends, and community are scared for her. I’m scared for her.

I once wrote to her that if she was floxed as badly as I was, she would still be running–but if I was floxed as badly as she was, I’d be dead. I think it’s true too. She’s an amazingly strong person. She is far stronger than I am. She has been through so much pain and suffering, and she got through it, and now it’s being thrown back at her again. It’s awful, and I hate that such an amazing person is being subjected to such horribleness.

Though Suzanne is an incredibly strong person, this relapse is testing her strength and resolve. Her quality of life is horrible right now, and she is grasping for hope that things will get better. One glimmer of hope is that some fellow-floxies have been helped by stem-cell treatments, and she is scheduled to receive a stem-cell treatment in July. She has many obstacles to overcome before she can get the stem-cell treatment. It involves leaving her home and traveling thousands of miles–likely by plane–and that seems difficult-to-impossible right now seeing as she is completely bed-bound. Additionally, money is standing in the way. These treatments are expensive, and she needs help paying for her treatment. She has started a fundraiser to raise funds to cover the treatment and travel expenses. HERE is a link to her fundraiser page (or you can click the pic below to view it):

If you can please help by donating money, your help will be greatly appreciated!

I can’t know whether or not the stem-cell treatment will help Suzanne, but she needs something to work–something to help turn her body around again, and I hope that the stem-cell treatment will be that for her.

Suzanne is a dear friend and a wonderful person. She has helped hundreds, if not thousands, of people in the “floxie” community through providing guidance and advice. She has advocated for victims of fluoroquinolones endlessly in her community of Clearfield, Utah, in Washington, D.C., and also in our online community.

Any help you can give will be appreciated. Thank you for your consideration!