The Beginning of a Diagnosis

After seeing the General Practitioner (GP) over the weekend and the Neurologist on Tuesday, Brian and I hinted on Instagram that we had a partial answer to that question. That we had the beginning of a diagnosis (here and here).

We were both in such a state of shock after the neurology appointment that we needed a couple of days to process before sharing. We’re still processing, but we’re ready to start sharing.

Since then, I received the medical records from my hospital stay in March/April 2017 from when I had acute gallstone pancreatitis and my gallbladder had to be removed. I discovered that I was given two IV bags of Levofloxacin (a fluoroquinolone antibiotic) during my hospital stay. So we brought this information to my doctors to see what they had to say.

This post may get long, complicated and heavy, so you may want to grab a drink and sit down. Here we go.

Our Appointment with the GP

Last Saturday, February 2, 2019, we had an appointment with our GP to get the results of some labs and my neck x-ray. He’s been great. He really takes his time with us and has been an amazing advocate for us. He knows he doesn’t have all the answers and is willing to do what it takes by sending me to whatever specialist I need and ordering whatever tests he can.

My anti-AChR test to check for Myasthenia Gravis was negative. The Rheumatoid Factor (RF) and anti-CC tests were also negative. The neck x-ray showed minor arthritic changes, but nothing unusual for my age.

As we were talking, he was shaking his head saying, “What else could it be?” So we decided to open the conversation with him about Fluoroquinolone Toxicity.

When we first broached the conversation, his immediate reaction was that they see the tendon issues immediately. Then we asked him if he’d read all of the other Black Box warnings that have been added to fluoroquinolone antibiotics over the last several years or that these reactions could be delayed by several months.

While our GP wasn’t up to speed on the Black Box warnings, he was open minded. He got online and looked them up and his jaw dropped. He had no idea, as I’m sure most doctors don’t, of the severe adverse reactions people are experiencing after taking fluoroquinolones like Levofloxacin.

After talking a lot more, him reading more and a physical examination, he agreed that Fluoroquinolone Toxicity could be a very real possibility. His eyes lit up and he seemed a bit excited, and said it was something he was definitely leaning towards. He had already referred me to a neurologist, who I’d be seeing in just 3 days, so we were already moving in the right direction.

While it was wonderful to be heard and not told that we were presenting some crazy conspiracy theory, it truly wasn’t what we wanted to hear. The effects from Fluoroquinolone Toxicity are often permanent and progressive, so it’s one of the worst diagnoses I can get.

We decided we’d talk more to the Neurologist about it before getting too worked up, but I’ll talk a little bit more about Fluoroquinolone Toxicity in a bit. I haven’t linked to anything about it yet because I want you to read the whole story before going doing the fluoroquinolone rabbit hole.

So first, let’s talk about the diagnosis we got at the Neurologist.

Neurologist Appointment + Secondary Diagnosis

We got into the Neurologist super fast. Insurance approved the referral quickly and the day I called, they just had a cancellation. I’m so grateful we got in this past Tuesday to see the Neurologist for the first time. I fully expected to only get a short amount of time with her so I had all of my symptoms typed out and medical records ready (my medical records from the last 2 years fill an entire box at this point).

It was great I was prepared, but we weren’t rushed at all. She looked through everything, made tons of copies and asked if we could get her paper copies of the rest of my records that I only have digitally right now.

She spent a full hour and a half with us going over my medical history and examining me. She wanted to make sure she had every bit of information she could get from us. We spoke about so much.

She was super sharp and knowledgeable, and probably the first Specialist I’ve seen who I felt like she really understood that what I’m going through is real and she’s going to do everything she can to help me get to the bottom of it.

If you’ve been following my story, then you know that my list of symptoms and tests is crazy long. I have widespread muscle pain and weakness throughout my body. I have a painful tingling feeling that sometimes turns to burning in my hands, feet, lower arms and lower legs. I also have a lot of numbness in my feet and sometimes in my hands. My face burns most of the time. I get muscle twitches and crazy spasms throughout my body. The weakness is worst in my neck and my breathing muscles, but it also affects pretty much every muscle group I have to the point where I have trouble opening jars.

And recently, I noticed I have patches on my lower legs where hair no longer grows. I barely have any hair on my thighs anymore. And I don’t get goosebumps where the hair doesn’t grow.

