So you want to hear a crazy story? And any neurological geniuses out there --I need your help and input!!

Here is my recent bizarre neuro nightmare:

I was the picture of health and I also had a baby NYE 2012...

Then I had sex on March 12, 2013 and caught some odd virus. (It wasn't an STD as I have since been repeatedly tested for Herpes 1, 2, chlamydia, gonorrhea, syphilis, all the Heps, and HIV.) BUT I WAS really scared it was HIV --and was a nervous wreck --as I somehow was transmitting it to my daughter via breastmilk as we both got extremely ill with fevers, night sweats, extreme fatigue, thick mucus and tears, jaundice, and I had a tingle downstairs. (I also had diarrhea, this lasted every day until I saw a chiropractor, 1.5 months later, but I'll get to that later.)

I went to the GYN and he gave me Flagyl to take (which I prob didn't need.) After taking it for a few days I had an extreme reaction with head pressure and a burning mouth and tongue. Water tasted like liquid fire and I ended up in the ER with this extreme reaction.

The next day I noticed I got very dizzy and then I noticed my arm was tingling, over the month it spread to my feet, hands, face, ears, I even felt it up my nostrils! I had horrible headaches, pressure, dizziness, and extreme anxiety the entire month. Then towards the end of month one, the PN started to let up.

Month two, I suddenly got tinnitus. As I had already seen a neurologist and GP and they told me that the tingling was all a reaction to Flagyl and should go away, but as I got a new symptom I decided to try the natural route, a chiropractor.

I had never been to a chiropractor before and she adjusted my body relentlessly saying I was full of toxins and she was going to help detox me. Afterwards I felt really funny and the next four days had the worst headache of my life; across the bridge of my face, behind the eye, in back of my head. Suicide pain. During this pain I continued to breastfeed. Mistake.

On the last day of these excruciating headaches, my baby started throwing up violently and then had what looked like a seizure two days in a row --and then she went into a trance for four days. Of course I panicked and brought her to pediatrician and they saw it and told me to take her to pediactric neurologist. So I did, but by the time the apt came a week later, she seemed like a normal baby. But I still saw some behavior that was not right (wont smile, laugh, play old games, obsessively biting down on everything.) Looking back I can't help but think that I had massive toxins released into my breastmilk, toxins that neurologically screwed up my baby!

Suddenly the diarrhea was gone. It had turned into constipation.

During this crazy baby week the PN came back. Then I had a cold and then the PN came back with a force I didn't know was possible. It woke me up at night. Always worse in the arms. It started with fatigue -extremely exhausted like I have never been. I collapsed without feeding my children as I was so ill!! I had never done that! Who does that?? I awoke several hours later burning up but the room was freezing. My temperature was only 94.5. My arms burnt like the sun! I ended up in ER again. They sent me home. (I should add that my temp the entire month was around 95.)

I continued to not have a bowel movement for 2 weeks. The constipation was severe. then 17 days and no amount of prune juice or glycerin would work I tried magnesium.

That's when the really crazy neurological story begins!

I only took 1/3 of a 250 mg of magnesium. In 30 minutes I got so dizzy I could not stand. Then, I swear to god, shapes of everything around me started changing. Walls turned round, floors were slanted, sinks were flat. I was freaked. This reaction lasted 20 hours. The next day I felt funny until the afternoon, then I ate a healthy meal, a lentil spinach beet salad. It started happening again, but this time colors were brighter, too bright, sounds were loud, pronounced and echo-like. I couldn't go into a trader joes as my SENSES were too hyperactive. Somehow my body's sensory system was in an extreme heightened aware state from a metabolic reaction! I also got a huge skin lesion on my shoulder/neck area.

And that's not all, suddenly, overnight after the magnesium, I developed acute autonomic dysfunction. I woke up extremely thirsty and felt like I could not breathe, or even figure out how to breathe normally. My heart which was always a perfect slow light rhythm was pounding out of my chest. My chest hurt so much over the following week and my left arm kept getting numb. All the while why I tried to figure out how to breathe. The palpitations were relentless.

This craziness landed me in the hospital again. This time they kept me, for four days.

By the time I had gotten to the hospital, I was a nervous wreck from the food-caused heightened visual and auditory senses and the heart and breathing. Actually the heart and the numb arm scared me the most. The walk I took my baby on everyday I could no longer do without my heart going nuts. And I was practically fasting as I was terrified to eat as the reaction was so intense!

The hospital was a good break, but they were focusing on the neurological issue with metabolizing food. And I'm not sure if it was from all the fasting or what, but it started to go away. The released me saying they were a small community hospital: a place to have a gallbladder removed or have a baby. They were not equipped for this type of complex neurological disease. They recommended I go to a neurologist at a teaching hospital.

I went home and (via connection) made an apt with a top neurologist in NYC. (I hope he can help me. The apts in two weeks.)

So now we are up to date. In the meantime the metobalic reaction hasn't come back (yet) but the heart and breathing come and go and now I have PN over every single inch of skin on my body! I also feel like my insides are always vibrating and I hear/feel the heartbeat loudly in my head. What's worse now is my heart is constantly doing these weird ectopic beats with a thud. It's freaking me out so much that I'm wearing a holter monitor now so my GP can see what I'm talking about.

I also have an appointment with an infectious disease specialist next week. We are not sure if this is viral now? How can this be from an antibiotic??!!

Or is this toxin related? I can't help but feel like the extreme reaction I had at chiropractor meant I was full of neurotoxic something??

