I’m struggling to get through The Wahls Protocol: A Radical New Way to Treat all Chronic Autoimmune Conditions Using Paleo Principles (if you purchase the book through the Amazon links in this post, a portion of the proceeds will go to the QVF). It’s an excellent book that I highly recommend, and I will undoubtedly be writing posts about it in the near future with multiple reasons why you should purchase and read it yourself.
But I’m struggling to read it because it scares me.
The Wahls Protocol frightens me because of how similar multiple sclerosis (MS) is to fluoroquinolone toxicity. Dr. Wahls goes over how mitochondrial damage is linked to autoimmune diseases, especially MS. Fluoroquinolones profoundly damage mitochondria. Fluoroquinolone toxicity looks and feels a whole lot like multiple autoimmune diseases including rheumatoid arthritis, lupus and MS. Some people have proposed that fluoroquinolone toxicity is its own autoimmune disease, just the auto-antibodies have not yet been identified and thus it is not treated as an independent autoimmune disease. In some people, fluoroquinolones have triggered a recognized autoimmune disease, as you can read about in Michelle’s Story of fluoroquinolone induced lupus, and I have another friend with fluoroquinolone induced MS.
There is nothing more frightening to me than an autoimmune disease. Having my body attack itself sounds absolutely horrible. I hate the thought. I turn off, get nauseous, and resist every time I hear the suggestion that fluoroquinolone toxicity is an autoimmune disease.
MS causes brain lesions, weakness and paralysis, and typically requires drug treatments that are almost as horrible as the disease itself. MS is terrifying. I HATE the thought that fluoroquinolone toxicity might be unrecognized MS with different antibodies.
I tell myself, “I don’t have MS, I got poisoned. I know my poison – Cipro. It kicked me but I got back up. My body isn’t attacking itself for no reason. I got poisoned.” It makes me feel a little bit better.
But there’s a big part of me that believes that the root of all autoimmune diseases is cellular (especially mitochondrial) poisoning. I suspect that everyone with MS got poisoned by mitochondria damaging chemicals, their poisoning was just less sudden and obvious than mine was. (Read “Digging Deeper Into Mitochondrial Dysfunction” for more information on this line of thinking. Also note that mitochondria are damaged by multiple pharmaceutical and environmental toxins, that damage to mitochondria is cumulative, and that a tolerance threshold for mitochondrial damage must be crossed before a disease state sets in.)
Even though The Wahls Protocol is a hopeful book, with lots of lifestyle change suggestions that have reversed the course of autoimmune diseases in many people, and the diet and suggestions that Dr. Wahls makes will almost certainly help floxies (including me), I’m still struggling with it. It’s really difficult for me to face the notion that my reaction to Cipro may have been an autoimmune reaction. I don’t like that thought at all.
I realize that it may seem otherwise, but I really don’t like being able to connect fluoroquinolone toxicity to autoimmune or neurodegenerative diseases. Unfortunately, mitochondrial damage and oxidative stress are hallmarks of both.
As I read The Wahls Protocol, I wonder if I got hit with fluoroquinolone toxicity because I have a genetic predisposition toward malfunctioning cells. Maybe my cells don’t detoxify xenobiotics as well as the cells of other people. Perhaps the mechanisms that protect my mitochondria aren’t as robust as they need to be to survive in this environment, and my cells are likely to react in a way that involves making me sick when I am exposed to pharmaceutical and environmental poisons in the future.
I hate that thought. It makes me feel weak and as if there is something wrong with me.
I tell people all the time, “You’re sick, you’re not broken, and you’ll get better.” I mean it. I believe it’s true.
I got better. I recovered from fluoroquinolone toxicity. But I wonder if my cells are a bit broken, or at least breakable.
I don’t like acknowledging my weaknesses any more than anyone else. I hate it.
But in acknowledging that I am susceptible to getting poisoned, maybe I can gain power. Maybe that knowledge can save me hardship and suffering down the road. Maybe that knowledge can help me to avoid mitochondrial poisons in the future.
