Sachi’s Healing from Cipro Poisoning

Across the Border

For you there was no conscious departure,

No hurried packing for exile.

You are here, anyway, in your own minor archipelago of pain.

Do what every exile does.  Tell stories.

Remember things back there

as simpler than they ever were.

As I begin to write this story for the Floxie Hope community, I think of the lines from a poem, “Across the Border,” by Karen Fiser.  I met her as a student when I was eighteen.  She had a William Stegner fellowship to teach and to write. She expressed a quiet and unhurried compassion that felt as integral to her as the brisk professionalism that I might have expected from another in her position.  Her poems wove together strands of her life, moments of breaking both open and apart.  She was describing the passage of her mind through her life experiences, addressing physical disability and pain.

Less than a year after that class, I took a long and high dose prescription of Cipro for recurrent Strep throat.  After those pills, different parts of my body were damaged over a prolonged period of time.  I could not adequately explain or identify why my body and mind were under such extreme pressure.   It was 1993 and I was nineteen.  I left my university within weeks of being poisoned. I did not know how to heal.  I was completely unprepared.

In the first week after completing the course of Cipro, I experienced a sort of panic attack that is beyond any level of physical terror that I can describe.  I felt like I was dying and facing an oncoming truck at the same time.  That was an extreme physical experience.  Then I found that I could no longer handle normal stress.  Whatever my body had done to maintain balance was no longer working, and stress became unbearable. I described what was happening to a doctor at the student health clinic, but I was told that I was experiencing “normal stress.”  My ears had begun a loud high-pitched ringing that did not subside.  I couldn’t stop shaking my legs at night and it was difficult to sleep.  During the day I experienced a kind of exhaustion that came in inexplicable waves.  The muscles in my arms began to tear.  Soon I could no longer carry my own books or even wash my hair without pain.  The muscles in my legs felt stung and ripped.  It was difficult to walk. I limped wherever I had to go.  After the physical exertion of walking, another wave of fatigue would descend.  I found it difficult to concentrate or study.  My breathing felt impaired.  My available bandwidth of attention for everything and everyone was smaller.

In 1994, the idea that an antibiotic could induce serious and wide-ranging ongoing damage, after its use, seemed impossible.  I looked at every new symptom as a separate problem.  I quickly left college, then home, and I began work.  Conditions that would have already been challenging, became more difficult to manage.  My intelligence felt diminished. I was also physically depressed, not just in my mind, but in my cells. My appetite decreased and over the course of a year I lost thirty pounds without thought. I could make it through work, but then I was completely wiped out.  When I was a nanny, there were hours in which I could barely stay awake. I sustained extremely painful muscle tears in the joints of my arms when I carried the baby.  When one of my employers “casually” untied the strings on the back of my dress, I found it difficult to tolerate.  I began a job as a waitress. My muscles were still burning with pain when I worked at the restaurant, but I was making progress.  It was easier to walk than it had been before.  My arms were burning when I carried trays and then sore to the touch after work. Then five months after my fluoroquinolone poisoning had erupted, a disturbed young man raped me.  That experience worsened my symptoms or I could surmise that being poisoned by Cipro amplified the experience of trauma. It became extremely difficult to sleep.  For months, I had vivid waking nightmares about being assaulted again and I would scream in my sleep, then sit up with a huge jolt of adrenaline.  I was afraid to fall asleep again because I was afraid to dream.  I blamed myself for struggling, and other people did, too.  Love was withheld.  Physical and emotional pain felt like one big loop that fed upon itself.  Some nights I dreamed that I stepped out of my childhood window and flew above everything without any burdens.  During the hours when I reached my breaking point, I saw the side of my existence that would be called suicidal.  Then those hours passed.  I wanted to forget.  A year after my initial poisoning with Cipro, I went through four months of fatigue that were so overpowering that I could not function.  Over a period of weeks, a large amount of my hair fell out.  I did not feel grateful, hopeful, strong, or worthy.  I no longer felt my age. I was a teenager and then turned twenty.  I could not summon or find my life force and stamina.  I had to contend with the feelings of being shattered, disoriented, and lost. In those first two years of Cipro poisoning, I recalled the words of “Across the Border” and they represented a kind of reflection of where I was internally.  I was, in all honesty, just trying to get through each day.

