Gary’s Story – Levaquin Toxicity

*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments. 

**Please note that Gary has added updates to his story over time, and continues to do so regularly. Please read through the whole story, and check back regularly. Thanks! 

Abstract:

I went to my local Med Express, on October of 2015 and was given Levaquin and some cough suppressants because I was sick, with supposed pneumonia. I took only 2 pills of Levaquin, and within 30 days, and it has destroyed my life. Recovery is slow, but it seems to be getting there. Another 24 months and I should be back to what I could consider *normal*. The mechanisms behind my side effects are still unknown, but some personal testing shows something is wrong with the cellular systems in my body. My Pre-Levaquin health issues only consisted of a very small amount of psoriasis behind my left and right ear. I was only on some topical steroids for it – Off and On for years. No other medications. My sleep schedule was quite normal for ‘me’, ie: 6 to 8 hours a day, and could stay awake for 18 hours with no problem. All post-Levaquin lab panels show I am the picture of health, except for the body temperature issues.

No doctor I have seen post-Levaquin could help me, and I spent loads of money on many of them. Most of them would never consider Levaquin did this to me; After the lethal assault on my body by just 2 pills of Levaquin, I started reading peer reviewed literature in November of 2015 to determine a cause and possible treatment. Now, as of this writing (November of 2016), 1731 peer reviewed papers later, this is a summary of my experience, treatments, etc. Some of the things I have tried are dangerous (ie: Self-IVs), but you have to understand that doctors that I have visited never once considered what I was saying was remotely accurate, many of them suggested it’s a separate health problem with no known cause (or treatment) even though there are mentions of worsening set of symptoms in a patient that was on Fluoroquinolones (Strauchman and Morningstar, 2012). I have been desperate for answers. Thankfully, I only took 2 pills of Levaquin because if I were to have taken the entire bottle, I’d probably be disabled.

Legal Options have been.. there.. but most Attorneys I have spoken with want $5k to $15k up front, and it would drag out for 2 years, they would settle out of court and I’d have to sign a terms-of-settlement notice which means I couldn’t talk about it. Do I really want to go through this for 2 years? No.. Modern medicine is a plague upon mankind.

My initial story on floxiehope had numerous problems with it, because when I wrote it, my mind was shot. I had trouble with memory recall, so I rewrote it to be more accurate of what happened to me. I have also tried to cite as much information as I could from journals. Maybe this will help a researcher, or someone else.

Levaquin exposure reduces plasma antioxidant levels by 50%, and Cipro, 77% (Talla and Veerareddy, 2011). In the same paper, lipid peroxidation occurs when antioxidant levels are exhausted, which causes cellular death, and ultimately tendon issues/collagen destruction (and perhaps others). Cipro exposure caused numerous changes to GABA, Glutathione Levels and others in the Brain of rats (Ilgin et al., 2015)

My current hypothesis for the mechanisms behind my issues:

  • Inhibitation of Acetylcholine by Levaquin. Some antibiotics do cause this (Grill and Maganti, 2011), but there’s nothing in the literature about it for Cipro, Levaquin, for people. 
  • Gut floria homostatis is messed up. Levaquin nuked part of it, and the glasses of wine finished it off, until my GBA (gut-brain-axis) screamed for help.
  • GABA disruption. (Kamath, 2013). GABA disruption caused by these kinds of drugs has nearly a similar description to BWS (Benzodiazepine withdrawal syndrome). Fluoroquinolones have been known to cause CNS stimulation (Moorthy et al., 2008; Farrington et al., 1995; Tom and Filipe, 2011). Fluoroquinolones seem to be direct GABA antagonists, as well as NMDA bounding agents. Even a paper by Kandasamy and Srinath (2012) states Quinolones prevent normal binding of GABA with their receptors, increasing CNS stimulation. A more recent paper (Chowdhry, 2015) also states Fluoroquinolones antagonize inhibitory pathways (gamma-aminobutyric acid [GABA]) and stimulates the excitatory pathways (N-methyl-D-aspartate [NMDA], adenosine) leading anxiety, restlessness, insomnia, tremor, seizures, hallucinations, panic attacks, etc. I never had the insomnia, just the crippling fatigue. This quite interesting, because in the aforementioned papers, GABA antagonistic effects can last for a long time, perhaps years, if there is a sudden, overwhelming antagonist against GABA/NMDA.
  • ATP disruption / uptake / recycling issue (with ADP). ATP drives cellular energy production, and recycling of ADP in the transport chain. If this is disrupted, cellular energy production will be low overall and affect certain parts of my body.
  • T2 intake into mitochondria chain has degradation. As anyone knows, Thyroid hormones have a profound effect on mitochondria biogenesis, energy, etc.
  • Levaquin caused mtDNA damage, which was replicated. Autophagy unable to remove mutated mtDNA damage correctly.
  • Collagen destruction in my brain.
  • Small Fiber Neuropathy in my Vagus Nerve System.
  • Nerve damage (PN). With moderate nerve damage, axonal regeneration does happen, but it can take as long as 26 months (Lee and Wolfe, 2000; Grinsell and Keating, 2014).
  • CNS disruption. This would explain the crippling fatigue/overactive immune system (think how you act when you are ill with the flu, you want to sleep all the time)
  • Genetically abnormal detoxification pathways which Levaquin triggered – My body has high levels of ROS, etc which cannot be removed to pre-levaquin levels from daily activity (Hypothesis) and/or Co-morbid impaired detoxification pathways that inhibit fluoroquinolone metabolism and excretion.

 

Full story:

On October 2nd of 2015, This is the day my life has changed.. for the worse. My day job consisted of being involved in Information Technology, as well as a Part-Time First Responder, this has affected both professions.

This entire ordeal began because I promised someone I would pick her up some food on my lunch break, and drop it off to her; She, as well as her daughter, were very ill with some Upper Respiratory Track Infection (Later I found out it was bronchitis). Dropped off the food to her, September 31st, around 7:30pm (I didn’t go inside her apartment, but clearly wasn’t enough to stop me from becoming ill). Onset of illness was very quick as within 3 hours, I developed a headache, chills, etc. Went to bed after leaving work 90 minutes early, and woke up near 8am to that ‘I am ill’ feeling. Stayed in bed for nearly 2 more days, and on Friday afternoon I had to make a call to a family member to drive me to a doctor (I was too lethargic to drive.) I arrived at Med Express around 8pm and told the staff that I was sick. When I was finally seen, I had the following symptoms during my initial exam:

  1. High pulse rate (over 100)
  2. Low O2 stats (96% on room air)
  3. High Fever (101F)
  4. Respiration Rate was elevated
  5. Lung sounds were not clear and equal
  6. Low Blood Pressure
  7. Lethargic

Doctor ordered Chest Xray and confirmed some kind of discoloration on my right lung, near the top. Diagnosed it as ‘Pneumonia’ based on my symptoms, and then prescribed Levaquin, 7 pills, 750mg, for 7 days. Doctor told me that if my fever did not go away by Monday Morning, I should head to the ER because I could develop sepsis (which is unusual for someone at my age and health status). I asked the doctor about the Levaquin and said ‘Is there anything I should know about this?‘ to which he said ‘Don’t take it on an empty stomach‘.. He made no mention of any interactions, side effects, etc (I had never heard of it before). Dropped off my prescription to Walgreens and headed home.

Next morning, picked it up and took 1x pill of Levaquin in the Parking Lot with some Gatorade, about 30 minutes later I noticed an electrical sensation in my arms, neck, hands, feet and others – Shrugged it off and it went away. Later that night when I was trying to go back to sleep, I started to see and hear things. My heart rate was 140bpm.. I was sweating. I was paranoid. That went away…

Then on Sunday, October 4th at 2:30pm, I took my 2nd and final pill; Within 90 minutes my hands, feet and knees were hurting so badly I could not walk or hold anything in my hands. It felt like my feet had been ran over by a school bus, set on fire with lava. My hands were hurting, it felt like I suddenly developed arthritis. I took a 200mg NSAID to see if that would help – It did not. The pain.. oh my.. the pain.. It was so bad, I started to become tired. Maybe a hot bath would fix it. It did not. I jumped on the computer and went to the FDA’s website and typed in ‘Levaquin’ into the search bar.. and I came across the very large print of it’s side effects. The first one I noticed, tendon injuries in people over 60, or with a history of corticosteroid use. I went back and looked at my med express forms, because they had asked me if I had been taking anything and I said a ‘dermatologist prescribed steroid for minor skin issue that I’ve had all my life.‘ .. No current medications listed. Wow. Just.. wow. They forgot to note that down!

I started researching possible treatments and what exactly what tendon ruptures were. The only treatment was time, according to pubmed. The pain was so bad that I could not sleep.. For the entire week, I slept a few hours, only because I used 3x packages of Epsom Salt in my Bathtub with very hot water, that caused my foot pain to reduced from 10/10 to a 3/10, enough for me to sleep, in the bathtub (until the water became cold). A few days later, I called Med Express and told them I am in a lot of pain and I am not sure what I should do – They told me ‘You need to finish the antibiotic‘. I said they are insane and I was fine before I took this medication and I hung up and stopped taking it, hoping the side effects would go away. They did not. After another week of agony and pain, I went BACK to med express and I spoke with another doctor the following Sunday, turns out he’s the head of the Med Expresses in my area. I told him my symptoms and he said ‘Take a look at this’

He rolled back his sleeve and showed me his right bicep – There was a massive deformity on his bicep that looks as if someone had used an ice cream scoop and removed half of his bicep. He told me it was from the same family as Cipro, and he took it in the late 1980s and it caused that.

I was prescribed Painkillers, Sleeping Pills and a NSAID. I took a painkiller nearly an hour later and my pain went from a 9 to a 0.5 in about 20 minutes. I felt alive again – I started to become hyper since I was in agony for a week. Mind you, I’ve never taken any painkillers in my 36 years of life at that point in time. Later that night, when I got off of work, I took a sleeping pill and another painkiller – I went to bed at around 12:30am and I slept for 20 hours, until 8pm the following day. When I awoke, I felt SO much better, the pain in my feet was about a 2 at this point, so I repeated the treatment for the next 10 days and I seen massive improvement. Everything was starting to get back to normal and I thought the worst was over.

I was wrong.

Early on October 27th, around 1am, I tried to drink a few glasses of wine so it would make me tired enough to sleep (I had drank 3 glasses a few days before because I ran out of sleeping pills with no issues). Finally went to bed after 3 glasses of wine; Next morning awoke to feelings of intoxication, foggy thinking, depersonalization, anxiety, short term memory problems, uncontrollable feelings of sadness, fear, cold hands and feet, unable to stay warm, chronic fatigue; I felt as if part of my mind was paralyzed. The mental stuff got worse over the next week and peaked around Nov 4th – Around Nov 5th just after midnight I went to my ED of my Hospital as 3 hours earlier I was vomiting up dinner because of anxiety and panic attacks. I was in sheer agony; I could not understand what was happening to me. I was seriously insane. I have never experienced anything like that before in my entire life. I have had ZERO issues, beforehand, with Wine at all. None. I hardly doubt that Wine would cause this at all..

I approached the Charge Nurse and I didn’t even know what to say. If I said the wrong thing, they might think I was crazy, and throw me in the mental ward. I tried to give her a quick summary, but I was not really sure what to tell her. I was admitted. Initial vitals were a little unusual, probably because I was scared of puking, and it was raising my heart rate. Nurse comes into the room and asks me ‘what’s the problem?’ to which I said – This is going to take a few minutes. I flat out explained that my health had seriously went to hell after taking 2 pills of Levaquin 3 weeks prior, and that I have been having numerous CNS issues that I cannot explain. ED Doc comes in, and asks me again, to which I was more detailed about everything. Doctor said the most comforting words I have ever heard:

‘We will try and find out what’s wrong with you’

CT, Xray, Blood Panel performed. Everything was within range. Except for elevated Alkaline Phosphate Levels (114, upper range is 120), everything was within range.

Before I was released, he told me that Levaquin and the other drugs like that are going to get pulled off the market in the future because their side effects are too dangerous for routine use. He also said that if I had came to the ER, instead of Med Express on Oct 3rd, it’s their SOP (Standard Operating Procedure) to only give a mild antibiotic first (ie: No cipro/levaquin). He seemed well versed in the side effects of these kinds of antibiotics, and said it’s just going to take time. But.. he could not give me a timeframe.

Was released at 5am, stopped by Waffle House to try and eat something. I was starving. I was also upset.. and I needed to be around people. I had an appointment with my former Primary Care Physician at 2pm the next day, who read my charts and other information from the ER. Her ‘conclusion’ was this was all in my head, and wanted to write me a prescription for benzos. I became quite angry, and stormed out of her office.

I made an an appointment with a Podiatrist, he did some checks of my feet and Achilles tendon and noticed some issues.. some being, numerous tendon ruptures, micro ones, in both of my feet. He came to the conclusion I have mild antibiotic induced tendopathy and not tendonosis due to only taking 2 pills of Levaquin – He stated long term usage of Levaquin would have caused tendonosis. On a side note, He did tell me that my foot orientation is not correct which wasn’t caused by Levaquin, but just ‘me’ not walking correctly (since I was a kid), using the right shoes, etc – So inserts were ordered. I was concerned about Neuropathy – He stated it’s likely I will continue to have some discomfort for awhile as a indirect reaction to the damage to my tendons in my feet/toes – Again, he was quite helpful and very well verse in the side effects of Levaquin (I didn’t even have to tell him about tendon issues being a side effect, he knew from my chart why I was there)

(After all that was said and done, I went on a buying spree and bought numerous supplements – Please see the end of this page to what worked and didn’t work.)

I am probably 90% right now, the lingering issues as of 12/09/2015

  • Brain fog. I can only describe it as a nagging issue now unless I *think* a certain way I can’t tell tell it’s there or not. I am still not back to normal, mentally though. I was hyper, full of energy. I am able to work, but without the productivity I used to have.
  • Unable to sweat correctly/stay warm. Normally I would sweat at any activity as I was a ‘warm blooded person’, now I can’t really sweat normally. My hands are cold. I can only stay warm if the air temp is 72+. I think this has something to do with the fatigue.
  • Pins and needles in a few of my toes. Only happens when I am hot (ie: hot shower). Seems to becoming less and less as the weeks go by. I just took a shower and I noticed a very very slight P/N feeling, but no where near what it was.
  • Slight numbness in my long toes, my throat (over my Thyroid), back of my neck and possibly other areas. Again, seems to becoming less and less.
  • Fatigue. During the the peak of the Neuro symptoms in late Oct/Nov, I could not stay awake for the life of me and I slept 12+ hours. But now when i try and ‘nap’ I can’t fall asleep, which is normal for me. I am still tired but no where near as bad as it was 40 days ago.
  • My perception of time is incorrect – My body doesn’t know the time of day or anything. It’s as if my internal ‘clock’ is out of sync with the rest of my body. This is probably related to the fatigue.
  • I lost nearly 20lbs from Oct 1st till now – I was near 180 at 6’3, now I’m currently at 166 with a low of 159 about 30 days ago.

I think I am getting better – Slowly. My faith in western medicine has been reduced to ‘avoid unless you are near death’ because they are more concerned about writing you prescriptions for things you may or may not have, just to make money. Since I was poisoned, it has affected my life to the point where I am not myself, and I cannot fathom living as someone else (Brain Fog, Depersonalization, et al), the only thing I can do is ‘wait it out’.

I just hope the brain fog goes away and I come back to being myself.

June 2016 Update:

When I first wrote my story, I was in serious error. I was not 90% recovered. I was in denial about my health problems.. It’s been 8 months since I took the last pill of Levaquin. I had only consumed 2 pills and those 2 pills have changed my life. I’m extremely more careful and paranoid about modern Medicine (ie: take this because of that). I’ve visited numerous doctors and was tested for everything, MS, ALS, Parkinsons, Diabetes, Lupus, Brain Trauma and others. I had 5 full Metabolic profiles performed by multiple doctors which showed nothing wrong and I was ‘the picture of health’; I have been to more doctors in the last 8 months than I have been in 35 years. They were all generally worthless and wanted to dope me up on benzo’s and other insane medications. This has become quite expensive since my copays.

My acute symptoms during the month of October of 2015 till January 2016:

  • 37 tendon ruptures in both feet (20 in the left foot, 17 in the right foot)
  • Pain in my legs (Achilles), knees feet and hands. The foot pain was a 10/10 on the pain scale which lasted 30 days, then it came down to 5/10 until December, then went away completely by the end of Feburary. I could not walk correctly for months. A doctor wrote me perscription for painkillers and sleeping pills – which helped a great deal in October.
  • Nightmares – Being shot, stabbed, poisoned, burned alive, hung/drawn/quartered, drowned, beheaded with a chainsaw, crushed, suffocated, etc. This lasted until the end of October, to which I never seem to enter into rem sleep – Until April.
  • Lots of eye floaters
  • Nerve issues, like abnormal sensations etc (Has gone away)

My chronic symptoms – Starting from the end of October. I woke up Oct 26th to the most terrifying mental and physical state of my life after consuming 3 glasses of red wine the night before.

