Why All Recovered Floxies Are Only 99% Better

Every Friday Michelle Polacinski, a Floxie as well as the Director and Producer of ‘Floxed,’ sends out a newsletter to those who have subscribed to the ‘Floxed’ newsletter. The Floxed Friday updates are always interesting and thoughtful, and Michelle has given me permission to share them here. 
 
If you would like to receive the Floxed Friday updates directly from Michelle, please subscribe to the Floxed Documentary email list. You can subscribe through THIS LINK. Subscribing also helps Michelle to gain funding for the Floxed Documentary, and she doesn’t send out spam. 
 
The following was written by Michelle: 

It’s hard to bounce back from Fluoroquinolone Toxicity Syndrome. In fact, many people never do. For those who do, you may ask, How do you feel? Are you back to normal? Are you at 100%?

I don’t know a single floxie comfortable with saying they are 100% better. I never have. I also don’t think it’s possible to be “back to normal” or to who you were previously when something like this happens to you.

It’s traumatic. It changes your perspectives on life, on the medical system, on what the heck an antibiotic is, on what you put in your body, and the significance of everyday things. How can you ever be back to who you were, especially when you come back from a horrifying disability?

And no, rarely anyone can say they are 100% better because flare ups happen. Some symptoms never go away. Even if you feel good for years, one day you wake up with the worst chest pain in your life and you wonder, “Is this an aortic aneurysm?”

EBV and Nerve Damage:

I felt this way more recently with the onset of Epstein-Barr virus, which affects approximately 90% of the population, commonly known as mononucleosis or “mono,” and going back to a lot of the same supplements I took every day for years when I was at my worst.

I’ve been dealing with numbness in my hands again and it’s horribly frustrating. This came up after taking cacao, a neurostimulant, and it made me wonder, Are my hands getting better or worse?

A thing we floxies say is that “healing comes in waves.” Really. You’ll feel a symptom and it may come and go over the matter of a few days or weeks or months before you start to feel it get better. Maybe my long-time nerve damage in my hands is going through a healing process again thanks to the cacao or maybe it’s getting worse. I’ll never know and there is probably no PhD, no expert on Planet Earth, who has the answer to that question, so I just have to wait it out like everything else.

So for now, my pee is bright yellow all thanks to high levels of b-vitamins in my system, you know, to stimulate nerve healing, mitochondria healing, and all that stuff. Amy Moser mentioned in our interview that it takes about a month for one inch of nerve to heal and that her nerves are forever damaged after 8 years, so she believes.

Who knows?

What’s next for the Floxed Team:

We have awesome news to share.
We’re finally all meeting in Los Angeles to shoot some of our bigger interviews (shh) with some big researchers and medical professionals in the field next month.

I’m very excited since LA was my home when I was floxed and I can’t wait to meet some of these people I’ve only spoken to online or over the phone. I’ll be meeting even more friends/floxie family while we’re out there and this is my first time back home since getting floxed.

We’re also applying to more grants and we feel very positive about them, especially one that particularly focuses on female filmmakers making films about disability awareness (heck yeah we are).

***Wish us luck and please cross all your fingers and toes that we can get some of these grants. It would push the process along much faster***

Have a great weekend!

Best,

Michelle Polacinski
Floxie, Director, and Producer of ‘Floxed’

 

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24 thoughts on “Why All Recovered Floxies Are Only 99% Better

  1. Stacey Siebenlist July 26, 2019 at 8:02 am Reply

    Hi Lisa, I just read this and have a few concerns about it.

    As you well know because you created Floxie Hope that people need hope not fear. I found this article to be more in the depressing column then the positive one.

    Mentioning an aortic aneurysm is something that will put the fear in people who are recently floxed or still struggling. An aneurysm from the antibiotic is something that would happen very early on not years later. Numbness can come from a pinched nerve etc.

    People who are floxed need to learn how to live their best lives where they are everyday with their healing. People get toxicities from paint from metal and a number of other things. Our bodies were made to heal themselves, it’s actually amazing.

    I’m sorry this gal is having numbness etc I know the torture of it. But I also know the power of being positive and living your best life today, whatever that means.