Please any neuropathic private investigators out there give me your insight? Doctors are confused and I'm living a neurological nightmare.

P.S. I've had normal blood tests of everything you can think of. Full panel Lymes, all organs, urine, stool, they even did blood tests and sent them to mayo clinic. Nothing. Normal head MRI, CT scan.

I forgot to add I also have daily fasciculations all over and bizarre back pain behind my ribs. Also my billrubin was elevated (but I have Gilbert's syndrome so not sure if related.)

Wow. Im so sorry you are going through this. I have no advice, but hope you find answers. I hope your baby is ok too.

Thank you. This has without a doubt been the most horrific period of my life. Every morning I wake up realizing I'm in a nightmare that has yet to end.

I'm not sure about baby. She is better. I had to switch to formula (which was painful for me) as we were worried about the breastmilk being toxic. She had bloody spit up a few times with the breastmilk. In terms of her nerological condition, she is smiling now, but still seems "off." She doesn't squeel or laugh and won't play any of our old games. Just wants to bite down. It's beyond stressful to witness.

I see two potential problems here.

1) the initial virus, sounds like a form of hepatitis, from the symptoms you describe. Were you tested for liver functions?
Were they elevated? Not all hepatitis is A, B , or C. There are general infections that may occur from other viruses, but they are usually temporary. There are tests for the A, B, and C variants, and those would show antibodies if you have or had one of those infections.

2) Flagyl is metabolized by the same enzyme system as alcohol. That is why a sticker is put on the bottle by the pharmacy to AVOID ALCOHOL. People can inherit an inability to metabolize this drug, and therefore aldehydes build up in the system. These cause all sorts of symptoms similar to Antabuse (alcohol deterrent)
drug which shares the same system.
These are the symptoms of aldehyde build up in the body:
from http://alcoholism.about.com/od/meds/a/antabuse.htm

Flagyl can also cause lesions in the brain. This complicates things for diagnosis considerably. They can resemble the lesions caused by MS. They only show up on MRIs.

I hope the specialist you have found is Dr. Latov, or Dr. Chin, in NY.
Some of our PN posters have been to one of them, with favorable results.

We had a poster Beglet, here who claimed to have gastroparesis from Flagyl... she no longer posts here sadly.

Autonomic neuropathy can affect the stomach, blood pressure, and heart, if the nerves that supply them are damaged by a toxin or infection. It is tricky to diagnose. Sometimes there can be triggers in the environment that set off autoimmune diseases, like Sjogren's or lupus. So I think you will have to wait until you see your specialist.

That's some good thinking there Mrs. D. I have seen a couple of descriptions (on alcohol related forums) of people who decided to drink on antabuse. They match pretty closely with the symptoms described by NBM.

Aldehydes are also formed as a by-product of fructose metabolization BTW.

Thanks. That's excellent information.

I do not drink alcohol. But I am wondering about the viral route. Should I ask the infectious disease dr about the other hepititus viruses?

Actually I already saw Dr. latov. He was the first dr I went to 2 weeks after taking the flagyl. Back then (first week of April), when I went to him, the neuropathy wasn't so bad and he wrote it off as a simple flagyl reaction and said it would be gone in two months. I've called repeatedly after this and he has never called me back or answered my questions. As its getting worse, and severe and bizzare, I'm going to Columbia Hospital's neurological institute. Dr. Louis Weimer instead to see if his team can figure this out. I'm pretty terrified at this point.

Also what could have caused the neuropathies to get set off the autonomic and sensory so quickly? It happened in a matter of hours.

Sometimes I think the mind/body route isn't helping. I've been extremely stressed/depressed during this bizarre neuro illness. Who wouldn't?

P.s. the jaundice was only week one in march when I first contracted the virus.
I also have joint pain too now.

I want to add again that I have Gilbert's syndrome, which means my liver takes a longer time to clear things out than normal and my bilirubin is always raised.

But I did notice that bilirubin jumped significantly from early April to end of May. When I was in the hospital 2 weeks ago.

April 8, 2013 hepatic function panel:
Bilirubin, Total 1.4 (high)
Bilirubin, Direct .02 (normal)
Bilirubin, Indirect 1.2 (high)
Total protein, 7.2 (normal)

May 30, 2013 hepatic function panel:
Bilirubin, Total 2.7 (High)
Bilirubin, Direct .04 (high)
Bilirubin, Indirect 2.3 (high)
Total protein 8.4 (high)

All other hepatic panels were in normal range but were also raised from April. They dismissed these results as they knew I had Gilbert's. but this was high, even for me.

I can't but hope if I figure out what virus or toxic hold is on me, I can figure out these extreme neuropathies. I'm pretty desperate. I feel so sick and have such bad fatigue, I can no longer take care of my kids.

In May I did do a full STD TEST and did not have A,B, or C. What other one could it be?

I'm very interested in the aldehyde theory.

If you are right, then the build up could have poisoned my breastmilk.

Question is I took the flagyl all the way back in March. And I have symptoms now. Could the aldehydes be stuck in my system? Also could it have been a lethal combo with the magnesium oxide?

I had to take Flagyl for a couple days and I was miserable. I couldn't take my pain meds and it landed me back in the hospital. It took days after I was off it to even be able to eat. This was a few months before the PN started. Nobody has been able to tie it together, but it's there.

How was your delivery? Epidural? Congrats on the baby. My husband is a NYE baby too, always a party going on for you!