Erin’s Story of Chronic Illness, Fluoroquinolone Toxicity, and Healing

Erin – “Here’s a picture of me and my mom in Nashville in 2019. My mom was one of my biggest advocates and supporters during my sickest times and continues to love learning about the body with me!”

Hi, my name is Erin and I’m almost in my 7th year post-Cipro. Like many of you, my experience has been long, confusing, hard to pull apart, and lacking certainty. I’ll share my story anyway in case it gives you hope, perseverance, permission to grieve, or a clue that may be helpful to you! In short, I’m much more functional than I was at my worst from 2014-2017 but I’m also not exactly where I want to be quite yet! I’m practicing staying fiercely motivated to keep pursuing my health while also being kinder to my body and accepting my current limitations.

A Note about my Health History: 
Unlike some people’s experiences, I wasn’t the epitome of health before taking Cipro. In fact, I had been accumulating symptoms since high school and to this day I’m still trying to understand the big picture. High school kicked off with acne, irritable bowel syndrome, depression/anxiety, and increasing fatigue but I still managed to have a pretty standard American high school experience. In Undergrad, I started to accumulate more neurological symptoms like visual disturbances, tinnitus, extreme insomnia, seizure-like episodes, and more but again I had a pretty standard experience otherwise. I’m not sure if I was ever on a Fluoroquinolone during that time. By my early 20s, I had more symptoms that seemed like autonomic dysfunction — officially diagnosed with inappropriate sinus tachycardia in 2009/2010, symptoms of POTS (though not officially diagnosed), and my blood pressure was growing increasingly low. I also had frequent episodes of microscopic blood, protein, and white blood cells in my urine … cue the setting for my experiences with Cipro. But I just wanted to include this paragraph so that you know there seems to be a pre-existing medical condition that I’m still trying to figure out. In fact, this week, I’m seeing a neurosurgeon to be evaluated for a possible chiari or cervical spine issue. This is important because Fluoroquinolones can increase intracranial pressure and if I have a pre-existing structural issue that could already cause increased intracranial pressure, it might explain why my neurological symptoms exploded in the wake of Cipro.
Cipro Timeline from 2013 – present  

Now here’s the part that way too many of you relate to and I’m so sorry you’ve had this experience and hope you make progress in your own unique ways! Here’s what happened after taking Cipro for an uncomplicated UTI in August 2013 (it was probably the 3rd or 4th time I took it in my 20s). Hard to say exactly what was the Cipro versus what was a pre-existing condition getting exacerbated by the Cipro:

