View Full Version : Possible vCJD Transmission after seeing my optometrist
bosmerbeauty
24-09-20, 15:28
I think this is a legitimate concern and not just HA. I am looking for your opinions, support and reassurance, though I'm not sure if I can be reassured. It's done now and I can't go back.
I and my 11 your old son were both given a glaucoma test which involved a tiny probe touching the white of the eye. Naturally, because I am highly aware of germs, I asked him if it was disinfected or disposable probes. He told me they were disinfected with alcohol and I saw them sitting in a jar in alcohol. I saw him switch to new probes before touching our eyes so I felt safe.
Later I researched about vCJD being transmitted through those probes and if alcohol was strong enough to kill vCJD as I know prions are very difficult to kill.
It turns out that alcohol is not recommended and in fact enables the prion to bind to the probe and now I am scared to death that I have been transmitted vCJD and worse my son has to. I really wish I would have told him to wait until I researched this more then I would have refused that test.
I don't know how I'm going to live with this information in my head. vCJD can take years to appear. I or my son may not even have it but I don't know for sure and I'm worried sick. I feel like we are now at higher risk.
How can I live peacefully knowing this? I don't know what to do.
You're not researching, you're doing random searching on Google. Don't kid yourself, and don't do it.
bosmerbeauty
24-09-20, 15:46
You're not researching, you're doing random searching on Google. Don't kid yourself, and don't do it.
Regardless, the documentation I found confirmed that alcohol would not kill the prions and vCJD was transmissible through probes not properly disinfected ie: using alcohol.
NotDeadYet
24-09-20, 15:46
Bosmerbeauty
Definitely not a legitimate concern and most definitely your HA. The only way to "live with this information" is to challenge your thinking. The odds of you contracting this from this procedure are so incredibly low, like infinitely low.
Best Wishes
Bosmerbeauty
Definitely not a legitimate concern and most definitely your HA. The only way to "live with this information" is to challenge your thinking. The odds of you contracting this from this procedure are so incredibly low, like infinitely low.
Best Wishes
Exactly. Your odds are the same as winning the lottery, if not lower.
Agree with the others. This is a kin to rabies from ninja bats.
Positive thoughts
bosmerbeauty
24-09-20, 15:55
Exactly. Your odds are the same as winning the lottery, if not lower.
I felt that way before having this procedure. Now I feel the odds are much higher.
That's because anxiety makes people delusional. I've been there myself so I'm not judging you, but you really need to accept your own faulty thinking patterns.
bosmerbeauty
24-09-20, 16:18
That's because anxiety makes people delusional. I've been there myself so I'm not judging you, but you really need to accept your own faulty thinking patterns.
I don't know how it's delusional. The very real fact is that the probe he used in our eyes was not clean and we are at a higher risk now of contracting this illness. If vCJD was on the probes, we are absolutely at risk or even have it now. It doesn't seem delusional to see the risk involved here.
Okay, I'm out. I've been trying to help but if you're happier in your HA place then there's not a lot that I or anybody here can do.
One last piece of advice (from somebody who, as I've stated, has been there) - stay away from Google so you don't find out anything else that'll trigger you.
nomorepanic
24-09-20, 17:14
Why were you researching vCJD in the first place?
You say "If vCJD was on the probes, we are absolutely at risk or even have it now. It doesn't seem delusional to see the risk involved here."
what makes you think it was on the probes at all anyway?
I think your are way off the mark with this one to be fair.
bosmerbeauty
24-09-20, 17:17
Okay, I'm out. I've been trying to help but if you're happier in your HA place then there's not a lot that I or anybody here can do.
One last piece of advice (from somebody who, as I've stated, has been there) - stay away from Google so you don't find out anything else that'll trigger you.
It's not that I'm happier. I'm saying there is a very real risk. It's not delusional to recognize that risk. If we hadn't had that procedure I would not be concerned. Obviously we are more at risk than someone who has never had that procedure. My goal in asking about this was how to be at peace with it because my son and I have a real possibility of being exposed to this disease.
bosmerbeauty
24-09-20, 17:23
Why were you researching vCJD in the first place?
You say "If vCJD was on the probes, we are absolutely at risk or even have it now. It doesn't seem delusional to see the risk involved here."
what makes you think it was on the probes at all anyway?
I think your are way off the mark with this one to be fair.
I don't know if it was on the probes but if they haven't cleaned the probes properly, which they hadn't, then it very well could be.
I researched to see if vCJD could be killed by alcohol because I knew there was a link to eyes from researching this disease a while ago.
