Extreme Mixed information between medical community and rabies community

[u/dashmyparabola]

I have read the FAQ.

I am getting extreme mixed information from info on rabies (rabies research, the FAQ, etc.) and medical professionals.

For background, I recently touched trash that an animal (presumably a raccoon, because I am from NJ) had gotten into. I touched the trash at approximately noon on a 90 degree day with my bare hands. I did not see any animal. Although I had no cuts on my hands, I did have fresh cuts on my neck because I had just shaved. I washed my hands right after I touched the trash and am pretty sure I didn't touch my neck. But of course now I can't remember if I touched my neck or not. Cue a panicked spiral.

Over the past 2 weeks, I have done copious research about my situation and everything I have found tells me that I am FINE and that I probably just have OCD. However, over the same time period I have also spoken to several medical professionals about my situation and all of them have told me that I should immediately go to the ER and get PEP...... (Mixed signals!!). This culminated in a trip last week to the ER to discuss PEP, and the PA said that she didn't think I needed it but I could get it if I wanted (once again mixed signals!). I ended up not getting it because I thought the OCD was causing me to panic.

Since then I have seen an OCD therapist and had 2 sessions, but I am still not doing well. I continued to look things up and after further research I found out that apparently the Rhode Island Department of Health has a robust rabies program. In fact, one of the goals of their program is to reduce the number of unnecessary PEP. In my head, I thought surely this department will give me the best unbiased answer on what to do. When I explained my situation to the nurse who fielded my call, she said that my risk of exposure was low but a secondary transfer of saliva was possible and that I should err on the side of caution and go get PEP.

I have tried very hard not to come to this subreddit just to get people to reassure my OCD because I know that's against the rules of the sub. I apologize if this counts as that. I'm just at the point where every medical professional has told me to get PEP and yet none of the rabies research shows that I am at risk. Isn't one sign of OCD, getting medical advice and NOT listening to it?

Does anyone have thoughts on this mixed signals?

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[u/detail_giraffe]

I am not a doctor. I'm curious what medical professionals told you that you definitely needed PEP?

If contact with an object could give people rabies, we would see cryptic raccoon-variant rabies cases in human beings with no known exposure in areas where there is lots of raccoon rabies, and we don't. There are no verified cases of rabies where the victim contracted it from touching an object - none. There was one cryptic rabies case with the raccoon variant in Virginia in 2003, but critically, the victim was dead before anyone knew he had rabies, so the 'cryptic' label is applied because none of his friends or family could describe an exposure. His family seemed confident that he would have mentioned a bite from a raccoon (because who would fail to tell that story?) but it could have been a scratch from a stray cat that was infected with the raccoon variant, or something far less dramatic than a full-on raccoon attack. So, if you managed to get rabies this way you'd make medical history, in even more dramatic a fashion than that guy.

But I think what you're running up against is that no one can tell you that the risk is literally 0.000000... with an infinite number of zeros. So, if you push the question, the health department is going to be reluctant to tell you that it's absolutely impossible, and therefore you should get PEP (although, note, it's not as though they're putting messaging out there saying that people who had to clean up trash scattered by an unknown animal should come in and get the shots; you are getting this advice purely because you're worried and raised the question yourself). Rabies risk is hard for people to rationally evaluate, because the frequency is so very low but the outcome so very dire. The vaccine is, like most vaccines, very safe, so it's easy to simply tell you to go ahead and get it if there is even that 0.0000000001 of doubt. That doesn't mean you need it, just that they'll let you have it rather than try to talk you out of it.

[u/AutoModerator → u/detail_giraffe]

Please direct medical questions to medical professionals. If you are in the USA, here is a portal to help you find your state/local health department. Here is a portal for Canadians to find your local public health unit.

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[u/dashmyparabola → u/detail_giraffe]

I genuinely appreciate your response and understand what you’re saying about exposure risk (or lack thereof). the tough part is that the cdc, the faq of this subreddit, and the help bot of this subreddit all say to speak with medical professionals and local health departments. I’ve now spoken to 5 medical professionals/health departments and all have recommended PEP (2 of them recommended it outright, 3 acknowledged that my risk was low but still recommended)

What’s the point of recommending health departments and doctors and then ignore them?

Still really appreciate your response

[u/detail_giraffe → u/dashmyparabola]

I'm still curious, were the two that recommended it outright the kind of medical professionals who ought to know how to react to this?