    I appreciate all you do for the community and when I was floxed 8 years ago the creation of your site was enormous to my healing.

    Healing from this toxicity is physical and mental. But can be done!

    Prayers for everyone to heal to the best of their ability.

    Thank you Lisa, Stacey Siebenlist

    • Jonathan Edelman July 26, 2019 at 8:56 am Reply

      I agree. This site is supposed to keep us hopeful that we can heal. This article makes me feel hopeless. While what she said is true. I need light at the end of the tunnel. I’m suffering so much from this poison including tinnitus which makes life so difficult. This post makes me feel like there is endless suffering. I would expect this from the community, but not from someone who represents the program. Nerves can heal in time. However some nerve damage is permanent and some loss of sensation can be permanent. Neuropathy is progressive so continued diligence for life is a must. Exercise, avoiding toxins, proper nutrients and control of blood sugar will minimize this diabolical condition. Even if you feel better, then you have to work even harder to protect your valuable asset, your health. Not go back and start eating crap again. To survive adversity like this you have to have the right attitude. You have to be willing to keep fighting and never give up nor let your guard down. Please be more careful when’s sending this community of hurt and suffering people dark and depressing messages on Friday. I want something to look forward to that motivates me to keep fighting. This article does not deliver hope. Very bad.

  2. Honestly July 26, 2019 at 9:02 am Reply

    Thanks, Michelle. I appreciate updates on fluoroquinolone side effects/exposure, especially if you have an issue in the future or a chronic disability. This knowledge is healing for me. It’s true that it changes your life and you’ll never be the same nor want to be from what you have both experienced and learned. Sorry to here about your additional health challenges – is this any help? “Cranial and peripheral neuropathy due to Epstein-Barr virus infection”.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2431413

  3. Aidan G Walsh July 26, 2019 at 9:03 am Reply

    You all should be dropping by to see Dr. Ron Davis & maybe a good idea give him your blood, urine, hair samples have him look to see if any of his latest findings are in you I have mentioned to them countless times the fact many poisoned by antibiotics, he also

    found a Genetic mutation in IDO-1 we have both IDO-1 & IDO-2 the mutation one has been shut down & he says people are in a metabolic trap his Son is seriously ill the Open Medicine Foundation is involved with him at Stanford I suggest if you can go & see him

    tell him your stories give him samples, maybe something you took can help Millions Sick now also he says 75% are now likely to get Sick with this mutation it may also explain the antibiotics poisons. They will also run the Genetic test if you ask as well so please get in t

    touch with Dr. Ron Davis at Stanford hr is a gifted dedicated talented World-renowned Scientist he is tops in his field he wants answers for Millions now…thanks

  4. Madge Hirsch July 26, 2019 at 9:06 am Reply

    Hope is one thing -realism is also important. I believe that I have been floxed at least 4 times over a 30 year period though I only found out about FQ toxicity in 2015 after the last time. I never recovered 100% between floxings and the 2nd and 3rd were 15 years apart. How do you know that an aortic aneurism is not possible years after being floxed? If you can rupture a tendon years later due to collagen degeneration why not a blood vessel? This article is realistic – recovering from floxing is for many if not most having to live with new normals especially for the older population and coping with relapses. If you are fully recovered after 8 years you are lucky.

    • Dion Schwulst August 9, 2019 at 9:49 am Reply

      I TOTALLY concur with your words, Madge. This type article is not meant to be depressing but instead allow enlightment into the reality. Hope is much like ‘thoughts and prayers’ nice but not the actuality of the dis-ease.

      Need to hear all aspects for balance. Helps one choose what to keep and what to leave behind.

      Never give up! 🤗👍❤

  5. Tikvah Duesterbeck July 26, 2019 at 9:39 am Reply

    I am going into my 6th year of being floxed, and if I had to estimate a %, I would say 50% – 60% recovered. I still have a lot of problems that have yet to be resolved. Right now it’s all about pain management and a daily battle with activities . I am so grateful that my husband stands behind me and understand, and I am very grateful for prayers and how far I have come as of today. I speak life into myself and my surroundings, and not death and destruction. I am a daughter of The Most High, The Living ELohim, the ELohim of the Living.