I had no formal healing regimen.  I ingested no probiotics, no vitamins, and minimal food.  I rested because I had to rest.  I waited because I had no choice.  I could not will the experience to end. I didn’t know if it would end.  I couldn’t categorize it.  The fact that energy and health came in waves that then receded made me feel mentally ill. I couldn’t put what was happening into words or a structure that held together.  Even if I had, no one would have known how to interpret it and that in turn leads to misinterpretation.

During those early years, I accidentally happened upon hours of grace.  I began to notice that I found peace when I was walking, breathing, and looking at trees.  I didn’t know how to forgive myself.  I walked, I breathed, and I loved the sky and the trees.  I loved the bare winter branches that broke one after another into spring and summer leaves against the changing sky.  When I opened myself to loving even one aspect of the world, that love touched my life, too.

In the years that followed, this advice would have helped me:

Imagine yourself as a small boat trying to leave that archipelago of illness and the sense of separation from who you were before.  You’ll feel the weight that people cast in your direction: the harsh judgements, the confabulations, the speed with which people can negatively compartmentalize each other, and the incredulity.  That pressure can push you back onto that island of pain, so even if it feels like a leap of faith, you are going to have to learn how to let it go quickly. Trust yourself.  You’ll need to learn to relax.  Don’t underestimate how important this is.  Find it in yourself to relax amidst the challenges.  

The first two years of Cipro poisoning were the most severe.  When I regained enough strength and energy, what felt like normalcy, I studied at a university with lower tuition so that I would not waste much money if I became ill.  The worst of the Cipro poisoning was over, but I was frightened of becoming ill again and I’d lost hope.  Most of the relationships that I’d had before being poisoned were damaged irreparably.  Relinquishing who I had been before, and what I had hoped to do in my life, had happened incrementally. I didn’t know if I would be able to concentrate, or whether I would suddenly lose the ability to handle normal stress.  I learned to be o.k. with not knowing.  Although my muscles were vulnerable, I felt generally capable.  My arms ached and burned after I worked.  My hands hurt while I took notes in classes.  It could sound funny, but it was very difficult to sit on hard seats.  It caused my legs a lot of pain.  It was hard to last through an entire lecture, so I carried a cushion with me.  During the remainder of my twenties, I experienced periods with severe muscle injuries involving tendons.  Several times these injuries were so debilitating that I had to quit the jobs that I had in order to give the affected tendons enough rest to heal.  For the worst injuries, it took about six months to recover.  As my twenties passed, and I lived through my thirties, I realized that I had been experiencing what felt like a process of reverse ageing.  I had felt physically fragile and weak in stamina as a young adult.  Over the course of a decade, all of my symptoms faded.  I was able to run in my thirties!  I gave birth to two completely healthy children.  I cared for my daughters full-time, carried them constantly, and worked long hours on my feet.  I laughed with dear friends.  My body felt entirely younger than it had in my twenties.  I thought my forties would be even better.

When I was forty-one I had a suspected UTI.  It was December of 2015 and I was given a a three day course of Cipro, 500 mg/day.  Within a week of the antibiotic, every hour of my life became struggle.  The symptoms began with my losing the ability to walk without increasing tendon pain.   Soon I could not sleep without awakening from huge jolts of adrenaline and shock.  My ears began ringing loudly.  My clothes and bed sheets were soaked with my sweat. I could no longer regulate my body temperature. Then I experienced the same type of panic attack that I had at nineteen.  I have only experienced this one time before in my life, and both times it occurred within a week of my last doses of Cipro.  I felt like I was facing an oncoming truck and like I was dying at the same time.  The level of sheer terror and stress is indescribable.  Then I found that I could no longer regulate the sensations of stress and anxiety.  Before long I could barely walk.  My tendons felt like they were going to rip with each step.  It seemed that almost every part of my body developed some level of tendinosis.  I could feel where each tiny tendon in my hand worked for the first time in my life.  Even the smallest move caused burning pain and lasting injury.  I could not hold a book or use a pen without injuring my hands.  I carefully moved my arms so that I would not create painful tears in their joints and sockets.  It was difficult to hold my head up or to sit in a chair.  I injured the tendons in my arms and wrists when I lifted my drinking glass, so I had to do it with a lot of care and effort.  Muscles randomly twitched deep inside their mass.  Neuropathy and pain circulated around my body and then settled into my arms, legs, and back. I could no longer feel hunger.  I had to force myself to eat.  For the first four months, I felt the sensation of struggling to get enough air.  My eyes couldn’t handle strong light.  I was in a state of total exhaustion.  I alternated between complete rest and magnesium baths.  I also sought an expert acupuncturist’s evaluation and took Te Xiao Zao Ren An Mian Pian, “Sleep Peace,” by Guang Ci Tang.  For the first six months, I would not have been able to sleep solidly without taking both magnesium glycinate (Pure Encapsulations) and “Sleep Peace.”