  • Crippling fatigue. I could not stay awake longer than 10 hours without becoming so tired (I nearly fell asleep driving). I’ve gotten better which I’ll explain, but it’s still not back to ‘normal’ for me.
  • Unusually low body temperature. (96 to 97F)
  • Abnormal sweating. It takes more physical effort for me to sweat now, whereas my normal self would sweat/be moist(?) in my armpits, groin area, feet, etc. It has gotten a little bit better.
  • Stamina issues
  • Always cold in the winter time. Normally a room temp of 70F+ would be too hot for me.
  • Low heart rate
  • Low sex drive
  • Metabolism oddities
  • Short/Long term Memory problems (which have gotten a lot better)
  • Depersonalization / De-realization (which has gotten a lot better)
  • Brain Fog (which has gotten better)
  • Intoxicated feeling without the booze effect. (better, not completely back to normal)
  • Crying, vomiting, extreme anxiety (which had gone away by the end of December)
  • Body’s internal clock oddities – Normally you can ‘feel’ the time of day, but for me it seems to have been set in one specific timeframe (Hard to explain)
  • Weight loss. I went from 185lbs Sept 30th to 159lbs November 7th due to the anxiety+vomiting. – But I’m back to my weight before.
  • Warm/Hot showers made my tendons in my toes/feet/hands ache.
  • Heart Palpitations.
  • Dry eyes (still ongoing)
  • Muscle atrophy from being in bed all the time.
  • Alcohol doesn’t intoxicate me any more. I feel drunk in the head, but nothing else. It’s very strange – I wasn’t an avid drinker, but sometimes you’d just let go.
  • Vision got worse. My prescription for my contact lenses needed to be changed (4/16) and the doctor tested me for retinal detachment. No signs of such a thing. She did say my vision got worse within 2 years, so much so that my contact lenses are now 2x ‘stronger’ than what they were. I cannot attribute this to the Levaquin, though (so keep that in mind)

I tried so many things between when my Chronic symptoms started in October and March, with no real progress.

July 2016 update:

Back in May when the temperature broke 80F for the first time, I developed an itchy rash on my right foot that spread up my right leg on the inside – Then it progressed to the left leg (facing my right leg on the bottom right side). I thought this may have been a bird mite infestation in my home from the nests in my bathroom exhaust vent. Orkin Supervisor noticed what appeared to be dead bird mites on my bathtub in the corner. I took care of the nests via Orkin and ‘bombing’ my house, and rewashing all my clothes etc. Dermatologist gave a general diagnosis of ‘Atopic Dermatitis/Contact Dermatitis’, Steroid cream given. The rashes were very itchy, and it spread to my right arm. It did not affect my body like stomach, back, neck, chest. So itchy, that I would intentionally rupture them so they would drain of the clear fluid. Since then I’ve been having periods of flair ups and flair-downs, which might indicate a food allergy. My supplements have not changed and I did not start on anything new in May. Diet was the same.

I looked over my recent lab panels and it showed elevated levels of Alkaline Phosphates (146). My Alkaline Phospates level on November when I went to the ER was 114 (Range is 35 <-> 120)..  This is usually one of the things elevated in patients with Celiac Disease, but it’s also elevated in people that eat very acidic food/drink sodas (Raj et al.,2009; Kristensen et al.,2005). My total cholesterol levels did not indicate Celiac Disease – C.D patients have low LDL,HGL and Total Cholesterol, as well as multiple elevated liver enzymes. I cut out /all/ gluten for a period of nearly a week. So far, no rash/itchy, until 4 days into my test I awoke one morning to a very hot day and my legs began itching again, and new blisters were forming after I came inside from checking on the mail. So probably not a Gluten Allergy. I remembered that my dermatologist prescribed a steroid cream for years and years to clean up some dry skin behind my ears, and that does influence your Alkaline Phosphates levels (increases them).

I think I might know the cause – Abnormal sweating. One thing I noticed about the rashes is that they are all located near my hair follicles (sweat ducts). A year ago, temps in the 90s would give me a flush feeling in the face, then sweating on the legs, arms, body. That was normal for me. The other day I was outside in 94F heat (H.I was 101). I did not sweat for the entire 20 minutes of just standing outside, except for my back and stomach area. I have no answers to this but I guess if I went back to the Dermatologist, he’d probably want to try something else (Translation: Dope me up on more drugs). I never had this problem before Levaquin. My skin on my arms, and legs are very dry, and cool to the touch.

To be fair, I cannot attribute this skin rash to Levaquin, fully, But mind you I started developing the overall Levaquin neurological side effects close to November when outside temps were well below 80F.

(This is when I purchased Carbon60-OO (Fullerene) Check the end of this post for more information)

August 2016 Update:

I began a new appointment with a brand new, young doctor. She was recommended to me by others – She seemed to grasp what I was telling her better than past doctors. I decided to take it upon myself and print out everything relating to the damage that these kinds of antibiotics cause on the cellular level – 290 pages – Cipro based Mitochrondia dysfunction, etc to prove every Fluoroquinolones /do/ cause some type of Mitochrondia toxicity. I highlighted the ones that show damage and treatment, hoping she would entertain the idea of starting the IV antioxidant therapy I wanted in her office (The same one I had tried earlier). She just skimmed over my research, and wants to send me off for Sleep testing, then send me to either John Hopkins or WVU for more ‘testing’ … Sigh… This was the final straw for me.

I also noticed recently my eyes are too dry – I wear contacts but I never had to use any kind of Visine until recently. I didn’t think anything about it until one day I had to ‘pre sneeze’ a few times and I noticed my eyes did not get watery like before.

September update:

Body temperature is in the upper 97s/mid 98s now, and have been for the last month or so days. My eyes are still not as moist as they used to be. I canceled my doctors appointments at WVU and my local Hospital. No point, really. I just feel like it would be another waste of time.

I had a microbiologist read over this page, and then my health reports – He said this sounds like remains of a viral infection as I did not develop the neurological symptoms until 25 days after I took the last pill of Levaquin. I was then pointed in the direction of a paper by Pantry et al. (2013) called “Persistent human herpesvirus-6 infection in patients with an inherited form of the virus”. After reading over it, the abstract contains the following: “the data presented here document that some individuals with CIHHV-6 are infected persistently with exogenous HHV-6 strains that lead to a wide range of neurological symptoms; the proposed name for this condition is inherited herpesvirus 6 syndrome or IHS”

On p. 1941 of Pantry et al. (2013)

Prior to treatment, both patients exhibited neurological symptoms including cognitive impairment
and depression with concomitant abnormal quantitative EEG readings. Six weeks of foscarnet
treatment resulted in the resolution of neurological symptoms and normalization of brain waves; however,
symptoms returned after cessation of antiviral treatment

As well as this (p. 1945):

Both of these patients have suffered debilitating neurological symptoms but antiviral therapy
resulted in marked and long-lasting improvement also documented by quantitative EEG [Montoya et al., 2012]. Currently, the two patients have no detectable U100 mRNA in their PBMCs and are free of neurological symptoms.

And the most important part of the paper is this (p. 1945)

There have been previous reports of in vitro reactivation of integrated HHV-6 by chemical inducers,
such as TPA and trichostatin A [Arbuckle et al., 2010].

Could it be that Levaquin reactivated HHV-6? Even this paper and others (Tohyama et al., 2007; Watanabe et al., 2008) state clearly ‘These viruses persist after primary infection; viral reactivation is associated with a variety of adult conditions and complications including encephalitis, drug-induced hypersensitivity or drug rash with eosinophilia and systemic symptoms, and transplant rejection’ (Pantry, et al. 2013, p. 1940). Good news is that if this is the case (with me? and others?), successful treatment options are there for this virus (Montoya et al.,2012). I might look into this more; something to keep in mind, I guess. But my hospital stay back in November of 2015 showed negative for mono. Please note I am not trying to attribute every single thing I read on journals to post-Levaquin adventure. A cause would give me direction for treatment.

Towards the end of September, I came down with being sick; runny nose, cough, that ‘I am sick’ feeling, etc. Around the time my symptoms began, I also noticed that a cold sore was starting to form on my lip, the first time in nearly 5 years. I had some weekend plans, so I did not want do deal with a cold sore. I obtained some Acyclovir, 800mg. I began taking it as prescribed for a few days. It stopped the cold sore from mostly forming. I completely stopped taking it after 3 days. On the 2nd day of the medication, I noticed some unusual feelings and a reduction of fatigue, I was able to stay awake 16 hours, no problem. I do get tired, but the I cannot stay awake feeling from a few months ago has not been present for awhile now. Supplements/diet has not changed. Might be placebo. The mysterious rashes have mostly gone away (95%) by September.

October/November 2016 update:

I ran out of S-Acetyl-L-Glutathione (depleted the last bottle) after taking 6 pills a day (every 3 hours of wakefullness) in October. My energy levels seem to have stabilized, and my post workout fatigue is not as bad as it used to be. I need to keep doing these Antioxidant challenges for awhile longer. My next challenge will be one for the record books, I plan on taking 6 pills an hour, for 16 hours. My total GSH levels should be in the thousands for an entire day at least. My body temperature since August seems better overall as I don’t get cold that easily unless I am tired. (See my Carbon 60 information below).

During the first 10 days of Nicotainmidie Riboside treatment, my energy levels surged, but then I started becoming tired again during the day. I ceased the treatment Thanksgiving Day and my energy levels started coming back up. My evening fatigue spells reduced slightly. I believe this has to do with the autophagy functionality, which purges defective mitochrondia.

My current stack as of November 25th consists of CDP Choline, Niagen 300mg (Nicotinamide Riboside) and DHEA.

Supplements/Treatments that have worked (for me)

* Carbon 60/Fullerene (WARNING! Experimental!)

One of the most powerful antioxidants I have ever taken in my life. Fullerene has a very unique structure that is composed of 60 Carbon Atoms that form a hollow sphere, nearly ~1 nanometer in diameter (Kroto et al.,1985) – This sphere behaves like a free radical sponge (Chistyakov et al., 2013), has no known toxicity (Gharbi et al., 2005; Spohn et al., 2009, Andrievsky et al., 2005; Tong et al., 2011), contains antioxidant activity several orders of magnitude higher than any known antioxidants like Glutathoine (Krusic et al.,1991; Yang et al., 2014), prevents mitochondrial dysfunction and oxidative damage (Xiaoqing et al., 2008), restoring the level of Glutathoine in cyptoplasm and incorporation into mitochondria cell membrane to prevent lipid peroxidation (Prylutska et al., 2008).

According to a paper that describes how toxic, if any (Andrievsky et al., 2005) of C60 Fullerene and some other mechanisms which states the following:

Nevertheless it is reasonable to mention that: (i) pure C60 possesses comparable and even higher anti-oxidant activity than natural anti-oxidant vitamin E (a-tocopherol) (33), (ii) micronized C60 demonstrates the powerful hepatoprotective activity, i.e., protects the liver from toxic damages (34).”

I did a blind test in August with 1 bottle of C60-OO and then just regular olive oil and took some measurements (Body temp 3x a day, how long it took for me to become tired, etc) for 3 weeks. The first 10 days were not the Fullerene, but the regular olive oil. When I switched over to Fullerene, I noticed an immediate change within an hour of taking it. I had
to have someone help me with the blind test so I didn’t experience the placebo effect.

Carbon 60, at least for me, showed the most improvement overall. Like I have stated before, Fluoroquinolones have a very long history of producing mitochondrial dysfunction, and any ‘supplements’ I take that affect Mitochrondia and my Antioxidant
levels in a positive way have a very pronounced effect on my energy levels. Some of the initial effects from Fullerene in my double blind testing:

  • Increased body temperature
  • Stabilized my post-Levaquin body temperature issues (ie: no longer freezing cold when a room is 75F)
  • Energy levels increased – Still below what I think ‘was’ normal, but a marked improvement
  • I seemed to have better olfactory reception. Not annoying, but when you eat your favorite food and you can smell it as it used to be (stupid allergies)
  • I seemed ‘happier’ – Possible GABA expression changes.
  • Mental clarity has increased by at least 2 orders of magnitude. People were been telling me I’m much more like my old talkative self. (Seems to have been permanent)
  • Less anxiety overall.
  • Vivid, Awesome dreams.
  • My blood is bright red and my o2 stats on a pulseox are between 100 and 102 – I suppose oxygen saturation has increased. (Other c60 users are reporting it)

Some of the above is more permanent (the mental clarity has remained), olfactory responses have remained improved.

August 6th to the 16th – Control (simple Olive Oil)

Date Body Temp Time Awake Notes
6th 95.5 13 Hours Caffine at super high dosages have no effect
7th 95.9 12 Hours
8th 95.9 10 Hours Very tired
9th 96.1 10 Hours
10th 95.4 9 Hours Was not feeling well this day
11th 96.2 11 Hours
12th 95.9 12 Hours Intense Fatigue at 10 hours
13th 95.8 11 Hours Sudden onset of fatigue at 10 hours
14th 95.8 10 Hours  Awoke after 13 hours of sleep – Became tired again 4 hours later.
15th 96.0 11 Hours
16th 95.5 10 Hours I wanted to nap all day long

 

August 17th to the 27th – Fullerene

Date Body Temp Time Awake Notes
17th 96.4 18 Hours  Surge of energy, similar to Whey Protein, but much longer lasting.
18th 96.6 13 Hours  Insonomia, and constant feeling of napping.
19th 96.8 15 Hours  Best Dreams I have ever had in my life.
20th 97.0 16 Hours Olfactory changes started this day – Pasta sauce, etc smelled great.
21st 97.3 17 Hours  I actually felt like cleaning this day.
22nd 97.2 15 Hours
23rd 98.5 18 Hours Was doing yard work all day, wanted to stay awake longer.
24th 98.4 16 Hours
25th 97.9 14 Hours
26th 98.0 16 Hours
27th 98.4 19 Hours Maximum – Woke up at 8am, and went to bed at 2am

 

* Nicotinamide Riboside.

According to the peer reviewed literature, Nicotinamide Riboside, a vitamin B3 and NAD precursor, boosts NAD levels and induces mitochondrial biogenesis, preventing mitochondrial abnormalities like mtDNA deletion formation, stimulates unfolding of protein response to offer protection on certain mitochondrial diseases (Khan et al., 2014), neuroprotecting (Chi and Sauve, 2013), liver repair (Mukherjee et al., 2016), engages in mitochondrial quality control to eliminate mtDNA defects by lysosomes (Jang et al., 2012; Brady and Brady, 2015) Nicotinamide Riboside also has a long half life in the body, about 6 hours (Trammell et al., 2016a) Nicotinamide Riboside is also present in Cow Milk (Trammell et al., 2016b), which may explain why Whey Protein + Milk was making my energy levels more normal. Nicotinamide Riboside is quite safe, even up to 1000 mg/kg (Conze et al., 2016). I started taking this in October. 3x pills a day, but have backed off to 1 pill a day. (300mg). Some of the noticeable effects:

  • Improved energy levels
  • Body temperature back to normal or just above normal. Probing shows 98.5 to 98.9. Cold weather does not bother me anymore and I actually feel pre-Levaquin (can’t sleep with a heavy blanket on, which is normal). I am physically more warm
    and not as cold intolerant as before.
  • Reduced overall fatigue. I would rate my current fatigue levels as a 3/10, where 11 months ago I was a 9/10 . My diet has not changed at all and I have not been taking anything else except for DHEA, which I was taking before NR. (no Fullerene since August)
  • /Some/ insomnia – Which was normal, pre-Levaquin.
  • Post physical activity crashing for days, is reduced.
  • Reduced overall sleep (from 10 hours to 6/8)

Reduced body heat is consistent with changes in mitochondrial mass (ie: smaller mitochondrial mass suggests less ATP). Nicotinamide Riboside appears to improve the quality of your mitochondrial via autophagy activation (Kang and Hwang, 2009). However if I really wanted to rid myself of any broken mitochondria, I’d have to do a NR challenge stacked with something like PQQ. I might do this in the near future.

* Organic Whey Protein

This was a hit or a miss. Organic, Cold Pressed Whey Protein had a 50/50 chance of making my energy levels close to normal, but the effect was short lived, only lasted 5 hours a day. Whey protein stimulates mitochondrial activity and decreases oxidative stress (Shertzer et al.,2013), Increases cellular glutathoine levels (Kent et al.,2003). I need to investigate this more.

* IV Based Antioxidant Therapy

March 30th, 2016 I went to a local doctor (N.P.) that gave me a Myers Cocktail with a Glutathione Push. This made me feel worse for about a day, then my mental functionality got a lot better – probably 30 to 50% – Permanently. I had to fork out $300 out of pocket for this. This was too expensive for multiple treatments (plus a 90 minute drive). My health insurance company did not want to pay me back for treatments since there’s no official diagnosis from a doctor. (Remind me why I pay $8k a year for health insurance?)

