“I am not a doctor and none of the advice contained in this site should be seen as a replacement for the advice of a doctor or other medical professional. Please be careful with all supplements and treatments that you self-administer. Trusted supervision by a medical professional is a good idea.”
That’s the disclaimer that I have up on the Stories page of Floxie Hope. I have no idea how solid it is as a disclaimer. I’m not a lawyer either. Please don’t hurt yourself or sue me.
The disclaimer is understood. Sure. Fine. We all know that each individual’s experience is different, their biochemistry is different, no one on here is doing a controlled scientific experiment because it’s IMPOSSIBLE to do a controlled scientific experiment on yourself, and we even know that we should probably avoid getting medical advice on the internet.
Fine.
But can you blame us? What are we supposed to do? The doctors, the people who prescribed us a poison that MESSED US UP, could chat with us, but most Floxies are understandably wary of listening to their doctors. Doctors also have no answers. They have no advice, no course of action for us to take, and no cure. I don’t blame them for not having answers. They just don’t know. They have no idea what is going wrong in our bodies or how to fix it. It would be nice if they tried to understand, explored different theories, answered the questions in my “What is going on???” post (https://floxiehope.com/2013/06/20/test-post/) compiled a database of what helps and what hurts, looked for a cure, etc. But seeing as we’re fighting to even get our ailments acknowledged and linked to fluoroquinolones, it’s pretty far-fetched to think that meaningful research into a cure is going to be done any time soon.
So we seek answers on the internet. We try different supplements that have helped other people. Luckily, unlike pharmaceuticals, supplements have an excellent safety record. But the combinations that any of us try may hurt us. We may inadvertently harm ourselves while trying to heal ourselves. We don’t intend for that to happen, but it may.
I’ve had two minor mishaps with supplements. I took a niacin supplement and got a “flush” that scared the $*&% out of me. I recently started taking Magnesium Malate / Malic Acid (same thing, two names). It’s given me a nice energy boost, but it’s made it difficult to sleep. Having a little more energy is not even close to worth insomnia – for me. Neither of these mishaps caused me any real harm. They were learning experiences. Taking Cipro was also a learning experience, but a lot of harm was done and the lessons learned came at a ridiculously high price.
I think that most of the supplements that I take help me in one way or another. I wouldn’t take them if I didn’t think that they were beneficial. Yeah, I see the benefit in each of them, but my attachment to them and the money that I spend on them isn’t completely healthy. I spend way too much money on supplements and I am only sure of the benefits of some of them. Iron, magnesium and chlorophyll help me immensely. I eat beets and brewer’s yeast daily and I think that something in them (probably the uridine) is helpful. What helped me may not help you so only take that for what it’s worth, not a lot, only a teensy bit more than your doctor’s advice, seeing as he/she knows nothing about this. (I say that tongue-in-cheek – but don’t take my advice as medical advice, seriously, don’t.)
It would be really, really, really nice if our doctors could acknowledge what happened to us, note that they don’t know how to fix us, and explore alternative treatments with us. Hahahahahaha, I know, pipe dream, hahahahahahaha – I crack myself up.
I’m sure that it’s frustrating for doctors to hear from patients, “I heard about this remedy on the internet,” but if they can’t give any answers, seriously, what are we supposed to do?
I see the people who look for answers to their ailments on the internet as hopeful. We HOPE that there is something out there that can help us, that can cure us. We hope that someone else has found the magic combination of supplements and diet that will lift our brain-fog and cure our connective tissues. I don’t care if this hope is entirely false, hope is a good thing. I hope that the stories of hope and healing in this web site are helpful to you and that what worked for others works for you as well. Please don’t hurt yourself with supplements or diet, and especially don’t get hurt with pharmaceuticals again. And as always, have hope.
I was floxed 2 months ago and can totally relate. I tried sooooo many supplements and spent sooooo much money. Finally I decided to get a professional opinion and went to see an integrative health MD. She is expensive but think about it, if your car needed $3000 worth of work, you’d bite the bullet and get it fixed. You need your body to get around in also. Anyway, integrative health doctors can run blood tests to determine the supplements you need. I had been taking 600mg of NAC but kept getting headaches and other detox symptoms, so the doc said try 500mg and voila! No more symptoms. Some docs can help, I wish there were more and I wish more docs stopped prescribing FQ meds.
Your right about being careful when it comes to taking supplements. Before I started taking anything I had detailed blood work done to show if I was deficient in anything that they have standard tests for. I was low on certain things and so I started with the easiest which was an almost 0 reading of vitamin D. I studied vitamin D and concluded that a high dose for a short time and then a daily dose to keep it in a normal range was what I needed and I had a good reaction and reduced a lot of depression I was experiencing. When you don’t get any sun you have to take a Vitamin D-3 supplement, and I paired that with Chelated Magnesium. As I researched for many more months I gradually added things like a high dose of vitamin C to help my weakened immune system, and then a combo probiotic/prebiotic to help with my gut (a wonderful addition), and then added certain Amino Acids, and a B-12 for energy. I started also thinking of what athletes take to help them rebuild and stay in optimal health and so I added a high alkaline water with electrolytes. I also added Iodine with trace minerals. It took me two years to get to the point I’m at and I changed my diet to 100% nonGMO certified organic foods with a good source of drinking water, got rid of fluoride and aluminum from my life. Sooo, after writing so much, I feel a lot better. BUT, I have to maintain this rigorous and expensive routine to stay feeling o.k. If I have too much stress or eat the wrong thing then I suffer. I still feel happy that after so much work that I found things that help. It’s not perfect and I don’t even know if I can afford to keep it up…but I don’t want to go back to what I was, so that makes me sad because everything comes down to money.