Hi Batbite
 

I am terribly afraid, I have seen two neurologists who didn't perform any physical exam on me but just tested me for an MRI. I need to have an EMG done to rule out ALS and have an appointment with a new neuro on Friday. Hopefully can get EMG done next week. We have all suffered so horribly and I hope we all get through this better and stronger and safe.
I just turned 29 so I hope I have a lot of good years left

We need to get EMG done, both of us

More possible causes
 

It is strange how probably most people don't have problems with this vaccine, but some of us do. I have some thoughts and experiences to share just for the sake of information if nothing else. Almost 6 years ago my health was severely damaged by a prescription of Cipro, which is a fluoroquinolone antibiotic. Fluoroquinolones contain a fluoride ion that allows the medication to cross the blood-brain barrier. Many of my symptoms were neurological, including myoclonus and depression. Other than that I developed a raging Candida infection, tendon and ligament damage, a torn retina, food allergies, multi-chemical sensitivities, extreme fatigue, and inability to regulate my body temperature. Traditional Chinese Medicine (acupuncture and herbs) were the best help in that situation, but over all, time, rest, good nutrition, and a lot of patience went into my (incomplete) recovery. It took 5 years for me to feel even reasonably good. The food allergies and multichemical sensitivity are still with me and are probably permanent. Then I was bitten by the bat, and the rest of that history is on this forum. In searching and researching answers to the Cipro problem, I had myself tested for the MTHFR gene variant, and came up heterozygous positive on both genes. Not as bad as homozygous positive, but my results still mean that my body is not methylating well, lacking in a liver enzyme that allows the body to break down and remove toxins, therefore the toxins stay in the body longer and do damage. I need to practice very careful avoidance of pharmaceuticals, and I knew the rabies vaccine would probably be problematic, but in the case of a bat bite with no bat to test...you have no choice. Just some thoughts as to why those of us on this forum might be having the problems we are.

BatBite,
That is a good theory. My symptoms come and go, as do everyone's appear to be. I have had so many tests and doctors and time, I think I am finally better and over something and then I get worse again.
I hope we all recover fully, I don't know how much more I can take.

trippin2, you say you are now about 3 months out. For me that was the worst time frame post vaccine. From about 2 1/2 months to 4 1/2 months out it was so bad I didn't know if I'd make it, and the possibility of living out whatever was left of my life under those conditions was unthinkable. Then, 4 1/2 to 5 months out I began to feel slow, small improvements. Hopefully this will happen for you, too. I know I'm not "out of the woods" yet, and things could relapse, but I'm far better than I was at 3 months.

That is encouraging news and I hope we all recover like the people before us have

I'm glad you're still online and active here on the forum, it's nice to have someone to talk to

Takes one to know one
 

Yes, the forum was (and is) huge for me. Family and friends try to be supportive, but as this drags on and on, you can tell they don't get why you are so fearful every time something happens. They don't get that you withdraw socially because you pretty much look fine, and the doctor said you would be fine. The 3 months that I had a terrible time walking, and was in sooooo much pain, they were concerned, that's very visible. But the rest...it's just as awful. The creepy thing is that a lot of the neurological stuff is the same as rabies symptoms. Understandable I think, that that would strike fear into your heart!

[QUOTE=Batbite24;1248804]Yes, the forum was (and is) huge for me. Family and friends try to be supportive, but as this drags on and on, you can tell they don't get why you are so fearful every time something happens. They don't get that you withdraw socially because you pretty much look fine, and the doctor said you would be fine. The 3 months that I had a terrible time walking, and was in sooooo much pain, they were concerned, that's very visible. But the rest...it's just as awful. The creepy thing is that a lot of the neurological stuff is the same as rabies symptoms. Understandable I think, that that would strike fear into your heart

I am having muscle twitches all over my body now for a week, now my eye is twitching uncontrollably. My mom and boyfriend have both completely written me off as a hypochondriac and the doctors think I'm nuts too. I'm starting to even doubt myself sometimes until I read these posts. I feel like I'm having a stroke a lot of times because I go numb and it's terrifying

I hope that people in the future can gain hope from all of these posts and also just doing research online from other vaccines that cause our symptoms. I have a neuro appt tomorrow and he better not tell me it's anxiety

Journaling
 

trippin2, are you or have you considered journaling your experiences and symptoms? Due to what happened to me with the Cipro, I began documenting everything after the rabies vaccine. It helps to have a clear record when you talk to the doctors, and you can look back at a time line of what has happened. At one point the muscles on the front of my neck twitched strongly for weeks, you could see it. I had my husband watch it and his response was "mmmm-hmmmm." He's been pretty good about everything, but doesn't know what to make of it, and I think feels helpless too. Please let us know how your neuro appointment goes. Even if there's nothing to be done but wait this bugger out, it would be nice to be taken seriously. I would also err on the side of caution regarding any invasive testing.

