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Old 10-01-2017, 01:28 PM #251
Batbite24 Batbite24 is offline
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Originally Posted by monkeyman View Post
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.
O-ho! Don't know where you're originally from, Monkeyman, but indeed, welcome to America where medical care is all about $$$$$$$ for the insurance companies and pharmaceutical companies...where doctors who truly want to practice medicine for the benefit of their patients have their hands tied by government regulation (in lock step with insurance and pharmacy)...where those who dare to question the status quo and practice integrative alternative medicine are persecuted unmercifully, where for the sake of control and profit the government wants to take away your right to choose what happens to your body. Boy-oh-boy! Did I ever want to sue after what Cipro did to me!!! Look into and do some research on the damage quinolone antibiotics have done to people's lives...it's beyond nightmarish, but Johnson & Johnson et. al. have their collective butts covered by little black boxes, which you better darn well read and make an independent decision no matter what the doctor told you. I don't think there's a country in the world with ideal health care, but it would be so wonderful if all would "first do no harm" and put a decent moral conscience before dirty greedy profiteering. AMEN!
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Old 10-01-2017, 01:50 PM #252
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I know my rant in response to Monkeyman is off topic from rabies. Apologies if necessary. The damage done by quinolones is also largely neurological, so not entirely off topic. I'll also repeat again, I'm grateful for rabies vaccine and HRIG. With rabies there's no other choice. But Cipro for a UTI? Talk about targeting a gnat with a cannon!
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Old 10-01-2017, 08:09 PM #253
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monkeyman, what happened with the monkey anyway? You said you were scratched. Was the monkey in the wild? In an animal park? Was there no way to confine and watch or necropsy and test the monkey for rabies so that you might have been spared the vaccine? In my case, I was definitely bitten by a bat. The bat may or may not have been rabid, we'll never know because we never caught it. I was VERY unwilling to bet on the health or lack thereof of my bat. As we all know, with rabies there's no "wait and see if symptoms present." Just curious as to what happened to you and the monkey.
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Old 10-03-2017, 03:25 PM #254
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Originally Posted by Batbite24 View Post
monkeyman, what happened with the monkey anyway? You said you were scratched. Was the monkey in the wild? In an animal park? Was there no way to confine and watch or necropsy and test the monkey for rabies so that you might have been spared the vaccine? In my case, I was definitely bitten by a bat. The bat may or may not have been rabid, we'll never know because we never caught it. I was VERY unwilling to bet on the health or lack thereof of my bat. As we all know, with rabies there's no "wait and see if symptoms present." Just curious as to what happened to you and the monkey.
That's right, Batbite. It's all about the money!

I was at the monkey temple in Katmandu, Nepal. There was no signs/warnings around about the monkeys. But as I approached the temple, I noticed they were stalking me because I had a banana. They were so aggressive that one pounced to grab the banana and within seconds I noticed some bleeding. Shocked and in a panic, I ran down to ask a policewoman about the monkeys and she told me they had rabies. Though there was some dispute about this at one of the local hospitals I went to, whereas doctors at the other said that they not only had rabies, but other deadly viruses too...they also had 2000($) reasons to convince me to get the HRIG.

The monkey looked healthy...I'm not a simian expert by any means, but by contrast to the small and cute ones I encountered in South America, the monkeys in South Asia are much larger and more hostile.
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Old 10-03-2017, 07:33 PM #255
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That's right, Batbite. It's all about the money!

I was at the monkey temple in Katmandu, Nepal. There was no signs/warnings around about the monkeys. But as I approached the temple, I noticed they were stalking me because I had a banana. They were so aggressive that one pounced to grab the banana and within seconds I noticed some bleeding. Shocked and in a panic, I ran down to ask a policewoman about the monkeys and she told me they had rabies. Though there was some dispute about this at one of the local hospitals I went to, whereas doctors at the other said that they not only had rabies, but other deadly viruses too...they also had 2000($) reasons to convince me to get the HRIG.

The monkey looked healthy...I'm not a simian expert by any means, but by contrast to the small and cute ones I encountered in South America, the monkeys in South Asia are much larger and more hostile.
That's quite an adventure story! Reminds me of my globe trotting adventurous middle child...scuba diving blue holes in the Carribbean, feeding wolf eels in the Pacific Northwest, traveling Europe...South America...gives me gray hair and wrinkles, but then I have to remind myself that that is how I raised the kids...to grab opportunities and go for it.

