Here is my side of the story.
How to find me click here
I am so happy to share my Cipro toxicty recovery story with you and all that I have been through. Some of this story is a response to some Facebook groups diminishing my mission of spreading hope. Please know my family and I are happy now that the “darkest days” are behind us. I hope to help you all put this behind you.
My name is Jason Sousa and my Fluoroquinolone story – or should I say the day I became a floxie – started way back on December 2013. Before that I was an active athlete riding BMX bikes for radio Disney, going to the gym, working full time on my company and living life to the fullest. In December 2013, Dr. David Bae of South Coast Medical Group in Fall River gave me a 30 day prescription of Cipro for suspected prostatitis, and changed my life as I knew it.
Some time before seeing Dr. Bae, I came down with Lyme disease. I had so many symptoms which were mostly cleared up after a course of Doxycycline, but months later I had pelvic and joint pain which then led me to see Dr. Bae. I actually made it to pill 27 on that Cipro script, then gave up on the prescription. I felt great, I didn’t have any of the achilles pain he said I might get. But, a few months later at the gym my piriformis muscle in by butt popped and I had so much pain and shortness of breath. After a night in the ER, I had multiple tendon pains, insomnia, shortness of breath and many other symptoms shared in the floxie community.
Going into 2014, I realized I had FQ toxicity after reading stories on Floxie Hope. I am so grateful for that website and for Lisa who started it. This one website alone helped me put things together. After self diagnosing FQ toxicity, I was then able to convince a Lyme doctor in Milford, MA named Arthur Gertler, who was able to treat my lyme and FQ issues with IV therapy. That kept me going for awhile, but I still had massive muscle and weight loss among many other things. He, as with many other doctors in our medical system, just did not understand the FQ problem.
I maintained for a few years until late in 2017 when I suffered a huge relapse. I started to look at alternative treatments. My life was turned upside down as I chased possible cures and treatments down a rabbit hole and back up again. I then started to invest in these treatments, only steered by my own research and willingness to try anything as again, no doctor really understood what I was going through. In January of 2018, I went to GIOSTAR in Mexico for stems cells. That treatment did not work for me at all. Then In spring of 2018, I traveled to Bend, OR to see an amazing doctor named Payson Flattery who performed stem cells and exosomes which helped my hips tremendously. I was again okay for awhile, then experienced another relapse doing yard work in the early fall of 2018. I threw out my lower back and had a hard time standing up. So I reached out to Dr. Mark Ghalili for a phone consultation. He sounded amazing and super caring, however, I couldn’t figure out a way way to afford the whole treatment at that time. So what did I do? I went back to Mexico in October of 2018 to Stemaid.
I met a few floxies who had okay results with their 4 week program and I knew I could afford it. My wife and I went there together in hopes I would get better. You would think I would have learned my lesson the first time going to Mexico for medical treatment, right? Nope. I got so much worse from this treatment. I had all new tendon pain day to day and eventually lost about 20 pounds. Already borderline gaunt, I couldn’t afford to loose this amount of weight. In November of 2018, my reaction to everything or just this treatment alone surmounted to losing control of bodily function.
Let’s just say that Christmas 2018 came early for me and I bought myself a wheelchair from amazon. This was one of the hardest things for me to do emotionally. Keep in mind, I am an athlete at heart and before all of this happened, and even during some of the good times during my FQ toxicity, I was a very active individual. For the next six months I was in and out of a wheel chair, three of those months I depended on it almost everyday. My wife, fiancé at the time, had to help me to the bathroom at night because I could not get in my chair. This should not and could not be my life right? I almost gave up, and thank God I didn’t. With my last two credit cards I called Dr. Ghalili back and booked my treatment for the end of June 2019. I really want to thank Vanessa, Wendy, and Joy for telling me their story of healing and how Dr. G helped them. Their stories inspired me to trust the process and his expertise so much more. This is such a hard thing to do as a floxie, right? Countless doctors have empty promises and come with a heavy expense – not just financial.
If I could go back in time, I wish I had went to go see him despite my budget. Because, in hindsight I know I would have been better sooner. And, maybe some of these other treatments actually did more harm than good. Have you ever felt like that? Like, “maybe I’m taking too many supplements” or “avoiding too many foods”? His customized treatment helped me so much so quickly. I was able to walk again without fear of tearing something by the end of the first treatment – and there is no price you can put on that. So many people ask me my experience and I’ve always said it was great but if they ask me who they should see for treatment I’ve always said trust your gut and feel who fits your needs. No one’s FQ reaction is the same, and no treatment approach should be.
I have been in the Floxie community for almost a decade, and one of the many things I have developed is the skepticism of medical doctors. They are not all bad, trust me. I am so happy I was able to regain my life to the point that I was healthy enough to have our first baby in 2021. Don’t get me wrong, I am not all cured. Treatment is an ongoing pursuit, and I am getting the pieces of my life back day by day, but am healthy enough to build new pieces – And that my fellow floxies is an incredible feeling. I actually have hope again.