In April, 2016, I decided to try self administered Intravenous IV therapy – Glutathione, etc. since I’ve had 1 professional IV performed with great results I wanted to save myself money, and again, I was very desperate. I ordered Glutathione from a chemical supply company, as well as NAC, NACA – Experimental antioxidant that is just like NAC but much better (Ates et al,2008; Penugonda et al,2005). NACA was very, very expensive for the dosage I obtained. I also bought D-Ribose due to it’s antioxidant effects (Garnett et al.,1996)

So now I had plenty of supplies for 4x IVs with NAC, NACA, L-Glutathione 2mg (per IV) – with 10CC bags of saline. My first few IVs came under supervision from a colleague, and we set the drip rate to be slow and steady for the first bag – About 60 minutes. To clarify, the first bag contained about 50mg of NAC, 1mg of NACA, and a 5mg of D-Ribose for 60 minutes (I might be wrong about the dosages since I can’t find the paper where I wrote down the exact numbers)- Then when the bag was finished, we performed a push of Glutathione (2mg). The next few applications consisted double the amount L-Glutathione (4mg) until I ran out. I ended up buying some… skin whitening vials.. which have the same Glutathione ($70 to $120 for 10 vials), just less of a dosage I wanted. The latest one I had ordered contained 6500mg of L-Glutathione, 600mg of Alpha Lipoic Acid, 5000mg of VitC, 600mg of Collagen Extract, and some smaller unrelated things. It’s 12 vials. I have not had them performed yet as of June 3rd of 2016.

Within a month of doing the above, my heart palpations completely went away, as the remaining aches in my tendons/feet/hands when showering, and my eye floaters reduced by double digit percentage. My memory had gotten much better – however energy levels didn’t see the same gains, a modest improvement. I can stay awake longer than 10 hours most of the time and get tired about 14 to 16 hours – It’s not back to normal but it’s a huge improvement overall. My resting heart rate went from 65bpm to about 43bpm. The abnormal sensations have gone away (the strange numbness).

* S-Acetyl-L-Glutathione

S-Acetyl-L-Glutathione is a highly absorbable lipophilic analogue of glutathione – I performed 4x challenges on this, due to it’s low plasma half life of 10 to 20 minutes (Hong et al., 2005, Table 1; Wendel and Cikryt, 1980; Lu, 1999). This low plasma half-life is not actually a bad thing, since current literature makes references to direct uptake by cellular/organs. S-Acetyl-L-Glutathione seems to be able to cross the blood-brain-barrier (Kidd, 1997; Adams et al., 1991). I performed the challenge because Glutathione deficiencies can cause Mitochrondia changes in vitro (Meister, 1995).

Anything I have tried/try antioxidant wise (any of the above treatments) to my body, gives me a surge of energy, to nearly pre-Levaquin levels. I have a hypothesis that my body has phase II detoxification genetic issues, which has been known in the literature to cause chronic, post Fluoroquinolone health problems (Strauchman and Moringstar, 2012), or it’s possible that Levaquin disrupts the daily glycogen generation capacity, which is the total energy for a human body. (Lorini and Ciman, 1962; Michelakis, 2007; Mitchell, 1978) – but that value is slow to change in people and takes nearly 2 years to complete a cycle. (Michelakis, 2007). Mitochondrial dysfunction appears to be related to fatigue, according to Filler et al. (2014).

A challenge was 1 pill every hour, for 16 hours. I performed 4 of these within a month. The last challenge I performed, I did a dosage equivalent to 32 pills, which is one pill every 30 minutes for 16 hours. This should have kept my total GSH levels to over 1000 for almost an entire day. I felt a little better afterwards, and no major changes. The mid-day fatigue epiosdes I was having, were not present on any of the challenges. I could have probably stayed awake for over 24 hours.

* Probiotics [June 28th, 2016 – Restarted on November 29th, 2016]

Probiotics seem to have numerous health benefits. (7/2/16 is when I started taking them). I started to take them because antibiotics, can disrupt the homoeostasis of your intestinal microbe for up to a year according to Zaura et al (2015)

Lactobacillus is needed for proper Thyroid Function due to the fact your gut bacteria needs to convert some inorganic forms of Selenium into more bioavailable forms to protect your thyroid from damage (Pessione,2012; Triggiani et al., 2009). There is strong evidence that your digestive system biome influences/controls levels of anxiety, depression, etc (Carabotti et al., 2015; Saulnier et al., 2013)
Applications of the Lactobacillus strain regulates emotional behavior and GABA receptor behavior via the vagus nerve system (GBA) (Bravo et al., 2011), chronic fatigue syndrome (Rao et al., 2009; Singh et al., 2012) alters brain biochemestry (Tillisch et al., 2012)

Alterations to gut microbiota have been shown to improve mood and reduce anxiety in patients with chronic fatigue (Logan and Katzman, 2005; Rao et al., 2009). Oral supplementation of probiotics resulted in reduced urinary cortisol and mental stress (Messaoudi et al., 2011) and reduced reactivity to sad mood (Steenbergen et al., 2015b) in healthy human volunteers.

Certain strains of probiotics, namely Lactobacillus and Bifidobacterium, produce GABA, in vivo. (Barrett et al., 2012; Boonstra et al., 2016). GABA and its receptors are widely distributed through the ENS (Auteri et al., 2015). Additionally, there is considerable communication between the gut and the brain through the vagal nerve (Cryan and O’Mahony, 2011; Cryan and Dinan, 2012). This nerve consists of sensory nerve fibers that relay information about the state of bodily organs to the central nervous system (Thayer and Sternberg, 2009).

I took them for a month over the summer I did not notice any changes to my mental functionality and/or energy levels. I stopped taking them. However, I didn’t get bloated after large meals of Pasta anymore.

I think the issue is that the dosage is too low for my health problems. If I increased the dosage, This should flood my intensestences with a very very large amount of friendly bacteria.

For comparsion, The overall total number of bacterial cells of the intestinal flora is approximately 1014, which is 100,000,000,000,000 or 100 trillion (Ott et al., 2004). I think megadosing might have a profound effect on my recovery, since small dosages might not even be worthwhile and/or take a long time, perhaps months and years to actually do anything. With this test, I will end up flooding my body with 1% of the total number of gut floria, which is much larger than the standard dosages recommended.

On November 29th, just after 2am, I did an initial loading test of 15 pills of 30 trillion (Dr. Tobias Probiotics: 30 Billion with Delay Release & Spore Forming Strains – Probiotic Supplement for Post-Antibiotic, Health & Immune Support Manufacturer: Dr. Tobias). Within 90 minutes, just before bed, I had a surge of happiness – similar to being high on painkillers but not in the same thing. The effect wasn’t short lived, and has progressed for over 24 hours. I feel slightly better, happier and content than before. I had a surge of energy that prevented me from sleeping. When I woke up, I felt pretty good, but not amazing.

I ordered some more diverse strains since these probiotics might not be effective any longer, due to their age (bought them in June). I will do another loading test soon, but for the next test, it will consist of megadosing the 60 billion strain with 20 pills very quickly, on an empty stomach. An hour later, I will megadose with 20 pills of 30 billion, which will will be over a trillion, or 1% of the total number of gut bacteria in a normal person. Baby steps are not needed for what I have been going through for the last year.

* CDP Choline. [Started taking this November 11th of 2016]

Choline influences nervous system functionality via acetylcholine. Choline is used for the biosynthesis of acetylcholine and the cell membrane phospholipid phosphatidylcholine, which increases the repair of <any> myelin sheath damage, and increases it’s density, in vitro. (Skripuletz et al., 2015; Weiss, 1995; Clement and Kent, 1999; Hunt et al., 2001). According to the paper by Skripuletz et al., CDP Choline increases density of myelin, reversed motor coordination deficits, etc after 6 weeks of treatment, in vitro (Graph 1 & 2), also crosses the Blood-Brain-Barrier (Conant and Schauss, 2004; Garcia-Cobos et al., 2010) I hypothesis the reason it takes many ‘floxies’ a long time to see any relief (ie: x symptoms go away, mitigated) is because the foods that contain Choline (meats, eggs) are in small amounts, combined with slow regeneration of myelin, is the culprit. This supplementation *should* improve my functionality to my sweat glands in my arms and legs, and perhaps repair them. I am better overall than 10 months ago, but I still have stamina problems/sweating problems on my arms and legs. One thing I have to keep in mind is that an overload of Choline will cause brain fog and cognitive defects (temporarily until the balance is restored), so I have to do small dosages. 300mg every other day.

Choline is quite safe (Grieb, 2014; Adibhatla and Hatcher, 2002), Adverse effects are extremely rare, and consisted of stomach pain, diarrhea, and headaches. CDP-choline seems to have a lack of toxicity, but a fatal dosage in rodents is 8,000 mg/kg orally, which translates into 560,000 mg CDP-choline in a 70 kg person, which is almost not possible to ingest. (Skripuletz, et al., 2015)

Cipro, in Dogs, appears to affect Acetylcholine by inhibiting it’s release (Tagaya et al., 1995), Enrofloxacin exposure caused lipid peroxidation and neural dysfunction (lower AchE) in fish (Wang, et al., 2009)

Too soon to say if it’s working, but I will make sure I note down if it does anything. I might try Alpha GPC as well since it’s almost similar to Choline.

Future self-research – Dates in [ ] are the beginning part of my research.

* Post-Levaquin CNS/Brain repair stack [November 27th, 2016]

I’m going to try a common nootropic stack that enhances cognetive functionality (and repairs <any> CNS damage). I already am trying one part of it (Choline), but the stack consists of the following, Uridine, Choline, DHA (Omega3s) and B6/12. This will increase dopamine Receptors in the brain/CNS, according to some reports which I have not fully read over yet (Papers coming).

 

* Mitochrondia Defective Purging [November 26th, 2016]

Keeping NAD+ levels elevated, over 50%, for a week, decreases mtDNA mass by 50% in vitro via a 2009 paper “Nicotinamide enhances mitochondria quality through autophagy activation in human cells“. I need to come up with a protocol to purge the defective mitochronia completely (or at least in the 80th percentile range), then go full blast with biogenesis (ie: PQQ, etc)

* Resveratrol [November 3rd, 2016]

Resveratrol is quite interesting. It facilitates increased oxidation of fatty acids, mitochondrial biogenesis, mitochondrial respiration, gluconeogenesis, improves mitochondrial function, protects against metabolic disease by activation of SIRT1 and PGC-1a, l prevents insulin resistance, improves vascular function, (Diaz-Gerevini et al., 2016; Lagouge et al 2006; Csiszar et al., 2009; Ungvari et al., 2011).. however, there’s some conflicting information about if it’s effective at all. Some users of this are even complaining of joint pain that doesn’t go away.

* Omega-3 [August 14th, 2016]

High-dose Fish Oil refluidizes all cell membranes including Mitochondrial membranes by altering their plasticity. High dosage, meaning 2G a day. (Herbst et al., 2014)

* Nootropics [May 9th, 2016]

I tried these before, but I had a horrible reaction. According to numerous people, you need to take them /with/ Choline, as they deplete the Choline in your body. Curiously, when I took Oxiracetam (a small dosage), the negative effects I experienced are exactly like what happened on October 26th of 2015 (anxiety, vomiting, nervousness, brain fog, etc) Could there be a link between Levaquin and acetylcholine? Citicoline intake will increase acetylcholine production downstream, otherwise. Pramiracetam tasted horrible.

* N-acetylcarnosine (eye drops) [May 4th, 2016]

My eyes are more dry now than they were pre-Levaquin. N-acetylcarnosine based eye drops seem to be the only antioxidants out there (at least until NACA based ones show up on the market)

What MAY or MAY NOT have worked:

* MitoQ.

I took the entire bottle for 30 days and I didn’t notice anything major, but I was in agony from tendon pain. My energy levels were very bad from October 27th until my IV treatments, when they improved slightly. There’s so many numerous papers in the peer reviewed literature about MitoQ and it’s health benefits. I might revisit it and take it for a long time. It’s expensive, though.

* Collagen Advanced Formula 1, 2 and 3 (6x pills a day, should have gotten the Powder).

When I started taking this, I noticed the throbbing pain in my tendons was reduced slightly. Could be placebo, though, as it takes your body 100 days to make new collagen (Khan et al., 2001; Bass, 2012)

* D-Ribose

1500 to 3000mg (2x) a day – Gives me /some/ energy. I take it once in awhile, now. I get very bloated when I take more than one 1500mg pill in a 24 hour period. I took 4 pills one day and I almost shit myself because of the stomach pain.

* DHEA

1x a day – Increases testosterone levels gradually. Seems to have increased my sex drive and body temperature.

* BioPQQ.

Mitochondria Biogenesis / up-regulation. (20mg/day). I didn’t notice much of anything , but I took it as directed until the bottle ran out.

* D-ribose-L-cysteine (RiboCene)

Seems to enhance/increase intracellular GSH aka Glutathoine (Oz et al.,2007, Kader et al., 2014), reduces LDL (Kader et al.,2014), Reduces pro-inflammatory cytokines in the stomach and restores homoeostasis in the gut (Kim et al.,2009). It’s very expensive, though. A 30 day supply is $70 USD (1x pill a day) – but the peer reviewed literature makes mention of serum levels of GSH increase rather quickly with that supplement, but then drop off since the cells absorb the GSH, directly. I took it for 2 weeks and didn’t notice anything. It’s very expensive, though. I might revisit this. It actually made me very tired when I started taking it.

* Methyl-B12

Made me very tired during the day. So tired I was falling asleep standing up. [Might be a dosage issue]. Methyl-B12, in some studies with super high dosages, appears to reverse peripheral neuropathy via nerve regeneration (Watanabe,. et al 1994; Tanaka, 2015; Head, 2006; Okada et al., 2010), improves nerve conduction velocity (Morani et al., 2010). However, in a large scale trial, B12 supplementation did not appear to have much effect (Dangour et al., 2015). But, that study was only performed with patients mean age of >= 75 years. I might revisit this, though with super high dosages. Methyl-B12 deficiencies affect Adrenal functionality (Lodhi and Panchal, 2014; Majeed and Arafat, 2010), though.

What did NOT work at all:

  • Liquid Glutathione (Liposomal Glutathione)
  • Pure Acetyl L-Carnitine (Bulk Supplements Powder)
  • Pure R-Alpha Lipoic Acid (Bulk Supplements Powder)
  • Pure Ascorbic Acid (BS Powder)
  • Pure Glycine Powder (BS Powder)
  • Pure NAC (N-Acetyl L-Cysteine) Powder (Smells really bad!)
  • Magnesium Threonate – Acid reflux.
  • B12 shots from my doctor. Did nothing to my fatigue.
  • Caffeine at any dosage, from 20mg to 1000mg.
  • Thyrovanz – Desiccated thyroid (50mg, smallest available). This is a full compliment thyroid supplement, from NZ Cows; Contains T1/T2/T3/T4 – I didn’t need a prescription for it since it’s marketed as a supplement. I’m taking this because T3 influences Glutathione levels in your body (Dasgupta et al., 2007; Howie et al., 1995; Fernández and Videla, 1996). T3, for example, seems to reverse Apoptosis in Rat Liver Mitochrondia (Mukherjee et al., 2014). This is a temporary treatment because I do not want to throw myself into full blown Hypothyroidism. Took it for a month, and noticed nothing but my heart rate increasing.
  • Diet changes. Anti-gluten, paleo, etc. None of them did anything as far as I can tell.
  • …And many more.

Out of the 55 supplements/therapies I have tried, only 8 of them have shown any effect at all. 2 of them had very bad side effects (2 out of the 3 nootropics)

 

October 2017 update:

It’s been awhile since I’ve updated. I debated a few months ago for an update, but I honestly just pushed it back.

A newly published paper (Michalak et al., ‎2017) is probably the most comprehensive study of Fluoroquinolone Toxicity ever published (so far)

I will focus on something that really stands out in the paper – At least for me – The authors argue that because FQs have a very high melting point, over 200C, the crystals are likely to become ‘stuck’ within your body and cannot be removed by normal biological processes. The data for their research on FQ molecules has been published in nearly 17 years ago (Andriole et al., 2000). However, even they argue that because this phenomenon is unusual, there is some other process(es) that causes this since it’s not affecting every single person who takes Cipro, Levaquin, etc.

In an earlier post from last year, I cited a paper (Strauchman and Morningstar, 2012) where their patient had more or less Fluoroquinolone Toxicity. Genetic testing revealed polymorphisms in cytochrome P-450 pathway, as well as genetic variations in the catechol-o-methyl transferase enzyme, the Nacetyl transferase enzyme, and the glutathione-s-transferase enzyme necessary for glutathione conjugation and phase II detoxification. After a course of antioxidant IV therapy, a majority of the patients symptoms went away except for a few which were likely something else.

I had an earlier hypothesis that my symptoms were more or less caused by detoxification issues, and this evidence strongly links my symptoms to prolounged accumulation of FQs(!!)

The paper (pp. 3-5) also makes it clear that it’s highly likely, though indirectly, that CYP450 polymorphisms is the culprit for FQ accumulation in human cells. CYP450 inhibition by FQs were found in chicken by Shlosberg et al. (1997) and Granfors et al. (2004) Regmi et al. pointed to the inhibiting effect of FQs in dogs on P-450 1A but not on P-450 3A (Regmi et al., 2005; 2007) Ozone therapy appears to remove FQ’s from liquid water (Feng et al., 2016).

If I really do have polymorphisms – A solution to removing the accumulated FQs would be antioxidant IV therapy such as NAC (which also reversal many modes of mitochondrial dysfunction), Glutathione(?).

Of course, this is all in-vivo but the evidence that FQs accumulate in the body – And the accumulation is likely because of detoxification polymorphisms – And FQ removal seems possible – Is /all/ backed up by evidence.