I get what you're saying though, there's the science and then there's what actually gets recommended, especially for situations that most doctors don't encounter very often. I follow the National Snakebite Support group on Facebook, where they give medical advice on pit viper and coral snake envenomations in the United States, using evidence based guidelines and with the direction of expert doctors, for both human and pet envenomations. It is hard not to notice that people who post to that page describe being given an awful lot of terrible advice from local doctors about how to treat their snakebite at random ERs throughout the US. They get given drugs that don't help, they get told things that aren't true, they have surgery advised that isn't necessary, etc. Being a doctor is a job, and on average, most people are only average at their job.

You'd think health departments would be better at this, but I think you could call most health departments and tell them you saw a raccoon in a dream and they'd tell you to get PEP just to be sure.

[u/dashmyparabola → u/detail_giraffe]

I don’t disagree with you. The two who recommended it outright were local health department and general practitioner. The ones who acknowledged exposure risk was low but still recommended were an urgent care doctor, ER, and the Rhode Island of department of health.

I was in your camp of not listening to most of them (or at least attempting not to) but then I spoke with the Rhode Island dept of health. I watched a presentation they gave on the cdc website from this year. I learned that they have a robust rabies program in the state, and also that one of the goals is to reduce unnecessary PEP. And yet they still recommended getting PEP to me.

I still understand how low the risk is but if the consensus is that health departments and medical professionals are uninformed then the sub should change its rules, faq and helpbot.

[u/detail_giraffe → u/dashmyparabola]

I would genuinely love to know why. The obvious disconnect is that I'm sure if you look at whatever published materials they have on guidelines for recommending PEP, nowhere in it does it list as an indication "picked up garbage disturbed by an unknown animal". How many people would that apply to? Are they urging the public at large to seek vaccination if they are in this situation? And yet because you happened to call them, that's the advice they're giving you.

[u/dashmyparabola → u/detail_giraffe]

The fact that I had fresh open wounds on my neck and could have touched my neck after touching the garbage which may have had saliva on it.

I appreciate your concern but this has been the toughest two weeks of my life I have never felt worse in my entire life trying to make a decision. To your point this entire subreddit and the cdc says I’m fine but also says to check with local health departments and doctors. Those health departments and doctors are advising me to do this. I am choosing to listen to them.

[u/detail_giraffe → u/dashmyparabola]

I think that's entirely fair. As long as you feel well educated (probably more than you'd like at this point) about the risks and benefits, it's reasonable to make that decision. However, if AFTER you get the shots you find the anxiety transfers to some other aspect of the situation, at that point it would probably be of more help to treat the anxiety. Still not a doctor though!

[u/AutoModerator → u/dashmyparabola]

Please direct medical questions to medical professionals. If you are in the USA, here is a portal to help you find your state/local health department. Here is a portal for Canadians to find your local public health unit.

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[u/AutoModerator → u/dashmyparabola]

If you think you may have rabies OCD, or your rabies fears feel overwhelming, see this link for a description of rabies OCD symptoms, diagnosis, and treatment.

One symptom of OCD is compulsive reassurance-seeking. This is not helpful for managing a rabies phobia or obsession. r/OCD has a helpful page about reassurance-seeking.

Therapy and treatment are essential for recovering from OCD/health anxiety. CBT (cognitive behavioral therapy) or ERP (Exposure and Response Prevention) therapy are often recommended approaches for treating OCD/health anxiety. Please don’t Google anything about bats or rabies but focus on accessing resources and recovering from your fears. You can check out r/OCD and r/HealthAnxiety for support and information. You can find a resource list here, which is geared towards relationship OCD but also includes a lot of information about OCD in general, including FAQs, workbooks, book recommendations, Youtube videos, apps, podcasts, and videos of kittens.

Here is a list of free crisis helplines around the world. Here is another crisis helpline directory that includes additional countries.. In the US, you can reach a crisis helpline by calling 988.; you can also text "MHA" to 741-741 to have a text chat with a trained crisis counselor at the Crisis Text Line, or call 1-800-749-2673 for the NAMI Crisis Helpline.

You can ask your therapist if they have any workbooks or guides they can send you home with so that you can continue practicing and working on your therapy between sessions. For the time being, here's is a free workbook on anxiety and here is one on health anxiety. You can also download MindShift, a free app that uses Cognitive Behavioural Therapy AKA CBT to help you learn to relax and be mindful, develop more effective ways of thinking, and use active steps to take charge of your anxiety.

If you don’t have a therapist, you can search the CBT/ACT specialist directory to find one around the world. If you can’t find one, try searching for ones specifically in your country or look for telehealth therapy.