The facts remain... The instrument was not properly cleaned and had it touched somebody else's eyes who had vCJD, then I and my son are at higher risk. We could have absolutely contracted it. That is not delusional HA. Even someone without HA would recognize this risk.
Naturally, because I am highly aware of germs, I asked him if it was disinfected or disposable probes. He told me they were disinfected with alcohol and I saw them sitting in a jar in alcohol. I saw him switch to new probes before touching our eyes so I felt safe.
What changed?
Respectfully, this is not even close to the realm of reality :huh: Replace your post and fear with some of the other posts and fears and lack of reasoning behind them and its like any other irrational illness post here.
That said, sadly, you're deep in the rabbit hole with this one. Hope you feel better soon.
Positive thoughts
bosmerbeauty
24-09-20, 17:53
Respectfully, this is not even close to the realm of reality :huh: Replace your post and fear with some of the other posts and fears and lack of reasoning behind them and its like any other irrational illness post here.
That said, sadly, you're deep in the rabbit hole with this one. Hope you feel better soon.
Positive thoughts
Why is it not close to the realm of reality? Because most people don't have vCJD? So that's why our risk is low even in this situation having been exposed to an unclean instrument? I'm trying to understand how the risk is not something to be concerned about. I'm really trying. I didn't worry before this procedure. Having this procedure done with an unclean instrument knowing it can be transmitted this way is why I'm concerned.
It changed and I no longer felt safe when I learned his cleaning method was not cleaning anything at all.
Since first reported in 1996, there have been 229 cases WORLD WIDE! It can be passed by blood transfusion or eating infected beef. That's why its out of the realm of reality. Two pages of replies and factual reassurance and you're literally arguing to keep this fear alive. Continue if it makes you feel better :shrug:
FMP
bosmerbeauty
24-09-20, 18:21
Since first reported in 1996, there have been 229 cases WORLD WIDE! It can be passed by blood transfusion or eating infected beef. That's why its out of the realm of reality. Two pages of replies and factual reassurance and you're literally arguing to keep this fear alive. Continue if it makes you feel better :shrug:
FMP
Ok thank you. That's where I will have to put my hope then. That although it's pretty much guaranteed we will contract this disease if the person had vCJD and used the same instrument but because it's so rare even though it was an unclean instrument I probably have not contracted it because of the rarity.
bosmerbeauty
24-09-20, 18:55
Since first reported in 1996, there have been 229 cases WORLD WIDE! It can be passed by blood transfusion or eating infected beef. That's why its out of the realm of reality. Two pages of replies and factual reassurance and you're literally arguing to keep this fear alive. Continue if it makes you feel better :shrug:
FMP
There's a lot more cases of CJD than vCJD so of course that increases the risk also as we could contract it from either type. It would be vCJD for me but from a CJD infected person, which is more common, but it still seems like it's pretty rare. I'm in Canada and there have been two in my province in the last couple of years. That's doesn't help my anxiety. Anyway hopefully we didn't contract it.
AMomentofClarity
24-09-20, 21:44
It's not that I'm happier. I'm saying there is a very real risk. It's not delusional to recognize that risk. If we hadn't had that procedure I would not be concerned. Obviously we are more at risk than someone who has never had that procedure. My goal in asking about this was how to be at peace with it because my son and I have a real possibility of being exposed to this disease.
if you had not had the procedure, you would have found something else to dwell on. That’s how HA works
bosmerbeauty
24-09-20, 22:25
if you had not had the procedure, you would have found something else to dwell on. That’s how HA works
I was hoping to hear from others about how they would deal with this if they found out their optometrist used an unclean instrument in their eye and it could have transmitted an infection and that infection is terrible and fatal. Afterall, that's why instruments are supposed to be cleaned properly. Because they DO transmit infections. It's not something I've made up in my mind. It would be a legitimate reasonable concern for anyone. Whether or not I have HA, I and my son have been exposed to to an unclean instrument and that's not something anyone would take lightly.
Whether or not I have HA, I and my son have been exposed to to an unclean instrument and that's not something anyone would take lightly.
In your mind perhaps. What Optometrist, at the risk of losing their practice and being sued, would be that careless?
FMP
bosmerbeauty
24-09-20, 22:57
In your mind perhaps. What Optometrist, at the risk of losing their practice and being sued, would be that careless?