In 2015, it was not hard to find out that I had been poisoned by Cipro.  I was able to rule out all other possible illnesses such as Lyme’s Disease and to confirm with a neurologist that I had Fluoroquinolone poisoning.  She had, incidentally, also experienced achilles tendon damage from Cipro.  Over time, I understood in a new light, with words and a comprehensive structure, what I had gone through as a young adult.  The symptoms were more severe than they had been in 1994, but my body and mind were deeply familiar with this situation. After I was poisoned as a teenager, I had already experienced a process of confusion, denial, anger, grief, and acceptance.  I didn’t have to do that again.  I needed all of my energy for healing.  In a sense, this second poisoning was a continuation of being poisoned.  My body and my entire being carried a background of lessons.

I did not know how my poisoning would progress, but I understood that I had to get through one hour and one day at a time.  I knew that I needed to fully let go of the hardship of each day, to let go of the residual fear from it.  I understood that this was crucial to my ability to stay open to life, and to feel alive in today and tomorrow.  Rest was a job.  Healing was a job.  Eating was unpleasant work, but I had the opportunity and the privilege to make that meaningful work.  While the present was often physically excruciating, my body already knew how to just surrender to living.  My life centered around a newly heightened balance of forces: the passage of time, the conservation of my energy, optimal nourishment, adaptation to disability, and attunement to the dynamic shifts in what works and what doesn’t work.  One month I could barely walk, the next I could walk a few blocks before sustaining debilitating injuries.  My body was undergoing a delicate process of healing equilibrium.  There was a tremendous amount of equilibrium to be restored.

The experience of waves of anxiety completely ended after the first four and a half months.  I will dare to credit this to beginning Wahl’s Protocol within days of being poisoned by Cipro.  I followed Dr.Terry Wahl’s regimen to the letter (https://www.youtube.com/watch?v=KLjgBLwH3Wc&vl=en).  That included fermented foods, probiotics, and bone broth.   Kelly Brogan also has a compelling healing regimen that parallels Dr. Wahl’s diet (https://kellybroganmd.com/about/bio/).  Magnesium glycinate supplementation was calming as well.  I wouldn’t wish the adverse reaction of anxiety and its accompanying emotional vulnerability on anyone.  It is one thing to handle the pain of torn muscles and immobility.  It is another to be unable to find the breaks for the sensation of stress and emotional pain.  I needed to experience these episodes by the hour instead of categorizing them as having occurred for entire days or months.  The episodes felt like something in my body temporarily could not right itself.  Stress control that normally might take seconds, took hours.  I wouldn’t say that I was depressed during this second Cipro poisoning.  I have and still do sometimes feel weariness, maybe the way that a beaten animal would feel weary.