Very quickly into the examination, the Neurologist was able to tell me that I have a nerve issue, not a muscle issue. And that my sensory nerves are damaged, not my motor nerves, at least not yet. Of course, further testing may reveal more nerve damage that isn’t apparent by a physical examination.

My Neurologist was also able to diagnose me with Small Fiber Peripheral Neuropathy (SFPN) in my hands, lower arms, feet and lower legs, based upon an exam, my symptoms and my medical history. More than likely based on symptoms, it’s likely already in my face. She believes the SFPN I have is progressive and ultimately it can and probably will spread to my motor nerves and beyond my lower limbs if it hasn’t already.

What that means is, I’m going to be in pain for the rest of my life and it’s only going to get worse. There is no known way to stop it.

And, like I mentioned, she has not ruled out other types of Neuropathy and nerve damage as I have strange sensations like burning and involuntary muscle twitches and spasms in other parts of my body too. So it’s likely that I may have further nerve damage that hasn’t been diagnosed yet. My Neurologist is going to be looking at the myelination of my nerves to confirm nerve damage through testing.

What Caused Small Fiber Peripheral Neuropathy?

After she’d talked to us about her diagnosis, we started talking about the causes of SFPN.

The Neurologist explained the two most common causes of SFPN are diabetes and alcohol. I’m not diabetic and I completely stopped drinking alcohol a year and a half ago (and I didn’t drink much before then), so those causes were immediately ruled out. Then she said another way is being exposed to a toxin.

She saw I’d been given two bags of Levofloxacin in the hospital. Fluoroquinolone Toxicity is apparently a lot more common than we could have ever expected. She immediately started digging into that and found the FDA’s communication about fluoroquinolones causing Peripheral Neuropathy – and that it’s usually permanent.

Before concluding immediately that was the cause, she also looked into the symptoms of arsenic toxicity since I had one arsenic test that was abnormal (the 3 subsequent tests were normal). She said arsenic toxicity didn’t line up, so she ruled that out.

She went through all of the other possible causes of SFPN and concluded that Levofloxacin exposure is the most likely cause of my peripheral neuropathy. She said she didn’t “want to write down Fluoroquinolone Toxicity Syndrome yet” until we do some more testing to rule everything else out.

More Testing

I have to have an Electromyography/nerve conduction velocity study (EMG/NCV). I had one in 2014 (it was normal) and it was the most torturous procedure I’ve had done so I’m not looking forward to it. However, it’s necessary so I will put on my big girl pants and do it.

I also have to do a swallow study (since stuff gets stuck in my throat) and a 2-hour glucose tolerance test (many people with small fiber neuropathy have impaired glucose metabolism). I have to have more blood drawn for antibody tests for Sjogren’s Syndrome (anti-SSA, anti-SSB), ACE (to check for Sarcoidosis), Vitamin B1, Vitamin B6, Cryptoglobulin, Serum IFE, Methylmalonic Acid (MMA) and VDRL. I’ve never heard of most of these tests. It’s also highly probable I will have skin biopsies as well to see the extent of damage to the Small Fiber Nerves.

She is also referring me to a Rheumatologist to rule out any rheumatological conditions like connective tissue disorders and to “help confirm Fluoroquinolone Toxicity Syndrome.”

In addition to being a Neurologist, she’s also a Sleep Specialist, so I’m going to see her later this month for issues I’m having with sleeping through the night. It’s hard for me to stay asleep for more than a couple hours at a time.

I also have to go back to my GP and ask for a Pulmonary function test and hearing test because my insurance wants those test to come from him and not the specialists. Insert facepalm emoji LOL.

She suspects my mitochondria are damaged as well at the DNA level due to the way my symptoms are presenting. There is also going to be testing done to see if mitochondrial damage has been done and a muscle biopsy could very well be in my future too.

This part is very scary. Basically, fluoroquinolone toxicity can damage your Mitochondrial DNA (mtDNA) and cause what’s called Drug-Induced Mitochondrial Chemical Toxicity. The simple way to put it is, it’s a Drug-Induced Mitochondrial Disease which “mimics Mitochondrial Depletion Syndrome” (a terminal genetic disorder for which there’s no cure).