FMP
My optometrist. I talked with him about it. He said he didn't know that alcohol wasn't enough to kill CJD and he's looking into it. He said he also trusted alcohol to do the job just like I did. It's online clear as day that it does not kill CJD. He should have made sure before assuming alcohol was good enough.
I saw him switch to new probes before touching our eyes so I felt safe.
My optometrist. I talked with him about it. He said he didn't know that alcohol wasn't enough to kill CJD and he's looking into it. He said he also trusted alcohol to do the job just like I did. It's online clear as day that it does not kill CJD. He should have made sure before assuming alcohol was good enough.
So you called back between your first post and now, and the doctor admitted he didn't know that alcohol wouldn't kill about probably the rarest disease in human existent? Aside from the fact that you just cannot get it that way, aside from the sheer numerical odds, its not even a grain of sand on the worry beach. I'm sorry, I'm having difficulty accepting that.
That said. You're obviously convinced. No amount of facts or reassurance is helping :shrug: Call your doctor and let us know what he/she says. "Told You So Gang" on standby :winks:
FMP
bosmerbeauty
24-09-20, 23:16
So you called back between your first post and now, and the doctor admitted he didn't know that alcohol would kill about probably the rarest disease in human existent? I'm sorry, I'm having difficulty accepting that.
That said. You're obviously convinced. No amount of facts or reassurance is helping :shrug: Call your doctor and let us know what he/she says. "Told You So Gang" on standby :winks:
FMP
That's ok. You don't have to accept it. No, I called him this morning before posting. I was hoping he'd tell me something encouraging but he didn't. I was also upset that he hadn't ensured it was the proper method of cleaning and sterilizing his instrument and I wanted him to know before he exposes anyone else to unclean instruments.
I think this is a legitimate concern and not just HA. I am looking for your opinions, support and reassurance, though I'm not sure if I can be reassured. It's done now and I can't go back.
I and my 11 your old son were both given a glaucoma test which involved a tiny probe touching the white of the eye. Naturally, because I am highly aware of germs, I asked him if it was disinfected or disposable probes. He told me they were disinfected with alcohol and I saw them sitting in a jar in alcohol. I saw him switch to new probes before touching our eyes so I felt safe.
Later I researched about vCJD being transmitted through those probes and if alcohol was strong enough to kill vCJD as I know prions are very difficult to kill.
It turns out that alcohol is not recommended and in fact enables the prion to bind to the probe and now I am scared to death that I have been transmitted vCJD and worse my son has to. I really wish I would have told him to wait until I researched this more then I would have refused that test.
I don't know how I'm going to live with this information in my head. vCJD can take years to appear. I or my son may not even have it but I don't know for sure and I'm worried sick. I feel like we are now at higher risk.
How can I live peacefully knowing this? I don't know what to do.
That's ok. You don't have to accept it. No, I called him this morning before posting.
Can you point that out in your OP?
FMP
bosmerbeauty
24-09-20, 23:32
Can you point that out in your OP?
FMP
Why? The facts of situation aren't different because I talked to him. I told him what I've said here. The same exact things about cleaning the probes and the ineffective use of alcohol for CJD but I'm told it's just my HA. Yes I might be worrying more because of HA, however, what happened is still concerning even for someone without HA. In the end my son and I have still been exposed to an unclean instrument. There is more of a risk now than we had yesterday which was pretty much zero. Just because I have HA, it doesn't mean I'm not allowed to have a legitimate concern in situations that are realistic.
panic_down_under
25-09-20, 00:00
I'm in Canada and there have been two in my province in the last couple of years. That's doesn't help my anxiety..
There have only been two cases of vCJV (https://www.canada.ca/en/public-health/services/surveillance/blood-safety-contribution-program/creutzfeldt-jakob-disease/cjd-canada.html#c) in Canada, one in 2002, the other in 2011. In both cases the disease was contracted outside Canada. There is no evidence for community transmission.
PS: should also have added that all cases worldwide were caused by eating infected meat, or by blood transfusion. vCJD can't be transmitted through coughing, sneezing, touching, or sexual contact.
AMomentofClarity
25-09-20, 00:03
Why? The facts of situation aren't different because I talked to him. I told him what I've said here. The same exact things about cleaning the probes and the ineffective use of alcohol for CJD but I'm told it's just my HA. Yes I might be worrying more because of HA, however, what happened is still concerning even for someone without HA. In the end my son and I have still been exposed to an unclean instrument. There is more of a risk now than we had yesterday which was pretty much zero. Just because I have HA, it doesn't mean I'm not allowed to have a legitimate concern in situations that are realistic.
