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@jeindc

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 .

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Replies to "Smiling. Oh the amount of blood they have taken! My EB numbers were all over the..."

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.