Tag Archives: cipro recovery

Lisa’s Update

One Year Update Pic

I wrote my recovery story about a year ago. A lot changes in a year, so I thought I’d write an update.

I was pretty well recovered when I wrote my story. In most areas, I was about 95% of my pre-flox capacity. I could do most of the physical and mental things that I needed and wanted to do to with relative ease. I could walk, hike, do pilates, swim, dance, work, have good conversations with my friends, maintain relationships, etc. I was healthy enough and life was good. I would have felt fine about staying in the condition that I was a year ago indefinitely.

It has been a nice surprise that I have continued to get better. Little things have improved/gone back to how they were pre-flox.

I started sweating again. I was kind of enjoying not sweating, but it’s good to have that part of my autonomic nervous system working normally again.

I stopped being cold all the time. I had a hard time feeling warm for a long time after taking cipro. Sometime in the last year my body has gone back to its normal – being “hot blooded” (I’m Swedish).

I feel like I felt pre-flox when drinking coffee and alcohol. It’s difficult for me to describe how I felt different after having caffeine or alcohol while I was sick – but it just felt different – and now it feels normal again.

I went through a period of nausea in the last year. For a couple of months, I couldn’t eat without feeling nauseous. I’m not sure if the nausea was because of a break-up that I went through right before it started (lots of people don’t eat for a while after a break-up), if it was a floxing symptom, or if it was a combination – my digestive tract shuts down now when I go through a period of stress. Whatever the source, it went away when I started supplementing hydrochloric acid (HCL – stomach acid).

I also had some issues with feeling a tightness in my chest that went away when I started supplementing HCL.

My mental capacity is as good as it was before I got floxed. It may even be better than it was pre-flox. I had no interest in biochem before I started researching how fluoroquinolones work – now I read biochem articles for fun, and they’re making me smarter. Also, my writing has gotten better – which is nice.

My energy, endurance, flexibility and strength have continued to improve. It’s difficult to tell if I am capable of as much physical activity now as I was before I got floxed for a couple of reasons. First, I am a bit out of shape. I have an office job so I sit for 8 hours a day. That’s not good for anyone’s physical fitness. Getting floxed certainly didn’t help, as it left me completely sedentary for a while and semi-sedentary for a while after that. Second, I was in really excellent physical condition before I got floxed. I’m not sure how fair it is to compare myself to how I was 2.5-3.5 years ago because I was really fit at that point in my life. Anyhow, those are details. My point is that I’m doing well physically. I can keep up with my boyfriend (who has never touched a fluoroquinolone) while hiking, swimming, etc.

I still struggle a bit with my motivation. I felt like cipro stole my “give a damn.” I’m very passionate about exposing the dangers of fluoroquinolones, and about helping people through fluoroquinolone toxicity, but I still struggle to “give a damn” about other areas of my life. It’s getting better though.

My level of fearfulness has subsided over the last year. (It had actually improved tremendously a year ago when I wrote my story – it was horrible when I first got floxed – I was terrified.) It has taken a long time for me to convince myself that this isn’t going to kill me. I can’t say that the fear about the consequences of the cellular damage done is completely gone. But I can say that I feel good right now. It’s not going to kill me today. Today, I’m doing well.

Diet – I am not on any specific diet. I avoid junk food but other than that, I eat whatever. Food does affect how I feel, but I don’t think that it affects how I feel any more than it did before I got floxed.

Supplements – I’ve switched out my supplements a bit. I still take iron (Pur Absorb 5 mg/day) and I still think that it helps me a lot. I also think that magnesium (250 mgs. Chelated mag/day) helps me. Lecithin helped to clear my brain fog. Hydrochloric acid (HCL) helped to get rid of my nausea and heartburn. I also take a fish-oil supplement, chlorella, glucosamine, vitamin D3, vitamin K2, coenzyme Q10 and a probiotic.

Food Supplements – These supplements are actually food, so I’m putting them into a different category from the supplements. I think that all of them have helped me a lot. Brewer’s yeast – it’s full of B vitamins, amino acids, trace minerals and has things like uridine and iodine in it that are helpful. I think that brewer’s yeast has helped me a lot. Cod liver oil – full of good fats. Raw crushed garlic – for the thiamine and other nutrients. Beets – they make me feel better (nitric oxide??) – do NOT get scared when you pee/poo purple after eating beets.