Im not trying to be rude here because I’ve been where you are in terms of anxiety. But what you are afraid of here is absolutely not a legitimate concern.
You're doing what all anxiety sufferers do....actively looking for something to worry about.
bosmerbeauty
25-09-20, 01:48
There have only been two cases of vCJV (https://www.canada.ca/en/public-health/services/surveillance/blood-safety-contribution-program/creutzfeldt-jakob-disease/cjd-canada.html#c) in Canada, one in 2002, the other in 2011. In both cases the disease was contracted outside Canada. There is no evidence for community transmission.
PS: should also have added that all cases worldwide were caused by eating infected meat, or by blood transfusion. vCJD can't be transmitted through coughing, sneezing, touching, or sexual contact.
Yes those were by eating beef with mad cow disease. vCJD might be the wrong type. It's the one you get from contaminated instruments. I think that's Acquired (Iatrogenic) CJD. My mistake. Anyway a CJD positive patient can contaminate the instruments. There are a lot of CJD cases compared to vCJD cases. So more chances of them contaminating instruments. I think instrument transmission is low but it's possible and more possible for me because I've been exposed to an unclean instrument.
My point is I feel more at risk now and I obviously am since yesterday I wasn't exposed to dirty instruments touching my eyes. Now that I know this I don't know how to be okay with that and not worry. My only solace is knowing that most people don't have CJD so my son and I likely didn't contract it, but it's not something I can know for sure. That's the scary part. Especially since the cases in my province were right in my city. I thought it was 2 but it was 3. All related to eye cataract surgery.
bosmerbeauty
25-09-20, 01:53
Im not trying to be rude here because I’ve been where you are in terms of anxiety. But what you are afraid of here is absolutely not a legitimate concern.
You're doing what all anxiety sufferers do....actively looking for something to worry about.
Except in my situation something happened that is a very real concern. Even if I didn't have HA. This is concerning. Would you knowingly allow a Dr. to use a dirty instrument on you? Obviously not. Because you'd be concerned about contracting something right? Same for me except for me it happened and I didn't know until it was too late.
panic_down_under
25-09-20, 09:52
Anyway a CJD positive patient can contaminate the instruments.
Not by merely having an instrument touch the eyeball. Prions need to come in direct contact with nerve tissue of the central nervous system. This didn't, couldn't happen with the test you had.
Australian guidelines do not require special cleaning of instruments which only touch the anterior segment of the eye, i.e. the front exposed third of the eye including the cornea, iris, and sclera (the white outer layer of the eyeball) - see Table 1 (https://www1.health.gov.au/internet/main/publishing.nsf/Content/icg-guidelines-index.htm), Low-infectivity or no detectable infectivity(2). Prions cannot penetrate tissue and make their way to the nervous system on their own.
Especially since the cases in my province were right in my city. I thought it was 2 but it was 3.
Two were symptomatic before the surgery, the third seems to be still under investigation. You have not had potentially infected tissue such as a corneal graft implanted, or surgery involving the central nervous system so they are not relevant.
Ian, I admire your persistence, but I think you're probably bashing your head against a brick wall here.
Pamplemousse
25-09-20, 10:52
I have to say I agree with BlueIris here: having read through this thread it would seem the OP is now unswerving in their position on this matter. The prions are resilient little buggers, not killed by heat or radiation either (source here (https://www.nhs.uk/conditions/creutzfeldt-jakob-disease-cjd/)). I suspect nothing that even @panic_down_under can say will have an effect upon the OP's train of thought.
vCJD is one of the rarest diseases in the world; even here in the UK which was badly hit by it, in 2014 there were no cases of it (last known figures).
Hell, I'd even go so far as renaming the thread "Impossible vCJD Transmission after seeing my optometrist"
bosmerbeauty
25-09-20, 11:49
Not by merely having an instrument touch the eyeball. Prions need to come in direct contact with nerve tissue of the central nervous system. This didn't, couldn't happen with the test you had.
Australian guidelines do not require special cleaning of instruments which only touch the anterior segment of the eye, i.e. the front exposed third of the eye including the cornea, iris, and sclera (the white outer layer of the eyeball) - see Table 1 (https://www1.health.gov.au/internet/main/publishing.nsf/Content/icg-guidelines-index.htm), Low-infectivity or no detectable infectivity(2). Prions cannot penetrate tissue and make their way to the nervous system on their own.
Two were symptomatic before the surgery, the third seems to be still under investigation. You have not had potentially infected tissue such as a corneal graft implanted, or surgery involving the central nervous system so they are not relevant.
