New, Odd Symptom

Not sure if Lyme or co-infections can cause this, but new symptoms I have are hands that turn very red in afternoon and develop tiny bumps just behind a couple of finger nails. Also, some swelling right behind nails with it. Flares at a bout 3:00 each day and goes back down with a couple of hours.

Could be autoimmune related as I do have Sjogren's. But doctors have said there are no tests that indicate Lupus or RA. There are so many things now happening at once, I'm going to my primary care and push to have a large battery of tests run, if nothing else than to, at least, find out what it probably isn't. Piece mealing all this from different specialist to another different specialist is a waste of time.

All doctors kept telling me I didn't have Sjogren's because my tests were all sero-negative, but I pushed until they did a lip biopsy. Add that in with positive immunoblots in September for TBRF, Babesia ab\nd Bartonella, and you have a mess.

Bumps behind fingers often indciate arthritis, but it's strange how it happens during certain hours of the day.

I'm sorry to hear that you are going through this. I had this and totally understand how concerning it feels. This could be Lyme/co-infections, but this sounds like mast cell activation. Keep in mind accurate testing for MCAS is almost impossible, so it's always up-in-the-air when it comes to these kinds of things. I used to think I couldn't have it either, simply because I don't have the traditional breathing problems and such, but it seems as through the mast cells are being activated due to the infection. Generally mast cells will turn on TH2 and pump it up, so you will see that redness and inflammation from what seems like (insert any TH2-dominate autoimmune disease here). Although generally Sjogren's is generally a TH1-dominating disease,TH2 can still impact this. I also do understand what you mean with how medical professionals were trying to say it wasn't Sjogren's, but this is also because these tests can be whacky as well. You'd think in 2023 we'd have better, and we do, but we have to pay far too much for something that isn't "approved" across the board.

Anyways, I'd suggest at least attempting a low histamine diet and seeing if anything changes. I would also suggest only going by one diet as the ones all over the internet vary (I'm sure you know how that is with this Lyme info).

I hope you find relief soon!

Rash is quite common with this, and besides, we have to as: why do I even have autoimmune disease in the first place? Some people believe we are just born with these things, but it's not true! A lot of it can come later in life due to a variety of factors, and a lot of the time it can be treated easily or even cured. It's important to stay positive.

There are lots of diets and practitioners online that treat MCAS, but I use MastCell360. They have a huge list of lots of the intolerances on their website and they work with the most sensitive kinds of people. Regardless of where you are with your treatment, they seem to know their stuff. My doctor knows them, and they both have work with Neil Nathan as well. These are the kind of people that make you feel safe and that can help you. Even with Lyme, they help to find other things in the way. It's always worth a shot. If you don't have the cash to become a patient, their website is full of info. They also recognize that mold and infection are the biggest reasons why people can't get rid of lyme and other infections, and why MCAS comes on in the first place.

After diet, you could always try their list of supplements, but as I say to most everyone else, I don't think supplements or medications will do much if we don't straighten out our diets. Once you do that and start elimination, you might have some answers right there. It might now even be something that lasts, could simply be one or two things in your diet. Just remember that it's like a bucket. Strawberries may load up that histamine bucket, but doesn't mean you can't have a few every so often. Just be wary of the information out there, I see some people say chocolate and canned fish are okay, but we know those are absolutely huge no-nos with MCAS.

Forest - The doctor believes after having heart surgery, the Lyme and co-infections came back strong, which also led to chronic Epstein Barr. That led to Sjogrens, which it is known to do. Female to male ratio for Sjogrens is 9-1 female, and no one in my family has had an autoimmune disease. Since large fiber is also involved, it is believed the Sjogrens caused the neuropathy.

Add to that positive Lyme, Bart and Babesia tests by immnunoblot in September, 2022, and you have a puzzle that has pieces everywhere. There's also dizziness when I exercise, and the fatigue can be moderate or simply come on so fast I have to sleep immediately.

Your idea of diet is good, and I'm trying to find a dietician adept enough to be able to design one that helps autoimmune, won't make kidney disease worse and consider Lyme, and help with MCAS. That is the challenge.

Lynwood - The ENT who did my lip biopsy did a real good job with little scarring on the inside of lip. But you are right - there is always that possibility. But I had to know the answer as I really believed it was the only way to finally get a diagnosis. That was two years ago, and I still test negative for Sjogrens on blood tests specific for it.