Exercise – I still find pilates, swimming and walking to be very therapeutic. I haven’t been as diligent in sticking with them this year as I was the year before.

Meditation – I still think that meditation is a wonderful thing for everyone to do. I have gotten horribly lazy about doing it myself.

Acupuncture – I go to my acupuncturist about once a quarter now. I was going at least once a month previously.

Staying off the internet – I’ll give myself a big fat F- on this one. Being involved in floxie stuff over the internet doesn’t induce anxiety for me any more though – so I don’t think that it’s unhealthy for me that I concentrate on it too much.

Having a positive attitude – I think that I’m still doing pretty well with this one. It has been wonderful and touching to have a group of positive people commenting on this site – letting their fellow floxies know what they know – and everyone encouraging each other and having faith in the notion that this too shall pass. I thank everyone who has supported a floxie through their time of need with a positive attitude and/or words of wisdom.

As I have gotten healthier and healthier, I have become less diligent about doing the things that helped me to get to a place of health. It would probably be better for my continued health if I was more diligent about sticking with them. Oh well. I think that it’s relatively normal to get lazy about doing the things that you did to get healthy once you have reached a point where you feel healthy enough.

I consider myself to be 99-100% recovered.

I am very, very, very lucky.

I wish luck, healing and recovery for all of you! I know that a complete recovery is not possible for everyone, and, well, read this about partial recoveries – https://floxiehope.com/2014/03/05/redefining-recovery/. I like the quote at the end of it, “Healing doesn’t mean the damage never existed. It means the damage no longer controls our lives.” If a full recovery isn’t possible, I wish you a recovery in which the damage no longer controls your life.

I am incredibly grateful for everything that I have gained in the last year. This site has reached more people, and touched more lives, than I could have possibly imagined a year ago. More people have read, and cared about, my healing story than I ever could have imagined. I hope that it has helped you. I hope that this follow-up, letting you know that the improvements have continued for me, give you even more hope for your own healing.

Xoxo

-Lisa

 

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Keep Going

A friend wrote this to me –

Dear Lisa,

I don’t believe I am going to get better, and I don’t know what to do anymore. This feels like a nightmare from which I cannot wake up. I know people say to stay positive, but I don’t know how, especially when, every day, I read comments in the group with people who are several years out, and have not improved. I know people say everyone is different, but after more than a year, I have a feeling I am one of the unfortunate few that never recover. What should I do?

Here is my response –

Dearest friend,

I think that you should just keep going. That’s all that is really required of you, or anyone else – just not giving up. In not giving up you are being hopeful. Eventually, it will become easier to not give up. Eventually, it will be effortless. At least that’s what I hope for you.

I recently got an email from someone who recovered after 8 years. 8 years is frightening, for sure. But she recovered. It did happen.

I encourage you to find something that makes you feel just a little bit better. Maybe that’s sunshine, or funny movies, or acupuncture, or magnesium, or whatever – and do that thing every day until the little incremental improvements add up.

And just don’t give up.

Try to believe that it will get better. It’s okay to not always believe that you will improve. But as long as you’re not giving up, things will change. Maybe they will change for the better. I hope that for you!

That’s what I think you should do. I hope that what I said doesn’t seem to trivialize your situation in any way. I know that it’s scary and I know that fear that it won’t end is normal. I think that just continuing on is difficult sometimes. That’s what I suggest you do though.

Love,

Lisa

Post Script To All:

I wish you all healing, love, happiness, recovery and everything else that your heart desires.  I’m sorry that this whole ordeal happened to you.  I’m sorry for the pain.  I’m sorry for the suffering.  I’m sorry for the fear and the hopelessness.  I hope that it all passes.  I hope that you find your way back to health and happiness.