More evidence that antioxidant IV therapy removes FQ accumulation is an article by Cohen (2008) where he reports a patient was disabled for 3 years from Fluoroquinolone treatment, but once the user started antioxidant IV therapy, his symptoms improved dramatically. (http://www.medicationsense. com/articles/jan_dec_08/ toxicity070508.php)

So I suppose I need prolonged IV treatment of N-acetylcysteine (NAC) and Glutathione to support correct detoxification.

So you may ask – why not oral supplementation?

NAC has very poor bioavailability, less than 5%, and data suggest that the drug itself does not accumulate in the body, but rather in its oxidized forms and in reduced and oxidized metabolites (Holdiness 1991; Watson and McKinney 1991). However, N-Acetylcysteine amide (NACA) is supposed to
address the shortcomings of NAC by making it cross the Blood-Brain-Barrier, increase bioavailability, etc (Sunitha et al., 2013).  Also see Ketterer, Coles and Meyer (1983) on glutathione/detoxification.

Glutathione has a half life of a few minutes (Acetylcysteine Glutathione) but it’s taken up by the cells. I guess I need to perform a heavy challenge to see if I can remove FQs from my cells, if this behavior exists.

All and All;

I’m pretty sure if all of us floxies got together and submitted some genetic tests (detoxification pathway information) on a table we could find a cause of this and then we can proceed with treatment.

23andme is about to have a customer – I need to see if I do have these polymorphisms.

Stay tuned.

 

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** 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, effect 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.

151 thoughts on “Gary’s Story – Levaquin Toxicity

  1. Linda December 14, 2015 at 10:53 am Reply

    I share you distrust of the allopathic medical community and will avoid like the plague. I am impressed you actually got two in the health professions that knew what the problem was, and it is again infuriating that this has been going on, unabated, since the 80s. I have such contempt for those who allow it to continue. You were smart to stop at two—I stopped at 4 and it devastated my entire body.

  2. crazyhorseladycx December 14, 2015 at 12:22 pm Reply

    I’m so delighted to hear ‘f yer progress! Wish I’d been able to learn more (what’cha wrote) when I was at my worst. But, I’m gonna take all this information ‘n run with it. We’ll see if’n it can correct all that’s gone awry with myself…3 years ‘fter the fact.

    Big healin’ hugs comin’ at’cha ‘n thanks so much fer sharin’ yer story.

  3. Melissa December 14, 2015 at 8:41 pm Reply

    Hi Gary,
    Glad to hear your doing better, do you know what dr gives gluthione and if anyone had bad reactions to this iv? Thanks Melissa

    • Linda December 14, 2015 at 9:19 pm Reply

      Hi Melissa, any naturopath or integrative MD that does IVs would likely have the glutathione. I have not heard of any reactions. It is something we already produce in our bodies. It’s been called the mother of all antioxidants.

    • Gary December 15, 2015 at 12:39 am Reply

      My list of supplements from Amazon:

      Jarrow Formulas Pyrroloquinoline Quinone Nutritional Supplements, 20 mg, 30 Count
      BulkSupplements Pure Acetyl L-Carnitine
      BulkSupplements Pure R-Alpha Lipoic Acid (R-ALA) Powder (10 grams)
      BulkSupplements Pure Ascorbic Acid (Vitamin C) Powder (1 Kilogram)
      BulkSupplements Pure Glycine Powder (250 grams)
      BulkSupplements Pure NAC (N-Acetyl L-Cysteine) Powder (250 grams)
      Magnesium Threonate, Patented Original Magtein Supplement
      Optimal Liposomal Glutathione
      youtheory Collagen Advanced Formula 1, 2 and 3, 290 Tablets
      MitoQ 5mg Dietary Supplement – Capsules 60

      There’s a doctor in Rockville, MD who gives those types of IVs which I am seeking out and going to have it done really soon.

      I forgot to add – The night I took my 1st pill, I was hallucinating, the worst nightmares you can think of which I remember to this day: I had dreams of being shot, stabbed, poisoned, beheaded, drowned, struck by lightning, set on fire, unable to breath. I was also seeing ‘flashing lights’ in my eyes when my eyes were closed. Then the CNS symptoms appeared 3 weeks later out of the blue

      Honestly, the brain fog, depersonalization and other symptoms almost appear to be benzo withdrawal symptoms!

      • Linda December 15, 2015 at 11:26 am Reply

        Gary—I also had the light flashes. It was terrifying. Lasted almost ten minutes and looked like an arc filled with electrodes. Also had “living” nightmare—unable to breathe like I was being suffocated. This stuff is beyond poison. Anyhow, your supplements look great and I think you will find the IVs very helpful. They saved me as far as I am concerned.

        • Gary December 15, 2015 at 4:15 pm

          Linda

          Did you have the Brain fog/Depersonalization like I have? Did the IVs clear that up for you?

  4. dan hedrich December 15, 2015 at 6:09 pm Reply

    hi gary, i was flloxed 26 days ago. levaquin 500mg for 7 days. my main symptoms are muscle spasms, tingling hands and feet with itching with some joint pain in knees,neck elbow etc.. symptoms new seem to appear like night sweats the past couple of nights all symptoms new or continuing seem to be mild but very scary and bothersome. i am going to have my cells tested on thursday a lab in houston does the testing. so far i am taking vit c, life force multi with x-tra magnesium. ordered liposomil g but the doc told me to hold off until the results of the cell test came back. i have no brain fog or vision problems as of yet. by the way had some of the nightmares you described. any insight would be welcomed thank you. dan.

    • Gary December 21, 2015 at 3:06 am Reply

      Dan, You’re having a mild reaction to it.

      First thing you will need to do is find a doctor willing to give you antioxidant IVs – This is much much more effective – If you can, have them do a vital comparison before and after (BP, o2 stats, H/R) your Glutathione IV therapy – I’d shoot for a high dosage at your first one – Notice your before and after.

    • Haroon September 12, 2017 at 11:33 am Reply

      Hi dan, i have experienced similar symptoms. Have you made any progress and did you go forward with the iv treatment suggested by gary? if so did?it help?

      • Thomas September 12, 2017 at 2:41 pm Reply

        It took approximately 11 months for my symptoms to abate. I went from functionally disabled to functional with narcotics. The only supplement that seemed to really help me is magnesium glyconate. Once I knew I could manage the pain I needed to know if I had greater danger of blowing or tendons. I used the narcotics to allow me to experiment and find out if the pain and dysfunction were made worse from exercise. In my case it was not made any worse nor did I seem to be incurring more damage. I didn’t want to develop an addiction to narcotics so I decided to not use them more than two days in a row and to only use them to be productive. On days I didn’t use them I was less physically active and would just accept the pain as a new normal. Occasionally I still use Norco if my tendons, nerve and muscle pain flares up. In the past, winter months were the worst and especially any time when low pressure fronts (rain) were upon me. The upcoming cold and wet months may cause me more pain. I will not know for sure until I experience them. Here are the best words of wisdom I have based upon my experiences. 1. It will take time to improve. 2. Be patient and kind to yourself 3. Use pain medications as sparingly as possible. 4. Keep yourself as physically active as possible but make sure you are not further damaging yourself. I wish you the very best.

        • L September 12, 2017 at 5:00 pm

          Hi there…something I have suggested in other posts. You might want to look into prolozone injections where your damaged tendons are. Post Cipro I had torn meniscus. My naturopath injected both with prolozone (ozone and procaine) and that was around 11 months ago. I could barely walk on one knee, and now I am even able squat down. It took about 3 months to see improvement. It helps your body heal itself, and since I was not going to get surgery and didn’t want any other western medical intervention, this was what I decided to try. Glad I did. (and it cost a fraction of what surgery would have been.) Many sports doctors now offer this as well.

  5. Linda December 15, 2015 at 6:35 pm Reply

    Gary, not sure I had the depersonalization. Definitely the brain fog and that seems to have diminished for the most part. I found side effects starting to subside after twice weekly IVs for about 6 weeks. I continued to get them for months—had over 50 total. The most difficult brain thing now is severe anxiety and crying (everyday) for no reason. I have performed on stages for over a thousand people, and in intimate black box theatres, yet now I find it difficult to be around more than a few people at a time. I have ventured into restaurants a couple times. Lots of crying ,but made it through. (Immersion therapy!)

  6. dan hedrich December 16, 2015 at 4:57 am Reply

    hi linda, how much does a session of Ivs cost? and from whom are you getting them from?thanks dan.

    • Linda December 16, 2015 at 9:48 am Reply

      It depends on the IV and also on the ND. I get them from someone in Thousand Oaks, CA but also have gotten some in Ventura. The H2O2 was $100. The others varied between $150 and $200. Not cheap, but I really had no alternative. Where are you located?

      • greendingy August 27, 2018 at 3:31 pm Reply

        Hi Linda, I live very close to T.O (Agoura Hills). Is this Dr. Gonzales? I had mine with Dr. Horton. He is retiring and I am looking for a good doctor if you have any suggestions! Thank you.

        • L August 27, 2018 at 5:37 pm

          I used to get them from an ND that retired. Now, yes, Dr. Gonzalez. He is changing his practice to cash only…no longer going to take insurance (starting in October) but you can try to get reimbursed. However, since you pay upfront for the IVs I don’t think that will make a difference…BUT you would likely need to see him at least for an office visit before doing any IVs there. I really like Dr. Gonzales. He is a Lyme expert (also an internist and pulmonologist) and while he can write a prescription, he usually tries to go the natural route first. (plus he is aware of how anti-pharmaceutical I am now.)

          I also used to get IVs from ROOTS in Ventura, but they are not longer doing IVs. One of the places they recommended is right where you are: Dr. Clinton Pomroy in Agoura Hills, so you might want to check him out.

  7. dan hedrich December 16, 2015 at 12:29 pm Reply

    hi linda, i am in nj. are you feeling any better with these treatments? i am going to see the doc tommorrow and then i will take it from there. thanks for your reply. dan.

    • Linda December 16, 2015 at 12:32 pm Reply

      While I still have issues I am dealing with, the difference before and after the IVs is enormous. Yes, I feel they made a huge impact. Didn’t happen overnight, but I truly believe they saved my life.

  8. Gary December 21, 2015 at 3:01 am Reply

    I spoke with an Immunologist – He has a theory that people who get long term side effects w/ levaquin/cipro/etc with no metabolic anomalies (meaning your vitals and others look good) have a antioxidant malfunction that causes CNS stimulation because of excessive ROS buildup due to tissue damage – From what I gather in my dialogue with him – Your body simply cannot produce enough antioxidants to clear the excessive ROS’s out of your body, that’s why people tend to get worse before they get better. (And my O.P. about this)

    Please see http://www.ncbi.nlm.nih.gov/pubmed/23991888

  9. dan December 22, 2015 at 7:40 am Reply

    gary, thanks for getting back to me. i started some of the stuff listed on your post. i started the liposomil 3 days ago, acetyl-l, and the lipoic acid. still have the spasms, tingling in legs hands and feet. the chills started up again tho not as bad as 3 weeks ago with weird sensations on lower back. i can deal with some of the joint and tendon stuff but the neuro aspect of it scares me. are you in maryland? i am here in jersey. let me know how things are going. i have a doctor around the corner from me but i think he does vitamin c therapy only. thanks again dan.

  10. dan December 22, 2015 at 9:45 am Reply

    gary, the doc around the corner does h202, gluthione, meyers coctail, vit c, chelation therapy. should i have the glutathione first? and what does the antioxident therapy consist of? thanks dan.

    • Gary December 22, 2015 at 10:26 pm Reply

      Dan, The antioxidant therapy is Glutathione – You may wish to try that first. Myers cocktail is a good one, but I’d try glutathione directly first, then a week or so later, get the Myers done, then another glutathione IV. glutathione in an IV drip is more powerful than anything you can eat – as it bypasses your liver and goes right into your bloodstream. It may take a few treatments but it should make you feel *somewhat* better after the first treatment.

      Make sure you record how it makes you feel before/after.

  11. Linda December 22, 2015 at 10:56 pm Reply

    Totally agree…you can also do glutathione in a “push” rather than an IV. I got a push of it with each IV I got (except H2O2). Got it with Myers, high dose C, phosphatydalcholine…every time.

  12. dan December 23, 2015 at 4:23 am Reply

    linda-gary, thanks so much. i hope this does help the spasms are scary.

  13. Mark S December 27, 2015 at 5:02 pm Reply

    Gary,

    When did you notice an improvement in your Achilles? I just ordered MitoQ and PQQ and hoping those will help out with mine.

    Thanks,
    Mark

    • Gary December 28, 2015 at 3:56 am Reply

      My A.Ts. stopped hurting completely about the 3rd week – Roughly 22 days after the last pill of Levaquin. This was /before/ I took MitoQ/PQQ – I was on sleeping pills and painkillers which helped me sleep and allowed it to heal. Please note, depending on the dosage and your health beforehand, it might be wise to take collagen powder on top the MitoQ – If you don’t, your A.Ts might not heal correctly, and cause random pain.

      I started on MitoQ/PQQ in November, 2x pills a day because the bottom of my feet were hurting/aching – Plus my toes were hurting (not the joints but the tendons around the joints in my bit toes). I noticed a reduction in pain within a week – I cannot completely attribute that to MitoQ – but I can’t rule it out, either.

      I’ve tapered off MitoQ a good bit, and only taking them a few times a week.

      As of December 28th here are my current symptoms:

      – Energy levels are still not what they were – After levaquin I still had plenty of energy, until had a serious CNS reaction around the last week of October is when the fatigue started, as well as the brain fog, depersonalization, always cold, inability to sweat,etc. The brain fog is still there, just not as bad, as well as the depersonalization. The inability to sweat is there, just not as bad. I am not myself, meantally.

      – I still have random pins and needles feeling in my feet when they get too hot (ie: when i sweat with socks on during some kind of activity) – But no where near as bad as November when a warm shower would cause me great pains.

      – My body’s ‘clock’ is broken. I can’t feel the time of day, meaning when it’s morning, I would be able to ‘feel’ it and adjust my energy levels etc. I am ‘stuck’ in a certain time in my mind where time never changes, biologically.

      What I am gunning for is Glutathione IVs as soon as I can afford it. I am pretty sure I will see a marked improvement after the first injection. You might want to consider having that done as well to help with your A.Ts – That should help reduce inflammation and allow them to heal correctly.

  14. Linda December 28, 2015 at 9:51 am Reply

    Hope you can get the glutathione IVs. They helped me immensely with pain and overall. (I didn’t get IV—got a “push” with each of my other IVs.) I was also told by my ND that you can do it with a nebulizer as well, which in the long run may be a more affordable option.

  15. Cindy Jones March 23, 2016 at 4:18 pm Reply

    Does anyone know where iv glutathione treatment is available in Ehgland please?

    Many thanks.

  16. Pete June 23, 2016 at 8:47 am Reply

    In my view, this type of recommendation needs a black box warning at the top of the report. It’s a non-surgical procedure with a very high risk element. There is no mention of the fact that glutathione can mobilise mercury.

    • L June 23, 2016 at 11:18 am Reply

      Pete, if you are talking about IVs of glutathione, it is VERY safe. I have not read of any harmful side effects from this. Gutathione is something our own body produces. It is the mother of all anti-oxidants. “As a detoxifier, glutathione is unparalleled. It binds metals and other toxins and transforms them into compounds that can be excreted in bile or urine. Once bound, these toxins become water-soluble and can be transported out of cells” https://www.holisticprimarycare.net/topics/topics-o-z/vitamins-a-supplements/1421-what-every-doctor-should-know-about-glutathione.html (you can also find articles from Mayo Clinic and Cleveland Clinic and other more “allopathic” institutions.

      • Eve July 17, 2016 at 3:26 pm Reply

        What about liposomal glutathione, the one from amazon? Does it work the same? How much should i take for a start? Any side effects? I am so scared now of taking any medicines. Thanks!

  17. Gary June 28, 2016 at 12:52 pm Reply

    Your body naturally produces Glutathione.. an external injection via push or other method of excessive glutathione will assist in removing any excessive buildups of environmental toxins.. According to a paper (Patrick,2002) which states this in the abstract:

    “Public health concern over mercury exposure, due to contamination of fish with methylmercury and the elemental mercury content of dental amalgams, has long been a topic of political and medical debate. Although the toxicology of mercury is complex, there is evidence for antioxidant protection in the prevention of neurological and renal damage caused by mercury toxicity.”

    Have you had a toxscreen performed, to measure the level of heavy metals in your blood before and after? How are you certain your ‘dental fillings’ caused you issues, when many others developed more problems long after their last pill of cipro/levaquin before anyone has tried IV therapy (Glutathione push, etc)?

    Sounds like you had the well documented delayed reaction to cipro/levaquin/etc.