My current life is full. I am able to run my company Solas, which is a red light device manufacturer. This has become a hallmark moment in my life to get back to work and manufacturing devices that help people. You may have seen me post about my work on my Facebook group or pages… What can I say? …I love what I do. I just want to help and support others as I’ve been helped and supported. I want everyone to have the hope I have.
During that year, I also became a health coach to help anyone who needed a health check up. I have always loved nutrition and health, and I noticed my journey was missing someone who believed me and understood me. In no way is this a promotion for my services… I actually hope you do not need my services and that you are healthy and happy. But, I felt the need to legitimize my expertise and collaborate with other doctors and clients. I want to thank an amazing physician, Cathy Moore who gave me the courage to do this.
In 2020, I went full force into helping other floxies. First, I was an initial founder of FAAHA (Fluoroquinolone Antibiotic Awareness and Healing Alliance) The idea was simple, bring patients to doctors who want to treat this issue and all work together and share information to help those affected. Some initial members were Dr. Hanson, Dr. Ghalili, Heather Slusher and myself, to name a few.
For the last FAAHA event, I invited Dr Marc Harris, a friend of mine and mitochondrial doctor who helped the team learn techniques to aid treatment. I also presented on some of what I know about peptides. Months following the event, I was disappointed that the presentation deck and other information was not shared to certain members. The initial purpose of the group was to share as much information as possible, to collaborate and to ultimately help Floxies – not to be in competition of who is treating how ever many with whatever success rate. Unfortunately, I decided to leave FAAHA because I felt the mission shifted and it was not inline with my integrity to share information with as many people as possible to help as many people as we can collectively.
I started an amazing Facebook group called Healing Floxing to document my journey and I am happy to report it has seemed to help so many. In doing so I left some of the larger Facebook groups because of a few reasons I will get into next. This Facebook group (shown here) kicked me out because I shared my recovery journey going to see Dr. G. After messaging the admin Cora Archer I complied and stopped posting my story then was kicked out. The admins had no problem posting my Stemaid disaster but kept my healing story from the site. That same group now blocks all posts from Floxie Hope, can you believe that? I left a few other groups because I could not handle the negativity or fear of being bullied. I feel some of these Facebook groups provide false information, prevent those looking for treatment from getting it, and actually have shared false information about me which is truly sad as there is already enough pain in this community.
One important element in my story of helping floxies was one day in 2020 when Lisa Bloomquist reached out to me. I have known Lisa since 2013 and I cannot say enough good things about her. She reached out and asked me one thing. She said, “Jason I want you to be the steward of Floxie Hope because I want to retire”. I said to her “out of everyone you could have picked, why me?”. She stated that Floxie Hope needed someone who is positive, honest and can share hope. She said she saw all those qualities in me through the Facebook group I created. Flattered and nervous to fill her shoes, I signed up for the stewardship and am trying my best to help send the message of hope to others.
In closing, I’d like to clear up some of the news you may have read about me. I have been transparent and honest about all my treatments, progress and heck even my personal life and business but I’ve learned that what they say is true… “when you put yourself out there you also become a target”.
I was vocal on Facebook about all my treatments, but for some reason when I went to see Dr. G and spoke about my recovery, I was kicked out of a Facebook group and then heard they were spreading false statements whereby I was paid to share my story, which is far from the truth. I know, terrible, right? But it happened, and here is a receipt from one of my treatments. I have no financial gain from any doctor period.
I am a health coach and some have stated that I manipulate floxies for my services. In no way is this true. If someone hires me to be their coach, that is their decision. I have experience with altered health, nutrition and fitness. If you type my name in the search bar on Facebook you’ll see many comments surface helping people for free for years across many different ailments. I became a health coach to COACH people, floxie or not. It is my career, and like any career I need to get paid for it just like anyone who works a job. I help single moms with hormone problems, men with low libido and some floxies. The point is I am helping people paid and unpaid. My purpose is to serve
Now that I am the caretaker of Floxie Hope many have stated false rumors about this page. Let me be clear Floxie Hope does not sell anything. Nor does Floxie hope get paid or “work” with certain doctors. Heck my postpartum wife is offering free therapy for floxies because she is a therapist and gets us floxies. Floxie Hope has the same affiliate links that Lisa had on the site which does not make enough every month to pay for the site or podcast, I pay for that. I just hope the countless hours spent producing content and podcast helps other floxies that is my mission and now my life. I hope you can help me help others find hope and healing here on Floxie Hope.
Bless you all and I am sending you a big hug, because after this week, I know I need one.
Not stressing out
Getting off horrible Facebook groups
Laughing with and loving family and friends
Playing with my dogs
Supplements and Treatments were just a piece of my puzzle.
