Posts by Nicholas Davis4

If anyone is in need, I have some high-quality San Seni Una incontinence pads to give away. Just send me a private message and I'll pass along my phone number.

velvetranger12 said:Hi everyone,

I’m looking for some insight regarding her period. This cycle, she had a longer and heavier flow than usual. It typically lasts about five days, but this month it went for six and was a bit more intense. It wasn't an emergency situation—nothing extreme—just a little heavier than her norm. Her cycles are usually around 30 days, but today marks day 33 and she hasn't started yet. I'm wondering if that heavy period could be why her cycle is running late?

Just to provide some context, I usually track her fertile window based on cervical mucus, which we monitor closely. Her most fertile day should have been day 17, when the discharge was clearest and heaviest. We had unprotected intercourse (using the withdrawal method) on day 12, as well as on days 21 and 24. In my view, those are quite far from the fertile window since an egg only lives for about 24 hours. To round it out, let's say her fertile window was roughly days 15 through 19, though even then, the mucus wasn't very prominent; it was really only clear on day 17.

So, my question is: is it possible for her period to be delayed because of that heavier flow? Over the last week, she hasn't experienced much of the usual cramping before a period. She rarely feels significant pain, but over the weekend, she felt a sensation like something had leaked, though nothing actually did. From Saturday until yesterday, there was no discharge at all, but now she's seeing a very light, creamy white discharge.

Does anyone have experience with this? I'd appreciate it if we could keep the comments helpful and skip the jokes.

Essentially, what you're using isn't contraception, it's just hoping...
So, yes, pregnancy is definitely a possibility. Relying solely on tracking days is incredibly unreliable; I wouldn't bet on it myself. At that point, you're relying more on luck than logic.
Besides, reliable contraception is easily available to everyone these days, so I don't quite understand why people take these risks.

Additionally, a menstrual cycle can fluctuate for many different reasons.
But, surely she sees a doctor?!
It could be anything from a cyst to a fibroid... or it could be nothing at all. A period isn't a fixed rulebook; it's perfectly normal for one month to be five days and the next to be six.
The best move is to visit a gynecologist. And for the future, just pick up some condoms—getting a pack of 12 $8.00... will give you a lot more peace of mind.

And generally speaking, shouldn't she be seeing a doctor regularly anyway? Since she's sexually active, regular checkups are vital. It's the smart, responsible thing to do for her own health.

Listen, melloworca6, get to the ER right now!!!
Don't wait around to see how you feel; if you haven't left already, head straight to the emergency room this second.

Angela Ramos8 said:Hi, I'm new here. I've been dealing with dizziness and heart palpitations for about four months now. My thyroid tests came back normal, but sometimes I feel this intense heat rising from my chest and I'm constantly on edge. Please, I need some advice—this is driving me crazy.
🙂

What has your doctor told you so far? Have you seen a specialist yet? Did you get any testing done—just basic stuff like blood pressure, an EKG, or blood work?
Have you noticed if there's a pattern to when it happens, like during specific activities or certain body positions?

You got it, Doc!
It could be neuropathy, especially since she’s feeling that tingling sensation. But you definitely need to check in with a specialist.

Just a quick reminder:
If anyone is planning to start therapy with Zomet (for instance, treating prostate cancer), you absolutely must have your creatinine clearance checked beforehand!
http://www.ema.europa.eu/docs/hr_HR/...C500051730.pdf

George Sanchez59 said:You know, online, using all caps is basically the digital equivalent of shouting, which just isn't polite. It’s right there in the community guidelines, too—we really shouldn't be using them here on the forum. When a thread title is written cleanly and follows standard grammar, it gives the topic a certain level of prestige and importance. 😉

Alright, let me stop lecturing everyone for a moment and get back to the actual topic. While the intention behind this was clearly good, there's still a catch...
It’s funny how things work—you can find a ward or a hospital where one patient will have nothing but glowing praise for the staff, while another patient in that exact same unit will claim they had the absolute worst experience imaginable.
The truth usually lies somewhere in the middle. Speaking from personal experience, I’ve had both my fair share of great days and frustrating ones working within the same department. To wrap things up—instead of judging specific hospital wards or facilities, we really ought to be looking at the leadership that built them. But hey, that's a conversation for another day. 😉 (what follows).

