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!

 

Tagged: , , ,

17 thoughts on “My Dear Friend Suzanne

  1. Claude May 21, 2018 at 7:41 am Reply

    Max dose of vitamine c help so much
    40 pils of 1000 mg per day

  2. Dustin B May 21, 2018 at 8:01 am Reply

    Wow, really sad. I didn’t realize she relapsed so badly. Donated…hope she gets better!

  3. Elizabeth May 21, 2018 at 8:52 am Reply

    Any chance she has me/cfs as well? I used to have mild me/cfs but fluoroquinolone toxicity syndrome propelled me into severe and this sounds very similar. I seem to have some sort of hybrid of the two now.

  4. L May 21, 2018 at 10:09 am Reply

    I don’t know which I feel right now…sadder or angrier. How much she has had (and continues to have to) endure. The pharmaceutical companies should be paying for this!

  5. Tikvah Duesters May 21, 2018 at 10:24 am Reply

    Oh Suzanne, I say don’t give up! I had the EXACT same thing happen to me in 2013 from ciprofloxicin and could not walk for 2 yrs, couldn’t get o/o bed, up from a chair w/o help, amongst other things. Please don’t resign yourself and give in to “no hope”. Be strengthened and know that anything is possible with our faith in God and a change of mindset. I’m praying for you.

  6. Jennifer Moore May 21, 2018 at 10:39 am Reply

    I wonder if we can reach out to Dr. Ghali as any added extra support or help he can give.

    Thanks, Jennifer

  7. Mary May 21, 2018 at 10:54 am Reply

    Please tell me why Bayer is not footing all expenses

    • L May 21, 2018 at 10:58 am Reply

      Exactly. They only know how to TAKE money, not how to give. I can’t find the words to describe how absolutely perverse it is that they are making billions of dollars while all of us suffer, and they don’t spend a penny trying to help figure out how to fix all the damage they have wreaked.

  8. Julie Thelin May 21, 2018 at 11:11 am Reply

    Please PM me. I have something that will help Suzanne. My own mother has been floxed and it is helping her recover.

    • L May 21, 2018 at 11:29 am Reply

      could you post what it is so everyone can be helped?

  9. Ross Allan May 21, 2018 at 4:45 pm Reply

    In my opinion, Suzanne’s pain is probably being caused by some really bad bacteria. These bacteria have become dominant in her digestive tract and body due to the Cipro. The Cipro has killed the good bacteria. These bacteria and their toxins can get into less ‘policed’ parts of your body such as tendons and nerves. I have been poisoned by Cipro which is having long term effects but the pain was simple to fix when I knew how.

    So this is how I got rid of the pain / bacteria –
    a. There is a parasite cleanse product sold at pharmacies in New Zealand. It contains Wormwood, Black Walnut, Garlic, Tumeric, Clove root, Paw Paw, Marshmallow Root etc etc. It will kill Bacteria, Fungi, Worms. You take 6 Capsules (which are unique) twice a day for 10 days. I lasted for 5 days, the pain was gone in 4 and has not come back 10 months later. Use Kefir with your breakfast or probiotic tablets to reinfect your gut. A spoonful of Oat bran a day provides a good medium for the good bacteria to thrive.
    b. An alternative for the pain is an Essential Oil which contains Anise Seed, Peppermint Plant, Ginger Rhizome/Root, Caraway Seed, Coriander Seed, Tarragon Plant, and Fennel Seed. This sold through MLM. You will notice I am not using brands, Americans don’t like it. This will also wipe out the bad bacteria after 3 or 4 days. Apply to the skin. Do a search on Google.
    c. Another solution for the bacteria would probably be colloidal silver which is a solution of distilled water with silver atoms suspended in it at 10ppm. This will kill just about any bacteria. This is easily purchased in NZ in pharmacies and on trading websites. I do not know about USA.

    Suzanne is probably deficient in Magnesium so get on a course of tablets and / or soak her feet in concentrated Epsom salts. Cipro seems to attack people with low magnesium. There are a number of postings on the net about this.

