Dry mouth and bitter taste

I have not seen a rheumatologist. About the only specialist I have not seen.
Low B12 does a lot of damage, however I don’t think they really know how much you can bounce back. Keep up with your supplementation. My taste is not what it was, but it is pretty good now.
I have been tested for Sjogrens three times and always come up negative.
For now the things that are driving me crazy are tinnitus, hyperacusis, blurry vision and horrible constipation.
It seems there is no relief.

My condition continues to get worse in most ways.

My labs show negative for Sjogrens, but I’ve read there are false negatives. A lip biopsy is another test. I’ll probably get tested. I have dry eye, but not dry anywhere else. Skin and mouth have always been medium. When I see dentist I have lots of saliva. But, I have other symptoms and every doctor I have seen ask me if I’ve been tested for Sjogrens.

I think our symptoms are quite common.
I also have hyperacusis! I’ve it for several years.
I also have chronic constipation since 2022. Treated with daily miralax. I’m now convinced it’s the damage from B12 deficiency . Also, eye issues. Severe dry eye. I have gotten blurry vision from 2 different recent medications. Odd, imo.

Now, almost daily runny watery nose, phlegm in throat, congestion.
Last summer I had terrible skin rashes.

There has to be a way to figure this out! I hope you can find some answers. Please post if you will.

Yes, I have also read sometimes Sjogrens doesn’t show up on blood tests. I was somewhat encouraged that my dry mouth has improved, and figured maybe not Sjogrens for me. My eyes are dry and I lubricate all day, and usually once during the night. My skin has changed a lot too. It’s now dry, and thin and prone to bruising.

My low B12 was discovered ten years ago. I had taste issues and vision issues, as well as lots of joint pain. All resolved pretty well after a few months of supplementation.
After I had Covid everything came roaring back, plus more. I still supplement with B12 but it does not have the same result. I also had skin rash, loss of taste and smell but those things did clear.

I see my PCP next Monday and I’m going to ask about Linzess for my extreme constipation. I’ve had that develop since Covid too.
For me now it’s my eyes, ears and gut that keep me incapacitated.
So far, like you, no real answers.
I will definitely post anything new and any treatment that works for me.
I’ve been going to doctor after doctor for over two years and it is hard to be positive. I’m sure some of my damage will be permanent even though some symptoms did clear. I really doubt my hearing and vision will return. If tinnitus and hyperacusis would abate I’d have an easier time adjusting. That is what keeps me dizzy and distressed.
I’ll keep you updated.

I’ve tried Linzess and Lubiprostone. The latter worked for 2 days. The other not at all, but everyone is different. Good luck!

Maybe, there will be something that helps your symptoms. I know it’s discouraging. I see my therapist tomorrow! So glad! Most of my friends are dealing with personal situations right now like serious family member illness, deaths, moving, etc. I don’t feel right sharing my troubles right now. They are already overextended.

I know what you mean. I hate to keep telling people my health problems. Other than weight loss (30+ pounds) I really don’t look sick so I think some people don’t understand.

My constipation has gotten so bad that each movement feels like childbirth! I’m desperate to find something better than milk of magnesia and fleet enemas.
I read some good reviews for Linzess, but as you say, everybody is different. If I could get help with any of my major issues it would be so helpful.

Good luck to all of us suffering.

Hey, something else in common! I’ve lost 80 pounds since last July….on purpose. I provide updates with me posing at my gym. They love that. I had addressed my B12 before then and thought it was up, according to test, but neurologist says it wasn’t.

Have you tried Miralax? All my doctors recommended it. One cap full in water daily works for me. Not ideal, but it beats a thrombosed hemorrhoid, which is what I got before! Off the charts pain!

Good luck with everything.

My weight loss was not on purpose. I didn’t mind losing the first ten pounds, but now I feel like I’m underweight. At least I seem to have stabilized.
I just lost my appetite completely. Eating became a chore. I’m still not eating well, but doing better.

I will try Miralax.
Keep me updated with your progress.

According to Dr Jamie Koufman, you must elevate the upper portion of your body 45 degrees. There are also some exercises you can do that might strengthen your LES. I have found some on YouTube. One small study found that most all doing the Bridge Swallow had relief. Three in the group submitted to scoping after doing the exercises for (I can't remember) six weeks? One of the three showed restoration of their lazy LES. One personal experiment that was submitted as a self scientific journal showed a reverse of the Bridge Swallow was effective after months of small portion food swallowing by kneeling and then bending over with head in the downward position. This person submitted to the ph test to make sure his reflux was cured.

Newer to this aspect of long COVID discussion: when it began (early April 2023 after COVID end of March), it was less pronounced and I was more concerned about the "seen" issues (lymphedema, rashes) than my gut. In the last weeks, the increase in what seems to be phlegm but was coming after eating anything and now is just being produced from my stomach, has been miserable. Advised two of my docs. Neither had any idea. AND they are waiting for my in-person visit w/ the LC Clinic in 10 days.

That the symptoms are worsening and the gut pain is not exacerbated by food or other factors has made me more exhausted and even less able to work. My spouse is far more kind that I fear I'd be if the circumstances were reversed - and yes, I'm fortunate. The pain is so severe that even walking is more difficult.

I'm on pain management meds (for other medical issues) and they do help the gut stuff but am limited in what I can take.

Any new answers? I've not yet seen a gastro since the worst of this began this past week. OH and the burping! I did that little - well, in public - but now it just keeps coming. It would be amusing if it weren't awful.

Thanks to all those here sharing stories - and treatments that at least we can mention to our docs IF those docs are even reading about LC.

Do you still have your gallbladder?