Intensity of bee venom

[Sam G]

This is very sobering. I remember reading your message some time ago and started this thread partly with your experience in mind.

I certainly wouldn't wish it on anyone. I don't mind updating on the immunotherapy though once it starts, maybe my experience can help someone else

In the meantime I have my sentinel pro gear, my epipens and my long suffering, commendable husband!

 

[CLB]

If the letter offering you the course of immunotherapy doesn’t specify giving up beekeeping as a condition, surely you can accept and wait for them to ask you again if you’re still keeping bees. Is it possible it could have been the personal views of one doctor as opposed to local policy? I wish you all the best and hope the immunotherapy really helps. It would be very interesting to hear how you progress - thank you.

 

[jenkinsbrynmair]

Don't worry, SWMBO's GP has flatly refused to even refer her for immunotherapy and backed up his decision with a pack of blatant lies.
as for bees and immunotherapy - I know a bee farmer locally who has been undertaking treatment for over two years. The only thing he changed in his business was to buy an Old Castle Farm 'beeproof' suit.

 

[Sam G]

Don't worry, SWMBO's GP has flatly refused to even refer her for immunotherapy and backed up his decision with a pack of blatant lies.
as for bees and immunotherapy - I know a bee farmer locally who has been undertaking treatment for over two years. The only thing he changed in his business was to buy an Old Castle Farm 'beeproof' suit.

Yes, that is the same suit I have. Why will they not refer her?? Because they keep bees or some other reason?

 

[Sam G]

If the letter offering you the course of immunotherapy doesn’t specify giving up beekeeping as a condition, surely you can accept and wait for them to ask you again if you’re still keeping bees. Is it possible it could have been the personal views of one doctor as opposed to local policy? I wish you all the best and hope the immunotherapy really helps. It would be very interesting to hear how you progress - thank you.

The first letter I received was a copy of the one sent to my GP outlining what had been discussed at my appointment and the tests they had done that day. It stated within the letter that I had been told they would offer me immunotherapy if I agreed to get rid of my bees.
The letter I received today confirming my diagnosis and offering the treatment however, doesn't mention me keeping bees.

Whether it gets brought up at my next appointment is another matter I guess. Watch this space...

 

[CLB]

Quite shocking when you hear so much about none life-threatening treatments being given. However in a post-Covid era perhaps the NHS is having to prioritise much more (still seems totally unreasonable to me). Sam, if you haven’t put anything in writing, how can it be enforced? Good luck.

 

[jenkinsbrynmair]

Why will they not refer her?? Because they keep bees or some other reason?

It's because he is an imbecile - lazy, arrogant and incompetent but unfortunately he must have a 'Guardian angel' high up in the Health trust because he leads a charmed life (unlike many of his dear departed patients)

 

[Erichalfbee]

It's because he is an imbecile - lazy, arrogant and incompetent but unfortunately he must have a 'Guardian angel' high up in the Health trust because he leads a charmed life (unlike many of his dear departed patients)

I’m afraid there are a few. I have a friend recovering from tonsil cancer. She’s been left with worryingly increasing lymphodema. Her oncologist tells her there’s nothing he can do it’s just going to get worse and she’ll have to live with it and anyway they don’t refer head and neck patients to the lymphodema clinic.
I duppose he thinks it’s enough to save lives even if they are c**p afterwards

 

[Wingy]

Stings from young bees appear to be less potent than older ones - or maybe the bees are not strong enough to drive the barbs in far enough to hold? The more poison injected, the greater the reaction - I assume(?).
(I write as someone whose annual sting count exceeds 100 and is now immune to most stings)

Ha Ha someone else in my camp. Usually well exceed 100 stings in a season and rarely react. Got off to a good start this season by forgetting to zip my suit up properly & got a hood full of bees. I just had to move, close my eyes and bash my head in until I got them all - 8 stings to the face and no reaction at all

 

[BugsInABox]

but was very politely told those were the conditions.