Hi Batbite,
I ended up with a wonderful neuro yesterday! He listened to me and BELIEVED me about the vaccine! I was so happy I hugged him yesterday. (He also looks like a Kennedy so it's rather pleasant talking to him :)
He is researching all of my symptoms. He thinks inflammation like all of us and said that none of this is anxiety, post vaccine reactions can and do happen, we are the unlucky few.
It was very encouraging.
I have a couple of things I've noticed. I seem to do worse inside with my air conditioner cranked. (I live in Phoenix and it's the middle of August so it's hard not to have it on full blast) I am much dizzier and my fingers and numbness are worse then.
I have also read a lot of adverse reactions from young women who have had the gardasil shot series. THOUSANDS of girls were sick from this and I wish it was banned. I haven't heard of many girls getting the gardasil vaccine like they were in the 2006-2012 but hope parents don't use this vaccine, it has been proven to be a waste. I hope they have recovered fully as well, they are similar to us and had to go through a whole series, which is always worse
Hope everyone has a good weekend and if anyone wants to talk with me or Batbite please chime in!

Also Batbite, I am thankful for you. I was bitten by a bat too, so I feel a strong connection to you. I was in Sedona Arizona last weekend and a wild bobcat bit 7 tourists and was positive for rabies a while back so those people are undergoing the series now. I hope they are ok and recovering, I wondered how they were faring from the shots.

So glad to hear that you had a successful appointment! Yes, the Gardisil really left a trail of ruined lives. Hope the best for all of those young women too.

BatBite
Did you have bad muscle spasms?
I am on week 2 now, they are getting less intense but still here. I have never had them this long
Hope everyone had a good weekend

I have had both muscle jerks/twitches (myoclonus) and muscle spasms (the muscles contracting for a period of time, not jerking or twitching.) The myoclonus mostly happened as I would drift off to sleep, that time between wakefulness and sleep, but would also sometimes occur when awake (as with the muscles on the front of my neck.) The muscle spasms would occur along with the nocturnal siezures (I would wake from a sound sleep with pretty much all of my muscles tightening and shortening, whole body shaking/vibrating, jaw muscles clenching down, urinary urgency/incontinence...sometimes I would make it to the bathroom in time, sometimes not.) These were not Grand Mal siezures where you wake up in a pool of urine and don't know what happened or can't remember the event. I always woke up when the muscles began to spasm and was aware of the whole event. It's all happening less and less as time goes on...still journaling everything in a small book. I dog ear the pages where I've had a major event so it's easier to look back and see how I'm progressing. There were also times when my fine muscle coordination was really bad, had a difficult time writing...that also shows in the journal.

This is a lot like my symptoms, especially the stiff hands. Every day when I wake up I think, well, I'm another day further removed from this. Hopefully getting better and better.
This terribleness has really opened my eyes and made me re-evaluate my whole life. This disease as I call it has affected not only my health but my mental well being and my relationships, not to mention my money.
I don't care about any of this anymore except being healthy. All the dumb crap I used to worry about was so meaningless and I foolishly took everything for granted in my life. Never will I again
If we can get through this we can get through anything

Hi Batbite,
Just wondered where you are and how you are this week?
Talk soon I hope

Hello, trippin2! I seem to be having a really good string of days again. The last neuro problem I had was very mild siezure symptoms at about 2:00 A.M. eight days ago. I seem to be gaining more endurance, been exercising on the stationary bike 6 days a week, although by evening I'm still pretty tired. (That may have to do more with my age, 65.) The depression and brain fog haven't been a problem for awhile now, and I've regained interst in my hobbies. I'm about half way done making Christmas gifts for the women in the family. This may seem trivial, but it's not. At my worst post vaccine, I could not have even thought of doing much of anything...I was physically, mentally, emotionally and spiritually spent. For the moment, I'm thankful to be in a very good place. Hopefully I'll soon be able to join my husband and the dog on daily walks again. My legs are still not up to a lot of weight bearing exercise.