  • By October 2013 – having anxiety, depression, looping thoughts, horrible anxiety, and really bad cystic acne
  • By May 2014 – twitching, tingling, feeling like my legs were going to collapse, cognitive dysfunction (difficulty reading, writing, and having conversations), feeling like my brain was swollen. Diagnosed as “silent migraines” by a neurologist. My adrenal hormones were so high that I had an ultrasound checking for an adrenal tumor; they didn’t find anything but my liver was swollen for some reason; I had to stop working out of the house and began to find jobs working at home.
  • By summer 2014, I had an MRI that showed I had a few white matter brain lesions. Looking back in my health history, we realized I had brain lesions in 2009 too but my doctor at the time never told me. No changes in the brain lesions though (good news!). I got tested for and eventually diagnosed with CFS/ME (possibly complicated by untreated Lyme Disease, low CD57 count, high viral load including EBV) which made a lot of sense for my health history but didn’t make sense as to why I suddenly got significantly worse in 2013 despite the fact that I was taking better care of myself than ever before.
  • By 2015, I was having myoclonic seizures almost every night and twitching, tingling, shaking. Night time became very scary and I often couldn’t sleep from midnight to 5am or 6am. I would get 4 or 5 hours of sleep per night if at all. At the end of 2015, I worked with a Lyme/CFS/ME doctor and she gave me 6 IV lipid treatments (with IV glutathione, B12 shots, and IV homeopathic drainage), which REALLY helped with my cognitive dysfunction and allowed me to read, write, and have conversations again at a better pace (though still not where I was before). I was also on other herbs, vitamins, minerals, and things like Phosphatidylcholine. I stopped being able to drive on highways and started to only drive on residential roads due to the neurological symptoms.
  • By 2016, the Lyme/CFS/ME doctor had suggested a modified ketogenic diet but I don’t think my body responded well due to it being both high histamine and high in oxalates which I didn’t realize until later. She also put me on some methylation supplements but my potassium crashed a few times and I ended up in Urgent Care getting IVs (google potassium and methylation, seems to be a common experience). I decided that something was missing from this story and I finally learned about Fluoroquinolone Toxicity Syndrome and realized how many people have been devastated by these same exact symptoms. I realized that the FQT caused some kind of major histamine intolerance (mast cell activation syndrome?) and imbalanced my electrolytes. I started changing my diet to include more potassium and reduced my histamine intake. My acne cleared for the first time since I was 14. My “inappropriate sinus tachycardia” went away when I started paying extra attention to potassium and electrolytes (I think it’s actually POTS and responds well to fluids and electrolytes). I feel best when my potassium is at about 4.2 and higher on blood work. When it goes below 4.2, my heart rate starts going up. My blood pressure also improved and went from like 80/60 to 90/60 and above. My fingertips stopped looking like dried up raisins and would actually be plump more often than not! (I still get wrinkled fingertips during bad symptom weeks as if my body is dehydrated or my electrolytes are low)
  • 2016 came to an end and I was still having crazy episodes where it felt like all of my minerals were bottoming out. Finally realized (thanks to this group!!!) that I was having an oxalate problem, too (Shout out to the Trying Low Oxalate group also) and needed extra magnesium. I’m still not entirely sure why: did the Cipro reduce my histamine degrading and oxalate degrading bacteria? Did it cause leaky gut and am I absorbing more histamine and oxalates? Did it mess up my gall bladder/pancreas and so I’m not excreting as much due to insufficient bile production? Did it mess up other vitamin and minerals that are necessary for the degradation of these compounds? Did the oxalate issue aggravate my mast cells and cause a histamine intolerance? Anyway, after some very very scary episodes, I started working with a Chiropractor who uses Standard Process supplements and helped me get my digestive system under control.
  • By 2017, I started making strides in reducing oxalates (SLOWLY!!) and I added the product Restore to help with gut health (Restore is now called Ion Biome in 2020). Once I reduced oxalates, I didn’t have as many histamine reactions anymore and could add more foods back in. Watching my oxalates, paying attention to electrolytes, balancing my minerals (calcium, magnesium, potassium), and working on digestion has been enough to stabilize me this year. Again, I still have some rough weeks but overall 2017 is way less terrifying than 2016 and 2015. I am FINALLY sweating again!!! (For all of you who lost your sweat reflex, I know you can appreciate my joy over sweating 😉) I did realize that anything that increases my sulfur/glutathione pathways helps with the sweat reflex — including glutathione directly, mag oil with MSM, epsom salt baths, and sulfurophane supplements (the compound in cruciferous vegetables). I think my sulfation pathways were getting backed up from the oxalate issue — just a theory.
  • By 2018 & 2019, I spent most of my time following recommendations in the Trying Low Oxalate group and rebuilding my life physically and emotionally after that experience. I got back to the point where I could almost work 30-50 hours a week from home plus maintain a modest social life though not as much as before 2013 yet. Don’t underestimate the emotional rebuilding that needs to happen … it took a while for my personal identity to feel cohesive again and I felt very fragmented for most of 2018. It got much better in 2019 and I started to feel like “myself” again.
  • In 2020, I’ll be resuming trying to understand some of my original symptoms that have been following me since Undergrad in the hopes that I can finally get my energy back enough to work full-time and maintain a somewhat active social life. For now, I work part-time mostly from home, have a modest social life, and still avoid driving on highways but I definitely can really appreciate my progress and my life where it is at right now.

Some tests that I ordered for myself and found helpful:

  • I frequently order the Comprehensive Wellness Panel from Direct Labs to check on my red blood cells, white blood cells, liver, kidney, glucose function, lipids, etc. I like to make sure that the supplements I use, both under the guidance of a practitioner and sometimes by myself, are not harming anything.
  • I ordered the Ubiome and Viome test kit and confirmed lack of oxalobacter formigenes
  • I LOVE LOVE LOVE Organic Acids Tests, especially since they give you a good overall view of your ability to produce ATP, so I feel like I’m checking in on my little mitochondria!!! I ordered one last year from True Health Labs and just ordered the Great Plains version this year which also helps check for oxalate problems.
  • I ordered a Comprehensive Stool analysis once to check for G.I. inflammation (from true health labs) and will probably order one again in another 6 months to make sure the work I am doing on my digestive system with the Chiropracter is having appreciable effects.

**Certain states cannot order their own blood work (I know NJ and NY are included), but you can cross the state line into a nearby state to fulfill the order. Both websites (direct labs and true health labs) talk about the stipulations in their FAQ sections.Some additional things that helped while I was sick: making friends online, keeping a journal, walking every day to make sure I got fresh air and sun, working part-time for kind employers, infrared biomat, working with a meditation instructor, taking a few online classes oriented towards healing (e.g., a self-compassion class), and watching people’s dogs and houses for them (made me feel useful and loved).

Keep listening to your bodies, find compassionate practitioners who understand, try to solve the puzzles as best as you can (although I know it’s hard especially if you have cognitive dysfunction), and love the heck out of yourself through this because you need and deserve it!

