March 04, 2016

I Wish Someone Would've Told Me BEFORE I Started Beekeeping… #6

My beekeeping addiction knows no bounds. Yesterday for 303 Day, I bought a GoDaddy domain name for this blog. See up top? You're looking at www.303beekeeper.com now. Why I spent $10 to have that URL is kind of beyond me, except that it gives me something to write about. I spent good money for blog content. It really makes no sense because, as I've said before, all beekeeping is local. If I move (and that is the plan) then I'm going to have to buy another domain with my new area code, like 805beekeeper.com.


The thing I've spent the most money on, though, for the sake of giving you something to read as much as for my own safety, is Venom Immunotherapy (VIT). And this brings me to #GoodToKnow #6:

I wish I would've known BEFORE I spent $6,000 that there isn't a conclusive way to know if VIT works.

QUOTE:
"There are no specific tests to distinguish which patients will relapse after stopping VIT, but there is a higher risk in some patients than others. Relapse is less likely with 5 years than with 3 years of VIT.50,53Although most patients can safely discontinue immunotherapy after this period of time, some patients with a history of severe anaphylaxis with shock or loss of consciousness still might be at continued risk for a systemic reaction if VIT is stopped, even after 5 years of immunotherapy.46,47,52"
When I started this whole ordeal, the doctor told me that they would test my blood to make a determination. The nurses I've quizzed over the past 2 1/2 years have been pretty much stumped when asked for details. None has ever known, "How much venom is in a shot?" or "Why can't the venoms be mixed?" or "How does an allergy shot compare to a real sting?" One did mention an "antibody titer" when I asked how they would test to see if the allergy shots were working, but again, no details.

It's upsetting to me that the doctor I got switched to couldn't answer my question on how they'd know if my therapy is working. Her response was, "If you want to stop, let's stop." Who said anything about stopping? Why would I want to stop after having invested thousands of dollars out-of-pocket?! It irritates me to no end that a) I feel like I've been misled, b) I feel like I'm just an open wallet to them, and c) a basic question can't be answered by someone who is supposed to be educated on the matter. The doc said she had to "research" how venoms work because a skin test could show a false positive. After I got snarky with her on the phone, she finally said that rather than run up my bills — she admitted it! — with another skin test, let's plan on a blood test in 6 months when I'm at the 3-year mark.

The thing is… I think it's time to fight my addiction. As much as I'm curious and would love to share the results with you, my pocketbook's in bad shape and I just need to stop. I don't really need to know if there's serum venom-specific IgE in my blood or whatever it is they'd be looking for. I'm going to have to carry EpiPens all my life whether or not the therapy works. I just paid for a set of antigens to last through June, so I'll use them up and give a final VIT report then. 

5 comments:

Don said...

Your blog was one of the first I followed when I started down the beekeeping path. I was building a Hardison hive and used your site for resources. I remember when you posted back in April 2013 that you were allergic to bee stings and was really bummed for you. You've had quite the journey and I can understand why you need to stop the VIT. Wishing you the best going forward and I appreciate the insight you provide.

Julie D said...

Thanks for sharing that information about VIT. Out-of-pocket medical care is outrageously expensive, so I can understand why you'd want to stop. Also, I'm outraged on your behalf by the answers (or lack thereof) you've gotten from your healthcare professionals. On the other hand, you've just become a "treatment-free beekeeper," which is sort of a change in the other direction from "treatment-free bees." ;-)

Please, do continue to carry your epi-pen and maybe even some liquid Benadryl. Wishing you lots of luck going forward!

HB said...

Such nice words, @Don. Thank you. I need to talk to Marty about how he "backs up a bee" — his words —to make it sting. Efficacy of in-the-field immunotherapy is anecdotal but, hey, I'll take it at this point. I'll let you know what he says.

HB said...

LOL, @Julie D LOL! My anaphylaxis kit includes liquid Benadryl plus Pepcid and/or Tagamet. The antacids block a different type of histamine than the Benadryl. In combination with the EpiPens, they can be life savers. My doctor's info is in my kit, too, and I have a MedicAlert bracelet. It needs some serious blinging out before it's wearable, though. U.G.L.Y.

Don said...

Before I started beekeeping, I had never been stung by a bee. It wasn't until after I got my bees that I decided to see if I was allergic or not (fortunately, not). The method I used was to put a piece of duct tape around my finger so the sticky part is pointing outward, and then snag a bee on the tape by dabbing it onto her back. Then I put her against my skin and she stung me (and rightfully so). I learned that from Miles McGaughey, president of the BCBA who told me to also say a prayer for her giving up her life.

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