Guidelines and methods for how to both avoid future damage and how to put my cells back together are available in The Wahls Protocol. If I can calm my nerves enough to get through it, I’m sure I’ll gain a lot from the book.
Renee recovered from fluoroquinolone toxicity through using the methods described in The Wahls Protocol. Dr. Wahls’ TED talk (below) about her journey through MS and recovery is both beautiful and inspirational. There is a road to recovery from autoimmune diseases. Maybe I shouldn’t feel so scared of them.
Dear Lisa,
Thank you for your as ever well written and clever post. I am 8 months post Levaquine now. I have been reading and thinking so much. What the heck is this disease?? I have always felt it was something like an auto immune or low grade infectious disease. I too see people presenting with auto immune diseases post flox. But I also see people with auto immune mimicking disease. Or people that are temporarily testing positive for Auto Immune disease. I figure our distorted apoptotic cells and mitos trigger some adverse/Auto Immune reaction. I figure this will fade away once our cells and mitos are restored. I wish a lot of healing to all floxies. XX
The whole thing scares me, not just the reading. Makes me wonder, even more than I did, about my Mother and what she went through and my Son and what he is going through, especially after (finally) finding out my Son is homozygous for MTHFR C677T. I often wonder if it would have helped to know that sooner.
I’ve been doing a lot of studying since I was floxed nearly 2 years ago. The more I study, the more I keep finding what appear to be links between mitochondrial damage, auto immune diseases, cancer, poor gut flora, liver toxicity, and pancreatic insufficiency. Maybe I’m wrong and just need to do more studying; I’m also not sure which of all of the above could be called “chickens” or “eggs”.
About 5 years prior to being floxed, I had been diagnosed with Graves Disease. My immune system was attacking my thyroid and causing it to run like a locomotive. I experienced weight loss, constant hunger, insomnia, hyperpigmentation of lower extremities, orange peel textured skin around my knees, a bit of a goiter, one slightly bulging eye, a constant feeling of being tired and wired, intolerance to stimulants like coffee, and a strong, rapid heartbeat. Not too long after that, I started also exhibiting signs of insulin resistance, possibly due to eating all the time like a pig, which included eating a lot of quickly and easily prepared junk food.
Then I got floxed, and here’s the interesting part. After being floxed, ALL my symptoms of Graves Disease and insulin resistance disappeared. Of course, they were replaced with an even more incapacitating and nightmarish list of symptoms thanks to Levaquin.
After being floxed, I had radically changed my diet. I stopped eating prepackaged food completely, because there was always some ingredient on the label, like high fructose corn syrup, MSG, soy, etc., that I was trying to avoid. Because I live in Panama and didn’t have access to organic meats, I switched to eating canned sardines or live-caught fish a few times a week. I ate organic eggs on the rare occasion I could find them. I got my probiotics from organic kefir or yogurt, since many nutritional supplements are not easy to find here either; I had to rely on food for most of my nutrients. I ate a ton of veggies, raw or steamed, and sprouts, moderate amounts of fruits, beans, lentils, and healthy fats like olive oil, plus small amounts of whole grains, and the occasional treat of dark chocolate.
So why did all the symptoms of Graves Disease and insulin resistance disappear? Did God say “enough is enough” and grant me a mercy? Was my immune system so overwhelmed by the floxing that it didn’t have time to bully my thyroid around anymore? Or was it due to the radical change in diet?
Now back to my studies: I kept finding links to mitochondrial damage, auto immune diseases, and cancer. I also kept finding common threads in the natural methods successfully used by many people who had healed themselves of any one of the above three. In all cases, they switched over to diets (and many also took supplements) that restored good gut flora and unburdened the liver and pancreas. They took probiotics, avoided a list of toxic foods and beverages that stress the liver, and ate lots of raw foods full of live enzymes that unburden the pancreas, and in a number of cases, also supplemented with digestive or pancreatic enzymes.
The pancreatic insufficiency issue is the newest link I’d found. I already knew about the liver toxicity and gut flora issues and had been addressing them. I’m sure that eating more raw produce had helped my pancreas, but I decided to do a test and ramp up the amount of enzymes I was getting from raw food.