*****

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

*****

4 thoughts on “Erin’s Story of Chronic Illness, Fluoroquinolone Toxicity, and Healing

  1. Amy January 9, 2020 at 6:03 pm Reply

    Hello, Erin. Thank you for your story. My daughter has Chiari (I have levaquin poisoning) Unless your life is severely impacted or you have a syrinx they generally don’t operate (even then decompression isn’t necessarily a cure). They usually just treat the symptoms. Because Chiari is rare, there are very few skilled surgeons should you need surgery you should do your research and select one of the true experts like Greenfield in NYC, Henderson in Maryland, and a few others. Conquer pediatric chiari is a very active Facebook group that you may find helpful. Best of luck to you!

    • erinm85 January 10, 2020 at 3:19 pm Reply

      Thanks so much Amy! Best of luck to you and your daughter. If my imaging tests come back and indicate a chiari, I will look up those surgeons. From my previous imagines, they can see a mild herniation of the cerebellular tonsils but they don’t think it’s enough to be causing all of my symptoms. I’ll be getting a cine MRI to check CSF flow and might also check out some cervical spine issues that might be causing my remaining symptoms.

  2. A.Coleman January 28, 2020 at 1:18 pm Reply

    Erin,

    Thanks for sharing your story. So glad you are getting so much better; but so sad that you have been on this journey so long. I am in my fifth year post floxing and starting to have some “normal” days sprinkled in.

    I am very curious about the symptoms you have that you feel may be linked to increased intracranial pressure. Due you think it is increased intracranial pressure or is there the possibility it is a cerebral spinal fluid leak and low intracranial pressure?

    About 15 months ago I was starting to feel like my recovery was near as my digestive problems healed and then I started getting headaches, suffered from head pressure (like a vice at the hat line) and brain fog. This slowly got worse until in June and July of this year I hated every minute I was awake. Prior to the headaches I should mention I had severe neck pain and that led to weird popping and cracking in my neck. The pain has now subsided and the popping and cracking only occurs a few times a day now. I am not sure if my problems are nutrionally based (I had very bad digestive issues following my floxing – which are 99% healed now) or due to other trauma.

    My symptoms have slowly gotten better and as noted above I have some “normal” days now; but then will relapse and experience more headaches / brain fog / head pressure. No clear pattern and never as bad as during the summer; but still really impacting my life. Other than some mild neuropathy and insomnia (that I have learned to deal with) I am nearly back to normal.

    What are your exact symptoms that lead you to suspect increased cranial pressure? Have you had a CT scan or MRI yet? If so did they need to add dye or were they just “normal”? Did they do a spinal tap?

    I have a follow up neurologist appointment in three weeks and I would love to know more. He is a believer that fluroquinolones caused my damage; just doesn’t know how to help me.

    • erinm85 January 28, 2020 at 1:35 pm Reply

      Hi A. Coleman,

      I’m sorry to hear about your experience as well!! Shortly after floxing, I lost the ability to read, write, or have conversations without feeling like my brain was swollen and I was going to throw up. I couldn’t tolerate stimulation … had to lay down a lot in a dark room away from people to recover from even small interactions. My pupils would pulsate (hippus) and sometimes be inappropriately dilated in a bright room. It was clear something neurological was happening but I didn’t know what. The first few years my neck also hurt really bad until I added in sufficient amounts of Magnesium. I had an MRI done that year and saw a neurologist to rule out M.S. due to nonspecific white matter lesions on the MRI. He did not say anything about increased intracranial pressure nor did I have a spinal tap. He just said it sounded like I was having constant “silent migraines.” Given how much pressure I felt in my head, I am making a hindsight presumption that perhaps it was increased intracranial pressure.

      When looking at my brain and cervical MRIs there are some clear observations: I do have a mild herniation of my cerebellum (mild chiari, but they don’t think it’s enough to cause symptoms). My neck has lost all lordosis (“military neck”) and I have some degenerative disc changes, mild spinal stenosis, and bulging discs. I have no idea whatsoever why I had all of that damage to my neck as I’ve never been in a car accident and still don’t know what caused that at age 29.

      I’m due to get updated brain MRIs this year but I’m hesitating due to some life circumstances and insurance changes that might make that more expensive. I suspect I might have some structural issues like possibly craniocervical instability and the mild chiari that maybe made my brain more susceptible to pressure changes in the wake of the Cipro. My neurological symptoms were fierce, I felt like my IQ dropped by like 20-30 points. I’ll never know if it was increased IIH because I can’t go back in time now and figure it all out.

      ^^ I think a non-contrast brain MRI was performed at the time but I did have an MRI of my abdomen with contrast in 2016 and was okay afterwards.

      If I get an update on the possible structural issues this year I’ll come back here and update. I’ve noticed now that in addition to some foods and lifestyle issues causing bad days, that structural trauma of any kind can also cause bad days for me … for example, I was jumping on a mini rebounder for exercise and realized that was really bad for me. I also tried to start jogging and that also caused a bit of a relapse. There’s a book on facebook that focuses on possible structural causes of CFS/ME … a few floxed people made their way there “me/cfs+ (cci chiari spinal stenosis csf leaks vascular stenosis)”. They might have more information to help you out. Good luck!!

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