I partially agree with you; honestly, I didn't start this thread just because of my own experience—which has been repeating itself for the last few years—but rather to show that... No. I’ll keep this personal. If several people are running into the same issue, it’s a clear sign that something isn't quite right with the system.
When it comes to that small town in the Midwest, my take on this can really only come from the rheumatology patients who have been seeking treatment there for years; some of them are newer, too (you can probably tell how many rheumatology cases you have on your ward just by taking a quick look around).
That department actually operated for twenty years. Everything is perfectly organized..
There are still quite a few exceptional doctors out there.
In my opinion, they were quite organized, though I suspect they might have cut some corners to get things done.
It’s not that they’re trying to cut corners on your care, but rather that you never truly know which doctor is handling your case or who is actually managing your treatment. Without that steady hand, how can you ever really have continuity in your medical care?

Departmental organization isn't always about the budget, whether you're looking at the federal government or Medicare. Sometimes, it really just comes down to the director of the agency, or simply a lack of coordination among the leadership team.
I’d prefer to have a doctor follow my case only when it’s absolutely necessary—like if I fall ill or they happen to be attending a medical symposium in Canada. It should really be the exception to the rule, rather than the standard practice.
It feels like every time I ask a question, the response is just, "Go talk to your doctor, I'm only a substitute..." If that’s the case, I’ll be spending my entire check-up every few years just hearing the same thing!

rapidgardener3 said:Rockefeller's Specialty Lung Hospital.

I want to take a moment to give a shout-out to this facility. The staff is incredibly kind and highly skilled; you truly feel like you’re in good hands throughout the entire process. Even though I lost an entire day because of the circumstances, I don't blame the team at all. I particularly remember Dr. Wolf—or maybe it was Donald Trump, I can't quite recall the name—but he was fantastic. He’s old school, easily one of the most knowledgeable and professional doctors I’ve ever encountered.

I couldn't agree more!
[/I]
I unfortunately crossed paths with Rockefeller's during some of my most difficult moments in life, and they were truly wonderful.
It’s truly heartbreaking to see how little attention they get. They work under such grueling conditions, handling the most difficult cases, yet the nurses there really push themselves harder than almost anyone else in the medical field.
I honestly believe that hospital deserves some serious attention from the Department of Health, Medicare, and both the local and state governments. It’s frankly embarrassing how much they've been neglected.

melloworca6 said:I went ahead and adjusted the title to lowercase and added a disclaimer, since I already have a feeling where this discussion is headed.

I'm not sure about that. Sometimes it isn't just a matter of subjective perception, especially when the same issue keeps happening and is confirmed by multiple different people. If they can't grasp that, then hospital work probably isn't the right career path for them.

When it comes to the infrastructure side of things, I really have to tip my hat to the staff. Everyone is working under incredibly tough conditions, they're chronically understaffed, and the facilities are constantly overwhelmed with patients. While the building itself could use some serious upgrades, the most important part—the people—are absolutely wonderful and kind. I just hope they don't end up leaving the US because they aren't being valued or respected enough. Some of us truly notice how hard they work and the conditions they endure; when a nurse walks into your room singing happily after working her second consecutive 12-hour night shift, you know she genuinely loves what she does. 👍

I get what you mean.

George Sanchez59 said:Leeloo, we’ve already touched on those bad actors and those angry salon owners before... 🙂
Some people just can't be helped, and honestly, I'm starting to worry that everyone else might end up fleeing the States because we're all in the same boat here.

If this discussion heads in the direction everyone was originally aiming for—like a few members here have already started steering it—then I say bring it on! To the person who kicked this off, please don't take it personally; it's just my nature to play devil's advocate. 😬

No reason to be upset at all!😉)

My goal was actually exactly that: I wanted to hear about everyone else's experiences. I’m certainly not the type of person who expects others to jump through hoops or deal with unnecessary hardships just to satisfy my whims.
If someone tells me it’s great, then I’m inclined to agree.
And who exactly is the bad guy here? In any situation, I’d be happy to label someone as "bad," but only if I could provide the full context. It’s like trying to judge a movie by watching just a single scene; you need the whole story to get it right. Sure, it's easy to stay quiet during an argument or pretend we're more saintly than we actually are, but that wasn't really my point in this discussion.
He isn't necessarily a bad person just because he gave me a dirty look. It might have just been a case of him turning down an offer.
I don't need any sentimentality; just give me professionalism.