A couple of months ago, I revamped my diet. Much of it stayed the same, except I cut out grains completely, greatly reduced the amount of beans and lentils, started eating the lion’s share of my veggies raw, and bought a juicer and started incrementally adding more and more fresh vegetable and green juices to my diet (no fruit juices), until I was drinking 3 to 4 big glasses of juice a day about 15 minutes before meals. I’ve also added moderate drinking of coconut water from young coconuts to the beverages I allow myself. Young coconuts are one thing that is abundant and cheap in Panama.
The results of these new changes have been dramatic. I’ve experienced a huge boost in healing, even having some unexpected issues clear up, and I feel good and energetic for the first time in a long time. I feel like my healing program is finally firing on all cylinders and believe fresh juice straight from the juicer is an important part of it.
Carrot and turmeric root juice seems to be an exceptionally powerful combination. Greens juice is also excellent. (I also now get my full money’s worth when I buy fresh asparagus. I still had to pay crazy, high asparagus prices for those woody stem parts I cut off. Now those stems get thrown in the juicer.) A really zingy combination is garlic, green onion, sweet pepper, tomato, and cucumber juice. Adding a little ginger root to carrot juice is zingy too.
I now understand what all the hype is about over juicing. I was worried that it might aggravate my former insulin resistance issue, but it didn’t. Once I worked myself up to three 12 oz. glasses a day, after a couple of healing crises, my health started really bouncing back. Acid reflux greatly subsided, energy really increased, I could walk, stand, and move around a lot more without need of crutches or cane. Last night I noticed that the one eye that used to bulge had returned to its normal place. Recently, I heard a loud noise, jumped and felt an adrenaline rush for the first time in years. Prior to that, you could crash a car through my living room, and I’d just sit there unable to feel anything; my adrenals were too drained.
I think juicing was the missing key to my program, and my theory for why it’s working so well is not only due to the big boost in nutrients, but also because the enzymes in the raw juice are supporting my long-neglected and overburdened pancreas. The pancreas plays an important role in food digestion and blood sugar regulation. I had worked to detox my liver and reestablish good gut flora, but had completely overlooked my pancreas.
Jane – thank you for this informative post! It is very inspiring. I hope your healing continues!
It’s very interesting re: Whals protocol and the paleo diet and the connection with autoimmune diseases. I was floxxed three years ago by taking 2 500mg pills of levagquin. MY primary symptoms are body-wide connective tissue/tendon weakness/pain, joint issues, and suspected nerve damage (extreme sensitivity to cold, burning, stinging, numbness, tingling, tinnitus, dryness of eyes, mouth, nose, fingers….) etc, etc. Anyhow, about a year and a half into my floxxing, one of my key doctors suggested that I try the paleo diet as she also mentioned the autoimmunce connection. I did watch the Whals video, but did not read the book. Anyhow I did a very extreme super paleo diet for six months…here is what happened:
I cut out all grains, all sugar, most beans, most nuts, and had periods where I went dairy free, and then some dairy. All I ate was grass-fed meat, wild caught fish,few if any light meats, tons and tons of vegetables, a small amount of fruit, lots and lots of coconut oil…some olive oil, some dark chocolate, raw saurkraut, kefir, lots of herbs baisl, thyme, oregano, allo organic vegetables and lots of pastured eggs… I never ate anything out of a can or in a restaurant. My wife, my Mom or me cooked all meals. I even bought a water distiller to remove the gunk in nthe NYC water system. I also stopped browning my food, as my doctor told me this could be carcenogenic…so I steamed all my veggies, or poached my meat. The only carbs I had were some sweet potatoes.
I also experimented with different products intended to resotre gut for, probiotics, kefir, sour kraut (as mentioned above)
As I said, my diet was extreme paleo. I estimate that 65% of my calories were from fat, 20% protein, 15% carbohydrate. I stayed away from nuts and /seeds/beans because of he phytic acid and I wasn’t sprouting anything.