Five months into my recovery, when a large amount of my hair was in the process of falling out, my endocrinologist helped me to identify that I was probably experiencing telogen effluvium.  His own mother had been negatively impacted by Cipro, and he understood that I had been poisoned.  He emailed me, “It typically lasts for around six months and it almost never involves greater than 50% of your hair.  It almost never represents loss of hair follicles, so new hair should grow back in time.”  It was a delight to just have a name and description for that predicament.  In just a half year, I had shifted from finding joy in running, to finding real delight and heartfelt gratitude about learning a name for a type of hair loss.  My dear friend bought me a t-shirt that said, “Everything is hurting and I’m dying.”  He brought me a stupendous bouquet of freshly home-grown kale, and he kept me laughing while I tried out eating the soft parts of organic chicken feet.  My daughter drew me a picture of a Darth Vader-bunny as a Wahl’s Protocol warrior.  Life brought gifts and I felt them to my core.  By six months, I was able to take care of my children again.  It was a struggle to get all the way through each day, but I was already shifting to dealing with less severe neuropathy, stamina limitation, tinnitus, and muscle vulnerability.  I was disabled and I had one of the best summers of my life.

Three years on, all of the damage continues to slowly decrease.  Symptoms flare and then recede.  I am left with wide spread tendon vulnerability and frequent cycles of neuropathy, lowered stamina, tinnitus, injuries, and soreness.  From month to month, I don’t know what level of health challenge or ease I will be managing.  There is an analogy of health to a cup of water.  When my body is in a normal healthy state there is a buffer, so that mild illness won’t upset the balance.  My body after Cipro poisoning is already working at its highest potential to function at normal health.  So small triggers and additional health burdens can tip my glass of water, and symptoms flare.  My body’s need for enough rest, stress management, and thoughtful nourishment are non-negotiable.  I adapt my choices and self-care to that reality as it evolves.  I am, in a sense, doing everything that I can just to keep my cup from overflowing.  I know that I am living in a weakened state.   I intuit that my body is again going through another decade long process of reverse ageing.  In this third year, I have found that I cannot walk more than a few hours before muscles are injured and my source of energy is emptied out.  Topical Arnica gel has been effective with pain reduction after a normal day of movement.  Vitamins have never been a straightforward prescription or investment for me.  Sometimes they make me feel remarkably worse.  Dr. Ben Lynch has a helpful perspective on some of the more difficult vitamins for me to tolerate, such as methylated folate (http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/).  He states, “a supplement enhances your biochemistry and physiology – and once complete – stop. If you continue to supplement beyond completing or enhancing your biochemistry, you are going to push it beyond where it needs to be.”  This means that I have to make my decisions over my health from the inside out.  I cannot follow an externally prescribed daily supplement routine without stopping to feel and interpret the signals from within my own body.  For better or worse, I find that I have no viable shortcut to giving my body the support that it needs through food.  I feel the best when I follow Dr. Wahl’s diet (https://www.mindbodygreen.com/0-25961/what-i-eat-in-a-day-functional-medicine-doctor-terry-wahls-tells-all.html).

Both as a reminder and an instigator, my central question throughout this second poisoning has been, “what are you here for?”  Yes, Cipro poisoning shouldn’t have happened.  But this is the only life that I have.  I never get this time back.  Years ago, when my grandfather was in the final weeks of his life, he likely said goodbye to a number of people in the same way.  If there had been hesitation or doubt lingering for him before, I couldn’t find it.  The last time that I was with him, he looked at me and he pushed his thumb very deliberately into the palm of my hand.  I felt that he was pushing ALL of his love into my hand.  The magnitude of that love, I can’t explain it.  I just know that I am here because I am not finished being with whomever I am here to pass that on to.  I’ve had to accept that my body, even more after this second round of poisoning, will not relent in telling me to let go of draining situations, and to make the necessary sacrifices, so that I can be who I came here to be.

Each of us has our own unique story, body, personal circumstances, and healing trajectory.  Please know that I will read any comments with respect and care.  I can’t imagine being able to give advice for how to go about reclaiming your life in the midst of being poisoned, but I am wishing you happiness along the way and a full return to health.

******

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, affect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

14 thoughts on “Sachi’s Healing from Cipro Poisoning

  1. Cipro2017 February 15, 2019 at 11:46 am Reply

    Dear Sachi,
    thank you for the story. It gives alot of hope. You are a very strong woman, God bless you!

