Finally: Diagnosis. Oddly: symptoms have come in stages. Others?

Histamine Food Intolerance
After my bout with COVID in March 2020, I began to notice random itching, primarily on my scalp and upper back along with an itchy nose. I would also get sporadic small skin eruptions which resemble hives on my upper back and scalp. I could go for weeks without itching and then all of a sudden, it was back. I had already given up gluten in March 2021 so I knew that gluten was not the cause. From trial and error, I found it was related to foods which cause histamine release. Histamine release causes itching! I had never had this response before COVID or been “allergic” to any foods.

Although l tried to reintroduce the following foods, one at a time, each time that I did, the itching returned. I therefore don’t eat: Tomatoes or salsa, Peanuts, Pistachio Nuts, Spring Mix, or Yogurt. I also avoid chickpeas. I continue to use pea protein as my gluten free protein source. My two go-to pea protein foods are Vega Protein + Greens Vanilla and Veggipasta (Rotini). The Veggipasta is not available from my local grocery. It is a made in U.S.A. product, from AGT Foods and I get it from Amazon. It’s a little “Chewy” so after cooking (12 minutes) on sub-boil, I throw it in the food processor and “pulse it” into small pieces. My daily “pasta lunch” includes the cooked rotini, one ounce of organic pumpkin seeds, (turned to a powder in the coffee grinder), and organic riced broccoli cauliflower with a little olive oil.

Propolis is a bee product so I don't think it will hurt if it doesn't help. You can get it at a health food store or Amazon. It stings at first but really helps. It stains so be careful. I read about it somewhere so not a doctor's advice! Good luck!

Just curious, did your blood work show a reactivation for Epstein Barr virus?

i don’t have quite the same reactions as you. but in the ballpark.
i am taking antihistamines which seem to be working.
you might try topical .025% capsaicin. it helps me
both came from my LC dr.

I’m just on the verge, but have many issues with night sleeps and pulling dreams.

Thanks, elliep. I had used that for something else years ago and will ask one of my many docs if it's ok.

Smiling. Oh the amount of blood they have taken! My EB numbers were all over the place with each test. No one from the practice (in a university) has explained why that would be. I did lots of reading on my own and am guessing that it's likely that yes, they are reactivated and then "relax" (don't know another word for it!) and then re-activate again. I'm guessing the reactivation is when my mouth and more, my leg, are more actively "rashy". It's too much (time, energy and I'm waiting for Medicare to say too many blood tests) to keep getting tested and I'm not being told what to do. Do please tell me why you asked and what you may know. I keep seeking any information to be a more informed LC patient. THANK YOU, @diverdown1 .

I find this product helpful when I want to cheat a little when I’m concerned about histamine.

When I woke up in June of 2022 and felt so sick, out of nowhere, I went to my primary care doctor. They did routine blood work and she also ordered some extra panels. EB was reactivated. This did not seem to concern anyone. I had to look up the meaning of most of what I was seeing on these labs. Rheumatoid Arthritis was flagged, my cytokine number were high, my folate was off the charts, however my vitamin b12 was ok. The labs showed positive on the anti-nulcear antigen (ANA) which show up in autoimmune diseases. Normally, I found through reading that when a person's B12 is low, folate is high and vice-versa. I went back to the primary care doctor and asked questions. Everyone was baffled so.......then they sent me to an RA doctor. I knew that it was Long COVID even then. I did not get vaccinated and I did get COVID in both January and March of 2022, although I was not as sick as so many others. So, RA doctor runs more tests. She was expensive, I had no insurance but felt so terrible that I wanted answers. She told me I had RA by looking at my hands and feet. I told her I thought it was Long COVID...her response after rolling her eyes was "I don't treat Long COVID, I treat RA." I informed her that I had seen her roll her eyes. I did not go back but she did run tests for all autoimmune disorders (including RA, Lupus, Sjorgen's, Graves disease, HIV and others.) All these were negative, however the EB showed and also Parvo virus. (Crazy, but I did do dog rescue for several years and did have two rescued puppies that had parvo but that was 12 years ago.) Anyway, finally, I noticed that there were studies correlating Long COVID with the reactivation of EB. Now, with all this information, still no answers. I went to a Long COVID doctor at Vanderbilt. He wanted to put me on low dose Naltrexone (LDN). I did take LDN for about 6 months or so. It did seem to help a little. I do not know what other symptoms you have, there are so many. I know, for me, it is the fatigue, post exertion malaise, tinnitus, brain fog and I have experienced symptoms for so many of the autoimmune disorders. They come and go. I know that salt makes me feel bad, as well as sugar now. I drink only water due to any thing else causing symptoms of interstitial cystitis (yes, went to a urologist and all went ok). It is my belief that this virus causes our immune systems to fight our immune systems, in other words, our bodies are fighting themselves. Inflammation is a major issue, at least for me. It explains that 'poisoned' feeling upon awakening. I am now taking Cymbalta, Gabapentin and Vyvanse (for ADHD, but it helps with brain fog and fatigue.) I did not want to get on an antidepressant as I have taken them over the years, but I knew that waking up hopeless was not good. So, the Cymbalta seems to help. It is an SNRI so along with the serotonin and norepinephrine is increased (or so they think that is how these work). Did not mean to ramble, but wanted to share my what I know from my experiences so far. Going on 3 years now but I am grateful as it can be worse.

One more thing, I give myself vitamin B12 injections monthly. I also get up in the morning and drink 8-10 ounces of water with Emergen-C. I do not know if that helps, but I figure it can't hurt. I can tell a difference for a couple of days when I do the B12. It does seem to help with mood.