I think most doctors would respond to ‘ok, why is that?’ pretty reasonably.
I’m just wondering if mid immunotherapy risks rise beyond your current baseline (I don’t know this, but the immune system is very idiosyncratic).
Regards
(Dr) BIAB.

 

[Sutty]

Sounds very odd to me (as a Dr, but very different field), I'd expect them to encourage you to give up, but if you said you're going to carry on I'd still expect them to go ahead (possibly a better indication), though they could be worried about the effect of stings during the treatment. Maybe fostering the bees out during treatment might be a good idea.

 

[Sam G]

I think most doctors would respond to ‘ok, why is that?’ pretty reasonably.
I’m just wondering if mid immunotherapy risks rise beyond your current baseline (I don’t know this, but the immune system is very idiosyncratic).
Regards
(Dr) BIAB.

Thanks BIAB
I have an amazing GP that I feel totally confident in approaching and she has been a constant source of support and help. The allergy consultant at the hospital was more clinical and seemed to want to shut me down as soon as I tried to point towards other NHS trusts that don't make that a condition of treatment, so I didn't want to ask why that was after already giving her the examples to back my point up in case she decided I was probably not going to conform.

With regards to treatment timeliness and risk, you got me thinking about that and I came across a study (it's a bit lengthy but an interesting read) and it does cover mid treatment reactions. Just past the first set of graphs but the whole study was interesting

I don't think I can post a link but it was
Safety and efficacy of venom immunotherapy: a real life study
Agnieszka Kołaczek, Dawid Skorupa

 

[Erichalfbee]

Here
https://pubmed.ncbi.nlm.nih.gov/28507496/

 

[blackcloud]

So the doctor is refusing treatment because bee stings are essentially a self inflicted injury?
Then instead I will sit in front of Netflix 18hrs a day eating pizza like the great unwashed.
My ensuing cardiovascular issues will no doubt be a priority treatment.

 

[Erichalfbee]

So the doctor is refusing treatment because bee stings are essentially a self inflicted injury?
Then instead I will sit in front of Netflix 18hrs a day eating pizza like the great unwashed.
My ensuing cardiovascular issues will no doubt be a priority treatment.

It’s a Trust issue likely

 

[Sam G]

Here
https://pubmed.ncbi.nlm.nih.gov/28507496/

Thank you

 

[Erichalfbee]

Thank you

Thank you
I found another article that reports how some people are still reacting despite immunotherapy so their induction doses are increased leading to successful treatment.
It suggests that retaining field exposure while under treatment is a good indicator that the patient is getting enough of a dose…… but then I’m not an immunologist

 

[Sam G]

Thank you
I found another article that reports how some people are still reacting despite immunotherapy so their induction doses are increased leading to successful treatment.
It suggests that retaining field exposure while under treatment is a good indicator that the patient is getting enough of a dose…… but then I’m not an immunologist

Thats an interesting point, the study I was reading last night also seemed to suggest participants were not discouraged from field exposure

 

[madasafish]

Thats an interesting point, the study I was reading last night also seemed to suggest participants were not discouraged from field exposure

One of our members who suffered a serious immune reaction after a sting - and received treatment on the NHS - continued beekeeping during her treatment.(But with high levels of protection). She still keeps bees after c 5 years from the incident.

 

[Midget Gem]

I did mention this at the first appointment, and even pointed to a bbc news article which commended the NHS for enabling beekeepers with allergies to continue, but was very politely told those were the conditions. I don't know if it is that particular NHS trust, or that particular allergy consultant making this decision
I don't want to bring it up with them again now I've been offered the immunotherapy in case they think I'm not onboard and withdraw the offer.
What i really want to say to them, is that at the age of 42 I'm old enough to make my own choices about the risks I take and shouldn't be held to ransom. I don't ever recall a skier being told they would have to agree to never ski again before the hospital agreed to fix their broken leg after a skiing accident etc...

How will they know? Can't see them coming round to check.