George Sanchez59 said:Does using Caps Lock in a headline really add a sense of importance to the topic? 🤷

Well, that wasn't intentional... I accidentally hit the button before I even realized what happened. Now there's nothing to do but deal with it—I suppose it’ll just be a bit larger than expected.

mellowskipper3 said:Sophie7 It feels just like I'm reading my own medical intake forms. 🙂
I was hospitalized at Oakland Hospital about two weeks ago, and I ended up being the only patient in my wing dealing with a rheumatic condition. Everyone else seemed to be there for things like pneumonia—which I actually managed to catch while I was there—gallstones, and other issues that had nothing to do with what the Rheumatology Department actually handles. To make matters worse, my appointment had been scheduled three months in advance, only for me to arrive and find out my doctor was on vacation for the exact duration of my stay. I spent my time chatting with the residents instead, but honestly, it was a bit of a revolving door; every day it was a different person who wouldn't listen and kept ordering useless tests that had absolutely nothing to do with why I was admitted in the first place.🙄
I have nothing but wonderful things to say about the nurses; they truly blew me away with their care.
Over at the hospital, specifically in the Rheumatology and Immunology departments, patients are being lined up in the hallways. In the actual rooms, men and women are being bunked together, which looks like an even worse situation. This is essentially how things were when I was admitted last year. If everything remains this disorganized, I really can't imagine what the future holds for us rheumatology patients next year.

I was actually considering switching my care over to the main hospital, but I ran into someone at the Oakland clinic who had recently moved from the specialized center to the local one just because the service there is such a disaster.
I used to think I was just being oversensitive, but you really can’t compare the perspective of someone visiting once to a regular patient who relies on that care long-term. I know they can be wonderful with newcomers, but even we get treated poorly sometimes—and now, with the system falling apart like this, it's getting worse. Honestly, I have no idea what the future holds for Rheumatology here in America; it feels like things are heading in a really bad direction.

We usually spend our time rating doctors, but for a change, we can use this space to share our experiences within specific hospitals...
RHEUMATOLOGY AT OAKLAND HOSPITAL:
What used to be a specialized department focused on treating rheumatology patients has morphed into something resembling an absurd emergency room service. They even have a schedule posted on the wall dictating how many beds they must reserve daily for ER admissions—essentially earmarking spots for whoever rolls in through the emergency door. This quota sits at 14 beds a week. For a unit with 30 beds, isn't it strange that perhaps only two or three actual rheumatology and immunology patients are being treated there? Oakland Hospital truly has no justification for maintaining a Rheumatology Department anymore! The unit should be closed because it no longer serves its purpose; it’s no longer dedicated to patients suffering from rheumatological, immunological, or allergic diseases. Both Medicare and the Department should step in to conduct an audit and see if this department should simply be dissolved instead of pretending it still functions as a rheumatology unit. If they looked at the data from, say, 2014, and checked the percentage of rheumatology patients actually hospitalized in the Rheumatology Department... it would be clear that the unit needs to be shut down.
Secondly, they used to have wonderful doctors. Most of them have either passed away or retired. Now, while there are some good doctors left, the department feels like it's being run by a revolving door of interns and residents. You never really know who your doctor is, who is actually treating you, or where you belong. As a patient, I don't want my physician to just pass me in the hallway during discharge, shouting that they'll "write everything down in the papers" while I'm walking past. During my stay, I dealt with three different doctors, repeating my entire history to every single one, yet nobody seemed to listen. One resident even told me she didn't care about my medical history or why I was admitted—she only cared about what was happening today. And this, of course, was after I had waited months just to be seen! To have someone act so arrogant when you finally get care is infuriating, especially since she mentioned she'll be a rheumatologist once she finishes her residency.
The nurses on the floor are fine. They are well-organized and honestly quite commendable (except for one grumpy, rude individual out of maybe ten, but the rest were great).
The doctors? It's hit or miss. For those of us who stayed with the "old guard," no one bothered to ask which physician we wanted to see moving forward; they just reassigned us to whoever was available, which isn't right.
On top of that, in the outpatient clinic, doctors seem to swap constantly. Whether it's a group of interns or residents, I don't care—the fact remains that I am telling my story to someone I will likely never see again, only for "my" doctor to glance at the results for a split second before "blessing" them without even seeing me. It’s terrible! How can anyone build trust this way? If this is a cost-cutting measure, they should just be honest and tell us they don't have the budget to maintain a consistent patient-doctor relationship, or that they simply don't want us as patients so we can go elsewhere. That would solve the problem.


