Antibiotics Nearly Killed Me — Please Read
by Bill Milligan on Sunday, December 12, 2010 at 9:01pm
Well, not exactly. But for a few months I was starting to wonder if I was going to recover. I put some serious thought into whether I should simply close up shop and call it a life. A lot of people have asked me what happened, so I’m putting the whole story together here for easy reference.
In May and June of this year I was prescribed two rounds of antibiotics. The first is called Avelox. The second is called Levaquin. Both of these belong to a family of antibiotics called the quinolones, or fluoroquinolones, which also include Cipro, Floxin, and a few others. If you value your health and sanity, I recommend you avoid these. I was given these to combat a persistent cough that had not relented for two months. Neither Levaquin nor Avelox had any effect whatsoever on the cough.
On the other hand, my life became a living hell for almost four months. First, I lost the ability to walk without intense pain in my legs. Joint pain spread throughout my body, from the feet upward. Then I lost most of my sense of balance. I’ve always thought of myself as calm, cool, and collected, but I developed some severe emotional issues: panic attacks, inexplicable crying jags, deep depression, and insane rages. I couldn’t cope with even small stresses. My memory was absolutely shot — I had to write myself notes sometimes on what I was going to do when I went into another room, like the guy from Memento. It was very difficult to think sometimes — ever felt like a word was on the tip of your tongue but you just couldn’t spit it out? After quinolones, I was like that, day in and out, for months. Further, I had peripheral neuropathy, which ranged from sharp burning pains on my skin to uncontrollable twitches, and debilitating weakness. I could not pick up even my youngest daughter for fear I would drop her either from lack of strength, or balance, or just muscular twitches. Even my hearing was diminished, and I had to focus on reading lips. My blood pressure went, almost overnight, from near-perfect to dangerously high. I had chest pains. I had kidney pains. I had insomnia, awful tiredness, and (unusual, for floxies) an insatiable appetite. I had a horrible taste in my mouth that made me fear the worst for my liver. I felt like I was 82, not 32.
All in all, every day was torture. I was absolutely unable to work. I didn’t trust myself to drive. I became housebound. I became unable to take care of my children, and had to rely on my parents to basically take over. Hobbling on my cane to the bathroom and back to bed became my main form of exercise. Negotiating stairs was a nightmare. Sometimes my arms hurt too much to use my cane, and so walking became that much more difficult.
I count myself lucky. Some people with quinolone toxicity have symptoms that are similar but far more severe. And whether it was due to some unusual treatments I’d lucked into, or whether it was just my time to recover, I’ll never know — but I’d recovered from most of these symptoms by the end of September, and the rest of them by November. Many people suffering from “levaquin poisoning” or “floxing” take years to recover, if they ever do. I’m hopeful that the symptoms won’t return. For many floxies, they sometimes do, months later, in cycles that can last a lifetime.
Now, there are some interesting things to note about the quinolone antibiotics. First, they have been “black boxed” by the FDA because of serious adverse reactions linked to tendon rupture and tendonitis. This means that there is a warning on the original box in which the antibiotics are sold. Do you ever read these? I sure didn’t. In our litigious society we’re bombarded with pointless, idiotic warnings everywhere we look. BEWARE, STEAMING HOT COFFEE CAN BURN YOU. We go numb to these kinds of warnings, and the net effect is to simply ignore them. Only this time, the warning is actually important — and doesn’t go anywhere near far enough in explaining what can go wrong.
There are other things to note. The chances of getting adverse reactions increase dramatically if you are taking corticosteroids (such as Prednisone), or NSAIDs (such as Advil) (,or if you’re over 65). My former doctor, a specialist in ear/nose/throat, knew about this increased risk. He prescribed me a corticosteroid called Dexamethasone, which is about ten times as powerful as Prednisone. Stupidly, I took it. When I called him to tell him about my troubles, his advice was to take Advil. Thankfully, I had wised up by this point, but the damage was already done between the Avelox and the Dexamethasone. I had trusted my doctor. This is a mistake, and I encourage you to please learn from my mistakes. Do your own homework. A doctor can be just as ignorant about medicine as you are, but his medical license gives your good old doc an excuse to be arrogant about his ignorance. Ignore the bluster. And don’t trust the FDA, either. When your doctor starts saying, “It’s time to bring out the big guns”, it’s time to start asking serious questions.
Oh, and by the way, my cough never went away, although I had far more luck with “alternative” herbal medicines in minimizing it than I ever had with Levaquin or Avelox.
Interestingly enough, there has never been enough adequate science to determine how these drugs work. They just don’t know! There have been some theories that the drugs work by altering bacterial DNA directly, but there is no science to prove this, nor any science to prove that it is not mutagenic to human cells either. Think about that for a moment.