  18. L July 17, 2016 at 4:39 pm Reply

    I wish I knew what to tell you Eve. I have heard from different sources that it does work ,and from others that it still does not get into the bloodstream like with an IV. That being said, I think if it DOES work, your body will love it! I wouldn’t be scared about using it, just follow whatever directions came with it, or email the maker. Also, there are other ways to raise you glutathione level. http://drhyman.com/blog/2010/05/12/what-is-glutathione-and-how-do-i-get-more-of-it/

  19. Amanda McConnell July 31, 2016 at 11:00 pm Reply

    Have you found out yet if your FREE T3 is in the upper quarter Range? Prior to being on prescription thyroid medication I had a constantly low body temperature, dry skin , no sweat , very poor tolerance for both hot and cold weather, chronic fatigue (WHich I have again but for other reasons ), brain fog , eczema and I would sleep for 12 hours / night . The list goes on… I went 7 or so years undiagnosed because my TSH was only 1.5.. when I finally was diagnosed it was because my t4 was just slightly outside of the “normal” range .. i didnt know at the time to ask for FREE t3 and FREE t4… point I’m making though is that many people can even be “in range ” and still hypothyroid because the range is WAY too broad… if you have classic signs of a thyroid issues like a low body temperature, and your free t3 is below the upper quarter Range, I would try ordering a product called “Thyrovanz or Thyrogold”.. unless you can get your doctor to prescribe a medication with t3 like Naturethroid or Armour.
    I know you have tried lots of supplements but I’ve heard that both of those products are identical to the Natural thyroid medications prescribed in the US but they are from New Zealand I believe … they market them as a “thyroid supplement ” to get around the prescription thing…
    i think I sent you this website before but check out Stopthethyroidmadness.com
    I also ironically enough had a friend tell me about a place in California that healed his uncle of a bad reaction to a antibiotic… ill look it up and send the info…
    As a side note, i hope you find a good endo.. they are suppose to be the experts but 2 out of the 3 I saw were rude and none of them seemed to know much about secondary hypothyroidism (pituitary/hypothalamus related)..They seemed to be great at treating diabetes but most seem to go by out dated info on hypothyroidism and only diagnose by the way too broad and very unreliable TSH test.. My hair was falling out , I had gained 40 lbs , my skin was cracking and bleeding and I would fall asleep driving and I still had an endo overlook me because he wouldn’t check or acknoledge anything but TSH… once I finally got diagnosed and treated it was life changing and I felt like writing every doctor that told me I was “fine” a letter with before and after pictures. Also, I do not know how this forum works but i cant remember the password to my email but I think this is sent via Facebook.. anyway.. hope u get well soon !

  20. Thomas September 14, 2016 at 11:16 pm Reply

    Levaquin/Levofloxacin has destroyed my ability to be active and/or sleep without pain or sleep medication. Last week of June 2016 I Took 750 mg for five days. Everything was going fine for about 9 days after I completed the medication. Then for no reason my right knee started to hurt. Then my shoulders began to hurt. Then my neck and wrists. Then my ankles started to hurt. Pain kept increasing even if I was not moving at all. Fingers became partially numb and skin started feeling like millions of tiny needle pricks in my arms, legs and neck. Then hips and lower back started hurting. All of my Kaiser doctors were clueless as to what was happening to me. I had to do all the research and tell them. Like Gary, but to a lesser extent, I have figured out that I have to try and keep myself has healthy as possible and am trying different supplements, etc. to help heal myself. Just in the last week I have also developed elbow pain which is just another addition to the cascading Levaquin tendonapathy that has all but destroyed my well being. What makes me even more angry is that Kaiser should have known not to prescribe me this antibiotic. I have multiple issues that put me in the high risk for these side effects and they are on my Epic/Kaiser electronic medical record. Kaiser dropped the ball by not using their system to make them aware that I am too high risk to take any fluoroquinolone antimicrobial. Since I have 35+ years in health care and health insurance patient care related, pathology laboratory, autopsy deiner, IT professional and Epic certified professional I know why this should never have happened. There are many different antibiotics Kaiser could have prescribed for me. I have made them aware that their system needs additional logic and/or information collection screens when ever Fluoroquinolone antibiotics are prescribed. I too, wonder if this will ever end? Hey Gary, awesome work man!!!!

    • Gary November 25, 2016 at 10:56 pm Reply

      Hi Thomas. New update coming – I rewrote it from scratch. I had to, because when I first started writing it, my mind was complete shit (no offense). I felt like a caveman for weeks and months..

  21. Gary September 26, 2016 at 11:39 pm Reply

    Thomas

    It will get better.

    The pins and needles is nerve damage – The extent of the damage might be unknown, With moderate PN type nerve damage, axonal regeneration does happen, but it can take as long as 26 months (Lee and Wolfe, 2000; Grinsell and Keating, 2014) for complete recovery. I’d probably have a nerve punch biopsy from a neurologist. Stay away from caffeine completely.

    I had pins and needles in the shower when exposed to water, but it went away completely in a few months. If I were to have taken the entire bottle, I’d be singing a different tune now.

    My newest updates, which I am writing, outline pretty much that supplements have been generally worthless for me, a majority of them. The only thing that really wasn’t placebo was Carbon 60 and the Antioxidant Treatments.

  22. F December 2, 2016 at 5:27 pm Reply

    Gary, Wow! you have done an incredible amount to research. I am a retired ALS Paramedic in Canada and am 20 months out from 45 days of Cipro. My issue is Small fiber neuropathy confirmed with punch biopsy last June. I never really had much in the way of tendon issues but initial anxiety, tinnitus and now decreasing exercise tolerance are part of my symptoms. Like you I have found my doctors are useless. I am still hoping my sfn will diminish over time.

    • Gary December 2, 2016 at 11:24 pm Reply

      Hello ‘F’

      I’m just a lowly BLS person. Most ALS providers are called narcan vending machines around here. 🙂

      SFN might improve, but depending on the level of damage it might not heal correctly. You should read over these papers about Methyl-B12 and super high dosages, as well as CDP choline. I don’t think I have SFN, because I do not have any nerve issues that I am aware of at least.

      B12 Papers:

      Okada, Kiyoshi, et al. “Methylcobalamin increases Erk1/2 and Akt activities through the methylation cycle
      and promotes nerve regeneration in a rat sciatic nerve injury model.” Experimental neurology 222.2 (2010): 191-203.
      Tanaka H. [Old or new medicine? Vitamin B12 and peripheral nerve neuropathy].
      Brain Nerve. 2013 Sep;65(9):1077-82. Review. Japanese. PubMed PMID: 24018744.
      Head, Kathleen A. “Peripheral neuropathy: pathogenic mechanisms and alternative therapies.” Alternative medicine review 11.4 (2006): 294.

      Choline supplementation repairs damaged nerves, in vitro:

      Skripuletz T, Manzel A, Gropengießer K, Schäfer N, Gudi V, Singh V, Salinas
      Tejedor L, Jörg S, Hammer A, Voss E, Vulinovic F, Degen D, Wolf R, Lee DH, Pul R,
      Moharregh-Khiabani D, Baumgärtner W, Gold R, Linker RA, Stangel M. Pivotal role
      of choline metabolites in remyelination. Brain. 2015 Feb;138(Pt 2):398-413. doi:
      10.1093/brain/awu358. PubMed PMID: 25524711.
      Conant R, Schauss AG. Therapeutic applications of citicoline for stroke and cognitive dysfunction
      in the elderly: a review of the literature. Altern Med Rev 2004;9:17-31
      Weiss GB. Metabolism and actions of CDP-choline as an endogenous compound and administered exogenously as citicoline. Life Sci 1995;56:637-660
      Hunt AN, Clark GT, Attard GS, Postle AD. Highly saturated endonuclear phosphatidylcholine is synthesized in situ and colocated with CDP-choline pathway enzymes. J Biol Chem 2001;276:8492-9
      Garcia-Cobos R, Frank-Garcia A, Gutierrez-Fernandez M, Diez-Tejedor E. Citicoline, use in cognitive decline: vascular and degenerative. J Neurol Sci 2010;299:188-92.

      The Methyl-B12 treatment would consist super dosages of it, probably 20,000mg worth a day. Choline might require 1000mg a day.

  23. Sarah February 7, 2017 at 10:59 am Reply

    Hi Gary, great anecdote. Why did you stop the c60 if it was working? Where did you obtain it? I know other floxies were experimenting with it but don’t know outcome. Are you still at 90%. That’s where I’ve been stuck for a year.

    • Gary February 14, 2017 at 1:09 am Reply

      Hello Sarah.

      I stopped taking it because I was doing some other things afterwards and I didn’t want to cross contaminate my testing (self testing is difficult without feeling placebo)

      The biggest changes I felt were from the following:

      – Carbon 60
      – Megadosing Probiotics
      – High Dosage of Methyl-B12 (5000mg/day)
      – CDP Choline (500mg/day)

  24. M G February 16, 2017 at 8:28 am Reply

    Hi Gary, I could say I’ve been floxed by taking 2 pills of Biaxin XL (Clarithromycin) at the end of April 2015. I’ve had the whole range of symptoms experienced by floxies and to this day, still my main issue is insomnia. I was a healthy person with good sleep patterns, but post-flox I wasn’t able to sleep not even for an hour (hard to believe) for a couple of weeks, I’ve tried sleeping pills, natural aids (valerian, melatonine etc), deep sleep is a dream for me. I’ve ordered liposomal C & glutathione to see if they’ll help. What do you suggest to improve my sleep ?

    • Gary February 16, 2017 at 7:06 pm Reply

      Please note what I am about to tell you is not medical advice, just some options based on a case on the peer reviewed literature.

      If you’re having trouble sleeping – Your CNS is probably overstimulated, so it’s affecting your sleep/wake cycles. This is a symptom, but not a cause.. I’m thinking your symptoms are chronic inflammation. The only thing I can suggest is perhaps getting a inflammation panel performed which consists of the following tests

      CRP (C-Reactive Protein)
      ESR
      PV (Plasma Viscosity)

      Next, you might wish to consider a heavy metal toxicity urine challenge. I’m betting you have impaired CYP450 because of Biaxin turning off your phase II, which led to a toxic increase in substances that would normally be subclinical.

    • Zainab November 29, 2017 at 9:04 am Reply

      M.G plsmail me on xain77@gmail.com. i was floxed with the drug. Clarithromycin or biaxin

  25. L February 16, 2017 at 9:59 am Reply

    It’s not at all hard to believe you couldn’t sleep even an hour. After I was floxed, I didn’t sleep at the first couple weeks, and then after that, for months, even WITH a sleeping pill, I was lucky to get anywhere from 1-5 hours of sleep. I was afraid I would never sleep normally again. I tried every herbal supplement that was suggested, tart cherry juice, you name it. It took 6 or 7 months but I finally was able to sleep almost normally again. Since then, in the past year or so I have had ocassional insomnia, but mostly normal sleep patterns. For me it was just time. (also, since I imagine you are supplementing with magnesium, it helps to take that at bedtime.)

  26. M G February 16, 2017 at 12:16 pm Reply

    Hi L. I’ve taken Magnesium Bisglycinate Plus before bed a couple of times (New Roots Herbal, Magnesium 150mg, Taurine 30mg), but it didn’t seem to improve my sleep, made me a little calmer. Should I try other types of magnesium (liquid, liposomal) ?

  27. L February 16, 2017 at 12:59 pm Reply

    You know, I am not sure if that would make a difference. For me I think it was just time (although yours seems to be going on much longer.) I was having horrifying, gasping, choking, breathing problems so I was taking the generic of ambien because it was the only reprieve I got from the nightmare of struggling to breathe. I wouldn’t necessarily recommend it to anyone, but in my case it was crucial. Once I was able to breathe even semi-normally, I started weaning myself off because I didn’t want yet another pharmaceutical “fix.” I was able to do that slowly, and once I was off of them, my sleep returned to almost normal.

  28. M G February 16, 2017 at 1:30 pm Reply

    Thanks, L. Another issue that I still experience but to a lesser extent is tinnitus, these days I ignore it. You’re probably right, time has definitely been the solution for healing as long as the body has the right ingredients, I’m still wondering whether I’m missing some of these ingredients.

  29. Sallee McDermitt October 23, 2017 at 2:19 pm Reply

    Gary, I have had one appointment with a Functional Medicine doc in Dallas area. She is pushing PK Protocal (developed by Patricia Kane).. some sort of lipid exchange; Given high cost, they suggested to alternatively take Phosphatidyl Choline supplements.. which I could find nothing about them that discussed FQ toxicity.. If you do not know, anyone you would suggest I reach out to?.. I told them I preferred old fashion Myers Cocktail with Glutathione push afterwards. your thoughts?

    • L October 23, 2017 at 2:31 pm Reply

      Sallee, I don’t know how effective phosphatidlcholine is in supplement form Igot it in IV form and I believe it was quite helpful. (I got 40—not cheap, but that what was recommended.) I also was getting H2O2, high dose C and myers, so hard to tell which helped once, but I truly believe that as severely as I was floxed, they made all the difference.

      If you do try a PC supplement, try to get it in liposomal form, which is supposed to protect it from being destroyed during digestion. Not sure anything would compare with IV of it though.

    • Gary October 25, 2017 at 12:12 am Reply

      Sallee

      The first thing you should do is have 23andme performed, before you go spending money on any doctors or supplements.

      Then once you get your genetic data back, Upload it to https://geneticgenie.org/detox-profile/ and let me know what it says. I’m pretty sure you have polymorphisms that are preventing FQ metabolism and excretion in CYP450, SOD/GSH and a few others.

      • Sallee McDermitt October 25, 2017 at 6:55 am Reply

        will do/ have been thinking about it but didn’t know if it was worth it. My daughter tested positive for MTFR (but has type that can take folic acid).. I probably have it to as the rest of the 1/3 population of the US for white caucasions..I take folate as a precaution…

        Was the phosphatidylcholine IV part of PK protocol?

      • Sallee McDermitt October 25, 2017 at 1:25 pm Reply

        At your suggestion, I ordered the 23 and me test kit and will upload and respond back to you. I had my first Myers cocktail to just get more vitamins in my body.I have tried chelated Magnesium and as I increased the dosage if gave me diahrrea. What do you think of Dr. Carolyn Dean’s liquid magnesium? Or do you have another suggestion.

        • L October 25, 2017 at 1:26 pm

          What form did you take? Citrate is the worst for diaahrea.

        • Sallee McDermitt October 25, 2017 at 1:57 pm

          It is Doctors Best High Absorption ‘Elemental Magnesium – Chelated’….’made from magnesium glycinate lysinate chrelate’

        • L October 25, 2017 at 3:54 pm

          hmmm. that has the glycinate form, and oddly enough, I found this: “Magnesium glycinate — Magnesium glycinate (magnesium bound with glycine, a non-essential amino acid) is one of the most bioavailable and absorbable forms of magnesium, and also the least likely to induce diarrhea. It is the safest option for correcting a long-term deficiency.” Not sure what I would do.

          Here is a link that may or may not help. https://drcarolyndean.com/2010/02/four-ways-to-stop-magnesium-from-causing-diarrhea/

      • Sallee McDermitt July 5, 2018 at 4:44 pm Reply

        GARY, I FINALLY UPLOADED MY 23 & ME RESULTS TO GENETIC GENIE.. I ONLY HAD ONE RED GENE VARIATION FOR CYP1B1 L432V PLUS YELLOWS INCLUDED CYHP2C19*17. GST[1 I105V, GSTP1 A114V, SOD2 A16V, AND NAT2 R197Q

        WHAT DOES ALL THIS MEAN?

        • Typenu July 6, 2018 at 12:28 am

          Means polymorphism aren’t the main reason for FQ toxicity, but just a factor. Likely it’s an intracelluar shortage on magnesium and minerals, respective cations in general. Would also explain why today occur more and more cases. 20-30 years ago when FQ were introcuded, food quality was better and magnesium shortage rare.

          Following genetic factors would just increase the toxic effect:
          – polymorphisms in CYP450
          – polymorphisms in SOD/GSH

        • Sallee McDermitt July 6, 2018 at 7:42 am

          Thanks Gary SO much. To summarize, you are saying I have NO high risk polymorphisms in CYP450 or polymorphisms in SOD/GSH.. If not, would it suggest I don’t have to be as worried about taking P450 inhibitors other than FQ so long as I continue my improved diet and supplements ? Obviously I will never take another FQ.

        • Sallee McDermitt July 6, 2018 at 7:50 am

          Gary, I forgot to ask which gene variations are related to polymorphisms in CYP450
          and polymorphisms in SOD/GSH? This is all Greek to me but appreciate the education.

  30. Sallee McDermitt October 23, 2017 at 3:58 pm Reply

    To clarify, what exactly did you get in IV form – phosphatidyl choline or something else?
    Did you try PK Protocal which is IV Posphatidyl cloline & Glutathione? http://pkprotocol.com/milz.html

    I had also seen where you recommended CDP Choline supplements which I think is similar to phosphatidyl choline supplements. Why did you choose CDP Choline supplements over phosphatidyl choline ?

    • L October 23, 2017 at 4:50 pm Reply

      I got the following IVS: phosphatidylcholine; high dose vitamin c; Myers and H2O2. I got a push of glutathione with almost every IV except for the H2O2 (they don’t play well together)

    • L October 23, 2017 at 4:51 pm Reply

      just saw the last part re CDP…not familiar with that. must have been someone else who posted.

  31. Gary October 25, 2017 at 12:09 am Reply

    Only thing that helps with detoxification is multiple treatments of Glutathione, NAC and D-Ribose in an IV drip..