Since I know someone will eventually try to turn this thread into a way to settle personal scores with specific doctors, nurses, or staff, a little warning for everyone: this thread is not for insults, harassment, or attacking people in hospitals, departments, or support staff. Praise is welcome, and criticism is fine, but there will be no verbal abuse. Any post like that will be deleted and sanctioned.

Let's treat this topic as constructive criticism regarding what needs to improve in the system and what we should strive for, rather than a place to vent vitriol. We've had similar threads before that always end up being locked because they devolve into personal attacks against doctors and nurses. If you have legal grievances, take them to court, not a forum.

melloworca6

Well, here I am starting a new thread... I'm looking for some insight on the Whipple procedure. If anyone has gone through this or knows someone who has, I’d love to hear about your experience.

Regarding the whole CSID/MGAM thing, here is why it crossed my mind:
http://www.csidinfo.com/symptoms.htm
http://www.congenitaldiarrhealdisord...esto_03_c.aspx
Some sources mention nausea and vomiting, while others don't, but they list a massive range of symptoms—and it’s unlikely anyone experiences them all at once.
That's why I started wondering if I might have a starch intolerance, essentially a deficiency in one of those specific enzymes.
Should I perhaps reach out to Dr. Canani?
The worst that could happen is I just don't contact him. 🤔
My gut feeling is that my issue isn't with sucrose or sugars, but rather with how I break down starch, specifically involving maltase. For instance, I had just a small serving of non-alcoholic beer about a week ago and ended up vomiting; I felt terrible for three days straight, even though nobody else was affected. It's strange to think a single small serving could do that. I don't usually drink, but even that tiny amount completely sidelined me. And it wasn't even alcoholic! I guess I wouldn't make much of a drinker anyway. 🤣

Hey everyone!
I have an upcoming EGD—esophagogastroduodenoscopy—and a colonoscopy scheduled, both involving multiple biopsies. Does anyone have experience with a specialist who is particularly skilled and gentle? I'm based in Chicago, but I wouldn't mind traveling out toward Naperville or similar areas if it means finding someone truly precise.

dustysurfer23 said:I assume these things happen everywhere—certainly at Mercury, and likely at Rebro too. Since they were already questioning amino acids or even starch like you described, if we accept that life synthesized all of those, it seems odd that this wouldn't be the case as well, but I suppose it comes down to how one evaluates the data.

Regarding:

"It involves a deficiency in sucrase-isomaltase and a lack of maltase."

And regarding doing those tests abroad (if I understood correctly), the real question is whether that’s truly the root cause—are there adequate enzyme replacements available? If there are, try searching online and maybe order some just to see if it helps, provided it isn't too expensive.

If nothing is available for purchase and the treatment is simply avoiding certain foods, then paying for international testing out of pocket doesn't really get you much closer to a solution.

It's tough...

I'm not sure either, but you can't force them if they aren't willing...

And I don't have the funds to pay for this myself, especially since it requires an EGd with a biopsy... though genetic testing is a simple, fast, and painless alternative. I thought perhaps they might cover that, and once those results come back, we could look into the more invasive biopsies.
Because when I saw the gastroenterologist, he wasn't exactly friendly... he kept pushing the idea of Whippleov disease
http://www.msd-manuals.com...ppleov-disease
or maybe it's celiac disease...
Since CSID and MG are quite rare, it feels more logical to investigate those first. For CSID, you would typically expect symptoms since birth, whereas celiac can manifest differently. And isn't the whole point that patients aren't all identical? It's not like I've never had diarrhea... based on enzyme research, I assumed I might have had some enzymatic activity that gradually declined over the years, or perhaps it was always faulty. It works similarly with biotinidase and other enzymes, so this could be the same pattern...
Basically, an EGd and colonoscopy with multiple biopsies to check for celiac or Whippleov... I asked if we could take a sample for CSID/MGAM during the EGd at the same time, but he won't allow it. He claims because it's so rare, maybe we can look into it in the future, but for now, we stick to this...
Like you said, it's tough...

dustysurfer23 said:Did you get a stool test for starch, fats, or muscle fibers?

I haven't; I just did amino acids, ammonia, and lactate. It’s like they always assume it's some metabolic issue related to processing animal proteins, so they cut out meat and fish for me... but I honestly feel worse and worse. I had an EGd with a biopsy, but that was just for Helycobactera, which came back positive—though I had the exact same symptoms when it wasn't there and when it's gone.