So, as you can imagine this was a very difficult diet to maintain. I ate up a storm. The food was rich with the fat, tasty but super boring.
Certain changes began to happned both for good and ill. My cholesterol was never better. My hdl skyrocketing to 91. My triglycerides went down into the teens (I kid you not). My LDL rose, but I suspected it was the large, safe, fluffy kind.
However there was NO change in my floxxing symptoms whatsoever. Nothing, got better over that six months, nothing changed at all. I was still in pain all of the time, was finding my meals limiting and boring, and it was putting a strai on my family.
What’s worse, due to the diet, I was experience negative health consequences, even though my cholsterol was amazing. I lost over 20 lbs. This is not good. I was a youngish man who, pre-flox was underwieight at about 160 lbs 9I am 6′ 2″). While on this extreme paleo, I lost 20 lbs and was 140 lbs. I COULD NOT put weight on, even though I was eating MASSIVE amounts of vegetables and meat all of the time. Also, while on the diet, my fasting blood sugar syrocketed past 100…but I understand this is normal, as the pancreas reduces insulin as sugar consumption decreases.
Then, after about 3 months, I began to develop severe stomach problems. So much so,that no matter what i ate, I had severe stomach cramps after eating. I was afraid I had nerve damage in my stomach as a result of the levaquin. So, I went to a gasterenterologist, and explained my history. We decided to do a gut-motility test and see if there was slow transit time. I did it over four days. No problems.
Beforedoing other invasive tests, the gastero suggested that I modify my paleo diet, add in more grains and carbs, add in some other foods. He explained to me that the enzymes in the human body are meant to break down carbohydrates and that I was most likely overloading my body with fat and protein that it could not handle.
Reluctantly, I switched my diet. I had my fist slice of pizza in 6 months. It was so damn good to hear that crunch. I added in more carbs, and soon, my stomach issues resolved and I gained my weight back.
What’s more -through out the entire ordeal there was NO change to my floxing symptoms whatsoever -regardless of whether I was on the paleo diet or not. My tenodns still hurt, my nerve pain was there all of the time. I was just made miserable by the diet, lost weight in a horrible way, had excellent cholesterol on paper, and developed severe stomach problems.
So, I am no longer on the paleo diet. While I don’t go out of my way to eat junk food. I try to have a mostly healthy diet, and I certainly don’t eat soda or sugar-candy, but I also eat in restaraunt etc, and have noticed no correlation with my lox symptoms which seem to have a mind of their own and stay the same/fluctuate as they will.
I think it’s great that some of you experienced healing from the Whal’s protocol or Paleo. I didn’t. I wish I did.
There definitely something going on with my pancreas as my fasting blood glucose and HBA1C is higher than pre-flox even after I added back the carbs (upon initially adding backthe carbs, my FBC went down, but now it is up again). However, for me, it seems that diet, gut flora, probiotics, raw veggies, cutting out grains, grass-fed meat, etc was NOT the answer. Oh that it was.
Something else is going on here with what Levaquin did to my mitochondria. I want to fix it but don’t know what to do.
The bottom line: We will heal! It is just a matter of time. It takes years, but we heal. Look at it this way, no matter what the mechanism is there is ups and downs (Cycles). The fact that there are these cycles indicate that our body is fighting to recover. And, if we look at the overall trajectory of progression, the average is improvement. MOST people have recovered to some degree over the years, and I don’t see why over a LONG, LONG time we can’t recover. Meanwhile, we have to just bear the storm until we recover.
Lisa, Have you looked into ganglioside antibodies? They can cause various types of nerve damage and neuropathy. I’ve tried to find information about this but didn’t find much.
13 days x 2 of 500mg Cipro destroy my life and ending my life from not able to bear this condition still not an easy thing to do. Why dying with terminal and incurable condition become a condition that the system want us to face. I knew the answer but I still ask.