    • L October 25, 2017 at 8:27 am Reply

      I think it’s extremely important that we not say things like “the only things that help.” I have used several different IVs, large numbers of supplements….everyone is different and what may help one person, may not help another. Magnesium is extremely important because it gets depleted and is connected to nerve health and so many other bodily functions. There are other protocols like infrared sauna that can help with detox, Probiotics are hugely important because the gut is connected to many issues body-wide. High dose vitamin C IVs are helpful, as are Myers. Something called Flor Essence is a great detox.

      • Gary November 5, 2017 at 4:22 am Reply

        IV drip based things like NAC, GSH, Ribose, etc are superior to activating Phase II detoxification than Oral supplementation.

        And I’m not talking about ‘detox’ as a product you can buy.. I’m talking about xenobiotics being excreted by CYP450 enzymes, GSH, etc. Having impaired Phase1/2 will cause your body to be unable to metabolize and/or excrete FQs like Cipro, Levaquin, Pesticides, etc.

        Antioxidant IVs are the only way to remove such harmful things from your body, as there’s quite a few references in the peer reviewed literature of FQ’s /inhibiting/ CYP450 enzymes – Not all of them – But enough to cause delayed toxicity and chronic, long lasting effects.

        • L November 5, 2017 at 9:55 am

          IVs are superior because a) you can take them in quantities you would be unable to do in supplemental form (eg, 50,000 mg of vitamin C and b) by going directly into the blood/cells, they bypass the degrading effects of digestion. Unfortunately, some don’t have access to IV therapy. I would once again also caution saying “the only way.” Infra red saunas are a way to detox. There are also supplements that aid in detoxing such as NAC, alpha lipoic acid, milk thistle, etc. Yes, I think IVs are superior, but as for them being “the only way?” No, I don’t believe that’s true.

  32. Gary November 5, 2017 at 4:15 pm Reply

    “I would once again also caution saying “the only way.” Infra red saunas are a way to detox.”

    Infrared saunas, according to the literature, do not metabolize xenobiotics. There’s little to no scientific evidence on pubmed/nature/PNAS, that saunas do anything worthwhile to your detoxification pathways.. Unless you can provide a study showing it actually removes harmful xenobiotics from tissue/cells.

    ” There are also supplements that aid in detoxing such as NAC, alpha lipoic acid, milk thistle, etc. Yes, I think IVs are superior, but as for them being “the only way?” No, I don’t believe that’s true.”

    NAC has poor bioavailability. 5%, according to literature. And once it’s metabolized, it’s in a different form. This is why NAC in an IV drip is used at hospitals when someone overdoses on aspirin.. and not in ‘pill’ form because of it’s very poor bioavailability and metabolism issues where it’s in a form that is less effective. Personally, the only way NAC is ever going to be a help to someone is if you took large doses, like 5000 to 10000mg a day, but even that doesn’t help it being metabolised to a less efficient form. NACA fixes the flaws of NAC (bioavailability, BBB permeability) but it’s not on the market yet.

    If you have comorbid detoxification pathways, the /only/ way to remove accumulated xenobiotics is by antioxidant IV therapy.

    Here’s the abstract from a 2012 paper on a patient that had numerous genetic issues that likely prevented xenobiotic metabolism and excretion (FQs)

    “However, this patient also had other non-musculoskeletal symptoms that seemed to resolve after the patient received a treatment that was designed to improve detoxification via improved methylation, inhibit autoimmune potential, and decrease systemic inflammation. While somatic symptoms are most reported, there are other published cases of non-somatic side effects including delirium,13 Tourette’s syndrome,14 seizures,15 and dermatologic reactions.16

    Although there is no officially recognized fluoroquinolone syndrome, the patient represented here seems to fit that type of diagnosis. Fluoroquinolone medications may inhibit hepatic cytochrome p450, which would result in impaired detoxification of toxic elements and substances.17 However, it is important to note that fluoroquinolones were the most commonly prescribed class of antibiotics as of the year 2002.16 The adverse reactions described here previously reportedly occur in only a small minority of cases.2 These may be under-reported, where these symptoms were viewed as separate and distinct symptoms. Another explanation is that patients who truly experience fluoroquinolone toxicity symptoms do so because they have comorbid impaired detoxification pathways that inhibit fluoroquinolone metabolism and excretion. In the patient presented here, we found that she had polymorphisms in specific methylation and acetylation enzymes that may cause poor detoxification and clearance of toxic elements.9,18–20”

    I went through buying all kinds of supplements and attempting different things, most of them are useless overall.

    • L November 5, 2017 at 4:21 pm Reply

      Not sure what your background is, but an integrative internist, two NDs and an holistic dds all recommended infrared sauna. I’d stick with their advice.

      And I don’t know what supplements you went through, but to say “most of them are useless overall,” is not only not helpful, it is likely highly inaccurate.

  33. Gary November 5, 2017 at 8:01 pm Reply

    “Not sure what your background is, but an integrative internist, two NDs and an holistic dds all recommended infrared sauna. I’d stick with their advice.”
    any sources of such a claim, you find little

    Normal biological processes like your kidneys, liver, etc are responsible for removing xenobiotics like Pesticides, Paint Thinners, Alcohol from your body, not a sauna – Which reminds me, there appears to be no evidence whatsoever that an infrared sauna removes any ‘toxins’ from your body, according to pubmed; which not showing any case studies, data/research ‘infrared saunas’ and ‘detoxification’ – I even looked on my syllabus for any paid articles on PNAS or Nature.

    The Melting point of a single FQ molecule is 200C(!!) which means that in order for a ‘sauna’ to dislodge it with thermal vibrations, you’ll have to increase the temperature to that, which will likely become fatal.

    Even SA and TA are reporting it to be, well, rubbish:

    https://www.scientificamerican.com/article/heavy-metal-sweat/
    https://www.theatlantic.com/health/archive/2017/06/infrared-saunas-will-not-detoxify-you-toxins-sweat/528813/

    I’m not trying to tell you what to do. I’m just skeptical of claims that have no evidence to support them. If you can find me one peer reviewed paper that backs up their claims, then I will apologize.

    “And I don’t know what supplements you went through, but to say “most of them are useless overall,” is not only not helpful, it is likely highly inaccurate.”

    I’ve tried about $1500 worth of them, and most of them are snakeoil at the end of the day. At the beginning I didn’t know any better, but now I realize a lot of them were just wasted money.

    The only ones that benefited me overall were my own IVs I performed with high dosages of Antioxidants, Carbon 60 and mega-dose probiotics in 400billion to 2 trillion loads. The probiotics loading challenge was interesting because it showed a pronounced effect on my body which wasn’t placebo.

    So to clarify:

    – There’s no evidence in any known journals that a ‘Sauna’ will affect Phase II Detoxification (which is a biological process) and/or affect CYP450
    – A lot of supplements that you take, orally, won’t really do much because of bioavailability and pre-exiting genetic polymorphisms.

    • Dee November 6, 2017 at 7:48 am Reply

      Gary. What about getting glutathione injections? I am a little concerned about getting the IVs as I have heard that some people can have a bad reaction to them. My Doc said the next form that would be a little less intensive would be the injections? Also I have heard people have good results with ozone IVs. What is your take on both of these treatments?!

      • Dee November 6, 2017 at 10:17 am Reply

        Gary. When did you feel like you actually recover?? I see you got floxed in Oct and felt somewhat recovered in Dec and then I April you did the IVs which you felt significantly helped you? Did you feel a lot better in Dec and then pretty recovered by April??

      • L November 6, 2017 at 10:53 am Reply

        Hey Dee, I know this question was to Gary, but I will give you my experience. I WOULD have gotten ozone except I was getting H2O2 IVs and there was too much overlap…but I know my ND had used ozone injections with other floxies. (I would just do the injections. Ozone “tents” I have been told are not a good idea because even thought your neck and head is sticking out, you are still inevitably inhaling ozone which you don’t want to do.) I got a “push” of glutathione with every high dose C IV, Myers and phosphatidylcholine IV. (They would just wait til the end of the IV and Push the glutathione in with a syringe into the same hole. I have read about some people have a problem with glut, but it was great for me.

        • Dee November 6, 2017 at 11:18 am

          L. Yes I asked Ruth about the glutathione IVs and she said some people can have an issue with them and I seem to be sensitive right now to a lot of things!! My Doc had mentioned doing glutathione injections and even just doing a half vial to see how I do so I may consider those! Gary seemed pretty informed about glutathione so was just seeing what he thought? The ozone was not as injections. I was considering the IV? Again I am very cautious and skeptical about any thing I put in my body as I had a reaction to melatonin, l Theanine and I am pretty sure “methy” B vitamins gave me a really bad itchy back? Since I went off the B Vit my itching is pretty much gone 2 weeks later? Don’t know if it was the B but some people have issues with the”methyl” kind. I seem to be extremely sensitive so a lot right now! Which I hope will get better as I improve??!!!

        • L November 6, 2017 at 11:37 am

          yeah when I said injection I meant as IV. Have you had any testing? My doctor did a number of tests through True Health Diagnostic, which can not only check for deficiencies but also genetic things like the two types of MTHFR.

        • Dee November 6, 2017 at 11:47 am

          L. No I have not done testing as I live in in the Central Valley and there are not a lot of highly qualified NDs around this area. Hard to find someone that knows what they are doing!!!

        • L November 6, 2017 at 12:14 pm

          These tests were ordered through my MD (although he is integrative.) Since they are done by a specialized lab, the blood is drawn at the doctors office and sent out, but it was covered by my insurance. Anyhow, if you have an MD you trust who is more integrative, he can do it through True Health Diagnostics. I found out I have one of the MTHFR mutations so now I take a daily 5-mthf 1 mg supplement. Also found out I am more at risk for blood clots which I never knew, so I told me to up my EPA fish oil when I fly.

      • Gary November 6, 2017 at 2:21 pm Reply

        Dee

        The paper I cited about the research (Oct 2017) has strong evidence to support the notion that FQ metabolites/molecules are accumulated in the cells of your body, causing prolonged suffering. Normal biological processes like Cytochromes P-450 in the microsomes are normally responsible for metabolizing and excreting a drug like Cipro/Levaquin/etc from the body. If you have impaired detoxification pathways due to genetic polymorphisms, your body is unable to remove FQ molecules correctly so they ‘remain’ in your body.

        According to the following paper, Ozone Therapy can removed FQs from Water, so it might be an interested approach to try:

        M. Feng, L. Yan, X. Zhang et al., “Fast removal of the antibiotic flumequine from aqueous solution by ozonation: influencing factors, reaction pathways, and toxicity evaluation,” Science of The Total Environment, vol. 541, pp. 167–175, 2016.

        In the following paper, a patient was presented that had what the Doctors called, FQ Toxicity Symptoms. Her genetic testing showed a lot of polymorphisms in her Phase II detoxification, which may have been caused by FQs inhibiting P450 overall, leading to delayed toxic effects as her body slowly accumulated xenobiotics to the point of Brain Fog, etc. Treatment was IV Antioxidant therapy to improve detoxification. Her symptoms improved greatly.

        Strauchman M, Morningstar MW. “Fluoroquinolone toxicity symptoms in a patient presenting with low back pain.” Clinics and Practice. 2012;2(4):e87. doi:10.4081/cp.2012.e87.

        Also, in the 2017 paper I cited, it even says this about P450 and FQs:

        “Liang et al. [90] measured the subchronic toxic effects of NOR on a swordtail fish by measuring mRNA expression of cytochrome P450 1A (CYP1A), cytochrome P-450 3A (CYP3A), glutathione S-transferase (GST), P-glycoprotein (P-gp), and their corresponding enzyme activities. Results showed that NOR significantly affected the expression of CYP1A, CYP3A, GST, and P-gp genes in swordtails. The gene expressions were, however, more responsive to NOR exposure than their corresponding enzyme activities. The analyzed enzymes are very important because they express the ability to catalyze detoxification of xenobiotic substrates, including FQs. The possible reduction of its activity in humans may be of high importance, because FQs undergo biotransformation in the liver from approximately 50 percent for pefloxacin to about 6 percent for ofloxacin [91]. Although glucuronide conjugates have been identified as minor metabolites for some agents, most metabolic reactions involving quinolones occur through microsomal oxidative mechanisms at the cytochrome P-450 site. These metabolic alterations involve the piperazinyl moiety and usually result in compounds with significantly less microbiologic activity than the parent drugs. However, the conclusions from fish cannot be directly transferred to humans and the results suggest the possibility of the delayed toxicity to be connected with reduced detoxification induced by itself.”

        The summary is that FQs affect the expression of P450 at different sites and destabilizes your normal Phase II which leads to toxic side effects to your CNS, M/S, etc.

        Side note – It appears FQs may chelate Se2+(!!) which is needed for many biological processes. (Se^2 = selenium)

        Glutathione IV therapy should probably be mixed with NAC (N-AcetylCysteine) because NAC reverses many methods of mitochondrial dysfunction and aids in detoxification of xenobiotics.

        • Dee November 6, 2017 at 3:05 pm

          Gary. Thank you for that info. So if I didn’t want to take a chance on the glutathione IVs then my thought is that the injections would at least be the next best thing?? I have been told that some people can have a negative response to the glutathione IV and I am very sensitive to things right now so am a little scared of the IV. How long did you take to recover by the way?? Did you have brain fog??

        • Shane March 19, 2018 at 10:46 am

          Hello Gary. All the research and personal testing you have done is brilliant. I’m sure we all appreciate the work you’ve put in.

          My question is regarding popping of joints and tendons (not sure which is popping) it is not associated with pain but it seems to happen everywhere in my body. I am 6’4″, 32yrs old and was very athletic before cipro (7 day 500mgx2 a day in October 2017)

          Do you have any idea how to make this stop? It seems to be worsening and I have tried numerous things.

          Popping, ocassional joint pain, digestive issues and floaters are my symptoms.

          Any advice would be appreciated.

        • L March 19, 2018 at 10:54 am

          I had joint popping too esp in the knees and later ended up with torn meniscus. I had to use a cane because I couldn’t put any weight on one leg. I didn’t want surgery and ended up getting prolozone injections in both knees. I am 3 years out and about a year and a half post injections and have been hiking, doing moderate squats and knees are going well. All my other popping just went away

          I had horrible floaters. They were so large and constant it was like looking through gauze. I used something called can c eye drops religiously 4 times a day for a year and it helped a great deal

        • Dee March 20, 2018 at 9:56 am

          Hi L! I was just wondering how long it took for your muscles and joints to feel strong again and start to have more stamina?? I am 9 months out now and feeling a lot better although still have sleep issues, some anxiety and of course tinnutus which I hope gets more quiet!! My muscles and joints will ache a little after doing yard work and physical work. I haven’t pushed myself beyond walking and everyday household and yard work. When did you start doing actual exercise and strengthing?? Were your muscles and joints hit that hard other then your knee? How is your tinnutus? Hope it is improving a little for you!!! Dee

        • L March 20, 2018 at 11:05 am

          Hi dee. Actually what kept me from doing anything physical was all over body fatigue. I wouldn’t say my muscles were any mor damaged than my body as a whole. As for my joints I felt a bit of weakness in the ankles and wrists but my knees were the worst. I would say it was a bit over the one year mark when I started trying to exercise again but nothing jarring I very ntonue to have problems with one wrist. It’s weird one day I can do anything with it and the next I have trouble holding a glass. Since I had/have so much nerve damage I think it is likely more that than a tendon issue. as for the tinnitus it’s still here and the volume changes. I would love to get Nd something to get rid of it.

        • Dee March 20, 2018 at 11:58 am

          L. Thanks for the info!! I am hoping by the year mark that I feel mostly recovered and get back more muscle and joint strength! My muscles, tendons and joints were never it that hard that I was debilitated but especially the first 6 months they would get sore, achy and stiff! They are a lot better but can feel achy after a lot of working! I am only 9 months out and from what I have read a lot of people feel much improved by a year or year in a half out so I pray to be mostly recovered by then although fully recovered would even be better!!! The biggest thing I worry about going away is my tinnitus!!😞

        • L March 20, 2018 at 12:08 pm

          Yeah in addition to ongoing vision and breathing issues my tinnitus is So annoying. Would love to experience enjoying quiet again. Keep me posted if you find anything that helps!

        • Nathaniel March 20, 2018 at 12:08 pm

          L, I think we share similar stories. Can I connect with you directly. I’m curious about what you’ve experienced and where you’re at. From what I’ve read of your posts, we have a similar experience.

        • Dee March 20, 2018 at 1:24 pm

          L. I know you still have some lingering issues but do you feel fully recovered now?? Did you feel mostly recovered at a year Ina half???

        • L March 20, 2018 at 1:56 pm

          I feel somewhere in the 90% -95% recovered. I think most of the remaining issues (vision, numb toes ) are permanent. Tinnitus likely too big still hopeful. Skin damage permanent from sudden large weight loss and collage damage permanent. I am hopeful the olfactory hallucinations will go in time ditto the strangling sensation whic is less and less

        • Dee March 20, 2018 at 2:23 pm

          L. Well I pray you will still see some continued improvement!! Hopefully your tinnitus will get more quiet!! That is the biggest issue I worry about right now. I know I have come a long ways in 9 months so hoping the improvement continues!! I lost 50 lbs when I was first floxed but put about 10 back on and actually feel good at this new weight as I needed to lose some weight!! Did you put your weight back on?? Has your tinnutus improved at all since you first got it??