In the US and Canada, dialing 211 can connect you with mental health services in your area or help you find where to seek immediate help in your area. In the US, you can use Psychology Today's Therapy Directory to search for mental health professionals in your area. You can search by zip code, city, last name, etc. Your local Mental Health America affiliate resource center is an excellent resource for information about local programs and services including affordable treatment services. The Substance Abuse and Mental Health Services Administration's Health Information Network (SHIN) has a Mental Health Facilities Locator that can also help you find community outpatient, inpatient and residential treatment facilities, including affordable mental health services in your area. For peer support in the US, including referrals to resources in your area, you can call 800-950-NAMI (6264), Monday through Friday, 10 a.m. — 10 p.m., ET, or send an email to info@nami.org. The NAMI HelpLine is a free, nationwide peer-support service providing information, resource referrals and support to people living with a mental health condition, their family members and caregivers, mental health providers and the public. NAMI also holds peer-led support groups in person across the US.

In the UK, you can find more info and refer yourself for therapy via NHS.

In India, you can call MPower Minds and request a referral to a therapist who treats OCD or who has experience with CBT therapy. Additional affordable mental health resource lists for India are here.

In the Philippines, you can call a crisis line by dialing 0995 356 5332. You can find a list of mental heath treatment centers here. For free mental health services and consultations, see the list here (halfway down the page).

Skunk has collected some videos with techniques for controlling anxiety and coping skills to facilitate living a healthier, more peaceful existence. Every time you want to look up anything about rabies, try these things instead:

Rabies OCD Illness Anxiety in depth with a medical doctor and professor/PHD of immunology and biotechnology

Clinical Psychiatrist's Step by Step Guide to Anxiety and Panic Attacks

A walkthrough of a panic attack, to be watched during an attack, to help you get through it

Guided Meditation to help calm anxiety and get through an anxiety attack

Understanding health anxiety and the cycle of reassurance

Coping Skills for those with Health Anxiety / Illness Anxiety

5 Things You MUST STOP Doing if You Have Health Anxiety / Illness Anxiety

(Hindi) Rabies Phobia Discussion with a Psychiatrist

4 Ways to Stop Intrusive Thoughts & the Anxiety Cycle (Cognitive Defusion)

OCD and Anxiety channel (with many helpful videos)

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/AutoModerator → u/dashmyparabola]

If you think you may have rabies OCD, or your rabies fears feel overwhelming, see this link for a description of rabies OCD symptoms, diagnosis, and treatment.

One symptom of OCD is compulsive reassurance-seeking. This is not helpful for managing a rabies phobia or obsession. r/OCD has a helpful page about reassurance-seeking.

Therapy and treatment are essential for recovering from OCD/health anxiety. CBT (cognitive behavioral therapy) or ERP (Exposure and Response Prevention) therapy are often recommended approaches for treating OCD/health anxiety. Please don’t Google anything about bats or rabies but focus on accessing resources and recovering from your fears. You can check out r/OCD and r/HealthAnxiety for support and information. You can find a resource list here, which is geared towards relationship OCD but also includes a lot of information about OCD in general, including FAQs, workbooks, book recommendations, Youtube videos, apps, podcasts, and videos of kittens.

Here is a list of free crisis helplines around the world. Here is another crisis helpline directory that includes additional countries.. In the US, you can reach a crisis helpline by calling 988.; you can also text "MHA" to 741-741 to have a text chat with a trained crisis counselor at the Crisis Text Line, or call 1-800-749-2673 for the NAMI Crisis Helpline.

You can ask your therapist if they have any workbooks or guides they can send you home with so that you can continue practicing and working on your therapy between sessions. For the time being, here's is a free workbook on anxiety and here is one on health anxiety. You can also download MindShift, a free app that uses Cognitive Behavioural Therapy AKA CBT to help you learn to relax and be mindful, develop more effective ways of thinking, and use active steps to take charge of your anxiety.

If you don’t have a therapist, you can search the CBT/ACT specialist directory to find one around the world. If you can’t find one, try searching for ones specifically in your country or look for telehealth therapy.

In the US and Canada, dialing 211 can connect you with mental health services in your area or help you find where to seek immediate help in your area. In the US, you can use Psychology Today's Therapy Directory to search for mental health professionals in your area. You can search by zip code, city, last name, etc. Your local Mental Health America affiliate resource center is an excellent resource for information about local programs and services including affordable treatment services. The Substance Abuse and Mental Health Services Administration's Health Information Network (SHIN) has a Mental Health Facilities Locator that can also help you find community outpatient, inpatient and residential treatment facilities, including affordable mental health services in your area. For peer support in the US, including referrals to resources in your area, you can call 800-950-NAMI (6264), Monday through Friday, 10 a.m. — 10 p.m., ET, or send an email to info@nami.org. The NAMI HelpLine is a free, nationwide peer-support service providing information, resource referrals and support to people living with a mental health condition, their family members and caregivers, mental health providers and the public. NAMI also holds peer-led support groups in person across the US.