  2. Sandi February 15, 2019 at 12:06 pm Reply

    What a thoughtful & concise description of Floroquinolone toxicity. Im so sorry you were floxed 2xs. You give me hope that eventually all will work its way out and that there is life in the midst of our suffering. I am 9 months out from Cipro. Healing is a journey but living through this is the best & only way out. Thanks for sharing your story. Wishing you health & happiness.
    Sandi

  3. Sahara Sowers February 16, 2019 at 12:25 pm Reply

    I’m sitting here crying , unable to stop. You just told the story of my life for the last 10 years. Thank you for your beautiful words.

  4. Grace February 21, 2019 at 9:12 am Reply

    Did you or anyone experience SEVERE body weakness ? Mine is sooooo bad the weakness head to toe . I’m a year out. It’s so bad sometimes it feels like I’ll drop dead . I don’t have joint or muscle tendon stuff it’s just really bad body weakness. Does this leave ? Also a year has gone by and I don’t remember any of it. I also can’t recognize myself in the mirror. It’s called depersonalization I think someone said . Did those symptoms leave? And after how long ?

    • Grace February 21, 2019 at 9:28 am Reply

      Actually Can you call please. I need help 310-432-3381 I’m a mom of two and I’m just losing all signs of hope . I’m scared and confused . Your story gives me hope .

      • Sachi February 21, 2019 at 1:58 pm Reply

        Grace, I am so sorry. It must be very difficult. I am in the EU presently, and I use Whatsapp to call the US. Would it be possible for you to set up a WhatsApp account, skype, or to leave your email here? I can’t speak for everyone else, but yes, for me energy improved every year. Three years out, I have enough energy to function. It did get better for me. When I went through the intense fatigue at 20, I was also afraid that it wouldn’t end. Please hope! 😂 Other people on this site know more about memory changes and depersonalization than I do. Fatigue, though, I can remember struggling with. It is really hard. I am sending my best, and also to Cipro 2017, Sandi, and Sahara.❤️

        • Grace February 21, 2019 at 2:52 pm

          I have WhatsApp 🙂 Please kindly message there.

  5. Dan Jervis February 25, 2019 at 10:18 am Reply

    Dearest Sachi, So far you are the first person I have discovered who was floxed before I was. My nightmare began in 1996. I am now 69 and realize that 1/3 of my life has been scarred, 1/2 of my 47 year ,marriage has been torn and 2/3 of my son’s life has been altered by my Cipro poisoning. I have lived through so many of the same layers of hardship as you, you are a remarkably strong and diligent beautiful being who has so articulately expressed herself. I see you when I look into the mirror. Please try trans-dermal Magnesium oil on your sore muscles because similar to Epsom Salt soaks, it is absorbed into your soft tissue. Living minute to minute resonates with so many of us that we must try to reconstruct our lives with meaning living with chronicity. I wish for just a partial recovery to feel as though my proactivity has rewarded me, accepting the reality that this hardship has invaded our DNA and mitochondrial replenishment has been severely altered or halted is so troubling.

    Please continue to post because all of us care deeply for you, and hope for your wellness.

    So sincerely, Dan Jervis

  6. Dan Jervis March 2, 2019 at 10:07 am Reply

    Dear Sachi, Please consider sending your story to CBS 60 minutes. 60m@cbs.news.com
    our story needs to be heard

  7. Flox March 7, 2019 at 2:10 pm Reply

    Dear Sachi
    how long did you need to get better after starting the wahls protocoll?
    Greetings!