  6. Chris July 26, 2019 at 10:19 am Reply

    Very interesting. I am at year 3 and have healed about 80%-90%. I have been back and forth to so many specialists in San Diego I cant even remember how many I have seen. They now admit it was side effects from the Cipro and to keep doing what I am doing. Probiotics, watch what I eat and drink, lose weight and maintain a proper pulse and blood pressure. I have done all that and feel a lot better but a simple drink of a soda with caffeine and I relapse. A bowl of ice cream and I relapse. They have all said I have new sensitivity to foods and drinks now and have to avoid a lot of things now. Even extreme exercise like running or lifting weight makes me relapse so I do a lot of walking. Reading also helps. Anyway thanks for sharing.

    • Elaine July 26, 2019 at 11:08 am Reply

      Wow!! That is a pretty negative message to send to recovering floxies!! I respectfully disagree that you can’t heal back to 100%! I think many floxies do, some do not and of course some struggle on for years with symptoms and issues. As a recovering Floxie we all know that healing is a timely process and different for every floxie. But to send a message to this extremely fragile community of healing floxies that most likely we will never heal 100% is not encouraging but discouraging at the very least. I am 2 years out and am mostly healed but am battling a few lingering symptoms. I would like to believe that they will fade or disappear in time. I would like to believe that I can heal 100% and I am older in my sixties too. Please be sensitive to the fact that recovering floxies are extremely fragile especially mentally and emotionally. We need hopeful and uplifting messages. Wow talk about putting the fear of God into us saying you were scared you might be having an aortic aneurysm was enough to get my heart rate up!! Please please be more sensitive in what you post. Lisa…you are a Godsend for having this site but I just wanted the writer to know and you that this was a pretty upsetting article. I know all about reality and I know I may never be 100% healed but I look to this site for hope and faith. I think we all do.

      • tikvahshua July 26, 2019 at 11:34 am Reply

        Elaine, I believe that Lisa is VERY sensitive and VERY honest and a wonderful researcher and help in this field. I think it’s VERY important that she be honest about all of the symptoms and what she has felt and found out so others who have had the same experiences or similar know that they are not the only ones going through it or something or some sympton similar.

        So don’t let it get you upset, be grateful that she has shared and continues to share things like this so everyone can be on the lookout for things like these.

        Blessings

      • Dion Schwulst August 9, 2019 at 9:56 am Reply

        Along with ‘hope and faith’ is the reality of the dis-ease and its consequences. Only negative if you choose to ‘hear’ it as such.

        Some of us also need to hear the other side as it is presented and developing for others. We like the realism.

        There are ups and there are downs. Let’s hear it all and take what we want personally and leave the rest. To not do so is perhaps being over-sensitive . Just sayin’ . . . 👍❤

    • Lukasz July 30, 2019 at 12:56 pm Reply

      Chris,

      You too, huh? Soda, ice cream and weight lifting, all make my situation worse and I see I’m not the only one.

      Easy for these doctors to say that we now have “new sensitivity to food and drinks” and that we “have to avoid a lot of things now”. They can eat whatever the hell they want while the rest of us have to live on organic fruits and vegetables. The injustice of all this is just incredible.

      Glad you’re feeling better though.

      • Lukasz July 30, 2019 at 1:08 pm Reply

        To add what I wrote above, I think at some point I’m just going to say f***k it and eat whatever the hell makes me happy. I’ve seen others on here who’ve said they don’t watch what they eat and are just as recovered as anyone else.

        • Dion Schwulst August 9, 2019 at 9:58 am

          Loved this post! 🤣👍😘

      • Tikvah Duesterbeck July 30, 2019 at 2:53 pm Reply

        I too must be careful w/ certain foods that set me off. I must ONLY eat organic meats w/ no antibiotics, if I eat it all all and other things set me off too.