I too wonder why I wasn't offered steroids as an option to the myoclonus, but now that it seems to be tapering off on its own, that's kind of a moot point. Hope your spinal tap is uneventful, but productive of useful information.
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Old 10-15-2017, 09:04 AM #256
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After a relatively uneventful two months and 10 days, I've had problems again. Seems I pushed myself too hard with the housework, and last night I had a bout of insomnia and a siezure. Couldn't sleep so around 1:30 A.M. I went downstairs and ate a little protein and a small amount of pomegranate juice. Fell asleep around 1:45 A.M. Woke up at 2:20 A.M. with my whole body vibrating strongly and a tight feeling in my throat. Waited for the siezure to stop, gave in and reluctantly took a sleep aid and fell asleep. Had some myoclonus as I awoke this morning. So odd...if I have an incident, the timeline is always pretty much identical. O.K. this morning, just feeling tired and washed out. We always host Thanksgiving for the family. I've thought of backing out this year, but hubby really loves the holiday. I just told him I'll need a LOT more help this year. This setback is discouraging, but I don't feel as defeated and shaken up as with past incidents. As always, you wonder how long these problems are going to persist.
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Old 10-16-2017, 07:14 PM #257
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I'm sorry to hear that, Batbite! I think it's important to try to get back to being active and keeping yourself busy. But it's even more important to look after yourself and your own health. If you want to continue doing things like hosting the family for Thanksgiving, then no one is stopping you. Just be prepared for the possible consequences. Is your husband concerned about your issues as well? Make sure you communicate with him if you aren't up for it.

I've been dealing with a few issues myself. In the past 2 weeks, I've been dealing with tingling sensations in my neck and throat. Of course, I'm also still experiencing occasional nerve pain/tingling in my lucky index finger (site of bite/shots). It's more annnoying than anything else. It doesn't throw me into panic attacks like it used to.

Anyway, I hope you and monkeyman are doing well otherwise!
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Old 10-20-2017, 11:50 PM #258
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Sorry to hear that batbite! When you say seizures, do you mean hypnic jerks (a sudden jolt/muscle jerk as you're falling asleep) or is it more like an epileptic fit?

I had a bad reoccurrence of hypnic jerks after taking diphenhydramine (nyquil type sleep aid). Definitely extremely sensitive to even OTC/herbal remedies. What type of sleep aids do you take? Klonopin is the only sure way I've found to stop this type of myoclonus, but taking it on a regular basis is a slipperly slope...the alternative has been months of insomnia. My neurologist reckons all these fasciculations/hypnic jerks are perfectly normal and harmless...I think he forgot to add; 'except if you're a healthy human being.'

I opted out of the spinal tap, after he mentioned that there might only be a 5-20% (lower than the chance of side effects) of finding the inflammation he was looking for, in order to justify the steroid treatment.
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Old 10-21-2017, 08:19 AM #259
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Monkeyman, the siezures are more like epileptic fits, very different than the hypnic jerks or myoclonus that occur as I'm entering or leaving a state of sleep. I have a prescription of Atarax for my allergies which I only take as needed, but it is also anti anxiety and does help me fall asleep. I haven't noticed any benefit from it preventing the muscle jerks. Because of my MTHFR gene variant, a little goes a long way when it comes to medications of any kind. I have to be very careful and all dosages are very small as my body does not process and eliminate toxins well. I think you came to a wise risk/benefit decision on the spinal tap. Most times everything goes well, but if the puncture does not re-seal well the results are devastating. My neurologist also did not seem at all concerned about the myoclonus and nocturnal siezures, but as you said, these events are far from normal in a healthy human being. Since my last post I've been fine again. I can ride the stationary bike 2-3 miles every day and do a few tasks, but if I tackle cleaning the whole house thoroughly and into all the corners all in one day, I have problems. Very frustrating. Gives a whole new perspective to, "The spirit is willing but the flesh is weak."

Last edited by Batbite24; 10-21-2017 at 08:24 AM. Reason: Additional information
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Old 11-11-2017, 12:25 AM #260
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Sorry for the late reply, and sorry to hear it's that bad. I'm surprised they haven't prescribed anti seizure meds.

Do you know anyone that's had a spinal tap gone wrong? I'm pretty much stuck between getting that test with possible discovery/treatment, or living with these challenging symptoms indefinitely. It's interesting how some of us (you and I, Albertakewl etc.) seem to have similar symptoms and haven't gotten better...
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