  8. sachi March 8, 2019 at 7:24 am Reply

    Hi there Flox, Greetings back to you. I hope that you are doing alright. I would like to try to make a simple answer, but it’s a bit complex because I had so many severe symptoms in the beginning of my second poisoning. I do believe that fluoroquinolones likely impacts gut health and digestive balance. Some people also believe that the liver is working especially hard after being poisoned, to eliminate the toxin of Fluoroquinolones. The liver and the body’s methylation cycle benefit from optimal food-based nutrition. Wahl’s protocol, and also Kelly Brogan, clearly address gut restoration and nourishment through diet. Some of my first symptoms to leave, after beginning the Wahl’s protocol, were anxiety and the sense of my body not being able to handle emotional stress. That relief from anxiety and emotional vulnerability ended four and a half months after being poisoned in 2015 (and that was how long I had been doing the Wahl’s Protocol). When I was 19, and poisoned by Cipro, I did nothing to restore my gut health. In retrospect, I do believe that (at 19) I could’ve shortened the length of time that I suffered with anxiety and emotional vulnerability had I known about a diet like Wahl’s (in combination with replenishing my magnesium levels). When I was poisoned at 41, I was able to finally understand that I had been poisoned at 19, and I drew on that lived experience. One thing that I knew, was that at 19, my healing trajectory had not been a steady path. I felt that actually, my healing trajectory got worse over time, especially regarding anxiety and severe fatigue. At 41, I understood that how I feed and care for my poisoned body effects the trajectory of my healing. I wanted steady gains in my health. I didn’t want to be in a state of malnutrition (because my body felt anorexic for the first half year of my poisoning in 2015). In 2015-6, my body was already under so much strain, I think that anorexia would have inhibited my healing process by starving it of real food-based nutrition and fuel. I literally forced myself to eat, and it was difficult. Every time I ate, I felt completely exhausted afterwards. I no longer enjoyed the taste of food, which made eating feel repulsive some of the time. A lot of what I ate, I made into smoothies with a Vitamix, but I did follow Wahl’s Protocol to the letter. Eating was hard, it was truly a labor of love. It was hard for me to chew, difficult to sit up, impossible for me to cook (I had to find help for that in the beginning). From this vantage point, now three years out from my second poisoning, I think that Wahl’s Protocol was absolutely worth the work, investment, and effort. Regarding other symptoms… The first six months were the worst. I have made steady improvement over the past three years. I have occasional flaring, but I have never “relapsed.” I can tell you that this week, I’ve been walking about 10,000 steps a day. I feel like I ran 10 miles afterwards, but I am absolutely loving my mobility. I still eat Wahl’s Protocol, because when I start eating more difficult foods (caffeine, alcohol, sugar, and a lack of quality protein and vegetables) I tend to experience a resurgence of neuropathy, tinnitus, and fatigue. This month, I just feel normal apart from my muscles being very vulnerable to over-exertion. I have to wear Campers (with a wide foot bed) with a Chaco insole inserted into them in order to avert plantar fasciitis. I had the exact same types of muscle problems in my mid-twenties. Fortunately, my physical therapist told me to try Chacos. So I am still putting thought and work into just walking normally, and managing symptoms. When I do the work and make adaptations, I feel healthy. I feel like I am managing my health and I take that seriously. I don’t want to look back with regret, or the sense that I let Cipro poisoning darken this decade of my life. I do sense that Wahl’s Protocol accelerated my healing trajectory, and kept me on a steady path of healing. I have muscle issues, but I am truly enjoying my life. I have done this before, healing from Cipro poisoning. I can feel the difference that optimal nutrition and self-care provide me. I know that it is a lot of work and that if you are poisoned severely, it can seem like too much work. I think it’s worth it. In the first few months of Wahl’s while being severely poisoned- I did find planning, eating, and sticking to an intensive diet challenging and sometimes overwhelming. I did it anyway. On the other hand, I want to be clear and fair, I healed after I was 19. Back then, I didn’t take any vitamins, follow any diet, or do anything special. I just let time run its course and I persevered/endured. I do feel that I suffered more with anxiety and fatigue than I needed to, but I did heal and all of my symptoms faded away over time. I hope that this helps. You may also heal more quickly than me. I am 44 now, and this is my second poisoning which seem to have made this last exposure to Cipro more extreme. I felt like I was facing my mortality head on for the first couple of months after being poisoned the second time. Each person has their own timeline with healing. I hope that you hold onto hope. If you can borrow my story, to give you certainty that you can and will heal, please do. Uncertainty can be so emotionally draining. One of the gifts of having healed from Cipro poisoning once before is that I know how powerful my body’s determination to heal is. It took a lot of time, but I healed after Cipro poisoning at 19. I’m still awed by it, and so grateful. Wishing you strength and health.