I know that sometimes it feels like it won’t pass, like you’re stuck in a hole and will never be able to crawl out of it.  It will pass though.  I can’t promise that you will recover completely, or that you’ll get your former abilities, or yourself, back.  But I can promise you that this difficult moment will pass.  It will change.  Eventually you will stop falling down the hole, and you will start to improve; to emerge.

When you emerge, you’ll have all sorts of gifts that you didn’t ever want.  Empathy and compassion for those with chronic, mysterious diseases, patience for yourself, faith in your resilience, etc.  Those things are possible.  They’re down that hole – look around and you’ll find them.

I am inclined to write trite sayings about this, and I’m not sure if they help or hurt.  Hang in there.  It will pass.  Breathe.  And just keep going.  That is my advice.

And know, in every part of your being, in every breath you take, that you are loved.

It helps.  I swear, it does.

Love,

Lisa

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A Return to Hope

I’ve been doing a lot of research into the mechanisms of action for fluoroquinolones lately.  I’ve been passing what I’ve learned on Floxie Hope.  Unfortunately, much of what I’ve learned hasn’t fallen into the “hopeful” category.  Most of what I’ve learned has been pretty grim.  Fluroquinolones deplete DNA, damage mitochondria, stimulate lymphocytes (immune system cells) deplete irreplaceable enzymes and produce neurotoxins.  Bummer, huh?

In a weird, twisted way, I get excited about these discoveries.  They’re the nails that are going to seal the coffin on these drugs, and maybe even Bayer and Johnson & Johnson.  I imagine these facts bursting into common consciousness with an expose in Time, Scientific American or The New Yorker.  I get excited about being right, about being at the forefront of this problem, about being able to tell people, “I told you so” when they realize that quinolone toxicity is a huge problem that is adversely affecting the lives of millions of people.  Irrefutably showing the danger of these drugs is key to getting their use curbed, to stopping the atrocity of people being maimed by prescription antibiotics.  It’s also the key to justice – once the damage pathway for these drugs is shown, those who have been hurt by them can get compensated for their pain and suffering.

My ego gets wrapped up in fantasies of taking down Bayer and J&J.  I have grandiose notions of saving the world from these nasty, evil drugs that are maiming and killing innocent people.  I want people to connect the dots, to see what I see; that fluoroquinolone toxicity is connected with all autoimmune diseases, Fibromyalgia, Chronic Fatigue Syndrome, Allergies, Dietary Intolerances, Depression and Anxiety, Insomnia, Gulf War Syndrome and even Autism Spectrum Disorders.  I want to be validated by recognition.  I want the world to change.

In wanting validation and change in the world, I have lost track of the purpose of this blog.  The purpose of this blog is not to save the world.  It is not to bring down Bayer or Johnson & Johnson.  It is not to be right.  The purpose of this blog is to give hope for healing to those adversely affected by fluoroquinolone antibiotics.  It is FloxieHOPE.com, not FloxiesDestroyBayer.com.

I apologize for scaring you guys.  I apologize for pointing out the cellular damage that these drugs inflict.  I don’t think that the damage done is irreparable.  I think that most people heal from Fluoroquinolone Toxicity.  I think that most people move on to live full, happy, healthy lives.  I think that DNA is constantly patching and repairing itself.  I think that the body is constantly fighting to neutralize toxins and that even if our enzymes aren’t replaceable, we have enough of them to function or else we’d be dead.  I think that there is hope.  I think that there is healing.

That is why I created this web site.  To let people know that healing is possible.  To tell stories of healing so that those who are scared can realize that there is a light at the end of the tunnel, that they should have hope because this too shall pass.

So I’m sorry for highlighting scary information.  I’m sorry that the focus of many of these posts has been freak-out material, not hopeful, healing material.  I really want you all to be hopeful.  I want you to heal and hope is healing.  It is, I promise.

I can’t promise to be 100% hopeful 100% of the time.  I think that bringing research about the adverse effects of these drugs to the fore is important.  I think that it’s important to try to change the world and to try to stop these drugs from being prescribed inappropriately.  I’ll just promise to try to remember that this site is about supporting people through a difficult time, letting them know that things do get better with time and letting them know that hope is necessary and that healing is possible.