Next week I'm seeing a specialist at Mayo Clinic, but this time I'm going in with specific questions about all of this.

The hardest part is when they tell you they don't know what's wrong and can't refer you anywhere... while you're just sitting there feeling terrible. You keep visiting doctor after doctor, hoping that this time, finally, you'll find a solution.

Are these tests available here? I assume they'd do them at a major hospital like Mayo.
I'm planning to push my doctor to order them; it feels like I haven't really covered much ground yet, since I haven't done anything beyond those amino acid tests.
I don't understand why they haven't suggested the specific tests you mentioned a long time ago...

Sucrase-Isomaltase Deficiency & CSID & Maltase-Glucoamylase Deficiency/MGAM

For years, I’ve been dealing with a relentless cycle of nausea, vomiting, stomach pain, and eventually, chronic diarrhea. It was an exhausting journey through a maze of potential diagnoses, misdiagnoses, dismissive doctors, and disorganized medical records. After spending countless hours—days, weeks, even months—scouring the internet and medical literature, I hit a wall. The specialists essentially washed their hands of me, telling me they couldn't help and that I'd have to figure out my own way to live while feeling sick every single day. They basically told me if I wanted real answers, I'd have to look for specialized care abroad. When I asked if they could at least point me toward a reputable research center or a clinic that handles complex metabolic issues, they just shrugged and said they didn't know anything about such facilities. Up until that point, we suspected some kind of food reaction, but here in the States, I couldn't get any traction because the doctors decided it wasn't worth the effort. It felt like I was too much of a burden or simply too expensive to investigate further. I wish I had the deep pockets or the high-level connections needed to bypass that apathy. Instead, I was left alone with the same debilitating symptoms I've carried since childhood. One top specialist in this field told me straight to my face that he had no idea how to help, no idea where to refer me, and suggested there was no point in investigating further. Even his highly esteemed colleague echoed the sentiment, telling me to find my own solutions since we had "exhausted all diagnostic possibilities in the US." Honestly, I regret not having a hidden recorder running to capture those conversations for posterity.
It’s incredibly heavy to carry, knowing that for 35 years, I've lived on the edge of vomiting almost daily. Lately, whenever I consume wheat, it triggers bouts of diarrhea.
To be clear, I don't have Celiac disease. I've been fully tested—HLA typing, tTG, and anti-endomysium antibodies—and everything came back negative. In fact, I react just as strongly to wheat products that are certified gluten-free. The issue clearly isn't the gluten itself.

In short, the doctors gave me nothing but a shrug.

After navigating a period of depression, I realized I had to become my own researcher.

Through a massive amount of trial and error, I finally started connecting the dots using online communities and scientific data...

Here is a specific clue: during the periods immediately preceding or following my nausea, my left fingers take on a distinct garlic scent. There isn't a single clove of garlic in my house, nor do I eat it, as the smell itself makes me nauseous. So, the suggestion that I "must have touched some garlic" doesn't hold water.

My "top expert" actually dismissed this as an "olfactory hallucination," implying I was imagining the smell. But that's simply not true; everyone around me notices it. Whether it's colleagues at work, friends, or family, they all smell it when I hold my hand near them. A few of them are even in the medical profession, and I highly doubt I have the power to induce collective hallucinations. They tried to brush me off at first, but once they smelled it for themselves, they realized I wasn't making it up.

While browsing forums—where information on this is unfortunately scarce—I found others experiencing similar patterns. Interestingly, some noted that the smell of garlic actually triggers their nausea, though none of them had yet made the connection that the garlic scent and the nausea might be two sides of the same coin.
Some people tried cutting out gluten entirely, following the common narrative about Celiac or non-Celiac gluten sensitivity, though most of them don't actually have Celiac.
Once I cut out all wheat (both standard and gluten-free), my symptoms improved significantly, the garlic scent nearly vanished, and the diarrhea stopped completely. That was my proof: this isn't about gluten.

I’ve been using Ensure Plus as a supplement, which contains cornstarch. I think that might be the key, because... honestly, I was starting to feel worse. I just got so burnt out from trying to balance my meals; it was becoming overwhelming. Even after eating plenty of fruits, veggies, fish, and meat, I still felt hungry because I wasn't getting enough carbohydrates to stay full. I tried rice, some potatoes, and even cornmeal. Interestingly, I noticed that boiled potatoes tend to upset my stomach, whereas roasted ones are much easier to handle—same goes for the cornmeal. It was hard to tell if they were actually the culprits, though. Some days I felt fine, and other days I felt terrible. I also ate buckwheat and barley, and those didn't seem to cause any issues.
Cornflakes definitely make me feel sick. On the other hand, I’ve never had any trouble with dairy products.