Where you can find me
The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.
Thank you for sharing this story, I always enjoy reading them. And thanks to the host for getting these out to all of us. I am wondering though if there could be more editing after the transcription is done, just to fine-tune the sentences.
Thank you for sharing you story. I’m so happy for you that you have regained you health and can enjoy family and friends again. I’m so sorry that you had to endure attacks about your character and motives. The stories that you share on Floxie Hope are so inspiring. God bless you!!!!
Thank you for sharing. After 2 1/2 yrs of dealing with every symptom imaginable, I had an ECHO done this past week which shows an aortic root dilatation, which us basically an aortic aneurysm. I am so scared, and so depressed, and quite frankly, just so tired. Nobody understands, and doctors here dont want to hear it. The psychological side effects make the physical side effects 10x worse. Please pray for me. I dont want to die.
Thank you, Jason! I really appreciate your dedication helping those floxed. You offer HOPE! Hope to gain back some normalcy in our lives. You listen and make suggestions, something none of the many doctors I see have ever done. I’m pretty sure they think we are crazy and label us with fibromyalgia. A label applied to me by a rheumatologist back in 2000, and continues to be used as a diagnosis. Having worked in health care for over 30 years, I have heard first hand the negative comments made by doctors, PAs, and NPs during my 23 years working in ICU, procedures, and the clinic setting. There have been many providers who are caring and supportive, non -labelers, but, there have been many who are labelers. Even some nurses are negative labelers.
I have suffered with FQ ( 2 separate Avelox RXs fall 1999 & winter of 2000) since 2000. Has been extremely tough. It changed my life forever. I will turn 60 years old soon. I have felttl like I am 80 since my 30’s.
Sadly, I have not found anyone in Georgia who can help. I have wanted to see Dr. Gahili, saw him on the Doctor’s., but getting time off from work, plus the expense of flying to CA is prohibitive. I may have to take FMLA and fly to CA to see him.
I supplement with turmeric, alpha linoleic acid, magnesium, and I get 2 glutathione infusions a month. They help some.
Since 2000, I have had multiple physical issues in this order: plantar fasciaitis, intense lower extremity muscle aches and weakness, spine pain, insomnia, carpal tunnel pain, lumbar fusion of L5-S1, neuropathies, depression, then anxiety after the fusion (didn’t think would recover enough to get back to work [out for 6 months]), continued muscle weakness, fatigue, Achilles tendonitis, spine degenerative disc disease, facet joint arthritis, osteoarthritis, cervical disc buldges (from chronic cough after an URI), exerbation of FQ issues after completing a medrol dose pack for the cough, bilateral carpal tunnel release, bilateral thumb trigger finger, bilateral rotator cuff tears. I will need to have a L-4 L-5 fusion, 2012. Saw an upper motor neuron at Mayo Clinic, Jacksonville, FL after the FQ flair. Found out I had had a very small pons stroke plus a small vascular event of frontal load too small to classify as a stroke. Severe carpal tunnel diagnoses with an EMG. The carpal tunnel pain was manageable with splints at night before the steroid FQ flair. Pain was so intense I sleep with sleep meds and taking 600 mg gabapentin three times a day.
I take many meds to treat chronic symptoms:
1- duloxetine for back pain/neuropathies (side effects: elevated BP and pulse rate 200/100, pulse rate 80s (baseline 50s). I think the duloxetine lead to the stroke. Ended up on 4 BP meds to get BP & HR down to normal.
50 pound weight gain eating a healthy diet. I have been able to stop the duloxetin once for 2 years and lost the 50 pounds eating the same healthy diet. After the FQ flair I ha to go back on the duloxetine. I gaind back the 50 pounds.
Now I gave sleep apnea from the weight gain and just started CPAP. I do fell les sleepy in the day using CPAP.
Duloxetine has helped the anxiety tremendously.
Duloxetine has many benefits for me and it has many side effects, thus the 4 BP meds.
I now only take duloxetine 30 mg capsule every 3 days, down from every day. My symptoms are bearable at this dosing schedule.
2- gabapentin neuropathic and helps with sleep
3- Seroquel and trazodone for sleep
4- meloxicam, 20 mg every 3 days, down from daily. Have taken an NSAID since 2000. I have my creatinine and GFR, and liver function labs done every 6 – 12 months depending on how often I see my PCP.
I work as a telephone triage RN in a neurology office. I have heard some conversations about FQ linked to myasthenia gravis. This may explain why I become extremely weak when I try to work in my yard putting our grass fertilizer or if I try to mow the grass with a self-propelled Honda mower.
I used to play tennis and work in my yard often, two hobbies I loved. I cannot walk very far due to lower back muscles spasms. Think I need to have the fusion done, but waiting as long as I can to avoid the surgery. Thankfully I have a very skilled neurosurgeon. I spend most of my time in the bed after work and on the weekend.
