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Alpha-Gal Allergy (In need of support)


#1

Hi Guys,

My name is Allie and I am a sophomore in college. I am studying Mining Engineering. My lyme story is about the same, I was misdiagnosed for a long time (chronic hives, chronic fatigue, depression, etc.) The funny thing is is I had the bullseye rash all over my arm and no one noticed. I was actually treated for ringworm twice. Once I finally got diagnosed with Lyme I thought “thank god I have an answer and can move forward.” But I was so wrong.

I ended up getting something called an alpha-gal allergy from the tick. I cannot eat read meat at all and I get delayed reactions but they are extremely severe. I get hives on every inch of my body and my eyes, lips, and tongue swell up about 3-8 hours after I have eaten something. I have been in the ER (had to use my epi pen) about 4 times, and then I am put on a heart monitor and IV of steroids. I am a huge outdoors person, so my allergist thinks I was likely bitten by two ticks- which apparently makes the alpha-gal allergy worse. So now I have reactions to nearly everything created or having to do with other mammals (i.e. milk, eggs, gelatin etc.) I know this sounds extremely crazy- when I was told this I laughed, but it is something pretty interesting to learn about. Vanderbilt is doing a lot of research on it and has many articles if you are interested!

Anyways; This has been going on for quite some time. I feel that my friends and family are burnt out. Its hard to be positive and pick myself up at times because I keep having these crazy allergic reactions and I fear that I will die from them. When i express these things to my friends, boyfriend, and family, I just sometimes feel like a miserable down in the dumps person. I used to be so incredibly happy, and I was positive all the time, but this disease and this bug has absolutely ruined me. Today- I found out my childhood best friend took his own life, I did not even have time to react or feel to this because I accidentally ate something that caused me to swell up all over again. My life has become being drugged on benedryl for 70 percent of the time. I feel lost, and like I cant keep leaning on my friends and family for support. I need to be stronger emotionally in order to get through this, I was hoping coming here would help get some tips. Not only that but it would be wonderful to talk to people going through the same issues who understand how hard this is.

I am not suicidal or looking to harm myself, I am just hoping to find some support and hope on here, or maybe some friends.

Thank you all


#2

My 20 year old daughter is going through something similar. I have read tons on Mast Cell Activation Syndrome in the past 3 weeks…I haven’t read the alpha gal info although I have seen it mentioned. Either way, the symptoms of several of these diseases/syndromes are similar and the advice seems similar. The first thing my daughter’s allergist did was to tell her no more benedryl (at least for now). She has her on Allegra …once a day, but can take twice a day if severe. The Allegra doesn’t wipe you out like benedryl. Have you been diagnosed for leaky gut and checked for parasites…both lyme related issues? There is lots of info out there about healing leaky gut through diet and lifestyle. Having read many many stories these past 3 weeks I at least have some hope now that things can improve with my daughter if she follows the advice I have found. Also there is a gene mutation that causes problems with methelaytion (not positive about spelling). Lots of doctors will not know about this, but I had a friend who once tested for this and was able to get much better. I believe you are testing for MTHR, …I would have to go back and look up past info. to be sure of those letters. Perhaps that would help you. Anyway, there may be some hope out there. If you are in the Nashville area, it may be hard to get great help with lyme. I do have a friend who works for someone there who addresses lyme issues. A few years ago she told me that Vanderbilt (and I love Vanderbilt for many things) is somewhat in denial about chronic lyme…that may have changed but you may have to search around for a different dr. We no longer live in that area and have found great folks where we are. I wish you the best of luck. Know you are not the only one going through this. It is scary, but I’m finding some hope.


#3

Thank you so much for your reply!

How funny. I am 20 years old too! We currently live in south carolina (which is awful when it comes to lyme treatment it is almost unheard of down here)! but thankfully I go to college in Virginia- which is much more accepting and treating.

If your daughter is having delayed reactions I recommend looking more into the alpha gal allergy, I tested positive for it. I am doing a bit better now that I know what I can eat/ can’t eat!

Thank you for the advice about allegra, I used to take that for seasonal allergies and it gave me a lot of energy so I may try that again!

I was tested for co-infections and parasites just recently and have not gotten the results back yet!

If I can be of any help to you or your daughter in any way let me know!


#4

That is funny because we are in VA. Where do you go to school? My daughter is a student at University of Mary Washington although she has had to withdraw due to this. Since it just started, she was missing too many classes until we got some things under control. Hoping to go back either this summer or fall. Crappy thing to have, but you are right, VA is a good place to be if you have to have it. Thanks for the tip on alpha gal. I’ve ingested so much info lately, I just hadn’t clicked on the info on that. Guess I have my homework for this weekend. Best of luck!


#5

Oh my goodness! what a small world!

I am at Virginia Tech, I have missed a lot of classes too! I am trying my best to stay in this semester but if things keep getting worse I may have to withdraw too (It puts me a whole year behind in graduation so I am trying to hang in there)

If you guys are ever around tech feel free to reach out- would love to meet you all.

Best of luck to you and your daughter ! Hope she starts feeling better and getting more answers soon!


#6

Yep, this has put my daughter behind for graduation too, but we knew additional stress was not going to help anything. Not an easy decision and she is currently trying to figure out what to do with her time and being stuck at home with her old parents. :slight_smile: I’m not sure she is ready to be in touch with anyone, but perhaps some time soon you two can meet via the internet.


#7

hahah I agree! The stress of school does not help at all! I already promised myself if something else gets worse I am going to go home. My mom is pushing for it a little bit because she wants me to come home and hang out as well! she is an empty nester now that all her kids have gone to college.

But that sounds great! Wish you and her the best and if I can help in any way let me know.

Thanks again!


#8

Each post I read about those of you out there who are suffering with these terrible issues due to chronic Lyme/mast cell activation/chronic inflammatory response syndrome my heart breaks. My son who is 42 has been suffering for 10 + years now with all of it. He has not been able to get any real help in terms of feeling better, although we have seen many folks who’ve tried to help. Too much to list here, but I was interested in the comment that VA is a good place to be to be treated. We live in VA and would welcome any recommendations the two of you who are in VA have for medical/alternative folks who have helped you. Hope all of you are able to return to good health.


#9

Dr. Humera Malik in McLean. She runs a boutique type practice but she does take some insurance plans. She knows her stuff.