BatBite,
It's good to hear from you! I am so very glad you're doing great! Very happy to hear. Life takes on a whole new meaning
I have been having twitching but it's lessening. I have noticed my muscles are weakening and atrophying. Did this happen to you?
I have lost weight and don't move around very much, hope that's why.
Going for EMG next week to answer my question once and for all.

Have a good week, it's always so nice to hear from you.
Can't wait til the day we are ALL recovered and better than ever

I did have loss of muscle tone and some weight loss. I think it was from a couple of things; loss of appetite from worry, and just the whole weird neuro thing. The only way to describe it was like being psychologically paralyzed along with the physical pain and partial paralysis in my legs and all the other wierd symptoms, and not knowing what was going to go haywire next. I literally sat for months. I knew in my head it was important to keep moving and doing things, but I just couldn't...also was just so very low on energy. I managed to make nutritious meals, the laundry got done, and the bedding was changed every week, but other than that, the housework, gardening, anything else.....all went to hell in a hand basket literally for 5 months. I still don't feel that I'm back 100%, but I am far, far better than I was back in those dark days. Been keeping an eye on the weight, and I have gained back 5 pounds. Also hoping the best for everyone in this situation. It seems some are hit so much harder than others.

Hey guys, I am new to this group, but I am so glad that I found it! I am a 21 year old male and received the post exposure prophylaxis starting exactly 23 days ago (over 3 weeks ago). I was bitten by a rabid cat on my fingertip. I've spent the last 3 weeks absolutely paralyzed with anxiety and fear. Despite being told countless times by medical professionals and experts that I received the vaccine promptly and that I'll be completely fine, the anxiety is still lingering. This anxiety combined with vaccine reactions has definitely affected my life to the point of where I can't work because of fear that some little symptom will set off a panic attack.

It started with a headache and chills the morning after my Day 7 injection. That was followed by vomiting and diarrhea later in the morning. After that incident, I didn't have any more serious incidents. I got my Day 14 injection and I was good until about three to four days afterward. I started feeling tingling in my hands/fingers and toes. Then pain in my arms, mostly in the left arm(particularly on my elbow, wrist, and bicep area). The tingling has mostly gone away, but now I'm experiencing back pain. I'm currently researching to see if it might be related to the anxiety meds I've been put on.

Anyway, just wanted to share my story so far with this group. I'm really glad that I found it. It puts my mind at ease that I'm not alone in this and that rabies vaccine reactions are a very real thing. At least we can all get better together! :)

Hi Batbite,
So good to hear from you. Glad you're having a good week, you're coming up on a year mark, which I hear is the magic number for symptoms really just disappearing. I am over 4 months now. Twitching every day this month, sometimes more so than others. Getting EMG Wednesday. Heard it's very painful but permanent peace of mind (HOPEFULLY) will be worth the temporary pain and suffering
God Bless Us All
And any fellow rabies vaccine sufferers, please feel free to join in with us, we will be more than happy to answer anything or help

don't worry about the emg, its really not that bad......i've had at least 12 now and they really do not bother me.

Welcome
 

Glad you were able to find this forum, peacefulday. Just reading your post brought back vivid memories. Hope the support you find here is reassuring for you as this experience runs its course. It's been a tremendous help to me.

Thank you for the warm welcome, Batbite. I'm not sure how long its gonna take before I'm fully healed, but in the meantime this group has been a great comfort. I hope the very best to you and everyone else getting through this.

Thank you for this! I got mine bumped up to Tuesday now. I read horror stories online and I have been scared after this vaccine reaction of what may happen.
Good to hear it's over hyped on pain

Peaceful Day,
Welcome here. You are safe here and no one will judge you. Come and read as often as you like and ask us anything.

I have a few things I'd like to say to you as I go through this. I am over 4 months since my last shot.

Your body will go through changes. Very scary changes. But your body and all of ours are fighting what it thinks is rabies to protect us. So don't be too alarmed and when you are, reach out to us here. We have all been through this. It is a process.

