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
Lisa, this was a very kind, encouraging post. Thank you for your work.
Blessings –
It’s so awesome to read this Lisa! Floxiehope has been a tremdous help to me; thank you for everything you do!
Always good to hear Lisa. Hopefully we all can be there someday. 🙂
So happy for you and thankful for all that you do. Keep it up, girl. You nailed this FQ recovery!
Congratulations Lisa. This is wonderful to hear! -brian
This is so encouraging, Lisa. I’m so happy that you made it out of the black, and into the blue. This post, I think, will be a mental life-saver for many who are drowning, and flailing desperately as they reach out to grab onto something solid. This is worth holding onto – for all of us.
Thank you Lisa. Your story makes me believe this day on day horror ends someday.
Lisa,
Thanks for sharing how you are doing now! I needed a hopeful story today, as I am feeling frustrated. You give me hope that this might not be permanent for me. Even though I could live my life ok at the point I’m at now, I really want it all to be gone and to just be normal again. Tough to be patient sometimes, but I also, like you, never forget how very, very lucky I am.
Thanks for your continual hope & inspiration, Lisa! You have prevented me from giving up all hope that I will ever feel normal again. Did you ever experience the osteoarthritis symptoms (all the joints of the body clicking, snapping, and popping)? If so, did those ever go away for you? That is one of the (dozens of) problems that I have been dealing with, yet ironically, it’s the one that bothers me the most because my body makes these terrible noises all day long to remind me of my floxing!
This is the only “floxed” post I follow because you are someone that did recover. It gives me hope. I was floxed a year ago and I felt like I was getting better last winter. I tried to do too much too fast and I relapsed. By the way I am in my sixties. Now I have major nerve pain throuout my whole body,including my brain, that just about makes me non-functional. Last year when I heard it was taking people a year or more to recover it terrified me. I just past my one year mark and I am no where near recovered. I spent over 10 grand last year on supplements and health practitioners as well as devices like infrared. Acupunture originaly helped me but now it seems to make me worse. I can no longer use the infrared as that will flare all my nerves after 5 minutes. I can’t live like this but I am not sure what to do next. I am sticking to the idea of complete recovery as my goal but I just want to see progress. You people that can do even 75% of what you used to do are very lucky. If anyone has any suggestions I would like to hear them, or if anyone has a similar story. Mainly I just want to connect with someone. My family does not like to hear me complain because they know it won’t help but I need to do something different.
Bob
Date: Thu, 12 Jun 2014 04:24:43 +0000 To: rlclark99@hotmail.com
Thank you – everyone – for your kind words! I am so, so, so glad that the stories of recovery on this site, and the message of hope, have helped you!
Thank you Lisa for the recovery story. I am at 2.5 year mark and still recovering. I had everything you discussed in your recovery story last year, and I am about 95% back to normal. Last year, I was at about 80%.
I’m about 12 months out. I’m an intermediate case, in terms of my own rating. One of the things I find particularly difficult (in addition to the pain, the insomnia, the nerve sensations, the lack of available medical help, etc.) is the absolute turtle-pace of recovery.
When I look back at a year ago, the improvement on many fronts is clear. I can sleep better. The pain in my upper body is now rather minor. I can walk at a normal pace and up and down stairs. Even specific movements and body positions which used to be impossible or produce pain are now much easier. I can see all that.
But in the shorter term, recovery and improvement seems very difficult to see and celebrate. Maybe that’s my pessimistic tendency, but I don’t think so. My feet still hurt and ache and tingle and burn. They did so months ago, too. Is it less severe now? Maybe. Maybe not. Maybe it’s because nerves heal so slowly. Maybe it’s because of the nature of FQ recovery with good days and bad. Whenever a bad day strikes, it is hard to feel I’m getting better. I always wonder if I’m just getting more used to the pain.
I’m still hoping to see a spurt or real and significant improvement. I’ve seen it referred to in The Flox Report and in various blogs and comments. People talk about going through a period of real healing. I’m not sure I’ve seen that yet. It has been very slow. Very slow indeed. Just one more thing to love about floxing. 🙂
Charles,
Sorry to hear that. That also confirms to me that I haven’t had any cycles. Again, having bad days isn’t the same as being thrust into the depths of hell, returning to previous symptoms or worse (as you have experienced).
How far out are you? Have you experienced some recovery?
Well, congrats, that’s encouraging.
Lisa, to you still eat all organic?
Lisa I have just re-read this and it really is inspiring. I am starting to do better every day and your posts and this site in general have been tremendous help to myself and the entire floxie community. Bless your heart xx.
So frustrated. Went to another doctor today (fast track clinic) and again same story they don’t believe that cipro had any effect in my joints. I’ve never had any joint problems before taking the cipro. The doctors want to keep saying arthritis.
Lisa thanks is much and I shall read the article.
Lisa I read the article that you provided. It was very informative and I would like to find a doctor that listens to me and one that I can share the article with. Your kind words and the information that you willingly share helps me to know that I am not crazy and that I know my own body.