We are so grateful our Neurologist is being incredibly thorough, she’s extremely confident and we appreciate it so much. She even gave me her business card and told me I can call her if I have questions. She is the first specialist to do that for me.

She said she fully expects all of these tests for the rare stuff to come back normal and the other tests to come back to help confirm her diagnosis. She said they’re all super rare conditions she’s testing for, but that we have to do them to rule out everything. Once that is done, she will be able to confirm (or not) the cause of my condition is Levofloxacin exposure. Hopefully we should have that answer in the next month or so.

That said, she’s very confident the root cause of my Small Fiber Peripheral Neuropathy is Fluoroquinolone Toxicity Syndrome (you’ll sometimes see it referred to as Fluoroquinolone Associated Disability).

GI Specialist Appointment Next Week

On Monday February 11, 2019, I get an MRI of my pancreas and small intestines to make sure that there are no issues that weren’t seen on the ultrasound or CT. Then we see the GI Specialist on Wednesday.

If the MRI looks good, then more than likely my GI issues are a motility issue like IBS caused by Peripheral Neuropathy. Peripheral Neuropathy can affect the Enteric Nervous System, which controls GI motility.

We discussed this with our Neurologist and she fully agrees it’s very possible that the GI issues I’m having is IBS caused by Peripheral Neuropathy, which was caused by fluoroquinolones.

So we’re pulling together all of this information to present to the GI Specialist as well.

What’s Fluoroquinolone Toxicity?

If you haven’t heard of Fluoroquinolone Toxicity, you’re not alone. Brian and I hadn’t heard of it, and none of the doctors I’ve seen have heard just how bad it is. I learned about it in a Chronic Fatigue Syndrome support group.

The FDA is well aware of it though. They have been putting out Drug Safety Communications about fluoroquinolone antibiotics since 2008.

Here are the FDA Drug Safety Communications about it over the last several years:

In November 2015, an FDA committee put together a presentation about Fluoroquinolone Associated Disability that is interesting. You can see the actual package insert with all of these warnings here.

One of the most comprehensive studies that’s been published so far is called Fluoroquinolone-induced serious, persistent, multisymptom, adverse effects. The primary author, Beatrice Golomb is currently doing research on fluoroquinolones at UCSD.

As you can see, this is a serious condition without a lot of hope. The reason we needed to process this news before sharing is because of the permanency and the progressiveness of Fluoroquinolone Toxicity. If you get on Google, you’ll find story after story of people becoming disabled after taking fluoroquinolones. There are support groups on Facebook with thousands of members.

So many people have been injured by Levofloxacin that they have stopped manufacturing Levaquin (the brand name for Levofloxacin). However, the generics are still readily available and over-prescribed. And it’s not the only fluoroquinolone – there’s also Ciprofloxacin (Cipro), Moxifloxacin (Avelox), Delafloxacin (Baxdela), Gemifloxacin (Factive) and Ofloxacin.

If you or anyone you know has been chronically ill without being able to get an explanation of why, look at your (or their) medical history. If a fluoroquinolone antibiotic was taken before becoming ill, talk to a doctor. It could be the answer you’ve been searching for.

Fluoroquinolone Associated Disability

As I have been digging into the latest research about ME/CFS, I’m finding some really interesting things. One of those things is how many people believe their ME/CFS was triggered by Fluoroquinolone use. I was on Levaquin, a fluoroquinolone, when I was in the hospital with pancreatitis.

Fluoroquinolones are a type of antibiotic that carries black box warnings for many dangerous side effects. The FDA has issued several warnings about the potential long-term, irreversible side effects of these antibiotics. Some of those side effects involve the tendons, muscles, joints, nerves and central nervous system.

The way fluoroquinolones work is by interfering with DNA replication in bacteria. Our mitochondria are very similar to their bacterial ancestors, so some scientists believe that fluoroquinolones directly cause damage to mitochondria the same way they damage bacteria. Mitochondria are responsible for our body’s energy production, so if they’re not working right, all sorts of things can happen within the body.

At the time, I assumed the doctors were doing their best to help me. I went from being in more pain than I ever imagined possible to being on morphine for the first time in my life. All I could do at the time was trust the doctors. I was in no shape to do anything else.