I’m not a Scientist.  I’m not a Chemist or a Toxicologist or a Geneticist.  I’m actually quite annoyed that people with these titles aren’t putting together the implications of these various studies and shouting about them, and thus there is a void.  I’m trying to fill that void by connecting the dots to the best of my abilities, but analyzing these studies is not my area of expertise.  My area of expertise is healing from FQ toxicity.  It’s my area of expertise because it’s what I have done.  I can personally testify that healing is possible because I have healed.  So have the other people who have shared their stories on FloxieHope.com.  We have been scared, we have been hurt and we have healed.  Healing is possible.  It is possible for you too.  Have hope.

 

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Moving forward after Cipro knocked me down

When I realized that Cipro was the cause of my body going completely hay-wire (I didn’t know immediately because my reaction was delayed), and I saw stories on the internet of people getting worse and worse indefinitely, and/or living with pain and disability caused by fluoroquinolones, I thought that I had accidentally killed myself. I thought of writing letters to my family and friends to say goodbye, to let them know that I was gone and that I was so, so, so sorry that I had taken those pills.

In some ways, even though I survived, obviously, I think that I should have written those letters (even though they would have scared the crap out of my loved ones and probably gotten me locked in a psych ward). Because I am different now. The old Lisa is gone. I certainly didn’t die in the physical sense, but who I was changed in an instant, with those 6 pills.

……..

Apparently search engines don’t like it when there is duplicate content on the internet.  In order to appease Google, I will refer you to the other site, www.collective-evolution.com, where the story was published in full – http://www.collective-evolution.com/2013/09/14/a-journey-through-pharmaceutical-induced-illness/

 

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Survivor’s Guilt after Fluoroquinolone Toxicity

Guilt is such a useless emotion.  It induces stress and anxiety for no good reason.  Guilt feels horrible.  It feels like a kick to the gut; a twist in the heart and the soul.

A particularly useless form of guilt is survivor’s guilt.  On top of being useless and destructive, it’s narcissistic.  I feel better but you still feel lousy and that makes me feel bad – as if I have any control over how you feel.  Yuck.  Seriously, it’s disgustingly narcissistic.  It is ridiculous and I know it.

Yet I feel it.  I have been having horrible survivor’s guilt lately.  My stomach has been in knots over the fact that people are suffering.  It hurts me to hear stories of pain and hardship, and it especially hurts me to hear stories of injustice.  Everyone who has been hurt by the pharmaceutical industry, who is suffering because of a stupid drug, is suffering not only physically, but also from a grave injustice.

I want to stop this injustice from occurring.  I see the injustice.  Not everyone sees it.  It’s not real to most people.  But I see it.  It is very real me and to all the other people who have lived through it or who are affected by it.  I see it, but I can’t seem to stop it, and this makes me feel horrible.  I feel guilty.  I feel guilty about not doing more to change the system.  I feel guilty about not warning the people who got hurt after me.  I feel horrible about not doing more.

It’s funny that this feeling has come up as I’ve started to do something about the travesty that is Floxing (I’m thinking that this blog is “something” – you can disagree).  While I was doing nothing, just focusing on healing myself, not focusing on changing the world, I didn’t feel guilty about anyone else’s suffering.  Now that I’ve started reaching out to people, now that I see that my words can have power, I feel horrible about the fact that I’m not doing enough, that my words don’t have as much power as I’d like them to, that I didn’t use the power of my words earlier.

I’m sorry.  I really am.  I’m sorry for your pain and I’m sorry for not preventing it.  I’m really sorry for being narcissistic and whiny about it too.  And I’m trying.  Truly.  I’m doing what I think I can.  These systems that we’re fighting are really big and powerful.  But I’m still trying.  I’m doing my best.

I am way too sensitive to be an activist.  I’m way too sensitive to be a fighter.  But I don’t really see what choice I have.  People are being hurt.  I have to do something to stop it.  I have to try.  The world needs people who try.  Who am I not to try?

So, I’ll deal with the higher blood pressure and the stupid, stupid guilt.  I’ll even deal with knowing that I’m a narcissist.  Because this fight is worth fighting.  Hopefully I’ll learn how to make it less painful at some point.

 

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