The scariest thing is that it can take months for these reactions to show up, long after your last dose. If you or someone you know has suddenly developed something that was diagnosed as fibromyalgia, crohn’s disease, tendonitis (or more accurately tendonosis), chronic fatigue symptom, kidney trouble, or other dire long term disorders, look through the medical history to see if these drugs have been given any time in the last year.
Since I was “floxed”, I’ve met a great many people online who have been affected by these medicines. Many of them have had their lives changed forever. It doesn’t take a large dose — the worst case I know of was a formerly athletic man in his 30s who took a single 250 mg Levaquin tablet several years ago. He’s still in a wheelchair. Please do not be the next one in line. The risks are not worth any purported benefit. Do not take Levaquin, Avelox, Cipro, or Floxin unless your life itself is quite literally at stake. Talk to your friends and relatives about these drugs. Spread the word.
For my fellow floxies, I’ll put together another note sometime about the treatments I went through that I think helped speed me to my recovery.
Please take the time to watch this video of floxie John Fratti, a former drug sales rep, and now one of our best spokesmen for this horrible condition. http://www.youtube.com/watch?v=qpDkN_KJmdA
As promised, here is part 2, what I did to try to recover, a little late. Sorry for the delay!
After I gave up on the mainstream medical establishment to cure me, I had to figure out what I could do with my rather limited resources and newly-won deep distrust of doctors. I did go to a few for diagnostics, but of course they couldn’t find anything except to note that my “inflamation markers” were up. Gee, thanks — I didn’t need a doctor to tell me I was feeling inflamed.
This is pretty much everything I tried to recover from quinolone antibiotics. Some of it is pretty off the wall, and none of it was horribly expensive, relatively speaking to some medical therapies. I think some of it definitely helped, as I saw a noticeable improvement right at or shortly after I tried it. Other things are harder to judge.
Did I recover because of the “placebo effect”? I don’t know, and I don’t want to. Maybe it was simply my time to get better. I tend to think they really did help me, although I’m perhaps biased. Your kilometrage will undoubtably vary, so please don’t consider this medical advice.
Since the day I tried to put my bottle of avelox through the wall (hurting my already aching elbow in the process), I haven’t taken any medicine except for a couple of tylenol for a really bad headache. Nothing else. Perhaps I’m judging the pharmaceutical industry harshly and overreacting, but it seems to me that meds either treat only symptoms, or end up damaging the body as much as it does the invading infection. This doesn’t seem like a good deal. And since this was my second nasty antibiotics ADR, I’m feeling pretty stupid for not doing this sooner.
Also, trawling up and down the forums at the now sadly defunct favc.info, it seemed to me that those who got better were those who avoided all western meds — and those who kept taking painkillers or other things stayed sick. I didn’t keep count, but this was my overall impression.
I tend to believe that, in spite of what the doctors told me, the quins do not leave the body of a floxie. Not quickly, anyway. That would help explain why we can experience “cycles” months or years after the fact. Quins are probably still lurking around in me. As a result I am determined to never take NSAIDs again — even over the counter ones such as Advil or Ibuprofen. Nor corticosteroids.
Nor any quinolone antibiotic. Except maybe in a life-or-death situation. Maybe. Maybe not even then.
The most important supplement I took was magnesium. Quins apparently leach this out of your tendons and joints very fast, which is why so many floxies have had their achilles tendons snap. I don’t the quins attack these tendons more than others, but I think these have a tendency to such damage precisely because they are normally so tough.
To try to replace the magnesium, I did 800 mg of Magnesium chelate every day — not ordinary Mg, but the kind that is absorbed more easily. Basically, 200 mg with every meal, and then once at bedtime. Over time, as I felt better I tapered off. Excess magnesium can give you all kinds of intestinal fun — I used this as a gauge to tell me when I was getting too much. Excess magnesium makes me sleepy, too. Nowadays I take about 400 mg once or twice a week seems to keep down joint pain — but if I stop, the pain comes back.
I spent about a week scrubbing the Internet trying to find any story of anyone who had recovered from quins. I finally found one mentioned vaguely on a page that strictly speaking, didn’t exist. It took some effort to track down the lady in question.
When I finally did, she told me she’d had two experiences with levaquin. The first time was bad. The second time was in a life-or-death situation, and the outcome was far worse. She ended up in a hospital bed for three years fighting pain.
She wasn’t expecting any results when her naturopath convinced her to try ozone therapy. Also known as “ozone autohemotherapy”, or “major autohemotherapy (MAH)”, what basically happens is that they extract 250cc of your blood, inject it with ozone gas, shake it up so that the blood absorbs as much ozone as possible, and then reinsert your ozonated blood right back into your body. There is a filter on the intake line to ensure that no undisolved gas enters your blood. I studied the blood chemistry of this a little bit, and there are some good things that this can do to bolster your immune system. I forget details, but it had something to do with converting the ozone to hydrogen peroxide in the bloodstream, which is then used natively by the immune system to kill germs without harming you. It seems like a great idea for treating all kinds of ailments.