    • Elizabeth August 4, 2018 at 6:27 pm Reply

      Ross Allen, I think you may be on to something here – I have been dealing with Cipro Toxicity for 14 months now, and I just recently also found out that he apartment I have been living in for the last (also) 14 months has a bad mold problem. I looked up the symptoms of mold toxicity (and other mycotoxins) and with the exception of tendon issues – they are identical!! Brain fog, fatigue, memory issues, systemic inflammation, joint pain & swelling, sensitive to light, electric shocks, etc.. can all be symptoms of mold! Which is also a condition that most doctors don’t believe exists… Anyway, I will be going through a biofilm detox as soon as I receive the things I need, but it made me wonder how many other people are also affected by this… the Cipro destroys the gut, then mold, candida or some other mycotoxin takes over and before you know it you are chronically ill. It makes sense (in my case) now because so many times I would start to get better and then something would trigger my body and all the symptoms would be back again – anyway, it’s something to think about.

  10. iamajuicer May 22, 2018 at 9:36 pm Reply

    I have researched how to detox FQ’s . I have researched how to heal from them. I start feeling better and then all heck breaks loose. I am starting to believe it is not possible to heal from them.

  11. Cl May 28, 2018 at 7:41 am Reply

    I’m moved by your story and praying for you to raise money for new treatments. There is always hope!

  12. Scott Rose May 30, 2018 at 10:18 am Reply

    In addition to these stem cell treatments, another thing that Suzanne may want to try is extended fasting (longer than 72 hours). This has been proven to regenerate stem cells within the body and completely rebuild the immune system (see link to article below). Not sure if this will also rebuild a damaged central nervous system, but it’s definitely worth a try.

    Fasting is actually very healthy, and Dr. Jason Fung is considered one of the world’s experts on the topic of fasting. Not only does it regenerate stem cells, but it helps with many other things as well (weight loss, diabetes reversal, cancer treatments, etc.). Dr. Fung has created several books, videos, blog articles, and consulting programs on the topic of fasting. One of his best books is “The Complete Guide to Fasting”, and his blog is located at https://idmprogram.com/blog/

    And here’s the article on the stem cell discovery: https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/

  13. Patricia Spano July 31, 2018 at 12:07 pm Reply

    I would reach out to an acupuncturists that is familiar with issues related to digestion and the vagus nerve. Call around to as many as you need to, and when you find that person have them do a house visit for your dear friend. No one should be suffering like this. I have a very sensitive spot in my esophagus and it causes all kinds of full body nerve pain and odd/painful symptoms when it’s aggravated. It’s worth a try! Blessing to all.

  14. Ross Allan August 5, 2018 at 9:51 pm Reply

    As a follow up to my comments in May and Elizabeth’s recent reply –

    There has been a very interesting comment posting by a Joanne Galias on the page –

    https://fqwallofpain.com/2018/07/03/stus-story-permanent-peripheral-neuropathy-from-cipro/#comments

    Here is its text –
    Hi Stu,
    I just wanted to give you a link to a supplement that has helped me tremendously!!
    Seanol and Ecklonia Cava – A New Powerful Healing Seaweed | Relax Into Success

    https://paulhaider.wordpress.com/2013/09/03/seanol-and-ecklonia-cava-a-new-powerful-healing-seaweed/

    I’m 4yrs and 2mos out from Cipro (and 3 other antibiotics) with steroids – I had every symptom I’ve read about. I thought I was definitely going to die.
    Anyhow, this supplement helps me with my brain issues, pain, joints, sleep, recovery time – for example when I would do a lot around the house or yard it would take me 3 or 4 days to recover. Now I can do whatever I want and I don’t need any recovery time. Also, I have PN on my back and it takes it away. It truly helps with everything Cipro caused.

    This is the one I buy
    Ecklonia Cava Extract 99% pure by Ortho Nutrition, Inc on Amazon. They’re 30$ for 60 count (a month’s worth)
    I hope you try it and get some relief.
    I pray God heals you! 😊
    P.S. I tried LDN And it made me worse, so be aware. I thought I should let you know just in case
    End of Joannes Posting

    I have researched and started taking this Ecklonia Cava Extract. What is very interesting is that apart from being a super anti oxidant etc, the extract is not water soluble, is fat soluble, is a bactericide and can cross the blood brain barrier. The significance of these features is that Ecklonia Cava Extract does not leave the body in 3 hours, persists longer, can enter the bodies nerve cells and will kill bacteria.

    My pain has gone, swelling is reducing and my issue now is rebuilding my thigh/buttock musculature.

    I think anybody who has Cipro related problems should try Ecklonia Cava Extract.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: