It’s been a few weeks since I shared that I had been diagnosed with peripheral neuropathy, with fluoroquinolone toxicity being the most likely cause. A lot has happened since then, so I have quite a bit of info to share today.
Since that post, I’ve seen GI again, a sleep specialist, a new dentist, my GP and had a slew of new lab work and tests done. There is still a lot to come!
What GI Said
A couple weeks ago, I had an MRI of my pelvis and abdomen. Even though the test was primarily ordered for my small intestines and pancreas, I’m so skinny they can see everything in the scan. Bonus.
The results of the MRI were unremarkable. I have some small cysts in my liver and my spleen, and they aren’t the least bit concerned about them.
The unusual thing is that those cysts weren’t visualized on the MRI I had when I had pancreatitis in March 2017. So, they’re new since then. I’ve read many reports of people developing cysts after fluoroquinolone toxicity, so that may be why they’re there. No matter what caused them, GI says they aren’t an issue and lots of people have cysts.
Given that they’ve pretty much run out of tests and labs to run and considering my symptoms, they diagnosed me with Irritable Bowel Syndrome with Diarrhea (IBS-D). He suggested I try Rifaximin for the IBS. I decided to forgo that since it’s something that “might” help and the FDA is currently considering adding a stronger warning to it for Rhadomyosis – I don’t need more muscle loss.
I’ve read a lot about the connection between nervous system dysfunction and IBS, so I think my GI issues are most likely nerve issues at this point. This article does a pretty good job of explaining how the nervous system controls GI motility. I also find lots of digestive complaints in fluoroquinolone toxicity support groups.
They also wrote down a diagnosis of malnutrition of unspecified type. They have no way to explain why I can’t gain weight. They did say, however, that my eating a very high calorie diet seems to be working because I don’t have any nutrient deficiencies anyone can find. A few months ago when I was down to 99 pounds, I probably would have died if Brian wasn’t constantly feeding me so much food.
We tried to talk to the GI doctors about fluoroquinolone toxicity. While the attending said that may be a possibility, he was in no way going to tie himself to that. He told us in no uncertain terms that they only like to diagnose things they can treat. We both thought that was odd (as did my neurologist when we shared that tidbit of information with her).
They want to see me back in two months, but I’m not sure what they can do for me going forward. Especially since it looks like my GI issues are nerve related. I am grateful they were able to rule out all of the big scary GI disease and cancer possibilities. But I’m not happy that this again points back to fluoroquinolone toxicity as the leading primary diagnosis.
What Neurology Testing Has Shown So Far
I have done several of the tests the neurologist ordered so far. She ran a full panel of labs (anti-SSA, anti-SSB, ACE, Vitamin B1, Vitamin B6, Cryptoglobulin, Serum IFE, Methylmalonic Acid (MMA) and VDRL (Syphilis)) to rule out every other known cause of peripheral neuropathy and they all came back normal. That pretty much confirms fluoroquinolone toxicity as the cause of my peripheral neuropathy.
She also sent me for a swallow evaluation. The speech therapist I saw diagnosed me with Dysphagia Level 3. Level 1 is the worst and Level 4 is normal. She recommended I follow a modified diet and not eat dry or hard foods.
To try and determine the cause of my Dyspahgia, they are going to do a Barium Swallow Study. That will help them see if it’s a nerve or muscle issue and to be sure that my thyroid nodules aren’t impeding my ability to swallow. Dysphagia is relatively common in fluoroquinolone toxicity – it’s actually listed as a side effect of Levaquin in the package insert.
After we get the results of the Barium Swallow Study, they want me to consider therapy. She gave me some exercises to do at home for now, but she believes I’d benefit from additional therapy. Since that therapist is off the mountain, it’s another burden to our already packed schedule, so I’m putting it off for now until we have the full picture.
I still have to get EMG/NCV testing done to see if I have further nerve damage. Those tests will be done in April. I have to get my legs done one day and my arms done a second day because each test takes 2 hours and going longer than that is too hard on the patient. At that point, we should have a pretty good picture of the nerve damage that I’ve suffered.
What the Sleep Specialist Said
My Neurologist has a secondary specialty of Sleep, so I saw her separately for that issue. She did a verbal and physical exam and diagnosed me with insomnia. She doesn’t think I have sleep apnea, so a sleep study isn’t warranted.
I love that when delivering her assessment, she immediately said, “We don’t treat insomnia with sleeping pills.” She recommended a book called Say Good Night to Insomnia. It’s included with ScribD and Audible memberships if you’re curious.
I’ll be digging into that soon. She says it takes a few weeks to start working, so I’m hoping that it will work for me. And I’m so grateful that she’s not a pill pusher (<– her words).
She also diagnosed me with Restless Leg Syndrome. That wasn’t a huge surprise to me since I’m constantly kicking my legs around to get the strange sensations to stop. Brian didn’t know it was a real condition, but the neurologist confirmed it’s very real and around 10% of the population has it.
She also could tell that I grind my teeth. I’ve done that for as long as I can remember, but it has gotten much more intense in the last few months. I think I’m going to need to get a better mouth guard for when I sleep because I think I’m going to break my retainers in half soon.
One final diagnosis she gave me was Anxiety. Again, not a surprise. I feel like I want to crawl out of my skin most of the time and I startle and get overwhelmed incredibly easily. I have never felt as anxious in my life as I do around the clock right now.
Anxiety as a Fluoroquinolone Toxicity Symptom
I don’t know why it’s so hard for me to talk about mental health, but it is. I am a very mentally strong person who has triumphed through a lot of adversity in my life.
There is so much stigma around mental illness that I guess I fear judgement, which is something I naturally try to avoid. However, my Anxiety has been through the roof the last several months.
At first, I really believed it was just because I was anxious over being so ill. Anxious about whether I’ll still be able to support my family. Anxious about whether I’ll ever walk normally again. Anxious about whether I’m going to live or die.
Anyone in my situation would be anxious. However, with some careful consideration and quietly sitting with my thoughts, I was able to trace the extreme Anxiety back to the day I was started on Levaquin – and it’s been there ever since. Let me explain.
I was originally scheduled to have my gallbladder removed on March 31, 2017. I felt the normal amount of nervousness before a procedure like that, but I was more just wanting to get it over with than anything else.
The doctor came in and told me that they were going to have to bump my surgery to April 1 because a heart patient came in and they needed my slot. Totally understandable since I was stable.
That day is the day they put me on Levaquin (levofloxacin). I remember that night after they kicked Brian out (I was only allowed visitors until like 8 pm – it was crazy), I was up most of the night kind of freaking out. I had trouble sleeping, was super worried and paranoid, and felt an impending sense of doom. I did not feel like that the night before awaiting my surgery.
When the nurse came to check on me that morning and when Brian got to the hospital, I was in full panic attack mode. I was crying and freaking out and they had to give me some anti-anxiety medicine to get me into the OR. It was a stark contrast to how I was the day before.
I didn’t think much of it at the time. I was about to undergo surgery and then they had me on strong meds after that. But looking back, that was not a normal reaction when compared to the day before. The only difference was the Levaquin.
And since mental health changes were one of the Black Box Warnings that were added by the FDA in 2018, it explains the sudden onset of anxiety.
My neurologist/sleep specialist says that anxiety is treatable, so she wants me to see a psychiatrist or psychologist. She gave me a list of names, so I guess I need to call and make an appointment since I don’t have a good way to cope with it anymore. And I know that therapists are considered a helpful part of the grieving process for people with chronic illness (I am absolutely grieving my former self right now).
After the surgery, I was using hiking and walking for anxiety relief. Any time it would build up, I’d go walk it out several miles. I walked and hiked so much!
I was losing weight the entire time, but didn’t realize that my urge to walk was compelled by anxiety until I got so skinny and weak from the toxic process that was going on inside of my body that couldn’t physically do it anymore. Now I have no outlet for the anxiety because I’m too fragile to hike.
So I strongly believe that I did not have a delayed reaction to the levofloxacin. It happened on day one, and has been progressing ever since then. I just didn’t realize what was going on until later, and at this point it has ravaged my body.
A New Dentist
If you missed the fiasco about the wisdom tooth infection that was missed for over a year, be sure to read that. I’ve had one issue after another at the local dentist, so I finally said no more.