Sorry for such a long message.
Praying for you that you continue to heal, enjoy your family, and that you do not waver in your desire to offer hope, healing, and support to the FQ world.
thank you for your story! you’re so lucky to have worked with dr G. I hope I can get better without going to see him as I cannot afford to fly from Europe. Bless you!!!
For a long time I’ve known of the danger of these kind of drugs. My wife recently went through chemo for her cancer and had minimal white cells so she had neutropenia. They gave her cipro for a just in case broad spectrum antibiotic because an infection is dangerous to someone with neutropenia. She had many, many bags of cipro through an IV. In the end she can’t walk and has peripheral neuropathy in both lower legs and feet. On several occasions I mentioned my concerns of cipro to the doctors and they all said risk / reward. She is now in rehab and has stood with a walker. The hospital blames chemo, which it could be but it could also be from the cipro. It seems to me that the doctors don’t want to think or talk about the side effects of the fluoroquinolones.
I was reading an article from Baylor University and the article was all about better control mechanism of when and how to use fluoroquinolones. The article mentioned other broad spectrum antibiotics that could be used instead of the fluoroquinolones, drugs that don’t have the same side effects of say a cipro. So why use cipro. Is it because cipro is cheap and I think cipro is even cheaper than Levofloxacin.
I can’t say if it was the chemo or the cipro that caused my wifes problems but looking at my doctor rounding notes, she was ok after the end of chemo. Then the next two weeks of cipro things went bad.
Until doctors are sued for the use of these meds it will not stop. Its almost like nobody cares.
“There was no significant change in fluoroquinolone prescription rates after the FDA boxed warning. The majority of inappropriate fluoroquinolone prescriptions were given for the management of uUTI.”
“Nearly 56% of the prescriptions examined were inappropriate in terms of the specific antibiotic prescribed, the duration of treatment, or the illnesses for which they were given.”
Thanks for your story Jason. The group you talked about, I left to. The rules were ridiculous.I can never understand people who get so much quality information for free , then object to some one making a living to support his family. No one forces any one to buy or do anything, so what’s the problem. Anyway, congrads on your new addition to your family, take no notice of the other idiots. There are so many that love and respect you and can see you are a decent human being. Thanks for all you do. If your good enough for Lisa, that’s the best endorsment you can get.
Many congratulations on your recovery. Thanks for your dedication to this site.
I have been floxed and i have all the symptoms of mitochondrial myopathy. Is that really what we are all suffering from i wonder. Have you talked to anyone that has had a muscle biopsy after being floxed. I have doctors wanting to do so and i not sure if it is really worth it.
Thanks, Jason. You have helped and guided many people. Good luck to you and congrats on the recovery.
Congrats that you totally commercialize floxiehope and the suffering of those people.
” Now that I am the caretaker of Floxie Hope many have stated false rumors about this page. Let me be clear Floxie Hope does not sell anything. Nor does Floxie hope get paid or “work” with certain doctors.”
You are a crook and liar, because all those ads on floxiehope have affiliate ID’s, one can see this by rightclicking on them and “copy link adress” .
Also most floxies simply recover over the years with a clean diet and some supplements like the old floxiehope stories proved. Suddenly since you took over nobody heals anymore without a $30,000 therapy of an alleged miracle doctor.
You would be a fool to advertise “Dr. G” for free and as you are an clever business mean who runs own companies you know this too and take your share.
THANK YOU FOR SHARING…..
Did the 2nd stem cell therapy help? More importantly did exosome help? I am thinking of doing that as it’s much less invasive than a stem cell which looks incredibly painful with a bone marrow aspiration. Who wants to go thru that torture. From what I understand exosomes are just a quick injection. But it’s like 5k with a local functional medicine doctor. Any insight is appreciated
Thank you for sharing your story Jason and above all for continuing with Floxiehope. I have never joined a Facebook group as I am not on Facebook but Floxiehope has been an almost daily visit since I first found out about floxing in 2015. Putting together the pieces I realised I had first been floxed 30 years ago and at least 4 times so I have been dealing with this health issue for a long time. Many of my floxing symptoms have improved and cycles have become longer but I am left with severe skeletal issues that I fear will never resolve as age does not help. I have had one hip replacement ( x ray showed no cartilage at all) and am facing another in Sept. Knees are also going. Congratulations on your new family member and keep up the good work. Ignore these disgruntled trolls as Barbara says. Best wishes for your continuing recovery.
hi Jason, thanks for your story. i am currently going through symptoms cypro gave me as well, after it was prescribed for what docs think is prostatitis.
from what i understand, you were treated with cypro for prostatitis as well. aside all the issues cypro gave you, did your prostatitis get cured by cypro?
seems like it did nothing for me. did you ever find cure for your prostatitis?