    • Jackie April 16, 2019 at 10:48 pm Reply

      Hi do you still have tinnitus or muffled Hearing? How are you these days? Did you have severe weakness , brain fog and nausea , fatigue ? My daughter who is in her late twenties was floxed. Trying to find her some help. Thanks

      • sachi April 17, 2019 at 2:11 am Reply

        Dear Jackie,

        I’m sorry to hear that your daughter has been negatively effected by a fluoroquinolone. I think it would be a lot harder for me to watch one of my own daughters struggle with floxing, than to deal with it myself. I’m going to try to answer your questions in order. First, I can only really answer these questions for this time period right now. The bigger symptoms all ended within the first two years. The other symptoms tend to flare up (not always in a big way) with certain triggers such as before I get a sickness (like a cold or flu), when I am about to have my period, and when I consume foods that are harder for my body to process (caffeine, sugar, alcohol, and maybe what some people refer to as inflammatory foods). Though I am able to handle challenging foods more and more easily. I expect that all of these triggers will go away in time, because this is what happened during my twenties.

        But answering your questions…

        Do I have tinnitus. No, not right now. Do I have muffled hearing, no not right now. I had tinnitus both times that I was floxed, and it was always one of the first symptoms to resolve (within a few years, and the strength of the noise was diminishing over time, even when it flared). Tinnitus has flared up in the past, but right now, I hear nothing but normal noise.

        How am I these days? Honestly, I feel pretty incredibly great, especially in relation to having been floxed so severely just a few years ago. I know that has to sound strange to say that I feel great, even with some lingering issues. Plantar fasciitis type problems, weak joints, and muscle vulnerability are certainly ongoing problems, but they really aren’t that huge a problem in the big scheme of things in my life (but if I had a highly physical job, I think that I would spend a lot of my time injured). I try to walk about 7-10k steps a day, and I can do that, even though I have foot, hip, joint, and leg pain associated with that activity. My energy is a lot better throughout the day when I eat a diet pretty close to Wahl’s Basic Protocol. Those are my only problems that I manage right now. I don’t take a lot of supplements or do a lot besides sleep well, eat healthy, and exercise moderately. My arms and back aren’t strong enough for much exercise, but my legs are pretty good, and I can tell that I’m getting stronger. So apart, from physical muscle vulnerability, I’m feeling normal enough. Maybe less energetic than I will in another five years, but overall, I feel great.

        Yes, I did have all of the symptoms that you asked about. In the first months I basically felt like I was just trying to find the strength to keep living. My body felt like it was being pushed to the limit of my endurance for such a long time, such an unrelenting period of time in the beginning, that it was truly hard to just imagine that it would ever end. Severe weakness and fatigue were beyond anything that I can describe. The pain was intense. Just living and resting was difficult. That’s got to sound strange, unless you’ve been through it. My guess is that this is what it feels like to be severely poisoned. I don’t really relate so much to the term “brain fog,” as to the idea that “my bandwidth of free attention” became limited because my body was dealing with so much pain, physical suffering, and utter exhaustion. I read a lot while I was sick. I learned a lot. Sometimes, I retained less information than I might normally be able to, but I think that it was because I was studying and reading while dealing with pain. In the first couple of years, I had to try to imagine how to get everything done in as efficient a time period as possible, because my body would just run out energy about 1/2 way through the day. The nausea I had only in the very beginning of the floxing. I studied Dutch in the second year of being poisoned. I am guessing that it would be a lot easier now, but I am still glad that I just went ahead and struggled through it (all that Dutch grammar). Studying and reading has always been a part of how I relax, so I just kept doing it even though it was harder than it probably would have been in the past. It’s always hard to figure out what is going on, to really have perspective on it, when you are in the middle of it. I use my first experience of floxing as a point of reference.

        In terms of helping your daughter… I think the fact that you are taking the time to read about some other people, and to believe her, is already a big deal. I think that it would be good for you, if possible, to remember that even though it feels like the floxing might last forever, that it really can get better given time. Everyone has their own trajectory of healing. A lot of people do apparently heal.