My mitochondria is already damage besides my other damage but my mitochondria is the SECOND problem to me after floxied. My biggest and heaviest load is my inability to sleep. (PLEASE do mot misunderstood with sleeping disorder, insomnia, sleep deprivation, lack of sleep, terrible insomnia, on and off sleep, two hrs sleep etc).I wish I can communicate with them who are facing the same situation as me but I guess they are not around anymore as I my self don’t want to stick around anymore since the first I realize that my inability to sleep 24/7 has been lost which I believe that this is also a sign of neurological lost in my sleeping onset system. Five month already and things getting worst, organ damage. Immune system lost from Cipro plus from never sleep. Have 4 kind of muscle involuntary movement, light constant, random myoclonic jerks, spinal and chest jolt and conscious seizures. The violent destruction has more that what I could face. I am looking for and exit
Could Levaquin caused my visionroblem that happened sudden? Yes, I can type but onlyk because I’ve done years and years of 12-18 hour days of typing so as long as I know where the keyboard is, I can type — can barely see the letters so errors elude me.
Sunday, October 9, 2016, myvision went from being okay to not there in the blink of an eye — literally. My husband and I were eating lunch in a restaurant, someone sat down at a table near us, I glanced over, when I glanced back at my husband, my vision was gone except for a narrow bright white area to the right and bottom of my vision field. Called optometrist, he initially diagnosed a pin stroke and told me to go to ER, so I did. CT at ER showed nothing but as precaution, was given TPA and flown to major hospital. Three CT scans there showed nothing. Ultrasound of heart showed it to be in good shape. Cholsterol loa, blood sugar low, BP kept dropping on its own so docs happy with all that. MRI showed “shadow” in right temporal lobe — docs didn’t know if it was bleeding or what, nor how long it had been ther enor if it would go away.
Upper left quadrant of visual field seems as if I’m looking through a dense brown fog. Rest of visual field is useable — can get around on my own, do housework, walk, etc., but can’t see to drive, read nor do my job which is thypesetting and graphic design. Dark area has decreased by about 70% since initial onset but isn’t improving past that.
THis past summer have had the following odd symptoms . . .
EXTREME sensitivity to sunlight. Eyes ahve always been sensitive to sunlight but this summer it feels as needles are being run around my eyes when I go out into bright sunlight, esp. when it’s not high noon and the sun is angled fowrad my face.
Have had sepslls upon awakening of vision beingabout like it is now but they went away in a few seconds.
Heat has affected me very badly this summer . . . can’t seemto get cooled off, even when in AC-ed building with additional fan running, and sitting still (typing). Have turned AC at home down sev. times to 60 or lower in the night because I was lying in bed sweating . . .
Having some trouble with loss of words — cant remember what I need or combine two or three together when talking or typing. (Typing this slow so maybe I won’t do that here.)
Have had sev. spells of feeling lightheaded, as if I could pass out, esp. after getting too hot. Most of the time, eatingand drinking something makes them go away so attributed it to low blood sugar.
HAve had sudden sabbling pains in upper right area of right ey (myright eye is worse than my left eye) — felt like someone poking a darning needle into my eye — not really certain if pain originated in eye or area around it as so severe and so sudden. Goes away after a few secs. and
Evidenly my voice has changed somewhat as people I’ve talked to on the phone for years will call the shop and ask for me. When I tell them it’s me, they say “you don’t sound likeyourself.”
Had thorough eye exam Wednesday, October 12 — optometriest didn’t find anything wrong with physical part of eye. Appt. for visual vield test this afternoon.
Had been tryintg to link this to something, and having no luck. Yesterday friend mentioned she had had an allegic reaction to Levaquin. Got back to work, looked it up, best I could see the list, visual problems have also been connected to Levaqun — I took at least four rounds of it last year before the dadbleamed nurse practitioner would prescribe doxycycline which has worked well for me my entire life.
Anyone on here know of anyplace I can get more detailed info than just a listing of possible sid effects, esp. invo on how to link Levaqun to my problem?
I would appreciate any help.
Thank you.
My experience is with Cipro and my eye problem was noticeable. Only have the annoying Weiss Ring (precursor to possible retina detachment, which I have not experienced). A new ring almost every day. Nothing can be done, I was told. Not much help other than that. Best wishes.