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Old 09-20-2017, 08:03 AM #231
Batbite24 Batbite24 is offline
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It does play on your mind when any symptoms that could possibly be related to rabies present. Especially in your case and mine with our biology backgrounds, "A little knowledge can be a dangerous thing." My original degree was Dental Hygiene, and of course later I studied TCM. We are attuned to signs and symptoms, diagnosis, and remaining open to all possibilities that could cause those signs and symptoms. When our children were small, I worked 3rd shift as a nursing assistant in a hospital (to keep the children out of daycare.) When I had that job I learned the truth of the addage "Doctors make the worst patients." They DO lie in bed and ruminate over their illness, self diagnose, and are extremely anxious and contentious, questioning everything. The exact behaviors that they discourage in their patients. I don't know how long this rabies experience will nag at the back of my mind. I've kind of drawn a mental "line in the sand" for myself at one year out, Christmas Eve, the date of my bat bite. Every Christmas Eve I celebrate for the rest of my life is going to be extra special. Still having some nerve pain in the left leg, needles and tingling in the soles of my feet, and the occasional myoclonus as I fall asleep, but at least I'm sleeping well, no siezures. Keep on, keep positive, hang on to the solid logic and test results that indicate that things are going well.

Last edited by Batbite24; 09-20-2017 at 08:07 AM. Reason: Grammar
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Old 09-22-2017, 08:58 PM #232
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Default Negative Thoughts Return

So these past few days (as I somewhat suspected would happen) my negative thoughts regarding rabies started coming back. I think it started coming about because I was looking up cold/flu symptoms since I was trying to self-diagnose (like Batbite mentioned).

Somehow through that, the questions about rabies symptoms started popping back into my head. Before I knew it, I was reading message boards that were saying how the vaccine doesn't guarantee anything (especially the longer you wait) and the titer doesn't guarantee protection. Medicine and science is all based on probabilities of how much something might be effective. I don't WANT probabilities, I WANT to know that I'll be 100% okay.

I had all the positive facts and logic behind me (I got vaccinated within 36 hrs, I have a great titer level, I've had no major symptoms in the last month, etc). But I still fell to the same level of self-induced anxiety and panic that I had fallen to in the past.

My mom called it an addiction, and I'd say that's a pretty good description. My mind is addicted to this morbid fear, and sometimes it feels like I just can't get away from it. Its also coming back at the worst time, while I'm trying to study for two exams coming this Monday.

Most of my cold symptoms are going away, which is good. But I have a feeling the anxiety is gonna stick around for a little bit.

I know its probably only Batbite hanging around here now, but this group has once again served as a great source of support for an issue that very few people understand.
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Old 09-22-2017, 09:27 PM #233
monkeyman monkeyman is offline
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Default help wanted with rabies shot reaction questions

Hi everyone!

what happened:
In early May I was scratched by a Nepalese monkey in an unprovoked attack. I received a rabies vaccine (Abhayrab) followed by a HRIG shot (three other vaccines followed in India and USA). I was in the best shape of my life (30s) before this incident, with no surgeries or health issues.

Though my symptoms in the last 5-6 months have eased off a bit, I'm still having nightly insomnia resulting from acute myoclonus.

Doctors differ on whether it's serum sickness or antibodies in the central nervous system being revved up, as the below tests have ALL shown normal readings (no infection from monkey/travel bugs etc.) despite having my CNS wreak absolute havoc. Anyway, life is short(er) so I'll just get right to it with the rest of my symptoms/tests/questions...

symptoms:
-paresthesia (lower legs/feet & forearms/hands)
-carpel tunnel type symptoms (in both hands)
-waking up with numb hands
-fasciulations randomly everywhere
-pallesthesia (left hand/foot)
-myoclonus/hypnic jerks
-Exploding Head Syndrome
-Icepick headaches
-aching/spasms in lower back
-fogginess
-extreme dizziness

tests:
-Brain MRI
-Neck x-ray
-Arm x-ray
-Urine heavy metal panel
-White blood cell differential
-CBC (complete blood count)
-C4 complement
-Creatine kinase
-Cryoglobulin
-C3 complement
-Total hemolytic complement
-Potassium
-Sodium
-Magnesium
-Calcium, serum
-Free thyroxine (T4)
-Thyroid stimulating hormone (tsh)
-Borrelia burgdorferi antibody
-Serum rheumatoid factor
-Erythrocyte sedimentation rate (ESR)
-CRP (C-reactive protein), serum
-Glucose
-Dengue virus antibody
-Total bilirubin
-Alanine aminotransferase (alt)
-Aspartate aminotransferase (ast)
-Vitamin B12 (cobalamin)
-Folic acid , serum
-Vitamin D
-Rickettsia typhus group antibody
-Giardia lamblia antigen
-Clostridium difficile antigen and toxin, a and b, w reflex to pcr

questions:
-has anyone with the same'ish symptoms had the vaccine only (as opposed to + immunoglobulin)?
-has anyone here presented with the typical serum sickness symptoms, including rash?
-has anyone experienced repeated hypnic jerks (most nights) and found a cure without prescription meds?
-has anyone had serum sickness treatment?
-has anyone had a spinal tap to investigate further?
-what tests am I missing to identify the shot reaction?

Thank you!
the Monkeyman
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Old 09-23-2017, 04:13 AM #234
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Monkeyman, that is a very detailed series of tests.

I can't see anything there which suggests acute or chronic inflammation nor a chronic immune response, including (without other clinical signs) an auto-immune condition.

This is just a guess but you could ask your doctors to look for oligoclonal antibody bands in samples of your serum. That may or may not be informative.
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Old 09-23-2017, 11:54 AM #235
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Quote:
Originally Posted by kiwi33 View Post
Monkeyman, that is a very detailed series of tests.

I can't see anything there which suggests acute or chronic inflammation nor a chronic immune response, including (without other clinical signs) an auto-immune condition.

This is just a guess but you could ask your doctors to look for oligoclonal antibody bands in samples of your serum. That may or may not be informative.
Thanks Kiwi, I forgot to add an EMG and nerve conductivity study...is your suggestion a test for MS? After reading this thread, I should probably be more worried about ALS.

I'll definitely ask about it! I'm probably going to do a spinal tap next as they say that should provide more answers. Hopefully others will chime in on my other questions. Cheers.
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Old 09-23-2017, 03:23 PM #236
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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.
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Old 09-23-2017, 03:35 PM #237
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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.
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Old 09-23-2017, 04:34 PM #238
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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
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Old 09-25-2017, 10:40 PM #239
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Quote:
Originally Posted by Batbite24 View Post
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.
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.
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Old 09-26-2017, 11:28 AM #240
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Quote:
Originally Posted by monkeyman View Post
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.
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