Lately, for the past two weeks, my diet has mostly consisted of potatoes, cornmeal, and some buckwheat. Since I was feeling so nauseous, I haven't been eating much solid food, so I've been relying on Ensure.

Then, in a moment of desperation, I started typing every possible combination of symptoms into a search engine, and I stumbled upon an article that made me think: this could be it!

It turns out it could be a deficiency in sucrase-isomaltase and maltase enzymes.

Usually, the most common symptoms are bloating, abdominal pain, and diarrhea, but some people experience nausea or vomiting... essentially, general gastrointestinal distress.

It involves a lack of, or reduced activity in, certain enzymes in the gut that are responsible for breaking down the sugars and starches found in dietary carbohydrates.

And it isn't true that you can't get these tests done here in the US... Mayo Clinic does testing for that specific enzyme...

I'm currently waiting for an appointment with a new gastroenterologist. My previous doctor actually referred me to this one, admitting he wasn't sure what was going on but thought this specialist might have more insight. He did suggest invasive procedures like endoscopies and biopsies since he couldn't pinpoint the cause, but to me, undergoing all those procedures without specifically testing for the relevant enzyme feels counterproductive. Given that he admitted he was stumped, I decided to pass for now—maybe someday. It turned out to be a good call, because his approach would have focused on what he knows, which doesn't include the very thing I suspected just a few days ago: CSID and a maltase-glucoamylase (MG) deficiency.

Yesterday, I finished off some vegetable risotto; since I was already feeling unwell, I just ate it anyway. Since last night, I've cut out all starchy foods entirely. I've completely removed grains, pseudo-grains, potatoes, rice, beans, and peas from my diet for the time being. I'll stick to meat, fish, vegetables, and fruit (though I have to watch out for certain fruits that are high in starch and maltose).

For breakfast today, I had fruit yogurt and an orange, and for lunch, I had chicken breast and cooked spinach. I don't expect to feel better immediately; I know from experience that it takes time for those problematic compounds to clear out of your system. Oh, and I’ve noticed my urine has a strange smell—kind of like sulfur or a savory seasoning blend. I know it sounds a bit dramatic, but it's real.
It's hard to be certain, but it is a significant issue.

So, if you are experiencing anything similar, or if you know someone who deals with these same symptoms, please reach out! You can send me a private message for a more personal chat, or post publicly on the forum so others facing the same struggle know they aren't alone or losing their minds.

I have about twenty boxes of strawberry Ensure Plus left. They’re good for another two months, so if anyone could use them, I’m happy to give them away for free—just send me a private message. (Washington, D.C.)

Bradley Martinez3 said:Do you guys know anyone who actually went through it and just moved on—like, it disappeared and never came back?

Sorry, I only know people dealing with rheumatoid arthritis; however, medical literature does mention reactive arthritis as a transient phase.
You might have better luck finding someone with reactive cases on an RA-specific forum.

wiredotter12 said:Before my urethral swab came back positive for Klebsiella pneumoniae and Enterococcus faecalis, my internist gave me this diagnosis:

• Arthritis reactive in remission &
• Polyarthralgiae

I'm not sure if that's still the official status, 🤷but I finished my 10-day course of Ciprofloxacin 500mg and I'm currently just taking one 500mg tablet of Salazopyrin daily.

The swelling in my knees and joints is down about 30-40%. It hasn't vanished, though. I'll need another swab to confirm if the Ciprofloxacin actually killed off the bacteria.

So far, my blood work, urine tests, CRP, and stool samples have all come back normal.
Do you have any suggestions for further testing? Maybe seeing an immunologist or an infectious disease specialist?

wiredotter12 said:Blood work, urine tests, CRP, and sedimentation levels all come back normal... yet my fingers, hands, and feet ache throughout the day, especially my knees, which feel incredibly swollen, along with my elbows, shoulders, upper arm muscles, and ankles...

A urethral swab came back positive for Klebsiella and Enterococcus faecalis...
For the next 10 days, I’m on Ciprofloxacin 2 x 500 mg, followed by one 500 mg tablet of Salazopyrin daily for the next 3-4 months.