That said, it makes no sense to me that ozone would help after a floxing. But help it did. Slowly but surely, within six weeks of her ozone therapy treatment, all her symptoms vanished completely. She told me that so long as she avoids antibiotic-fed meat, she doesn’t even get twinges anymore.
I did ten rounds of MAH, going once or twice a week. After each treatment, I would get very sleepy, and be unable to stay awake very much for about 36 hours after the treatment. After I came back around though, my head felt clearer each time. The pain was a little less each time. And most measurably, my blood pressure receded not only back to my normal levels, but even lower. My pulse rate has always been high, between 100 and 110, but after floxing it was normally around 120. After ten rounds of ozone, it was 77. I was absolutely elated.
It was during the ozone treatments that my balance started to go back to normal, and I was able to reduce my use of a cane. And within six weeks, I started having days where I felt completely normal. Not every day — but normal enough to return to normal life.
This was the furthest “out there” treatment I tried. I researched it every which way I could. I could not find any evidence of any adverse reaction, aside from some folks who felt a burning, stinging sensation when the ozonated blood goes back in. I felt this on two out of my ten treatments, and I have no explanation for it, but it was bearable, all things considered.
4. Deep Breathing
Since I had no explanation why ozone was working, I wondered if maybe all I needed was more oxygen. When the ozone gas is mixed in with the blood, the blood turns from dull rust brown to bright red, as hemoglobin is supposed to do in the presence of oxygen. I certainly wasn’t getting any exercise… Could just breathing more be at least part of the answer?
I think it might just be. I was able to leave off the cane completely within two days of when I started deep breathing. The pain, balance problems, and mind fog didn’t go away completely at that point, but the change was nonetheless pretty dramatic. I took the technique from a cheesy old Tony Robbins tape. I don’t know how much of what Tony says on the tape is pseudoscience and wishful thinking, but I followed it anyway.
The procedure is pretty simple. Breathe in, via nose, for a slow count of some number. There’s no magic to this, just as much as you can hold. I count to seven heartbeats before I’m full. Apparently Tony counts to ten, but he’s also roughly the size and shape of Frankenstein’s monster.
Hold your breath for a count of four times how long it took to breathe in. I count to twenty eight heartbeats, and Tony counts to forty, the freak. Tony claims that this is the optimum amount of time for maximum oxygen absorption.
Then, slowly exhale COMPLETELY through your mouth, for a count of two times the amount of time it took you to inhale. I can’t quite manage a count of fourteen, usually making it only to twelve or thirteen. I have no clue how Tony makes it to twenty except to speculate about an extra lung, perhaps in his chin. He claims that this maximum exhale stimulates the lymphatic system to flush wastes out of cells and eventually out of the body.
Do this between ten to thirty times per day. I like to do it while driving. The way I think about it, even if this has nothing to do with recovering from quins, it can’t hurt to try.
Some floxies recommended acupuncture for pain relief. I saw enough floxies recommend this that I wanted to try it too.
The acupuncturist told me that I probably wouldn’t feel any of the needles, as he was inserting them very lightly. There was unfortunately no truth in this advertising, not for me anyway. I was very sensitive to the needle insertions. There was one area of my leg, which he told me corresponded to my heart, that felt like he was shooting me with a .22 instead of a gently inserted needle. I screamed my lungs out! He said he’d never in his ten years of acupuncture ever seen anyone react to it like this.
That’s the bad news. The good news is that my chest and kidney pains, which had been worring me a lot, cleared up. Immediately.
They came back again, although less intensely, and I went back for another PAINFUL round of acupuncture. These particular pains vanished and have not come back to this day. I’ll reluctantly go back again if I need to, but so far, so good.
Some of the other pains that the acupuncturist worked on were completely unaffected. YMMV.
Per what I saw on favc.info and other places, I cut out all soy. This is harder than it sounds. Soy lecithin is used as a bulk filler for almost everything, including vitamins. It’s packed in everything, including canned tuna. Stuff I thought was good for me turns out to be full of soy. Crap!
Due to one of the supplements I was taking, I also had to cut out all gluten. Wheat, rye, barley, and processed oats were off the menu. So was all forms of sugar. Oh, and peanut butter. Giving up peanut butter is HARD. I also had to cut out dairy.
It should go without saying, but antibiotic-fed meat was also verbotten. No chicken produced in the US is fed with antibiotics, so this was pretty much all the meat I’d eat. From time to time I’d eat Chipotle, whose pork is antibiotics-free, or I’d get that kind of meat from Publix. I ate a lot of eggs.
