Welcome -- you are in good company here -- many if not most or all of us have gone through similar events: ER visits, strange constellations of alarming symptoms, confused docs, and no comfortable answers.
Good for you that you keep asking questions!
I see you are in NJ, and the good news is that there are good Lyme specialists not far away -- and that is what I would do in your situation: take all your test results and consult a Lyme specialist. You will see the term LLMD, which is not a credential or qualification, just patient slang short for 'Lyme-literate MD', meaning a doc who understands Lyme as other docs do not. An LLMD can be of any discipline (internist, GP, immunologist, etc.), but seldom are found among the ranks of neurologists and rheumatologists, sadly enough.
Your Sjogren's may or may not be Lyme-related (if you have Lyme, of course), but Lyme is sneaky and manifests in many ways, differently in different people, depending on your personal body chemistry and immune system and on the co-infections the Lyme ticks carry about half the time. It's like taking everything out of the fridge and putting it in a big stew pot -- the result will depend on what was in the fridge in the first place and how it all interacts, making some a very 'interesting' dinner that can leave guests guessing what went into the soup. We each are a big stew pot, with our individual immune systems interacting with the various tickborne infections. No wonder the docs are confused.
Thus the reason to find a Lyme specialist. One of the common co-infections is bartonella, which I understand from others here can cause gastric distress similar to your description. I wasn't 'blessed' to get bartonella, but had babesiosis, similar to malaria. Each disease has its own symptoms and often needs separate treatment because the bacteria are not all susceptible to the same meds.
Thus the need for an LLMD, who understands all this. Some people try to oversee their own testing, picking and choosing what tests to get a doc to order, but I personally don't think that is a good idea -- it's like do-it-yourself heart surgery. A knowledgeable doc is critically important to effective diagnosis and treatment.
The main voluntary group for Lyme specialists is ILADS.org, and if you email your location to:
contact [at] ILADS [dot] org
they will send you back the names of some docs. I don't know how heavily the docs are vetted, but there is no 'test' to be called an LLMD, and I get the impression that some of the docs who consider themselves LLMDs are a bit behind the times or are frozen in their own preconceptions. Lyme is on the frontiers of medicine, so you have to keep your wits about you at all times and be ready to change docs if you're not persuaded by the current doc's approach.
Columbia U. Medical Center in NYC has a Lyme research group, and you could also try them for a referral. Research hospitals sometimes are not the best approach, imo, for patient care, because they are focussed on research, not always treatment, but Columbia has an excellent reputation generally.
You can also google/search for your nearest locations, like
or wherever you are and see what you pick up from others. Lyme is everywhere, and I'm constantly amazed how much online traffic there is about Lyme.
With your history of tick bites, and considering where you live (tho Lyme is everywhere), I would think you are on the right track to figuring out what's going on.
In the meantime, you might want to try magnesium (Mg) supplements for the muscle spasms etc. The heart is of course also a muscle, so it too can be affected by the Lyme bacteria using up Mg in its reproductive process. I take a brand that combines three kinds of Mg (citrate, orotate, aspartate) in one capsule, but I read that any type that ends in "-ate" is most absorbable.
Mg helped me a LOT after I ended up in the ER twice in a week with heart irregularities, which have never returned. I had a nasty doc sneer about the Mg I was taking, warning me that I could damage my kidneys, but I only take the recommended dose, and no problems: I read up on it and learned that too much Mg will result in diarrhea before it creates kidney damage, so that's a warning sign, but it's never happened to me. Just be sure to tell your docs going forward all the supps and vitamins you are taking so they can figured that in to your condition (as in: if you are taking Mg, it would tend to mask heart irregularities that otherwise would be a clue to Lyme or other diagnosis.)
Best advice: find an LLMD, and don't wait.
Let us know how you do, okay? We're always kicking around here --
Best wishes --
Jackie is right. I have bartonella and Lyme and your symptoms are classic, panic attacks, diahrhea all that.
I was misdiagnosed with lupus and taking steroids( what they give you for lupus) made me hospitalized on a respirator. You need an LLMD who can tell you exactly what you have. Lyme is great at looking like many other illnesses.
We are here for you. Keep us posted.
