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Post by htmb on Oct 26, 2023 1:36:23 GMT
I slept in it last night, but ended up taking both Zyrtec and, later, two doses of Benadryl because the itching was so intense. And it’s systemic itching, not just on my back. Today the itching is less bothersome, but I’m still considering a dose of Benadryl at bedtime. So, yes, I can take antihistamines. They work better than alcohol, plus I barely drink any these days. Maybe one beer per month. Eating tofu and not consuming alcohol! My life has gone to sh##!
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Post by bixaorellana on Oct 26, 2023 1:37:28 GMT
Yeah. You're not getting elected wild & crazy party girl this month.
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Post by bjd on Oct 26, 2023 6:56:55 GMT
Htmb, I hope that these tests will help you eliminate most of those allergens from your daily life and make it easier to figure out what you can eat and do. Poor you, having to eat tofu. Can you at least cover it with some kind of sauce?
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Post by Kimby on Oct 26, 2023 15:58:10 GMT
This all sounds terribly tedious and life-limiting if you like to cook and eat. So sorry about this, and I hope you outgrow it (or whatever the proper term is) very soon.
Meanwhile, can you eat fish? And I suppose farmed fish are a no-no because the feed they are given might contain bonemeal?
So much to think about.
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Post by htmb on Oct 26, 2023 17:25:53 GMT
Bjd, good sauce is the key to cooking with tofu, for sure.
Kimby, it is what it is. I have never liked to cook, but most of my meals are now prepared by me from scratch. The issue has only become a problem when there’s a thought to eating out, or when going to a doctor’s appointment. I have my annual eye appointment scheduled for January, and am quite concerned. I’ve printed out a list of safe (mammal free) ingredients for the eye doctor, but will probably visit the office a couple weeks before my appointment to deliver the information and request the staff review possible medications that might be used on me to numb, dilate, etc.
Yes, I do eat seafood and I eat eggs, especially since my vitamin B12 levels tested as very low back in August. You’re right about bonemeal feed, etc. Many AG sufferers can only eat wild-caught fish, shrimp, etc. I have been buying organic eggs, but, so far, the farmed Norwegian salmon I’ve been buying from Whole Foods has not caused a reaction.
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Post by kerouac2 on Oct 26, 2023 17:40:24 GMT
I'm waiting with bated breath to find out of your back is covered with welts and boils.
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Post by htmb on Oct 26, 2023 19:29:54 GMT
It’s great to have gotten the itchy tape removed. I now have a brighter purple grid on my back. I’ve also been given a purple pen and told to take photos over the weekend and redraw the purple lines as necessary. I was wrong about the tape. The nurses load the antigens on the strips themselves, and specifically tailor to each patient. As best as I can tell from the two photos they game me, there are at least four little spots that are inflamed. The majority of the irritation and redness must be from the tape. Hopefully, that will begin to subside soon. The doctor will see me again next Tuesday, review the photos and evaluate any inflammation that might be present. Until then I must keep my back dry, so no showering or sweating. That’s the hardest part of this ordeal.
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Post by htmb on Oct 26, 2023 20:19:34 GMT
Just to clarify, the patch test I am currently undergoing is not to test for Alpha-gal. In fact, the doctor specifically left out any allergens known to contain a significant amount of mammal or mammal by-products. The only way to identify an Alpha-gal allergy is through a specific blood test, which I’ve already completed. The patch test will measure any other possible contact allergens.
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Post by mich64 on Oct 27, 2023 1:09:31 GMT
I am sure you are anxious to hear the results of the patch test, more information to figure out what to do next or what to avoid.
Glad to read that you can eat fish and eggs, that gives you additional natural protein and vitamins plus ways to vary your diet. This has to have been quite an adjustment to your daily life. You seem to have a very good attitude about the diagnosis although I imagine you still have some difficult days.
I hope you find things to amuse yourself with for the next five days that do not include sweating.
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Post by htmb on Nov 2, 2023 0:05:14 GMT
Well, I can now report, I had no reactions to the contact allergens placed on my back. Nada. Zip. A total waste of time. The only irritations on my skin were caused by the red ink and sticky tape used in the procedure.
I suppose, what this means, is that any allergic reactions I may be experiencing stems from the alpha-gal allergy and not from anything that might be topical. The alpha-gal allergy is internal and systemic. Certainly different from a topical, contact, type of allergy. This has been assumed by me all along, because I’ve never experienced episodes of contact dermatitis, if my memory is correct.
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Post by mich64 on Nov 2, 2023 0:38:14 GMT
I think that is a good result to know and now you can discount any of those concerns.
Have you noticed a trend in your information gathering as to which countries this condition in more prevalent in? Is this one tick the only one that causes AGS or do different countries have a different tick that causes AGS?
Are you keeping a chart or spreadsheet of things that causes you issues?
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Post by htmb on Nov 2, 2023 1:10:01 GMT
Thanks, Mich! I’m sure you’re correct.
Good questions, too! While I’m currently focusing on the US, I do know Alpha-gal has been reported in many other countries. However, it seems to be carried by different ticks from what we have here (ours is the Lone Star). Off the top of my head, I’m guessing Australia has the biggest number of known cases after the US, but I also remember seeing it reported in different European countries (UK, France for sure), as well. I’ve read reports from Canadians with Alpha-gal, but am not sure where they were when they were exposed to Alpha-gal carrying ticks. I’ve certainly been more careful about wandering in the woods and now know Star ticks can be active all year round. (Fortunately, they don’t seem to like the beach).
I have a running list of notes where I list specific information related to reactions. My notes have come in very handy when reporting to doctors, for sure. I also have a long list of new-to-me recipes to try, and have made many of them.
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Post by bjd on Nov 2, 2023 6:11:58 GMT
It's good that you have been able to narrow down the list of possible allergens. You still have to be careful but at least you know your symptoms won't be set off by anything from "outside".
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Post by mich64 on Nov 2, 2023 17:13:38 GMT
I am surprised that I have not heard of Alpha-gal before as I live in an area where ticks are always a concern so perhaps we do not have the tick that carries it in our region.
We have a lot of deer and they seem to carry a variety of ticks. Every spring there is quite of bit of information reminders on news programs, newspapers and local websites showing the different ticks and reminders to put your pant legs into your socks when hiking in the woods or long grass and to check yourself for ticks when you get home.
I wondered if you found different information from countries outside the U.S.?
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Post by htmb on Nov 2, 2023 18:50:43 GMT
Apparently, it’s very rare to find Alpha-gal and Lone Star ticks in Canda, but that’s predicted to change in the future. Here’s a link to a CBC news article: LINK
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Post by kerouac2 on Nov 2, 2023 20:08:50 GMT
If I am not mistaken, you can continue to wear wool or leather.
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Post by htmb on Nov 2, 2023 20:25:26 GMT
I hope so. Some people can’t. Now that it’s cooling off here I’ll give wool a try. I don’t have much, but I like wearing warm wool layers when I visit colder climates. I can’t imagine leather will be much of a problem for me. I rarely wear it and, when I do wear leather shoes or a belt, there’s always that extra layer of fabric.
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