        Recently I read a definition of compassion. It’s this:
        Compassion consists of three major requirements: People must feel that troubles that evoke their feelings are serious, the understanding that sufferers’ troubles are not self-inflicted, and ability to picture oneself with the same problems in a non-blaming and non-shaming manner.

        I think that if a floxed person can have this for themselves, their ability to be o.k. is going to be a lot less inhibited. If a floxed person is lucky enough to have a few people who have the ability to do this for them as well, well that’s truly one of life’s greatest gifts, to not have to be alone when you are in the midst of something so hard and invisible on the outside. I think that just being to hold that space mentally and in your heart for another person is a real accomplishment, and maybe in the beginning it is also a form of work. I also understand that like a lot of things in life, it’s possible that there really are going to be a lot of friends and doctors (though mine were truly professional and helpful) who just are incapable of thinking about a person who is floxed. I try to see it as just that, “Some people can’t think about me.” It’s hard to have empathy, compassion, or decency when you just cannot think about something or someone. The “floxing” experience falls outside of the mainstream.

        I know that people get depressed sometimes when they are floxed, not just because of the physical strain but also just the experience of losing so much so fast, and the uncertainty of it ever getting better. I guess if I had a mom helping me out, from my angle, I would appreciate help doing what Wahl’s and Kelly Brogan talk about. It’s hard to cook. It’s hard to afford healthy food. I think it’s a very effective and safe way to treat floxing though. Rest, food, and compassion.

        If you live in Seattle, I can give you some names of decent people to work with (physical therapist, endocrinologist, naturopath, accupuncturist). I could also listen to you think about this on WhatsApp if you’d like that. No one was able to do much though, even though they would have if it had been a possibility. My accupuncturist did help me to be able to feel like I was getting enough air in my lungs again. That was one remarkable experience. Feeling like I wasn’t able to get enough air was frightening and it lasted for about four months.

        Chances are, your daughter is going to improve. Never under estimate the importance of your love for your daughter. I know it’s got to be hard to see her suffer. I have a hard time watching my daughter struggle with smaller issues in life, like bullying or beating herself up for struggling in school.

        Meditation has helped a lot of people. I tried to learn about that when I was really sick. For example, John Kabat Zin is someone who teaches about mediation. Deepak Chopra, so many others. It was hard for me to relate to all those expert voices at the time however. But in retrospect, I think that being so sick is a kind of long-term forced meditation. I really had to deal with being in my body in a very aware manner. It was unavoidable. When I really feel psychic pain, I find Maya Angelou an ongoing source of strength. She said something about her son. She held out the idea (on a video about giving him advice) that there was a part of him that he should hold just for himself, a part of him that nothing needs to ruin. I tried to remember that part of myself when it felt like everything in my body was broken. Sometimes it was all that I had to hold onto, when it was hard to breathe, when nothing worked anymore, when I was holding so much physical plain and dealing with being completely crippled. That must be a kind of meditation, too. I’m not religious in a church kind of way, but that idea of being untouchable, un-ruinable, in such a damaged body… It helped me to know that about myself, maybe just remembering and acknowledging my spirit or my soul being untouchable and being able to remember that.

        When you are really sick, it’s nice if people just still see you as a valuable human being. It’s special if a loved one brings simple, relaxed energy into your life. My older sister used to call me when I was poisoned. I would just weep some of the time. It was alright. We both knew that I wasn’t crazy and that we were more committed to loving each other than judging it all or even understanding what was happening. When I weeped, I was just letting the hardship go. We treated it as just letting go of the stress and probably some of what might have felt like despair. I focus on accepting it all (the floxing) as best as I could, and on loving whatever was there to love (the gift of having enough food, of having family, of each new day, everything that was still o.k.).

        To reassure you, I really do feel well and happy three years out. Truly, I’m not just saying that.

        All the best to you and your family. Let me know if I can help in any other way.

        If you want me to contact you, l can WhatsApp from The Netherlands.

  9. krabiwi March 12, 2019 at 8:20 pm Reply

    Hi, it’s confirmed by some studies that ketosis lowers oxidative stress and increases mitochondrial biogenesis. So a diet which brings metabolism into ketosis is definitely an important therapy brick to heal mtDNA after being floxed.

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