Young Adult with Post-Viral PN
 

Hey folks - sorry this is going to be a long read as I really need to vent,

I'm a 22 year old male who basically had his life completely altered the last few months. Last August, I caught a stomach bug from a relative and it ran its normal course in a week. After that, it kept returning and causing a lot of gastrointestinal distress (chills, nausea, stomach pain). My GP ran a stool sample and found h. pylori. I was put on Flagyl and Clarithromycin (I'm allergic to Penicillen), which made me incredibly sick within a day of starting treatment. My symptoms were increased ten-fold from that reaction. I took a medical leave from college.

I was referred to a GI who scoped me (both upper endoscopy and colonoscopy) and found nothing (and, ironically, did biopsies and immunostaining for h pylori, which came back negative).

At this point (start of November), my chills started to become more like burning. I felt it mostly in my bicep and upper-back region. All my bloodwork was coming back normal (and boy was it extensive - ANA, ESR, heavy metals, B12, lyme, EBV (which was positive), mono (which wasn't), hep, HIV, syph).

December 2nd was the breaking point. My burning turned into full-body pain. It was extreme. I went to the ER. I was put on Neurotin with Hydrocodone for break-through pain. Eventually, my GP also put me on Cymbalta. I saw a neurologist and rheumatologist, and we did brain, full spinal MRIs and a spinal tap. The MRIs have no lesions, but I'm waiting on the spinal tap results. I'm expecting them to be normal, though.

So, my life right now is this: I have 4-5 days where symptoms are tolerable (tingling, sensitive skin) and then 1-2 days of intense pain. I use the Hydrocodone to help get me past the attack cycles (and I really do my best to ensure that I take it as conservatively as possible. I've managed to go most this month with 6 pills). The pain mostly appears in my upper-body (upper-arms, neck, back, head), but can sometimes manifest in my lower-body (legs, oddly not feet). I have no weakness or motor loss symptoms - it's purely sensation (for the time being).

Being this young and facing these problems is really difficult. I'm fortunate to have an extremely caring family and girlfriend (soon-to-be-wife). I take several supplements (Benfothiamine 150mg, ALA 600mg, Neurosol, Omega-3 fish oils, B-Complex). I am trying anything to help my nerves heal. I know that there is a possibility that they won't, but I won't stop trying. I also do acupuncture and yoga for stress relief. My eating habits the last few months have been focused entirely on organic fruits, vegetables and proteins (chicken, beans).

The days I feel mostly okay, I work as a coder at home (thank god I taught myself how to code during college). The days I don't, I do anything to distract me from the pain - from warm baths to playing video games.

I just needed to post what I've been through. I know people here have it worse off than I do and have been living with this horrid condition for much longer, but I don't have anyone around me that understands what this is like.

Thank you for reading.

Welcome ForbiddenDonut. :Wave-Hello:

Welcome to NeuroTalk:

I see a few things in your complex experience.

1) please get your B12 actual level. Lab ranges go down too far into the 200's etc and are outdated today. Your lowest normal should be 400pg/ml or higher.
Since you were treated for H. pylori..I assume you take acid blocking drugs? Those lower B12 over time significantly.

2) Flagyl is a known causer of neuropathies. Most people recover over time...but it may take a year or 2.

3) Being scoped... we have had some posters here who developed upper body pain, in the neck and back after endoscopies. This may be due to the mechanical trauma of them or because sadly, statistics show the instruments used are often contaminated from previous people. Up to 30% is the latest figure I've seen. So you could have some new unknown infection.

You could try to re-establish your GI flora with probiotics. It may help. A good food source is Kefir... and Lifeway brand has 12 different strains in it! (more than OTC capsules as a rule).
Having a serving of Kefir each day may help restore some of the beneficial bacteria killed by the H.pylori treatments. Lifeway is available in many stores now. I get ours at Kroger's.
http://www.lifeway.net/

And lastly...did you get any vaccines, before this started? If so you may have a vaccine reaction. Those are very unpredictable.

Getting going with a program to possibly help yourself here, involves as much information you can provide to show what is causing your issues now. Some may respond to supplements, but others less so.

Thank mrsD for that really thorough write-up!

My actual B12 level was 396 pg/ml.

Man, I hate antibiotics. The irony is that I avoided Levaquin as a treatment option because the blackbox warning had "permanent nerve damage" as a side-effect. Guess I was "destined" to develop PN.

Nah, the last vaccine I had was MMR before I started college 3 years ago.

I'll give those supplements/probiotics a shot.

Thanks for the answers...

Your B12 is too low for a young person especially.

I'd start with 5mg methylcobalamin (activated) B12 daily on an empty stomach. Do this for 3 months. This usually brings a person up to a reading of 1000 or more. This will be absorbed about 1% daily and that is 4x or more the amount from food.
It sounds like a lot, but most never gets into your blood stream...just enough to boost you back.
Some stores locally have this now, like Walgreen's. Costco and Sam's. And you can get it online --all are reasonable in price.

After you get back up...then you can either do the 5mg once or twice a week, or buy the 1mg. But I would continue on it indefinitely. The B12 is important for nerve cell repairs. You will get better faster and more completely with it.

Great, I picked up some activated methylcobalamin B12 5mg tablets and will start taking them daily on an empty stomach. Thanks for the information, mrsD.

My gabapentin makes me feel a bit drunk, but I will gladly take that over the pain. I feel like I'm 80 years old sometimes =[

I will say, though, this condition makes me really appreciate the good days. It makes a day extra special when I get to feel somewhat normal.

Let's hope medical science discovers ways to aid nerve regeneration soon so we all can return to lives without pain and discomfort.

Amen to that about the nerve regeneration!

The B12s that you are taking really have helped me with my energy (mrsD and glenntaj both suggested those).

I have sensory small fiber neuropathy. There are a lot of folks here with a big knowledge base.

I am new to all this, as my symptoms started 07/17/2014. I have found the cycle of grief tough as well as others not understanding the pain. I wish for you to be feeling much better very soon.:hug:

One more thing mrsD - since you're very knowledgeable about medication induced PN:

I take Zofran (Ondansetron) 4mg time to time to deal with recurring nausea that has stuck with me since reacting to flagyl. Would Zofran have anything to do with my neuropathy?

Thanks.

This is hard to say... This drug works on serotonin receptors in the brain. Serotonin is involved in pain perception, and drugs to increase serotonin like Cymbalta and amitriptyline work in an opposite way. But I haven't seen it listed on any PN drug lists as causitive. I don't think many people use it that often either which would take much longer to get the post marketing reports.

Why not switch to ginger extract for the nausea? Taken with a glass of water (to reduce reflux), it is very effective for nausea.
I use it myself since I have a congenital condition of twisted GI tract which sometimes causes nausea for me. I get mine at Puritan's pride...it is very inexpensive. Just don't lie down right after taking it, as it burns if you burp it up.