        • L March 20, 2018 at 4:40 pm

          I did put most to f the weight back on. No improvement in the tinnitus. Some times it seems worse

        • Nathaniel March 21, 2018 at 7:51 am

          L, can I connect with you to learn more about what happened to you. I think we have very similar experiences so far.

        • Dee March 22, 2018 at 6:37 am

          Hi L. Did you have quite a bit of peripheral neuropathy when you were recovering? Did you always feel numb in your toes? My feet /toes will tingle and feel a little numb but mostly after sleeping and then it improves some as I get moving. Do you have numb toes all the time it do you have any relief on occasion? Just wondering how your periphial neuropathy started and progressed or got better???

        • L March 22, 2018 at 10:52 am

          My first side effect was tingling and numbness in a few fingers (and s large swelling over the wrist and floaters). About a week later my toes went numb. At some point the fingers began spasming wildly out of control. A few months later the fingers were mostly normal but I couldn’t use them to grip things properly. These days they are numb on waking and then that goes away. The toes are still numb 24/7 and it still drives me crazy.

        • Dee March 22, 2018 at 1:43 pm

          L. Well if your numb fingers went away maybe your toes will improve in more time!! My toes sound like your fingers as they are numb upon waking and then get better during the day. I sure hope they fully heal!! Being 9 months out I hope I still have a chance of full recovery!! The tinnuitis concerns me the most but I haven’t given up hope for that to get better or at least improve!!! Fingers crossed!!!🙏🏻

        • L March 23, 2018 at 1:18 pm

          I kind of doubt it t this point. My fingers were better in a couple months. My toes have been like this for three years with no change. I think it is some of the “permanent nerve damage” the label mentions

  34. Gary November 6, 2017 at 3:58 pm Reply

    Dee

    I cannot comment on the negative reactions as there’s really just anecdotal reports of it causing some issues. Glutathione is pretty safe though, as your body produces it naturally. However, if you have polymorphisms, the Glutathione your body produces will have a slight flaw in the molecules and it will not function correctly so external Glutathione in an IV might be worthwhile to seek. However, I would use Glutathione with NAC in an IV drip, but I’d only consider that if you’ve had genetic testing done to look for any issues with your detoxification systems.

    I’m not completely recovered, I’d say, 80% overall with energy problems and some cognitive defects.

    • Dee November 7, 2017 at 8:10 am Reply

      Gary. Can you test for polymorphisms in your body? Is the 23 and me the only test for that and detox pathways? What are my options for those tests??

    • Gary November 11, 2017 at 1:21 am Reply

      Deb

      There’s strong evidence that us ‘floxies’ have severe genetic polymorphisms that prevent Fluoroquinolone metabolism and/or excretion.

      If your body doesn’t metabolise it correctly, it’s likely it cannot excrete it correctly… So you have persistent Fluoroquinolone molecules ‘stuck’ in your body.

      So if you have polymorphisms in various detoxification enzymes, that would point to possibility of treatment instead of eating every supplement you can think of.

      Genetic testing would reveal these polymorphisms.

      • L November 11, 2017 at 9:09 am Reply

        Gary, I think perhaps that might account for variations in severity, but it is thought that EVERYONE would be effected by flqs given enough (meeting their threshold.) I had been given both Cipro and Levaquin in the past with no reaction. Third time was “a charm.” I also did genetic testing and the only thing “off” was that I now have to take 5-mthfr every day.

        • Deb November 11, 2017 at 10:47 am

          L

          Did you have the 23andme test? For some reason Google isn’t working right now–what does the 5-mthfr do to help? Thanks.

        • L November 11, 2017 at 11:03 am

          NO, Deb, my integrative doctor did some testing through a lab called True Health Diagnostics. IT can test for many of these same things, like The 5mthfr is for a genetic mutation —I had one of two. (Some people have both.) It gets pretty complicated, but I pulled this off of one holistic doctor’s site: “My current stance on the heterozygous MTHFR A1298C mutation is that it is very common and does not seem to pose too much concern unless there are other methylation or cytochrome mutations present. Obviously, if one leads a lifestyle which is unhealthy (smoking, high stress, toxic exposures) and consumes an unhealthy diet (refined carbs, processed meats, saturated fats), then having a heterozygous A1298C mutation may contribute to cardiovascular disease, depression, fibromyalgia and others” The OTHER of the two mutations, with different letters, which I do not have has separate issues, and then if you have BOTH mutations, of course, everything is multiplied. IT’s pretty complex and is something you would want to talk about with your health care professional. With mine, he just said it means staying on this 5-mtfh supplement for life

  35. Gary November 12, 2017 at 10:57 pm Reply

    L:

    “Gary, I think perhaps that might account for variations in severity, but it is thought that EVERYONE would be effected by flqs given enough (meeting their threshold.) I had been given both Cipro and Levaquin in the past with no reaction. Third time was “a charm.” I also did genetic testing and the only thing “off” was that I now have to take 5-mthfr every day.”

    It’s also possible people that consume Cipro/Levaquin, have [their] P450 inhibited which would lead to systemic, delayed toxicity, as the various Liver Enzymes cannot remove xenobiotics. This is known in the literature.

    For example, according to a paper that I cited in my post (Strauchman and Morningstar, 2012) a patient that was on Cipro developed way more symptoms after the round had ended. Genetic tests revealed polymorphisms.. Treatment was Antioxidant IVs which resolved a lot of the CNS issues (episodic tachycardia, blurred vision, brain fog, etc) but the patient had an autoimmune disorder (undiagnosed) which was aggravated by her impaired detoxification.

    Those polymorphisms could have been present before Cipro, or /caused/ by Cipro leeching out Mn/Mg/Fe/Se/etc from the body, causing epigenetic expression changes.

    Most of the FQs have the same behavior towards antioxidant systems..

    • Typenu May 24, 2018 at 5:40 am Reply

      Hello Gary,

      your valuable self researches are a pleasure to read. I tried much of it and can confirm your results.

      Btw. do you have results about suspected polymorphisms in P450?

      I suppose it’s an aspect for severity of FQ-toxicity, but main aspect I assume a shortage of intra cell magnesium. Magnesium moderates the topoisomerase II of mDNA and if one has lot’s of magnesium cations reserves inside mitochondria it can replace the chelated cations and avoid mDNA damage.

      Beside nutrition supplements I see non sugar, low carb and intervall fasting as baseline therapy as it maximizes autophagy, especially mitophagy.

      The sooner we are able to put damaged mDNA into mitophagy the better, as they otherwise replicate and can become dominant in cells.

      • Gary June 8, 2018 at 6:46 pm Reply

        Typenu

        Sadly, I haven’t had genetic testing done yet because of life issues.

        I’m going for another round of IV Therapy this time next month, going to have a drip over 2 hours done to keep my total GSH levels elevated.

        • Typenu June 9, 2018 at 12:47 am

          Hi, have you got tested your (reduced) GSH level already? And ratio of reduced GSH to oxidated GSH?

          There are some solutions o keep reduced levels up.

          1. applying reduced GSH via IV
          2. reducing back oxidated GSH via Vitamin B2 and B3
          3. to supplement cystein/NAC (glycin, glutamin)

          Did you change your diet already to low carb, ketogenic combined with 8/16 interval fasting?

          ketogenic diet reduces free radicals by around 40% so reduced GSH will oxidate much more slowly. With interval fasting during 16 hrs without any energy intake reduced GSH levels can recover.

          I read a German book about mitochondrial therapy and going by the symtoms mentioned there you could title it “threating FQ toxicity”.

          I am from Europe and do research in a forum, GSH shots are quite cheap here, 10 shots with 600 mg GSH cost 150 EUR. You can even buy GSH and inject it by our own into muscle.

          Read that in the USA it’s fucking expensive.

          Maybe it would be a solution to import it.

      • Gary June 9, 2018 at 10:30 pm Reply

        Typenu

        Here in the US, You can buy GSH, not locally. But you cannot buy Saline bags unless you have a Doctor Order them for you.

        Problem is not as much GSH as it is the molecular issues /with/ GSH. Polymorphisms within your antioxidant systems will have biomolechular changes which will cause issues.

        Sadly, Glutathione’s half life in the blood is only 15 minutes..

        NAC reverses many models of Mitochondria Dysfunction, according to the literature. Even Patients on IV bags of FQs having it mixed with NAC avoids the toxic effects to Mitochondria.

        There’s still not enough research done on causes of all these issues. Some people get better (takes years), and others are disabled.

        • Typenu June 10, 2018 at 4:36 am

          Hi,

          yes GSH serum half life is quite short, but that’s due to it’s delivered into cells were it belong.

          As you know it’s a protein and free radicals do oxidate it, but it’s still a protein after, just with an electron more which it took from O2- to make it eletrical neutral. An therapeutical option could be to reduce GSH again with NADP, which needs Vitamin B2 and B3.

          Also GSH consists of Cystein, that’s why NAC helps to keep GSH up and protein whey supports GSH levels.

          Do you really need those saline bags? Destilled water should do the job too, I got GSH inejctions too. 600 mg in a syringe filled with 3 ml saline. Dripping infusions are unnecessary to provide GSH.

        • Sallee McDermitt June 10, 2018 at 11:00 am

          My Functional Medicine DR suggested I take two products that have been awesome for my recovery, notably my chronic fatigue. They are manufactured by Apex Energetics and can e purchased from a FM doc or from a compound/local pharmacy who can order them for you. They are not available on line. The are without a doubt the single most helpful supplements I have taken since being floxed 10 months ago. CAUTION: more helpful than even IV glutathione BUT start very low 0.5 ml and work up SLOWLY to max on label (4 or 5 ml)

          Apex Products:
          1. Trizomal Glutathioine ( liposomal liquid that tastes very good)
          2. Glutathione Recycler (I later stopped taking this and relied on NAC)

          Highly recommend

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    • Bobby January 5, 2018 at 4:05 pm Reply

      Hi everyone. 27 year old male here. Already posted this elsewhere but I’m trying to max out on info around these parts. I was prescribed 500 mg levaquin for ten days for chronic sinutis. After the third dose I started feeling like my tendons in my wrist were weak and hurting. Started hearing voices and became extremely paranoid and anxious as well. I then went on to read if this could be the medicine doing this to me, and was horrified by what I read. I called the doc the next day, and she said stop taking the levaquin immediately. I did and thought because I had only taken three I wouldn’t be in the trenches long. But Christ was I wrong. Both physical and mental effects. Tendons in both wrists, shoulders, knees, and ankles are hurting bad. Not excruciating, but notably bad. And I’m afraid to exercise and weight lift again. I’m also feeling this burning sensation on my skin all over. Feels quite like a sunburn. There’s no redness or rash. My face will get red right after the shower, but after applying moisturizer, it goes away within 10-15 minutes. Anyone relate to the burning thing?

      Two Saturdays ago I went to a bar (piss poor choice I know) because a good friend of mine was home from California for Christmas. I, for no reason at all, just started to have a complete anxiety attack at the bar after three beers to the point where I had to leave the bar and go for a 20 minute walk just to be able to go back in to sip on water for the rest of the night. My anxiety is the worst part about all of this so far. Constantly overwhelmed by doom and gloom. Also have been having weird dreams every night non stop. Don’t know if this is at least partially self inflicted going nuts about all these symptoms, but it’s really fucking terrifying me.

      I also feel like I’m highly sensitive to sound, like every clank of a class and every bass drops hits me like an elephant on the chest. That’s gone a way a bit since, but still lingers, and again, can’t tell if it’s because of my remaining sinus issues, the levaquin, or both.

      I’ll also be overwhelmed by malaise and fatigue. I’ll be fine throughout the day, and just out of nowhere this weakness hits and I’m out for the count. And again, like the broken record I am, II don’t know if this partially due to the remaining affects from my sinus infection because i do still feel like I have a sinus headache. But I’m scared shitless.

      I’ve always had some lingering anxiety but NOTHING like this. I was otherwise in decent health. Took and been taking Tylenol sinus, Zyrtec for allergies, mucinex 12 hour for
      Medicine and biotin, vitamin C, magnesium 250 mg, CoQ110 maximum dose, Gaba pills, probiotics twice a day, and one a day men’s health for vitamin in take. It’ll be three weeks Monday since my last dose, and I know this all sounds like small potatoes compared to the other horror stories I’ve read. But I’m still scared shitless and am desperately looking for advice and relatable discussion. I’m just praying this isn’t permanent. NOBODY in my life seems to believe that I have all of these symptoms from levaquin, but I swear it’s the only thing that adds up.

      My physical pain in these two and a half weeks have been on and off. One day my arms (including hands, arms, elbows and shoulders) will feel sore, tenor and inflamed, then it’s my legs and feet, then it’s my hips, butt and back, then it’s all, then it’s nothing. I’m considering talking to my ENT next Monday about getting sinus surgery, and also have an appointment with my allergist on Friday. Also have an appointment with a neurologist on February 1st.

      Any advice and/or words of encouragement will be unbelievably appreciated. It is nice to know I’m not alone in this. Do people (more or less younger people) generally tend to power through this and fully heal? Right now I’m having big doubts about that…

      • Nat D March 12, 2018 at 11:30 am Reply

        Not sure if you’re still watching Bobbie but I hope you’re a little better. If not, know you will get better. The anxiety and panic are horrible. The worst part by far. A mental prison of no hope where death seems the only way out. You just gave to live day to day until it ends. And it WILL end. Probably 9 months for me. Still many disabling problems and I can only hope I get better. But the psychological horror is much better and you need to know that part will pass. Nobody will understand you. Only those who have experienced it. I have only one or two people who at least believe me even though they can’t empathize. Find at least one person who believes you and tell them you’re suffering. That will help the despair. I wanted to die all the time and just needed to hear myself tell someone that. It seems like an eternity but the time will pass and it will go away. I promise. All the other problems continue unfortunately. But I still believe there’s just a longer time frame and they will get better too. Maybe it’s going to be years. So be it.

        • L March 12, 2018 at 11:41 am

          You are so right Nat. I prayed for death every day for months. OF course for me, a big part of that was because I was gasping for each breath and had a terrifying olfactory nerve damage where ALL THINGS asphyxiated me, making me a prisoner in my apartment (not that I could actually do much anyway.) But the mental / emotional issues….beyond description. At one point even having the TV or music on was too much…too stressful. It is so hard to put into words what goes on with this poison. But I DID get past that part. Took a while (hard to remember now, maybe around 10 months- a year) but I did.

        • Bobby May 20, 2018 at 9:38 pm

          Hey nat. I’ve been mainly posting on the fluroquinolone Facebook page as of late, but I’m still here.

          Christ it’s been a wild ride. Though the horrid mental effects did simmer down immensely by early March. The physical stuff pretty much stopped the second week of January, and has come back in mild fleeting spurts every here and there. Every blue moon I’ll wake up with this burning feeling in my left knee, (and only my left knee) like hot soup dripping from my knee to my shin. I’ll rub it and it goes away within minutes. I can tolerate alcohol again, as well as some caffeine now.

          Back in February I got influenza for the first time since I was nine. To be fair I’m not sure I can completely blame floxing for that. I got my flu shot about a month before I was floxed like I do every year. It was only ten percent effective and we had a horrid flu season. I was exposed to my dad while visiting and basically my goose was cooked from there. Immediately after that (and I mean THE DAY after my flu symptoms dispersed) I got c diff. Not sure how the hell that happened, but that was another hell in itself.

          Up until last week, I’ve felt about 85% back to my old self. But I brought weight lifting back in at the gym and by the week and a half mark I felt bad sleep issues, horrid anxiety, and facial and ear pressure (clogged ears). This started this past Tuesday night and is already starting to get better five days later.

          Not sure where I’m at now. I feel like I can tolerate things a lot better than i did. Certain foods and such, so maybe my baseline is getting higher.

          This has caused such a hassle in my personal life. Family just thinks I lost my shit. I think my friends kinda believe me as I used to be the easy going, fun life of the party and from January to April I basically became Howard Hughes. Basically never left my house outside work and was scared of doing anything social in case I had a horrible anxiety issue and needed to retreat.

          Without this site and the kindness of strangers such as Ruth (who’s basically been my mr. Miyagi throughout this whole ordeal), Trevor (who just recently shared his story), and the floxie community, I don’t know if I would’ve been able to carry on. I’ve never once even joked about being suicidal in my entire life. And around early February, I seriously considered it as I thought this never ending cycle of shit was never gonna end. And then add to the fact that I had virtually no support from my close ones in my personal life. Just feels like one long fucking nightmare. I owe more to this community than I can ever repay.

          Like I said it’s hard to figure out where I am. A mere two weeks ago I thought I put this mainly behind me. But with that downturn last Tuesday I’m scared of getting even more heinous effects like neuropathy or being bed ridden. I feel like it would’ve happened by now, but the fact that it’s still a possibility puts the fear of god into me.

      • Nathaniel May 21, 2018 at 2:26 am Reply

        Glad you’re making progress Bobbie. I was given the pneumonia vax for a immune system test and it was horrible. Things went downhill for months after. I get extreme ear/face/nose pressure too. Almost the worst part right now. Pressure builds up and then I can think it see right. Extreme dizziness.