Go to the doctor early and get the tests done early to rule anything out and believe what they say to you. If they come back clean, they are. This will bring much peace and calm to your life.

If you go in panicked as I have many times to doctors, they will immediately write you off as a hypochondriac and won't help you. They will say its anxiety EVERY TIME.
Also- never tell the neurologist about the vaccine and blame it- they DO NOT believe us. Maybe say something like this at the end "the only thing different I've done is get a rabies vaccine series" and they will be much more receptive. Act very cool and only slightly worried at doctors- it will go much better for you. They are almost like presenting a case before a judge! Think of it that way.

Stay busy. This is where I failed. I have quit working and am done with grad school. So all day long I was reading horror stories and went through extreme
Anxiety to the point it really affected my life. It has taken a heavy toll on relationships and I have spent thousands of dollars and time at doctors, all for naught. Big Big Mistake.

Be prepared for the long haul. Some days you'll feel amazing and some you won't get out of bed. That's okay. We have all been here. When this happens, write to us.

Get on MedHelp and also HealthTap. There are great vaccine sufferers and doctors on both.

Read these posts again and again and also journal. BatBite suggested journaling and she was right! Wish I had from beginning. Every day write "I will get through this."

And last: re- evaluate your life. Get right with friends and family and whatever higher powers you believe in. I sat around isolated and felt sorry for myself. Big error. Practice gratitude even in these hard times

But if I help you, then all of my suffering has been worth it!

We care about you here and we believe you. Your friends and family love you but don't want to hear about the vaccine day in and day out. They won't think you're lying, but they won't believe you like we do. They aren't going through it and that's okay. We are- but you're not alone

Trippin2,

Thank you so much for your post and for taking the time to give me some really helpful advice during this difficult time. Your post was probably the only bright spot in a very dark day. The tingling/pain in my left hand and particularly my left index finger (where the bite was) came back from a few weeks ago. I had some pain in my left arm too. I'm still dealing with some back pain as well. I spent a few hours in bed just dealing with my fear.

I've had so many people tell me that I've done everything correctly when handling rabies exposure, but I'm still so so worried. Does anyone have any advice for dealing with these feelings?

Peaceful Day,
You definitely got the shots in time, don't worry about that at all.
You have up to 10 days easily and you got yours done FAR before that. Seriously, I promise.
There has NEVER been a death from rabies vaccine failure either. Never.
100% positive on this.


The numbness and tingling has been experienced by every single person here, so don't you fret. Totally normal. Just keep your hands down and watch a funny movie. Only watch comedies as you go through this, you will be amazed at how much better you feel.

If you need me I'm here and so is BatBite, and many others!

peacefulday, I don't know what to tell you on this one...wish I did. Against all logic, I too had an awful fear of vaccine failure for a long time. Everything I researched and read, as trippin2 stated, re-enforced the fact that vaccine failure is extremely rare and only happens when something was done incorrectly, like giving the vaccine itself in the gluteal area, or not thoroughly cleansing vicious, deep, tearing bites around the head and face. The most reassuring data I found was a study done on Imovax in Iran, where large numbers of people were treated up to 14 days post being bitten by rabid dogs and wolves, and all of them survived just fine. trippin2's advice on distracting yourself with something positive is right on the mark. The time frame you are in now is probably the worst. This situation is one tough bugger, as you not only have physical symptoms, but the vaccine definitely affects your state of mind too. Hang in there, it's very difficult, but things will get better.

Thank you both so much for your support. Last night was very rough and it took me a few hours before I could escape my negative, doom and gloom mindset.

The tingling has mostly gone away again, but the back pain is still there. I read previous posts from members that said they had back problems as well. Reading those made me feel a little more at ease.

As I said, your support means the world to me. Hopefully I can return the favor if you guys are ever in a really bad spot like I was.

Peaceful Day,
You have a good weekend and stay busy okay? Read books, color, watch movies, but best medicine is really social activities. Human nature is to hide away but I think you'll be amazed what happens when you take your mind off things.

I promise you'll be okay
Me and BatBite are here. She's a wonderful person too with a heart of gold



God Bless Us All

PS- wanted to tell you you're a good person too Peaceful Day. This vaccine made me question my sanity and confidence, and I had a horrible support system in my boyfriend. He wasn't there for me at all and made me feel much worse. But- I got through it though and it made me a lot better person.