No processed food, so far as I could tell. If there was something freaky in the ingredients list, I skipped it. Also, no caffeine or alcohol, although this wasn’t really a change for me.
I drank a lot of water. I tried to take a couple of tablespoons of apple cider vinegar twice a day. I stuffed as much fresh vegetation down my gullet as I could stomach. I tried to think of food as just fuel, not something to be enjoyed. I never cheated on this diet.
The last time I tried this kind of diet, long before floxing, I lost 40 pounds and felt fantastic. This time, I lost no weight and felt like crap, although possibly less like crap than I would have had I not done this diet.
Unlike many floxies, I have no food allergies. I’m eating anything I ate before I was floxed. I think this might be because I went kind of nuts on this diet and avoided all these foods for several months.
7. Other Supplements
I read somewhere online that vitamin C can bind to quins and help remove them. Since I’m of the belief that the medical literature on quins are frankly AFU, and that the stuff can stay in your body for a long time, I started taking a LOT of vitamin C. I took 10,000 mg or more of C per day for several months, spread out in three doses. Since you are supposed to combine C with vitamin E, I also took 400 iu of the latter twice a day.
Many floxies report that they’re low on vitamin D. I was already low on D; a doctor actually found me low enough to give me a vitamin D injection a couple of years back, and told me that no amount of sun would probably be enough to get me up to speed. Since floxing, I’ve taken 4-5000 IU per day of D3.
I’ve taken a lot of B-complex for a couple of years, for its antidepressant qualities, four or five times the normal quantity per day. After floxing, it stopped being an antidepressant whatsoever, but I kept taking it anyway in the hopes that it would help mend my nervous system.
I took two different brands of acidophilus, a double dose of zinc, and a multivitamin.
A nutritionist put me on some detox stuff. There were three little bottles, one for liver detox, one for lymphatic detox, and one for kidney detox. I have no idea if they worked or not, but I took them in combination with a specialized non-dairy, non-soy protein shake. This was the stuff that gave me all those dietary restrictions above, but I decided the restrictions were healthy for me anyway, so no harm done.
8. Sunlight and Exercise and Rest
A lot of floxies reported nasty reactions from sunlight, rashes and weird subcutaneous streaks. On the rare occasion I got some sun, I also saw that my blood vessels became very visible and almost blue. It was freaky. I avoided the sun all summer long instead. It sucked.
It should probably go without saying, but I avoided all exercise. Not that it was hard to avoid. I was in a lot of pain, pretty much constantly. Moving was not a temptation. All in all, when I wasn’t sleeping, I was resting and trying to avoid any kind of stress. It was not easy on the people around me.
9. Dealing with Idiosyncratic Complications (maybe just me, Your Mileage Will Definitely Vary):
Eight months before I had my reactions to quins, I had a different reaction to a different antibiotic, amoxycillin. Now, I’ve had amoxycillin many times over the course of my life and never had a problem before, until November 2009 when I had an ear infection. After taking this med faithfully for a week or so, my stomach became horribly inflamed to the point where anything even remotely acidic — like a slice of tomato, for instance — felt like I’d just injected Tabasco directly into my tummy. Doctors diagnosed me with a range of ailments, each worse than the one before it, before they gave up on creative guesswork and settled on a probable cause of “antibiotics ADR resulting in acute gastritis”.
Basically, they treated me as though I had too much stomach acid, and gave me medicine to suit. Unfortunately, they never checked my stomach acid levels too see if that was in fact the correct diagnosis. As it turns out, this is a relatively painless and easy test, called a gastrogram. You swallow a pH sensor with a little transmitter, measure a baseline, swallow some sodium bicarbonate, and see if your stomach acid counteracts this.
As it turns out, the symptoms for too little stomach acid are identical to the symptoms of too much stomach acid. They treated me for the wrong damn thing.
One of the very few doctors I *do* trust speculates that it was the antacid medicine that somehow screwed up my body’s ability to make its own stomach acid very well. In any case, a lack of stomach acid can keep you from processing much of the food you put into it, and extracting nutrients such as protein, or even magnesium.
As a result, the most important non-flox-related supplement I now take is an HCl tablet. I take two with every meal, and I take care to take one every time I take a Magnesium tablet. I mention this here because I think that possibly the reason I felt the effects of the quins so strongly was because perhaps I was already magnesium deficient, from months of poor digestion. I might not be the only one. And possibly taking the HCl tablets along with the Mg has helped to get that mineral where I need it more quickly and efficiently. It was an integral part of my recovery regime that I put together, and I still take these tablets with every meal.
The deeper point here is, try to be aware of what else might be going on in your body that is different from others, and try to see if it is somehow related to your flox issues.
That’s it. If I recall anything else I tried — possible, since my memory of that period is really fuzzy — I’ll tack it in here. Meanwhile if anybody has any questions please feel free to post.