I wonder how they can know that dehydration is not lupus related?
I was looking online, and saw something that said:The Most Important Signs Symptom of Lupus: The ultimate systemic lupus symptom is chronic dehydration. It is actually better described by chronic fluid and electrolyte imbalance, less than bodies needs. And that medical professionals often overlook this.
I am wondering, is this stuff about the Water Cures protocol BS, or is it realistic? I’m all for medicine, then again, if there’s a way to fix my body without it, I’m definitely interested in that too.
In fact, now that I look at it, there are all sorts of supposedly “natural cures” for Lupus. Is that even possible, are these scams, or just hopeful people looking for solutions? Or is some of this perhaps for people with Lupus like symptoms, that these methods can help? It seems rather impossible that someone could cure such a serious disease in these ways.
Yes, dehydration can be a lupus related symptom, but also the newer meds as your body adjust to them. Or weather, changes in sleep patterns, crappy diet, stress, and more.
Considering Romani’s severity, I wouldn’t want her to mess with alternative cures unless under her doc’s supervision. Remember the issue with St John’s Wort, a few years ago.
I do think, though, that I’d ask the doc about electrolyte drinks or Ensure. And hey, if you are having a dehy issue, by all means get the IV drips. It can be very serious. That’s why I was annoyed they didn’t tend to you at ER.
Dehydration can be related to kidney problems which are very common in Lupus patients. In fact, I believe kidney disease/failure is either the number 1 or number 2 cause of death among Lupus patients. I have no other signs or blood work pointing to kidney problems though.
The dehydration was caused by diarrhea which can be related to Lupus meds but I haven’t had any med changes in months. Yes, it’s possible to suddenly develop side effects after months of taking meds but neither my PCP nor Rheumatologist think it’s that. It’s much more likely that I just caught a bug that I could not fight off.
Non-bio meds can be helpful but there is no way to cure Lupus (that we know of yet). I already use marijuana to help control the pain and a few other “natural” things that help.
In a healthy individual, your body produces antibodies to fight off foreign invaders. That’s how your body heals itself. In Lupus patients (and others with autoimmune diseases), our bodies produce auto-nuclear antibodies. These antibodies attack healthy cells rather than bad cells. So my body attacks its own tissues and organs. In order to cure Lupus, we would have to stop our bodies from making these ANA cells and, as of now, there is no way to do that.
@lookingforward my PCP did mention those. I can’t stomach Ensure or Pedialite (sp?) so she told me to drink gatorade in moderation and try eating some foods that were high in salt to help with water retention.
I can’t belive how much you have gone through, Romani, that is just terrible. Thank God at least you have decent health insurance now, that’s the last thing you want to worry about!
Sending you warm thoughts. Wish I could bring you some of the really good home-made turkey broth that I have in the freezer. Hope you get over this quickly!
Sorry to hear of your health issues. It must be very tough on you.
I don’t know what it’s like in other areas, but the whole seeing-a-doctor thing is getting ridiculous around here. So many people I know get told they can’t be seen & they should go to an UC. I am fortunate to have a doctor that (so far) has been able to get me in same-day when necessary (at least with the PA or NP). H and S are not so lucky - their doctor’s appointment system is handled by the hospital system, and the stock response is to go to the hospital-affiliated urgent care … which ALWAYS has 2-3 hour waits in a room full of sick people (not to mention that the facilities are not exactly located nearby). S decided to go to a different UC, so we looked it up online through a website affiliated with our insurance that is supposed to tell us what things cost. Right. The supposedly-$90 office visit was actually $250 … new patient and “after hours” … after 5 is after hours for an UC? It’s all just ridiculous. Our insurance is very good, but we have high deductible health insurance - it’s not just copays for the first several thousand dollars … it’s the whole shebang … so we definitely see what things cost. A lot.
Romani, if there is one thing I have learned over the years, it’s that there are good doctors and there are not-so-good doctors. If one is not-so-good for YOU, don’t hesitate to find another. Best to you, and I hope you feel better soon.
Romani, some sports drinks have electrolytes like Gatorade but they are more palatable than Gatorade. Avoid any brightly colored ones because they are loaded with dyes. You can easily make your own by diluting sweetened lemonade and adding some salt to it. Or go fancier:
My urgent care always gets me in within a half hour. Normally I just go right back. It’s an independent clinic so I go there when I have something like strep or a sinus infection but not for this since I knew I’d need an IV (which they don’t do at the UC).
My PCP is usually really good at getting me in but she was off last week so she’s playing catch-up this week. Even still, like I said, she squeezed me in and has been in communication every day via either the phone or email. She’s in the IHA system and all of my specialists are in the U of M system. It would be easier to switch my PCP to a U of M one but I absolutely love this PCP so I refuse to leave.
My U of M doctors have been hit or miss and I’ve switched a few of them. I’m pretty comfortable with my team now. The problem with U of M specialists is that their waiting lists are ridiculous. Admittedly, I’ve never tried to get a same-day or next-day appointment but the regular appointments and follow-up schedules are generally several months out.
They make pedialyte Popsicles that are sometimes easier to tolerate than the actual drinks . I don’t know if you could tolerate those or not. I hope you feel better.
Welp… I hate insurance companies. I went to the urgent care today because my fever went up again and when I got there my insurance was listed as inactive. I just went to the hospital a few days ago and my insurance was fine. And of course BCBS doesn’t have a 24 hour number. I had to pay out of pocket and submit for reimbursement. It wasn’t bad but just frustrating.
The urgent care doc wants me to go to the ER but I don’t want to go and then have to fight with the insurance company at a later date.
The website is down which is why everything is off. I’m just so frustrated. It’s supposed to be back up at 8 PM (20 minutes from now).
I’m SO sorry, Romani! There SHOULD be a 24/7 number to clear things up, but of course there often isn’t.
When we were having issues with D’s coverage, we just explained that to the providers at Stanford and they were fine with if and said we’d be billed and it would be sorted out. We didn’t have to pay up front, tho they knew D’s insurance status was messed up.
Hang in there. Hopefully you can get comfortable until you can see one of your regular Med team tomorrow.
I have discovered that if I use an emoji from my keyboard everything after it evaporates into the ether. Please visualize a little picture of crossed fingers here…
Phew! Glad that glitch is now resolved. Sorry you will have to do reimbursement paperwork now too! Take care–hope ER can get to the bottom of this and promptly help you feel much better.
Romani - I don’t know if this will help you, but when I was at an urgent care clinic and they were recommending the ER, the nurse told me that I should consider the ER at a specialty hospital in addition to the ER of the main hospital. Apparently in my state, specialty hospitals have general ERs. The one that was closest was a transplant hospital, but their ER sees anyone. I actually ended up going to the main hospital’s ER because it was closer and not that busy (weekday early evening). But if I had to go to the ER on a weekend night, I would definitely consider the transplant hospital’s ER.
Thanks. I went to this ER because the University of Michigan system has all my records on file. All of my specialists are there and it’s their only ER. But that’s good to know if I ever have something like a broken bones where my detailed records won’t be that important