        Interesting that you got cdiff. I think gut dysbiosis is central to this condition. I’m in England right now on a train in my way to taymount clinic for my first FMT. There will be 10 over the next 2 weeks. Everything got messed up in my gut after an appendectomy Mar of 16. Gut pain lead to diarrhea/ gas and then colitis for which I was given cipro and that’s when it so feel apart. I think the gut problems made me vunerable to cipro though and maybe restoring the gut can reverse the process. I’m hoping 3 months later I start to see a reversal of symptoms.

        Anyway, being 27 is good. I think you’ll heal although probably with some PTSD. I know I won’t ever forget even if I do get better. I’ve heard of post traumatic growth where your life is better after trauma. That’s what I’m hoping for.

        • L May 21, 2018 at 9:37 am

          yes, healing the gut is a major step….good probiotics, clean non-gmo organic foods, especially fruits and vegetables…organic grass fed meats. Fermented foods are good for most, but if you have histamine isues as well, not a good idea since they are high in histamine. Bad gut microbiome has now been linked to so many diseases…pretty much everyone you can think of. So you are definitely on the right track! Please let us know how the FMT works out. Have heard great things about it. And yes the psychological stuff can be horrifying. I just toughed it out not knowing what else I might do to help it. It did thankfully pass.

        • Nathaniel May 21, 2018 at 9:50 am

          I’m a member of the Facebook FMT group. I have a post there where I’m tracking progress. Just got the first transplant today. 9 more to go.

        • Dee May 21, 2018 at 10:18 am

          What is FMT???

        • Nathaniel May 21, 2018 at 10:29 am

          Fecal Matter (or Microbiome) Transplant. Trying to remove your damaged gut Flora and replace it with someone’s who’s healthy. As straightforward as it sounds. Positively effects many diseases tough. Not FDA approved in the US though even though ironically Cipro is. But of course poop is not a drug and can’t be patented by a drug company so doesn’t get the research dollars. The idea in FQad being that the powerful abx destroyed your biome and that somehow weakens your immune system and your body can’t fix itself. Replace the biome and hopefully the immune system gets jump started back into action and healing begins. Could take days, weeks or months. They don’t decide if it worked until 3 month minimum.

        • Dee May 21, 2018 at 10:44 am

          Oh I see! I have heard good things about FMT now that I know what that means!! I sure hope it will help you heal and get much better!!! Fingers crossed!!

        • Dee May 23, 2018 at 7:13 am

          L. I know you follow certain stories this one included so I have a question for you. I am now 11 months out and actually doing a lot better. I still have some issues I am dealing with though. We have talked before about the tinnitus which I am still experiencing (pulsating throbbing kind) it has gotten a little more quiet but still is annoying and wakes me up every morning! Argh!! I sure hope it continues to get more quiet?? I have been able to walk since the beginning of being floxed although the first few months I was pretty sore and achy and my joints especially knees and ankles would stiffen up and ache. As time went on that has lessened a lot and now I only get it off and on. I remember you saying your meniscus tore at 16 months out!? I am still going through the trauma of worrying about a relapse or setback or on going damage ahead. Did you have a lot of joint/tendon/ligament issues? Do you think it is rare to tear something after a year out? I know you did but were they small tears and did your joints, ligaments and tendons get strong again so that you feel you have your normal strength back?? I’m just worried about damage as I still get bouts of soreness and aching in knees and ankles. I am hoping that most bad damage would have surfaced by now?? Any thoughts on that? How is your ability to exercise now?? I’m trying to get past that phase of constantly worrying everyday about “fully” recovering. It is harder then the physical recovery so much of the time!! Dee

        • L May 23, 2018 at 8:45 am

          well here’s my good news/bad news answer (and of course remember we are all different, so what happens with me does not necessarily happen with you) BUT…bad first.

          My tinnitus sees to have gotten wore. HOWEVER, even at that, there was one day last week where I could hardly hear it at all. I have NO idea what causes to get worse or better and I sure would like to find out.

          As for the meniscus, I think I was mistaken to say it “occurred” at 16 months out. More accurately, that is when it was diagnosed. But I had trouble with my joints very early on…there were popping sounds, and I had to start taking the elevator because stairs hurt too much. So I think the torn meniscus was already there or at least “in the making” going back to maybe the first or second month of being floxed.

          Since the prolozone injections, I am back to doing most of what I did before. I was never a runner, but there have been a few times when a “jogged” to catch the mail person or something like that. I do blanks, modified squats and other exercises.

          The things that seems to keep recurring are primarily related to nerve damage ie the tinnitus, olfactory “hallucinations,” strangling sensation, pelvic area pressure. I also continue to have vision issues. Though those are much improved, I still get scares with flashes of light, floaters and blurred vision.

        • L May 23, 2018 at 8:47 am

          wow—sorry about all the typos! That was Planks, not blanks and I think you can figure out the rest. Will proofread next time!

        • Dee May 23, 2018 at 9:09 am

          L. No problem about typos. I do the same thing! Well that is good to hear that you had a quiet time with your ears last week!! Gotta keep believing in continued healing no matter what!! Maybe it is a symptom that will take much much longer to heal but will heal in time! Gotta keep believing! Well I am praying that I don’t get any tendon or ligament damage that shows up! What was the symptoms you had with your knee when you got diagnosed? I know we are all different and I hope I will feel mostly recover soon. Bring that I feel quite a bit better at almost a year gives me hope I will continue to recover more. I just need to learn how to deal with this worry! When did your joints stop aching and when did you feel you pretty much got most of your strength back? As we have talked before I was a PE teacher and want to get back to more intense exercise but am scared. For now I walk about 30 min a day and seem to do fine. A little aching in ankles and knees will occur

        • L May 23, 2018 at 9:56 am

          When I got diagnosed it was because I couldn’t walk on it! The popping had subsided, and i wasn’t feeling as “shaky” on my legs, so I had started to try to go back to walking daily. I was walking down a hill and my knee just gave out. It was very difficult to even get back home. I limped all the way, favoring the other leg. I started using a cane because I couldn’t put any weight on the one leg. I went to a sports health doctor who ordered some tests, and they showed torn meniscus. I only had the test done on the one knee, but the other knee eventually felt exactly the same, so I got the prolozone in the knee that first went out and then a month later got prolozone injection in the second knee.

          As for my vision—the blurriness was a combination of things. Really a mess. For a short period of time I couldn’t even see the tv 4 ft away. I had so many “column” floaters it was like looking through a gauze scarf. And so many of the little black dot floaters that walls and floors—anything I looked at would literally be covered with them. IT was very scary. I have also had flashes of light which can indicate retinal tears and happen whenever the vitreous pulls away. It scares me that it is still happening three years out. Tomorrow I have to see a specialist and may need to have a tear lasered. Then in addition to all that, there is also just plain blurriness.

        • Dee May 23, 2018 at 10:46 am

          L. Well glad to hear your knees got way better after the shots! That is a good thing that you are back working out again!! Maybe the flashes of light is still attached vitreous gel that hasn’t pulled away yet. That happened to me before I got floxed. My vitreous gel pulled away but not all the way. It eventually got better and mostly went away other then the floaters took awhile. Of course when I got floxed that same eye the floaters got bad again. They are improving a little at a time. I hope your retina is ok with no tearing. I didn’t realize that is how they fix it with laser?? Hopefully things are good for you at your appt! Do you feel like your legs/joints completely healed? Sounds like your legs joints muscles were in bad shape the first year?? Did you feel mostly recovered at a year in a half? I am still worried about ligaments and tendons tearing but I have been walking all along and never really had more then stiffness and aching. Hopefully no damage was done?? What do you think? I just get scared.

        • L May 23, 2018 at 2:19 pm

          yeah, I feel pretty good about my legs (aside from the horribly damaged skin on them now.) I think you’ll be ok if you’ve gotten this far

        • Dee May 25, 2018 at 6:47 am

          L. How did your vision appt go?? I hope all was well and you got good news that things are ok!!??

        • L May 25, 2018 at 9:58 am

          good news/bad news on the eye exam. It was not a retinal tear, but rather scar tissue. However in another area, there is a layer peeling-away from the vitreous, which will need to be checked again in four months. If it is worse I will need surgery

        • Dee May 25, 2018 at 10:19 am

          L. Well I will take that as mostly good news since there is no retina tearing. Hopefully everything will correct itself in the next 4 months!! Are the flashes of light from the scar tissue or the tearing? Are the problems in the same eye or different eyes? Hopefully everything can improve as time goes on!? Did they seem to think everything could heal and get better?? I hope so!!!🙏🏻

        • L May 25, 2018 at 10:27 am

          well it won’t “correct.” It will only stay the same or get worse. I had problems in both eyes but the majority of issues are in one eye. As for the flashes, that happens whenever the eye pulls away from the vitreous

        • Dee May 25, 2018 at 10:54 am

          L. Well I hope with time that you have less problems with your vision. I always believe with FQ toxicity that even with eyes time can still improve us. Do you feel you have pretty good vision in general considering where you were the first year? Did you feel mostly recovered in a year in a half?

        • Dee May 23, 2018 at 9:30 am

          L. By the way my vision hasn’t been affected too badly. I had really bad dry eyes which seem to be improving? My distance vision will get blurry from time to time. Is that how your blurry vision acts too? Some days I see pretty clearly and other days when I am driving or looking out at a distance it gets more blurry in the distance. Does yours come and go like that? It is good to hear that your vision is way better! So I guess you don’t get as many blurry days?

        • Nat July 2, 2018 at 9:19 pm

          For Dee and L.. I’m a month out from FMT. Some things better and some not. I passed a huge kidney stone on the way home which was horrible but I don’t know if it’s related.
          The week or two following were worse. Like I was sick. Runny nose etc. But then that went away. I think that might have been a herx. I’ve never had it and not sure I believe it but.. maybe. At the least it was the body adjusting to billions of new bacteria.
          Next couple weeks were better. One big thing is that I started having normal stools. Totally normal in every way. First time in 2 years for that.
          Maybe a little more energy too.
          No major healing though. Lots of very uncomfortable heart troubles. Not sure if caused by FMT or what. Joint pain, weakness has fluctuated a lot. Some days I feel a little stronger but other days have trouble waking without pain. I started taking Nystatin for the last couple weeks because I feel so sure there’s a fungal problem. Not sure if that is a good idea though. I should really give the FMT 3 solid months. But I also want to give the bacteria the best chance by making sure the yeast is under control. I have seen my thrush and geographic tongue get significantly better since.

          Still.. my worst problems are still there but FMT had a positive effect so far and im giving it two more months before really deciding. Hopefully a slow reboot to the immune system? Let me know if you have any questions.

  37. laura January 18, 2018 at 7:57 am Reply

    I really can’t believe I didn’t know that levaquin and other drugs in the same family can trigger paralysis. Everyone should be made aware of these warnings. My son had just turned 19. Went into the hospital with chest pains, x ray was normal but because of cat scan that showed possible developing pneumonia they put him on antibiotics. The next day when he was supposed to be discharged they started him on Levaquin. Everything exploded from there. He couldn’t speak, had trouble moving and breathing, ended up with tracheotomy and paralyzed from neck down. He had a sodium drop to 112 and the doctors said GBS. Now I believe his SAIDH and GBS was a result of the doses of Levaquin. He spent 3 months in hospital. It has now just been a year. I only recently put this together because I saw a news story where it was mentioned that the FDA and 2016 black box warnings. He had just turned 19 – the AAP says not to use these antibiotics on adolescents unless there is no other option and it is counter-indicated for adolescents. We are still working through his issues and hope they won’t be permanent. Gary – thanks sharing your story and al the information – you mentioned you were looking into a doctor in rockville, md for IVS. I live in Rockville and was wondering if I could get the name from you?

    • L January 18, 2018 at 10:35 am Reply

      Laura, I am so sorry for what happened to your son. It is just criminal. I won’t go into my whole nightmare but I lost over a year to horrific side effects and am still dealing with some 3 years later… BUT I have to say that IV therapy helped me tremendously. (I did high dose C, phosphatidylcholine, Myers, glutathione and H2O2. My ND had ALREADY seen several “floxies” by the time he saw me. I wish you and your son the best, and hope you can find a good ND or integrative MD. They’re out there!

      • kitten February 18, 2018 at 6:21 pm Reply

        Laura, can you please tell me who your ND is and what area? Thank you

        • L February 18, 2018 at 6:36 pm

          The ND I used to use no longer has an office. He may open one again soon. I am in Southern California. Where are you?

    • Lisa January 18, 2018 at 12:07 pm Reply

      Hi Laura,

      I’m so sorry for everything you and your son have been through! That’s beyond horrifying. I too hope that his issues won’t be permanent.

      Question – was he given a flu shot while in the hospital? Flu vaccinations can trigger GBS too.

      Gary has done a lot of cutting-edge therapies, and I hope that they help your son as much as they have helped Gary.

      Please keep in touch to let us know how your son progresses. I am so sorry for all that you have been through. It’s absolutely horrific, and my heart aches for your family.

      Regards,
      Lisa

      • L Simon July 3, 2018 at 6:11 pm Reply

        Hi Lisa, I’m so sorry for not getting back sooner. I just saw this now. It is funny he was asked over and over in the hospital if he has had a flu shot, but no one ever asked what antibiotics he was given. He was given levaquin with steroids and ibuprofen which is counter-indicated I was told. He was also was fighting an active mono infection. His big residual issues have been tendonitis in his wrists, bowel issues, and libido – at least I thought until his most recent blood work. He is back at school so finding the right doctor has been difficult and he spent 3 months getting stuck by needles daily so absolutely refused to do any IV treatments (and I didn’t quite have the place for this anyway), which from what I just read from Gary’s post in unfortunate. We did just recently do blood work – long story but for a year we wear dealing mostly severe weight loss issues (40 pounds -he had gone from 135 and 5 10 to 95 pounds at discharge) and a giant gash on neck from a botched tracheotomy. He is up to 130 now on a good day so we are moving on from this, but unfortunately his healing, though miraculous where he is at now considering all that has happened, has stalled a bit. His blood work is high Alkaline Phosphatase, low in Creatinine, raging Hashimoto’s, exhausted adrenals, low testosterone, low in D and B12, and oddly parvovirus B19 off the charts high. I am just learning about what a toll FT takes on the endocrine system, there always seems to be a new surprise around the corner. Great to have this information but I just wish we had a good doctor to work with in the NYC area that understands this toxicity. His integrative DR in NY is treating him like he is an aging 80 year old and just reacting to his blood test results and while he hasn’t said that he doesn’t believe me that he was poisoned, he does not seem interested in treating him from this perspective. I hope I can get him in good hands soon, someone I can trust. My heart breaks for him – he is just 20 and such a good kid. Who would have thought the GBS and vent was the easy part and that the FT was the real nightmare. Not a day goes by that I don’t think about how I can help him and since he doesn’t live with me I’m waiting for the day when I won’t have a bit of a panic attack each time he gets in touch. From reading this blog, although ever exhausting to deal with this, I do feel he will get better in time. Thanks to you and everyone.

    • Gary June 8, 2018 at 6:52 pm Reply

      Laura

      I use Dr Fred Bloem (http://drbloem.com/)

      • Nathaniel July 4, 2018 at 10:13 am Reply

        Hi Gary, how are you at this point. I’ve been following your story. We share a lot of similarities. One this is a testable reactivation of hhv6. I do believe FQs reactivated doormat pathogens by way of weakened immune system. I also test positive for Qfever and Lyme (by iGenix). There are so many connections between chronic illness and the herpes family I wonder if it isn’t the link to why the ADR happens? But that happened with the antivirals? Did they address the hhv6? Overall symptoms? I just did FMT at Taymount and I think it’s helping. I’m convinced though that many harboured things are now reactivated and causing issues. Thanks, hope your better.

        • L Simon July 4, 2018 at 1:43 pm

          Nethaniel, I agree. I think somehow these viruses are unleashed. I wish I know how to put it all back. As we navigate through, I will post anything that has helped.

  38. Sofia February 14, 2018 at 1:23 pm Reply

    Thanks Gary. I too believe I was poisoned by Levaquin in August 2017 after a June 2017 pneumonia diagnosis. The only side affect the doc told me about was possible tendon ruptures. My symptoms didn’t show up until 2 months later and were: SEVERE panic/anxiety attacks, thyroiditis/auto-immune response, GI/silent reflux, insomnia, extreme neck tightness (like if the muscles were spasing) constantly, among other things. Would love to speak more about all of this. My email is sofitfia@gmail.com

    • Gary June 8, 2018 at 6:50 pm Reply

      Sofia,

      I contacted you via email.

      Thanks!

  39. L Simon July 3, 2018 at 5:39 pm Reply

    Thanks Gary for the Dr. name. is it possible for you to email me at lsimon001@yahoo.com
    Also, is there a c60 product you recommend?

    • Sallee M July 4, 2018 at 3:57 pm Reply

      Love read your story again. .i had my FM.MD upload my 23 &me results which helped her treat me. Her results were too technical for me to fully understand. I recall you had a favorite web site to upload 23&Me results. Can you provide me with the name (s) again? Thanks!

    • Gary July 13, 2018 at 11:50 am Reply

      L Simon

      I don’t have any recommendations, really (for C60).

      • Krista August 6, 2018 at 3:39 pm Reply

        Hi Gary can you possibly shoot me a call. I’m floxed . 310.432.3381 not sure where to start . But hey I figured you got your smarts back as you were able to write this article with resources cited 🙂

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