        • Lukasz July 30, 2019 at 5:46 pm

          Sorry to hear this, Tikvah. I wish none of us would have these food sensitivities and intolerances but the harsh reality is that too many of us do. Pretty soon, the number of people with these sensitivities and intolerances will outnumber the people without. That’s Big Pharma’s goal anyway.

  7. Lisa July 26, 2019 at 11:32 am Reply

    This post struck a negative chord for many people. I’m sorry that it made some of you feel hopeless or down! Personally, I perceive a 99% recovery to be quite good. I have fully recovered in almost every way. But my toilet will attest that my gut health isn’t ideal. Should I call myself 99% recovered instead of 100% recovered? I don’t know to be honest with you. It’s difficult to tell at this point whether or not my gut inflammation issues are from being floxed (probably, but it’s possible that they’re from my diet, or from getting older, or some other factor). Even with gut inflammation issues, I AM recovered. I can hike and camp with my family, I can eat a variety of foods, I can sleep, I can work, etc. etc. I hope that things like my ongoing gut issues don’t make anyone think that recovery isn’t possible. I think that what Michelle was saying is that she still has lingering issues, and that many other recovered floxies do too. It’s really difficult to say when, and if, these lingering issues will resolve. BUT, there are recovered floxies who are living a good and normal and happy life, and 99% is pretty darn good.

    Hugs,
    Lisa

  8. Mariaan July 26, 2019 at 11:34 am Reply

    good luck to you all, wish there was more awareness in South Africa about being floxed

    be blessed

  9. Cipro2017 July 28, 2019 at 4:43 pm Reply

    After a serious trauma, consequences are visible in every human being. no one will forget this trauma just like that. There is a lifelong scar that you can not see. Therefore, many victims also develop secondary anxiety. if you have abdominal pain you think of an aneurysm. When your hands have fallen asleep you think of the recurring neuropathy.
    You are always reminded of this trauma but you must not forget that the most serious complications are really very rare and that other illnesses can come regardless of FQ.

  10. Honestly July 28, 2019 at 7:31 pm Reply

    Cipro 2017 having a serious antibiotic given for possible uti etc without being given any conscious informed consent only to learn of the side effects experienced after taking them that doctors and others deny can make anyone feel gaslighted or be anxiety producing. Since there are a lot of negative effects,the floxed can experience, it’s not abnormal or “anxiety” just for questioning if another issue is related. Thank you Lisa for keeping us updated and posting survivor stories!

  11. Lukasz July 30, 2019 at 12:38 pm Reply

    With all due respect to both sides, I can see how the above article can displease some individuals. It’s viewpoint is rather realistic and in some ways, raw. Many people on here, including myself, have severe nerve damage and get easily irritated. This is the cost of being poisoned. On the other hand, I think Lisa has done a wonderful job of allowing us to have a forum where we can vent and share our feelings, whether they be positive or negative. Let’s be honest, this is a life and death situation for many of us and if we are to hold back our true feelings, then we are not being true to ourselves or the situation. In my personal view, I think we should allow guest writers, like Michelle, to express herself in an open manner without the fear of a backlash. She is, afterall, expressing how she’s feeling and her viewpoint of not everyone returning to 100% health isn’t wrong, it’s just raw and honest. I for one, applaud her honesty.

    I don’t mean to anger anyone, I just feel that freedom of expression shouldn’t be censored.

  12. Dion August 9, 2019 at 9:31 am Reply

    Thank you for ‘Floxed Fridays’ and all you do. Keeps me going and informed.

    Wouldn’t wish this on anyone. 😦

    Sending out healing/wellness to ALL who suffer ~ 🤗❤

  13. t3dgm September 11, 2019 at 10:53 am Reply

    I’m almost five years out and sometimes I still struggle, but fighting to get stable. Looks like we are living on the edge now and we must take care with food, stress and toxins in order to mantain a relatively good homeostasis. Never give up, there are many of us that aren’t full recovered but are living a normal life again.

  14. Remus Piricsi November 7, 2019 at 6:54 pm Reply

    The article was fine ,the aortic aneurysm could have been left out let’s not forget these pills are still being given out like m&m’s.There’s probably somebody at home right now going through all this for the first time freaking out feeling like they might get an aneurysm.

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