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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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Healing my Brain After Cipro

The scariest parts of getting floxed, for me, were the cognitive losses that I experienced. I lost my memory, my reading comprehension, my concentration, my ability to connect with people and have a meaningful conversation, my ability to understand what was going on at work, etc. I felt stupid. I felt as if my IQ had dropped significantly. My job, which I had done with ease before getting sick, suddenly felt difficult. I had trouble reading; books that I could previously understand with ease, suddenly became incomprehensible.

It was horrible.

Having my muscles and tendons not work like they used to was scary, but losing important aspects of my mind was terrifying.

I had always thought of myself as a smart person and to have that taken away from me was so, so, so difficult. Losing my memory, reading comprehension, concentration, etc. made me question my identity as a “smart” person. If I didn’t have those things, was I still smart? Was I still capable? Could I understand things that I needed to understand to be able to do my job, connect with my loved ones and identify myself as intelligent?

All of those questions went through my head. Both the questions, and the honest answer of – I don’t know – were difficult to deal with.

I tried lots of things to get my mind back. I’m not sure how much of a difference any single thing made, but cumulatively, they worked. I got at least most of my cognitive skills back. I’m not any slower mentally now than I was before I got sick – or at least I don’t think I am.

There’s not a protocol for what to do to get your brain back after getting floxed, so I had to guess about what would help me. I tried various things. Here are the things that seemed to help:

  1. Time. First and foremost, time helped. Getting back to a place where I felt as intelligent as I did before I got floxed took time. It was one of the last things to come back, but it did come back. I have recovered my memory, reading comprehension, concentration, ability to follow conversations, etc. Time was my friend. It healed my cognitive wounds along with my physical wounds.
  2. Meditation. Meditating helped me to gain my concentration back. If you can concentrate on your breath, you can concentrate on a book. Both are pretty difficult when floxed. Concentrating on the breath while meditating is difficult for non-floxies too. Attempting to do something that is difficult (meditating is simultaneously the easiest and most difficult thing in the world to do) helped me to do other things that were comparatively easy.
  3. Suduku puzzles. I did a suduku puzzle a day for at least a year. It engaged my brain. It helped me to concentrate.
  4. Reading. Practice makes perfect, as they say. I kept reading and eventually it got easier.
  5. Writing. I think that writing the articles that I have put online has helped me to organize my thoughts, remember information, etc.
  6. Researching. The articles about how fluoroquinolones affect cells are not easy. They’re actually really, really hard. Learning the language that is in the scientific journal articles that I now read for fun (well, to figure this stuff out, but I am doing it voluntarily so I suppose that it is “for fun”) has exercised my brain.
  7. Lecithin. I supplement lecithin. I think that it has cleared up some of the brain fog that I had. Here is an article about the benefits of lecithin – http://www.diannecraft.org/improving-your-memory-with-lecithin/ One thing to note is that lecithin is soy based so be forewarned of that if you can’t eat soy.

With all of those things, and some luck, I have recovered my mental capabilities. My brain fog has receded. My memory, reading comprehension, connectedness and concentration are as good as they were before I got sick. In some ways, I may even be smarter now than I was before I got floxed. I didn’t read biochem journals for fun before I got floxed. I didn’t know what lymphcytes or reactive oxygen species or acyl glucuronides were before I got floxed. I know what those things are now (okay, so I don’t really understand acyl glucuronides, but who does?).

I know that the loss of mental capabilities the happens with fluoroquinolone toxicity is really scary. Please try to believe that it will pass and that it will get better. It did for me. My mind recovered along with my body. I sincerely hope the same for you!

 

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