Has anyone dealt with similar issues or heard any firsthand accounts?
Feel free to DM me. Thanks.

If you're dealing with reactive arthritis, it's actually a pretty good scenario because it can resolve completely!
http://www.arthritisresearchuk.org/a...arthritis.aspx
http://www.arthritisresearchuk.org/a...arthritis.aspx

Moving forward, to rule out RA (or something similar like other rheumatic diseases), you really need to check for antibodies. Usually, doctors run a whole panel of antibodies to rule out other autoimmune conditions like lupus or polymyositis.
CRP and sedimentation levels typically spike during acute phases of the illness—in the case of RA—so they might return to normal once those phases pass.
Regarding HLA B27, there are various forms—like seronegative arthritis where you don't test positive for rheumatoid factor... but there are also cross-reactions, so you might not have B27, but instead something like HLA B7, which is how it worked for me.
Rheumatological and autoimmune cases usually involve a series of antibody tests. If these pains persist for a long time, it might be worth scheduling an appointment with a rheumatologist.
(Like at Mayo Clinic or Johns Hopkins
http://www.mayoclinic.org/departments-centers/rheumatology/overview/mc/, I would personally see someone like Dr. Mitrovic or Dr. Chuck...
http://www.mayoclinic.org/departments-centers/rheumatology/, perhaps Dr. Mayer)
If things don't improve quickly, I'd suspect it isn't just reactive... and the longer you wait, the worse it could get. It might settle down temporarily, but it will likely just wait for another flare-up.
Salazopyrin is used for RA, but it isn't particularly effective for it; while it might help some, I haven't heard of anyone finding significant relief from it for that specific condition.
)

wiredotter12 said:Update:
A urethral swab from October 14, 2014, showed Enterococcus faecalis is still present, though the Klebsiella pneumonia was cleared by two boxes of Ciprofloxacin 500mg. Apparently, Enterococcus faecalis is linked to septic arthritis (http://www.thearthritiscenter.com/co...se-information).

My internist/pharmacist wants me to take Ninur (nitrofurantoin) 50mg capsules for the next 7 days (4 x 2 capsules)—that is two full boxes of 30. It feels like an aggressive "all or nothing" dose. I have to take the Ninur with food or milk to help prevent nausea. I am also taking Linex 2 x daily.

I forgot to mention to the doctor that I have these small pockets or swellings on my knees, ankles, left elbow, and potentially my hand joints. I can't tell if it's fluid buildup or synovial fluid. How do you detect what that actually is, and how do you get rid of it?

My mother deals with rheumatoid arthritis (RA) and used to have extremely swollen knees. Now, since I have lupus (SLE), I'm experiencing swelling in one knee, but her rheumatologist noted that an ultrasound showed nothing significant other than some fatty tissue deposits (like little 😉 pads)... you really need to get a joint ultrasound to see what's going on underneath the surface.

Regarding RY, there are different diagnostic criteria compared to reactive arthritis, but just because you don't meet every single requirement right this second doesn't mean nothing is happening. For instance, morning stiffness is a key indicator for RA, but it isn't always present immediately; sometimes it only shows up after a few years.
If I recall correctly, you mentioned feeling muscle weakness earlier. Since joint pain, muscle aches, and weakness are common threads across most autoimmune rheumatic diseases—and yours has been persisting for quite a while—it’s definitely time to see a specialist. You'll need a more comprehensive workup than what a local clinic lab typically provides. It might be worth re-checking your ESR and CRP, testing for rheumatoid factor, Waller-Rose, CK, and LDH, and perhaps looking into antibodies like ANA, ENA-profile, or anti-ds-DNA. You won't necessarily need every single test, but a good rheumatologist will likely suggest them.
Good luck, and please let me know what you find out...