I have had dry mouth and dry eyes as part of my Lyme symptoms. I was seeing a pulmonologist for my chronic shortness of breath, which tests showed was not asthma, and she thought maybe I had Sjogren's. She ran a bunch of blood tests and referred me to a rheumatologist. When those tests were all normal ("not even borderline," she said), she told me to skip the rheumatologist. I ended up at a neuro next as my symptoms became more like MS. (About the same time, my significant GI issues started.)
I thought my dry mouth was from the inhaled steroids she gave me. It got better when I stopped the inhaler, but it would still come and go. Nearly a year later, I still get it on occasion, especially when I get worked up about something or I am talking a lot. I bought some Biotene for the times I seem to dry up completely.
I thought my dry eyes were from allergies, but they continued after my allergy season ended. Then, it got so bad, my eyes would be crusted over in the morning, like when I'd had pink eye in the past. No pink eye, just light sensitivity and a blurry spot on my right eye. The crusty eyes only lasted a couple weeks, but the blurry spot didn't improve until about 5-6 months into treatment.
I tested false negative on both a Lyme antibody blood screening test and a CSF test. Doctors who treat a lot of Lyme say that about half of people with Lyme test false negative on the CDC two tier testimg protocol. It has been a disaster for Lyme patients whose immune systems didn't get the memo on how they were supposed to behave.
I read an article by a journalist who was desperately sick for two years, going to prestigious doctors and research hospitals, unble to get a diagnosis. Along the way, she tested negative for Lyme 6 times. She eventually found a LLMD and got tested at IGeneX where she showed Lyme specific antibodies. She finally got treatment and got better. I tested diagnostically positive on the Western Blot at IGeneX.
I would strongly encourage you to either go through the full work up for Sjogren's (incl biopsy) and/or to get checked out by an LLMD and tested at IGeneX before taking any immune suppressing meds. You may indeed have Sjogren's, but with a history of tick bites and symptoms that can all be caused by Lyme and possible coinfections it is worth excluding one or the other.
Lyme is tricky and sneaky. It mimics a number of autoimmune disorders and causes mysterious symptoms that can wax and wane or come and go. What helped me was that while my symptoms mimiced MS, it just didn't quite fit. What hurt me was the prednisone I was prescribed twice and the inhaler with steroids. I really went downhill after that. If you do take any immune suppressing meds (such as prednisone), and you find yourself getting worse and/or developing new symptoms not explained by Sjogren's, that is a big red flag for Lyme.
If you are curious if a particular symptom or test result could be caused by Lyme, just google the symptom and Lyme and see what comes up. I did this with every new symptom I developed and sure enough, every one of them came up as Lyme related.
Keep us posted! We know what it is like to struggle to get a diagnosis. You want the RIGHT diagnosis so you can get the right treatment.
Jackie, Thank You for all the advice especially about ILADS. org . I will try to find an LLMD as soon as possible and will keep you posted if there are any new developements.
Thanks for your reply MoJoGal, I was a little confused when my Rheumy dx'd me Sjogren's because the panic attacks and diarrhea don't seem to go with that, I am definitely going to find a LLMD. I will keep you posted with any new developements.
Ricobard, Thank You so much for all your help! I am going to get the lip biopsy and find an LLMD, and stay away from steroids! I am on Plaquinel right now though, I hope they're not steroids, as far as I know it's just a med to slow down the progression. Not sure exactly, I think Plaquinel is an immune suppressor? I've been on it for 8 days now and my eyes and mouth seem dryer than when I started, but my doc said they wouldn't kick in for 3 months. I think I also feel more fatigued in the mornings since I started it. My Rheumy said come back in 3 months but I miss him already! I might have to give him a call!
I forgot to send my best wishes that you are all in good health today and everyday! Thanks again for the advice. XX
Glad we were able to help. btw, you can answer us all in one message if it's easier. We all see all the messages, even the ones addressed to just one other person here.
Keep us posted, and stay strong!
Plaquenil helps with connective tissue disorders. It makes the body more alkaline (ph level) and eases inflammation for autoimmune patients, esp. those with Lupus, Sjogren's, and other connective tissue disorders.
It is prescribed for some Lyme and Bartonella patients (both can go intracellular), usually along with Biaxin. When Plaquenil makes cells more alkaline, it is easier for Biaxin to get inside the cells where the bacteria hide.
I was on the plaqenil for my Bart's and that is a good one, I had to switch to levofloxin due to my ulcer. Each med will have a different affect on each person but ditto Jackie, no need to thank us individually, we all read the postings.