Hello monkeyman. You certainly have covered a lot of ground on your rabies vaccine journey before posting here. After reading your post I really have little to add or say except that I would really err on the side of caution with invasive testing. Please carefully consider the value of what you might learn from a spinal tap balanced off against potential harm. We all have to live at our own comfort level with these decisions. Wishing you the best with your recovery. It certainly is not easy living with the neurological fall out post vaccine. Still, I've never been so grateful for something that caused me so much misery. Very glad I'm living in a time when there is something that can prevent rabies.

peacefulday, hopefully studying will occupy your mind in a good way this weekend. Best wishes on those exams. You are correct in that few people understand this continuous, deep seated anxiety and fear. I really don't think it's all generated by "anxiety." From what I've experienced, I think there's also something biochemical going on in the brain that causes these periods of dark thought. It's like something is chemically out of balance and out of our control to change by conscious thought, and it comes and goes. I have to say, I haven't had an episode of that gripping fear for quite some time. Hope the same for you soon.

Monkeyman, I suggested talking with your doctors about looking for oligoclonal antibodies in your serum because I wondered if you might have had an unusual immune response to the rabies vaccines and HRIG that you received. Oligoclonal antibodies in CSF (not serum) can indicate MS.

ALS is very rare (about 2 people per 100000 are diagnosed with it each year) and usually signs of it first develop in people in the 55-75 year age range

I'm concerned that if I don't get a diagnosis (as opposed to postulating) with the spinal tap, it might be too late for treatment and these myoclonus issues may stay indefinitely.

It seems as though people without acute hypnic jerk symptoms have been able to make a full recovery. As you mentioned, it's tough holding down a career (for medical insurance etc.) whilst dealing with this, so I'm quite eager to pursue anything that will rid me of this curse...if that something was simply waiting to heal like ATXman, I would prefer that route, but I read that Albertakewl is still experiencing them more than two years later...which makes a lumbar puncture a more palatable option than it was, prior to reading this forum.

That makes sense. I did not realize that there is treatment for the hypnic jerks/myoclonus. The post rabies vaccine is my second experience with myoclonus. The first was with the Cipro debacle...after that the myoclonus lasted for almost four years.

Welcome to the group, monkeyman! Sorry, I've been inactive in the group for a couple of days. I don't have much to add in the way of neuropathic symptoms post vaccine. I experience nerve pain in my hands every so often, and occasional lower back pain. I did have a hypnic jerk once since getting the vaccine series, but never since.

However, if you've read my past posts, you've probably noticed that I have been more concerned about distinguishing actual rabies from post vaccine symptoms and cold symptoms.

I feel like those irrational fears and anxiety have mostly settled. But if I ever have experience with some of the more detailed symptoms you've listed, I'll be sure to post.

Once again, welcome monkeyman!

Also, I hope you are doing well, Batbite!

Thanks, Peacefulday! Each day is a battle, and I'm glad you're not suffering with these worrisome symptoms...I wouldn't wish them on my worst enemy.

Batbite, is it still a nightly occurrence, or do you find that only certain things trigger it? For me it's nightly and some things will make it even worse, such as detox tea, bentonite, alcohol, or feeling exhausted.

Has anyone thought about suing? In my case, I wasn't warned about any side effects, and probably didn't even need to be given the very expensive HRIG.

For between 4-5 months the myoclonus was every night, then it began to taper off in frequency and intensity. The siezures didn't begin until 5 months out...so strange. Now at 9 months out from the bites and 8 months out from completing the vaccine, I haven't had a siezure for almost 2 months. The myoclonus is all but gone, however physical over exhertion, and stress do bring on an episode. I'm over whatever "bug" I recently experienced, but during the illness the myoclonus returned pretty strong for two nights. It's interesting that you mention detox tea and bentonite. I've wondered if physical exercise might release neurotoxins of the vaccine from our tissues back into the bloodstream. With my multi chemical sensitivity, the only things I can use to help my liver out with toxic overload are dandelion root tea, or fresh lemon or lime juice. I've been having one cup of the tea every morning and juicing one or two limes every afternoon. ATX_Man mentioned vitamin D. For many years we have supplemented with vitamin D3, and our Doctor monitors our levels with regular blood tests. Since the vaccine reactions began, I've also begun taking a teaspoon of cod liver oil every morning, again, with our Doctor's approval. In composing this post I looked over my journal notes to get the time line correct....it's been a long and awful journey. No, we were not warned of side effects, just told the typical, "This vaccine is given to children too, and there's usually never a problem." I don't know how much success you'd have with a lawsuit, as there is very little (actually no) choice in the matter of treating rabies exposure, and I think the HRIG is part of why the treatment is so successful these days. I hope you begin to experience some serious improvement soon.

Its interesting what you mentioned about exercise releasing the neurotoxins into your bloodstream. I've started running around the neighborhood again (something I haven't done regularly since before the incident). Since then, I've noticed the nerve pain in my hands and fingers (particularly the finger that I got bit on) coming back. I'm also having headaches, but that could just be from the changing of the seasons. I also drink hot tea once or twice a day, but it isn't detox tea.

As for the suing, I would agree with Batbite that it's probably not worth your time. To be fair, it doesn't cause these awful side effects in the vast majority of people that receive it. We are a minority within an even smaller minority of people that had the rabies shots AND had major post-vaccine side effects.

Also, I'd like to say that even though this whole process has caused me and so many of us to suffer, I am so thankful that the vaccine and HRIG exist. Maybe the HRIG/vaccine isn't necessary for the majority of people with "potential" exposures. But I know for a fact that the cat that bit me was rabies positive. For me, there was no cost-benefit analysis. Like Batbite said, there is no alternative treatment.

Thank you for your insight, Batbite, that's quite the journey!

Mine hasn't really let up since the first month, unless I use RX. Without them it seems to be more or less acute depending on whether I'm stressed/exhausted from poor sleep the night before/had some herbal remedy trigger. However, I have been exercising (walking/jogging) because I heard it can mitigate it with serotonin.

Thanks, peacefulday. That makes total sense. I guess that's why I even brought it up, because it was more of a precaution in my case.

It was total luck to find this forum, but that doesn't mean this is a very rare issue. Check out the WHO site (who.int/rabies/human/complication/en/) on rabies reactions. 6% have an adverse reaction, but if all of us are having trouble getting a proper diagnosis to report, just imagine what the real % might be...

I'm not even from America, but I've lived here long enough to have my fill of those RX commercials spewing every possible side effect in case they get sued ('tell your doctor about our drug, even though you may get the sniffles or lose an arm'). Now just imagine if these rabies shots were widely used and there weren't any warnings...

I wonder why no doctor has suggested a steroid for anyone else's reactions? It was the first thing my neurologist said to me, though he does want to do this spinal tap to be sure, because of the potential side effects.