I saw a new dentist this week and he said I don’t have any cavities. I was so thrilled with that news. He looked at my wisdom tooth extraction site because it still bothers me (it was extracted 5 months ago) and said that it’s healing, but it’s probably going to take a few years to heal fully. Not awesome news.
The local dentist also put in a shoddy filling in the molar that was next to that wisdom tooth. It shreds dental floss, causes pain in my gums and I can’t even chew on that side of my mouth without pain.
The new dentist is going to remove it, but he needed clearance from my general practitioner that I’m healthy enough to have it done. He signed the paperwork this week, so hopefully it will be fixed next month.
I was assuming that all of the jaw pain I’m having was from the dental issues, but it doesn’t seem so. So this is again likely all part of the fluoroquinolone toxicity.
Muscles, tendons and ligaments can be affected, which can cause pain in the jaw. It’s also common for people who have peripheral neuropathy from fluoroquinolone toxicity to have pain and weird sensations in their face, mouth, gums, teeth and head according to data collected by My Quin Story.
The Full List of Diagnoses to Date
The full list of diagnoses I’ve gotten so far include: Peripheral Neuropathy, Dysphagia Level 3, Restless Leg Syndrome, Insomnia, Anxiety and Irritable Bowel Syndrome with Diarrhea. We’ll see what else may get added from the upcoming tests and appointments I have.
What’s Next
I’ll be scheduling a pulmonary function test soon so we can confirm why I’m having trouble breathing. My lungs sound clear to the doctor, so that’s good, but it’s not good that I have so much trouble breathing. I also have to schedule a hearing test. It looks like I’ll be able to have both of those tests locally. I’m grateful for every appointment that doesn’t have to be off the hill!
As I mentioned, I have the EMG/NCV tests the neurologist ordered in April. I see the Rheumatologist in April so we can explore connective tissue disorders and any other rheumatic condition I may have acquired.
I’ll also be scheduling the Barium swallow study soon and getting my tooth fixed soon as well. After these appointments, I think we should have a pretty clear picture of the extent of the damage.
Once we have all of that info, we’ll be able to put together a plan to try and get me healthy again. I am taking limited supplements now (CoQ10, magnesium, probiotics, vitamin C, collagen, electrolytes, Lion’s Mane mushroom extract, turmeric and occasional vitamin D and K).
You can get too much of a good thing, so because I eat so much food and I don’t have any identified nutrient deficiencies, I have to be careful not to take too many extra vitamins. I try to listen to my body and give it what it asks for.
Brian and I are both currently studying what supplements have seemed to help floxies recover. There are a few that everyone seems to mention, and there are others we think will be helpful. I just got Reishi and Cordyceps to add to the Lion’s Mane mushroom. I’ll probably just add one thing at a time and keep the things that seem to help me feel better and ditch the ones that don’t.
So far, what has brought me the most relief is acupuncture. I’ve had two treatments so far and both times, I was able to walk pretty normally and had more energy and focus for 3-4 days afterwards. I’m only able to go once a month for now, so I’m grateful for that bit of relief each month. If I stop going to the chiropractor monthly, I can see the acupuncturist twice a month, so that’s something I’m considering.
My Outlook
There are days where I feel like I will absolutely beat this. Like I was given this challenge because I’m strong enough to overcome it.
Then there are days where I feel completely hopeless, like my family would be better off without me because I’m never going to get better. As such a strong, independent woman, it’s incredibly hard to have absolutely no control over my life.
It’s getting harder and harder to stay positive. I’m trying my best, but this is a lot for anyone to deal with.
It’s affecting my children. It’s affecting my marriage. It’s affecting my business. It’s affecting everything.
I don’t know if I’m ever going to get better than I am right now. And that terrifies me.
Will I be enough for my husband if this is all I ever am? Probably not. Will my kids ever be able to respect me if this is all I ever am? Doubtful.
And can I live with being a burden on them? Because let’s be honest. That’s what I am. They can’t go anywhere or do anything without worrying about what to do with me.
I have to be hopeful that once we have all of the diagnoses and the uncertainty goes away, I will be able to better cope with my new normal. Because right now, I’m having a hard time with it.
How a Dad Communicates with His Daughters Affects Them Forever