I have decided to leave Phoenix and my boyfriend. He's a jerk and I ignored it and made excuses for him for far too long ( 2 years to be exact )

If you go through this roller coaster like we all have, there will be some life changing moments for you! But remember- it's just a ride. We're on a long flight with smooth sailing and some bumpy turbulence thrown in. But we're still going to land at our destination :)

Part of this whole experience for me was processing the fact that I'd been bitten by a bat at all. Never in my life did I imagine something like this would happen. With modern animal control and most people being responsible pet owners, you kind of think the scourge of rabies would be relegated to long ago history...not so.

BatBite,
I was bitten by a bat too, what are the odds. (Maybe we should start playing lotto instead. Haha :)

I was walking my dog in phoenix at dusk and I saw the bat, thought nothing of it. Figured he'd fly on to his next spot!
Next thing I know something is flapping in my face unrelentingly and I'm swatting away and feel a tiny little prick. Went inside and saw two puncture wounds (which are still on my thumb to this day)

I am pretty sure it was rabid or it wouldn't have attacked me like that. My dog is current on vaccs so she had a booster to be safe. (She didn't even feel her rabies shot at the vet- lucky dog. Lol)

You should see the reactions I get from people when I tell them the story and show the bite 😵 🦇

We had in our area 2 yrs of rabies in skunks! In a densely populated city no less. My son used to see them emerge from a street drain at his bus stop and often with kits. The kids used to PLAY with them sometimes, as they can be quite docile. The next most common vector is raccoon.

The CDC website has some interesting statistics if you want to look them up. Basically the US has the lowest reported rabies
stats compared to other countries.

In the recent past, the UP of Michigan did a bat survey for the little brown bat, and found 25% caught were carrying rabies.
I never saw stats for the lower penninsula.

YIKES!!!!! 25%!!!!! The stats I am familiar with put the percentage of rabid bats at 4 or 5%. This is my bat story; we were staying with my daughter and her fiancé who live in a large 3 story drafty old Victorian house in lower Michigan over Christmas. The goofy kids know there is a large bat population in their neighborhood and remove a couple of bats from the house every summer. (Yes, I've preached at them from my "Mama pulpit" to no end on how dangerous this situation is!) There were huge ice dams on the edges of their roof, and on Christmas Eve there was a warm up and a big thaw. All evening huge chunks of ice rumbled and crashed off the roof, even taking out a section of the edge of the roof. That night after going to bed, our dog, who sleeps with us, would NOT settle down...barking, jumping, running all over the place...totally off the rails crazy until 2:00 AM. We couldn't figure out what her problem was. She NEVER before or since has behaved that way. TWO DAYS LATER we're sitting in a booth at a restaurant with really bright lights over the table, and I see two sets of fang marks in my right hand...1+1+1=3!!!!! Bats in house, probably in the attic or the chimney, sliding ice dams and crazy dog, and bite marks. Went right to the E.R. with our story and had the vaccine series...my husband too, just by virtue of the fact that he was sleeping in the same bedroom. You can be bitten by a bat and not know it, and they can bite on the fly. We never found bite marks on my husband, but we did find a bite on the dog's belly. Called the vet and she said the dog would be fine as she had just had her 3 year rabies vaccine the previous July. I've always loved my dog, but I feel now as though I very well may owe her our lives! Eight months later, and I too can still see the bite marks on my hand. Mrs. D. how odd that you should quote statistics from the U.P. of Michigan...I LOVE it up there! We own properties in and around Marquette and plan on retiring there.

And...
 

When we took the dog to the vet for her regular check up this July, I brought along photos of my bites and the bite on the dog that I had taken on a macro setting as they healed. The vet said definitely bat bites. She also said that she and many other veterinarians think that a lot of cases of "encephalitis" are actually rabies that isn't correctly diagnosed. Not all cases of rabies are "furious rabies" with drooling, foaming, and fear of water.

Here is some interesting statistics:

Emerging Disease Issues - Maps of Rabies Positive Animals in Michigan

The bats that were studied in the UP were deliberately caught
in nets. I seem to recall they were considered carriers, and were not ill themselves at the time.

The skunks in our area, made it into the papers, and people were urged to not approach or touch one.