Thank you so much for taking time to look this up and provide me with more information instead of just saying "it's your HA get over it".
It says: "sclera (but not if allogeneic sclera used)" so "allogenic sclera" is not low infectivity or no detectable infectivity but I'm not sure what allogenic means.
It's difficult for me to fully accept this information (although it has definitely made me feel better) because other literature of studies done say that poorly sanitized probes can contain CJD and it can be transmitted to someone else.
Here is one example of what I read:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4115807/
"Contact tonometry, preferred by ophthalmologists, may be capable of transmitting sCJD. Consideration should be given to using disposable instrument covers after each use. The use the disposable covers or non-contact tonometry is preferable in the absence of effective disinfectant processes at this time."
"The findings indicate that ocular tonometry may be an important iatrogenic method of transmission of the infectious agent for sCJD."
I read other studies with the same findings.
bosmerbeauty
25-09-20, 12:49
I have to say I agree with BlueIris here: having read through this thread it would seem the OP is now unswerving in their position on this matter. The prions are resilient little buggers, not killed by heat or radiation either (source here (https://www.nhs.uk/conditions/creutzfeldt-jakob-disease-cjd/)). I suspect nothing that even @panic_down_under can say will have an effect upon the OP's train of thought.
vCJD is one of the rarest diseases in the world; even here in the UK which was badly hit by it, in 2014 there were no cases of it (last known figures).
Hell, I'd even go so far as renaming the thread "Impossible vCJD Transmission after seeing my optometrist"
You suspect wrong. Wow some people are really insensitive and rude on this forum.
@panic_down_under is the first one to actually offer more than "it's just your HA! You must be happy with that! You're in a rabbit hole!" -- so thank you to @panic_down_under for actually having a conversation about this with me and offering alternate information for me to consider.
I'm sorry for being brutal. I appreciate you must be terrified right now, however, the thing that always helped me with my crippling health anxiety was a swift kick up the metaphorical rear. I wasn't trying to dismiss you, I was trying to encourage you to see another perspective.
I still think you're being very irrational, but I know how tough it can be when the fear has a hold and I didn't mean to hurt your feelings.
bosmerbeauty
25-09-20, 14:06
I'm sorry for being brutal. I appreciate you must be terrified right now, however, the thing that always helped me with my crippling health anxiety was a swift kick up the metaphorical rear. I wasn't trying to dismiss you, I was trying to encourage you to see another perspective.
I still think you're being very irrational, but I know how tough it can be when the fear has a hold and I didn't mean to hurt your feelings.
It's okay. It's understandable. I have HA but I'm also a factual analytical person. I'm not totally off the bandwagon. I know I worry more than the typical person but not all my worries are senseless. If a doctor said to anybody "I'm going to use a tool that's not been cleaned properly" no one would be agreeable to that. That's just common sense and not HA driven.
I know that although an unclean instrument was used on my eye and my son's eye, it likely did not have CJD because it's so rare. I get this and find a bit of peace in that. But of course it's not 100%.
The tonometer that he used on our eyes was the one that touches the sclera (white part of the eye) and I know there are other tonometers that touch the cornea. I think the sclera is less risk than the cornea which helps me feel a bit better. It's also quite possible that the studies I've read were testing the tonometers that touch the cornea.
I get you, I think. I also like facts and being aware of concrete risks, but what's helped me more than anything is learning to accept uncertainty.
Yes, I'll acknowledge that if the information you've given me is accurate (and you seem smart enough to be able to pick the right sources), there's a hypothetical risk there. However, my gut instinct is that if this was going to be a vector for the disease it would have happened by now. Somebody has to be the first for everything, but that doesn't make it likely.
panic_down_under
25-09-20, 14:33
Here is one example of what I read:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4115807/
Which is a lot of estimates, maybes, 'could bes' and hypotheses mixed with what I call brain farts all of which don't amount to much, imo. Firstly, they fail to demonstrate that prions reside on the exterior of infected corneas and transfer from them to the probe, then can move from the probe to the next patient's cornea and penetrate into it to infect the eye and subsequently the central nervous system. Nor does there appear to be a single case of this ever having happened. I also point out that you said in the OP that the probe hit the white of the eye (sclera), not the cornea. Of all the ways you might meet your end this is up there with being hit on the head by space junk.
My advice, step away from the computer and go and have some fun with your boy. It will be much better for both of you than scaring yourself needlessly with Dr Google's diagnoses. It is a quack.
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