( And sorry if I sounded a bit intense! )

Michelle Sullivan87 said:I couldn't find an existing thread that fit my specific concerns, so I decided to start a new one here. If the moderators feel this belongs elsewhere, please feel free to move it! 🙂 )

So, here’s the situation: I've been feeling pretty wiped out lately, dealing with constant fatigue and a total lack of energy. Every so often, I get these strange sensations like flushing in my mouth and limbs, and my legs tend to go numb quite frequently. I am currently taking a few different medications—specifically antidepressants and antipsychotics—but none of these symptoms were listed as side effects for any of them.
I’ve been dealing with some bloating lately. I'm currently on a diet, so I assume it might be linked to my weight fluctuations, but I'm wondering why this sudden onset happened so abruptly. It feels a bit like a sudden storm rolling in when the sky was perfectly clear.
I’ve been dealing with frequent dizzy spells lately—for instance, whenever I stand up from my desk, everything goes dark for a second, and I have to grab onto something just to stay upright.
I've also been noticing a constant, slight racing sensation in my heart.
I'm not sure if there's a connection, but I recently had some blood work done to check my liver enzymes, and they were slightly elevated. My tests for Hepatitis B and C came back negative, and an abdominal ultrasound showed everything was fine, aside from a few minor lesions on my liver. According to my doctor, those are just a side effect of the medications I've been taking.

Does anyone have any advice on what this might be? I’m definitely planning to see my doctor, but I was curious if anyone here has dealt with something similar. What kind of tests should I expect to undergo?

Maria Fisher46 said:Could you elaborate on what typically triggers cyanosis in the extremities and lips? I’m curious if certain factors act as catalysts—for instance, exposure to the cold, intense emotional reactions, or perhaps physical exertion?

Does the paleness usually set in before the blue tint appears? Also, do you experience any pain when your fingers and lips start turning blue?

If you were to dip your hands into some ice-cold water, would they turn blue?

How is everyone’s fitness level lately? For instance, how many flights of stairs can you tackle before you start feeling winded? I'm curious if you notice any shortness of breath during your daily activities.

Has anyone else dealt with skin rashes, joint swelling, or pain? I’ve also noticed some unusual shaping around my knuckles lately.

Have you ever dealt with swelling in your lower legs?

What kind of tachycardia are we talking about here? I’m curious about the specific heart rate—how many beats per minute are we seeing—and whether this racing sensation is a constant presence or just something that comes and goes.

Are you dealing with a cough lately?

It looks like Felix might be suspecting an autoimmune issue—perhaps something like Raynaud's or scleroderma?

I’d head straight to a cardiologist and a rheumatologist-immunologist as soon as possible—which is probably exactly what Felix would suggest.

I wouldn't wait around if I were you! The sooner, the better. It feels like the wait times to see a rheumatologist here in the States are getting longer by the day.
Take some photos of your mouth and the rest of your body when you start turning blue. That way, if things don't settle down, you can show those pictures to your doctors so they know exactly what happened.
Best of luck!
Don't wait too long to schedule that doctor's appointment!

I think Felix would tell you the same thing: if I were in your shoes, I’d avoid tanning altogether and minimize any sun exposure. If an autoimmune condition develops, UV rays can trigger antibody production, which can cause these illnesses to flare up significantly—and let’s be clear, these aren't minor issues. Those of us dealing with these conditions tend to skip the sunbathing; even in the height of summer, we stick to long sleeves, trousers, and wide-brimmed hats to keep our skin covered. We also make sure to avoid walking around at high noon, preferring to stay in the shade whenever possible.
That aristocratic paleness 🙂 (though there are plenty of self-tanners out there)

You might want to search online to connect with people facing similar challenges. Looking through forums for scleroderma, Raynaud, or lupus could be helpful, since our symptoms overlap quite a bit.

To determine if one of those conditions is actually at play, you'll need to see a rheumatologist. A cardiologist should also rule out any heart issues before anything is attributed to an autoimmune cause. For instance, living with lupus, I deal with tachycardia and rely on beta-blockers.

Raynaud's typically causes fingers to change color—turning white or blue, for example—while neuropathy can cause similar numbness. All of this often goes hand-in-hand with collagen diseases.

How are your sedimentation and CRP levels looking? Standard tests from a local clinic won't catch these specific illnesses; you really need antibody testing (like ANA, anti-dsDNA, or ENA profiles), along with things like color thermography, EKGs, or Holter monitors. While CRP can give a hint about active inflammation, even normal results don't rule out a collagen disease—it just means there isn't an active flare-up at the moment!

I truly hope you can get all your exams and tests completed quickly... I'm genuinely curious to hear what you find out. Please check back in here, or you can head over to the systemic lupus thread, where we share experiences and symptoms. You'll surely find someone there who is going through something similar.

Hi everyone!
Does anyone here have any insight into this topic? I'm looking into digestive issues, specifically metabolic disorders like starch malabsorption or amino acidopathies...