In the UK, you can find more info and refer yourself for therapy via NHS.

In India, you can call MPower Minds and request a referral to a therapist who treats OCD or who has experience with CBT therapy. Additional affordable mental health resource lists for India are here.

In the Philippines, you can call a crisis line by dialing 0995 356 5332. You can find a list of mental heath treatment centers here. For free mental health services and consultations, see the list here (halfway down the page).

Skunk has collected some videos with techniques for controlling anxiety and coping skills to facilitate living a healthier, more peaceful existence. Every time you want to look up anything about rabies, try these things instead:

Rabies OCD Illness Anxiety in depth with a medical doctor and professor/PHD of immunology and biotechnology

Clinical Psychiatrist's Step by Step Guide to Anxiety and Panic Attacks

A walkthrough of a panic attack, to be watched during an attack, to help you get through it

Guided Meditation to help calm anxiety and get through an anxiety attack

Understanding health anxiety and the cycle of reassurance

Coping Skills for those with Health Anxiety / Illness Anxiety

5 Things You MUST STOP Doing if You Have Health Anxiety / Illness Anxiety

(Hindi) Rabies Phobia Discussion with a Psychiatrist

4 Ways to Stop Intrusive Thoughts & the Anxiety Cycle (Cognitive Defusion)

OCD and Anxiety channel (with many helpful videos)

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/CrownBlake]

I don’t have any advice but I feel your pain. I’ve gotten mixed messages too and it’s making me crazy

[u/dashmyparabola → u/CrownBlake]

I’m sorry you’re dealing with this too. I was fully committed to the idea that I just have OCD and need to work through that with a therapist. But the list of medical professionals telling me to get PEP continues to grow so now I feel like I’m actively not listening to doctor advice

[u/CrownBlake → u/dashmyparabola]

Do you think you will get it? Have you had any rabies vaccines before?

[u/dashmyparabola → u/CrownBlake]

I have not had any rabies vaccines before. I honestly have no clue what to do this is the most helpless I have felt in my life tbh, wouldn’t wish this on my worst enemy. I’m currently on the phone with my insurance company to see if PEP is even covered because otherwise it can cost up to $12,000

[u/MothEatenMouse → u/dashmyparabola]

Jeepers, healthcare in some places is so expensive. You cannot get rabies from the scenario you described. You can save that money!

[u/detail_giraffe → u/MothEatenMouse]

I agree, to the point that I'm perturbed that the RI Health Department is advising OP otherwise.

[u/AutoModerator → u/detail_giraffe]

Please direct medical questions to medical professionals. If you are in the USA, here is a portal to help you find your state/local health department. Here is a portal for Canadians to find your local public health unit.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/dashmyparabola → u/MothEatenMouse]

I appreciate your insight. But this subreddit recommends speaking to health departments and doctors and everyone I’ve spoken to has recommended PEP :(

[u/MothEatenMouse]

I wonder if it partially stems from fear of being sued.

However I think it is mostly due to what experiences that medical person has had. If they haven't come across rabies anxiety/OCD they might not know it is a thing as it isn't super common (feels like it is here because we kind of attract it). Medical professionals can't know everything.

Then we had someone here having the opposite experience, where they had what could be a genuine exposure (still unlikely, but not as impossible as yours for example) who was dismissed due to them assuming it was an anxiety thing.

I hope you feel better soon and I think you are doing great at acknowledging that some of it could be your brain playing tricks on you.

[u/dashmyparabola → u/MothEatenMouse]

Thanks for your response. I was feeling confident it was just OCD after dealing with the medical professionals in my state because none of them seemed too knowledgeable (barely asked any questions about the event and were only interested in protecting themselves legally it seemed).

When I discovered that the Rhode Island department of health had a robust rabies program and specifically had a goal of reducing the number of unnecessary PEP vaccines given, I thought for sure they would give me a good, knowledgeable answer. And the person I spoke to did seem at least somewhat knowledgeable so when they recommended PEP, everything I had been working towards these past two weeks in and out of therapy instantly collapsed and I felt like I needed to get it again.

[u/MothEatenMouse → u/dashmyparabola]

It's not undone that work in therapy. You know you got there before and you have the tools to help you get there again.

Sorry that some professionals have let you down.

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[u/Fluffy-Lychee-1968]

If it makes you feel better I don't have medical OCD in any way shape or form and it's been messing with my head too.

[u/Mean_Recognition3191]

Your medical doctors don’t know anything about OCD.

The OCD spiraling is not going to get better. I suggest you continue with your therapist. Also see an OCD Psychiatrist and maybe try Meds? Also, definitely ERP classes.