Now that I’m going through this reflection period, I decided to look up standard treatment protocols for acute pancreatitis. Guess what? Prophylactic antibiotics are not recommended for mild or severe acute pancreatitis. Unless there is evidence of infection or it’s not clearing after a prudent wait and see approach, then antibiotics should be considered.

People are having detrimental side effects after taking only one dose of fluoroquinolones by mouth. I had heavy doses of antibiotics by IV when I was in the hospital with pancreatitis. Fluoroquinolones are one of the types of antibiotics recommended for use with necrotic acute pancreatitis when infection is involved and a wait and see approach didn’t work. There’s even controversy around that though as studies show prophylactic antibiotic use doesn’t change the mortality rate.

There was no evidence of infection or necrosis on the CT results I have, so I’m very eager to see if the MRI I had the next day showed something different. I’m curious if they had a justification for putting me on antibiotics at all, let alone dangerous ones, if they did.

I know that I wasn’t exposed to fluoroquinolones in the ER here. They did immediately put me on antibiotics recommended for cholecystitis in the ER though, which I don’t understand since the CT report specifically says I didn’t have cholecystitis. They continued antibiotics when I was transferred to the hospital.

With Levaquin, we may be looking at a long-term, potentially progressive disability, which is frightening. I do remember for sure that a couple days into my hospital stay, I realized that one of the antibiotics was making me extremely sick. I’m not sure how I knew which one because I was on more than one, but I knew. The doctor changed that antibiotic, and the symptoms lightened up so I know it was making me sick.

Was it one of the fluoroquinolones? Was I being poisoned while I was in the hospital trying to heal? I hope not.

The Prognosis

Regardless of the cause, Small Fiber Peripheral Neuropathy is a part of my life from here forward. My pain has progressively gotten worse and my Neurologist believes it will continue to progressively get worse.

If it’s Fluoroquinolone Toxicity (which is suspected) and my mtDNA are damaged (which is suspected) and my mitochondria are being depleted (which is also suspected) and I have Drug-Induced Mitochondrial Disease (which is suspected)… my time here on this planet is going to be very limited.

And we still hope that it’s something else. We still hope this is something that can be fixed easily. There are more tests that need to be ran and more specialists that need to be seen.

So Much to Process!!!

I still don’t know how to feel about all of this. I’m trying to remind myself that what my intuition told me when I first got really sick was that this was going to be a really hard journey, but it would all be okay in the end.

I’m trying to feel gratitude for the fact that if this is the cause of my illness, it’s not something genetic my daughters will inherit.

I’m trying to feel grateful that I have been given the ability to help prevent this from happening to others by simply opening my mouth and writing about it.

I’m trying to be grateful for how this experience has made me slow down and feel deep gratitude for everything I have in my life.

I’m trying to feel gratitude for the fact that I worked so hard for so many years to build this blog so that it, even now with me unable to work full time, can still support our basic expenses.

I’m really trying to be grateful for what I have. But I’m struggling.

I’m struggling to accept the fact that this may be permanent.

I’m struggling with the fact that I might not be able to change what happened to me and this may truly be my new normal.

I’m struggling to accept that I may never go on a long, hard hike or get on a paddleboard again.

I’m struggling to accept that a wheelchair may be in my future if I want to leave the house for longer periods of time.

I’m struggling with the fact that I may never have the cognition or physical ability to carry out the plans I had before I got sick.

I’m struggling with the loss of myself, because I’m not who I was a year ago anymore.

I’m struggling with the fact that I may not be able to see my daughters compete in many of their snowboarding competitions because I’m not physically able to get to the locations.

I’m struggling with the very real fact that I may not be here to see them grow into adults. Or to see them become mothers themselves.

I’m struggling with the fact that my husband is having to take on such a huge caregiving role for me.

I’m struggling with the fact that he may have to continue on parenting our daughters without me if my body isn’t strong enough to make it through this.

I’m struggling to accept the fact that the future I have worked so hard for is being ripped out from under me without my permission. It’s not fair.

We’re all struggling.

There is a lot more to say on this subject, but I think this should give you a pretty good picture of what we’re going through right now. We’ll continue to update you as we learn more.

Until then, thank you for all of the prayers, healing energy and kind notes I receive. I truly am grateful for all of the support I have received so far.