Sorry for the OT and personal post. But I'm losing my mind here.

A family member has been ill for 10 weeks with recurring fever/chills, nausea/vomiting, zero appetite and profound weakness. The chills are so severe I liken them to malaria. When they occur said person needs to be piled up with six blankies and two hot water bottles (top and bottom) as well as a sick bag. When the chills ease up then suddenly this person gets overwhelmingly hot, making them equally as frantic as do the chills.

Every single time I go with them to the MD they seem to rally and the drs are starting to look at me funny. Like I'm the problem. As if I'm imagining it all or exaggerating or whining or whatever, which I am definitely not.

After six entire weeks of this recurring nightmare finally, after mega prompting from me, the GP did a urine culture and at long last diagnosed a "mild" bladder infection, for which antibiotics were prescribed. After only a few doses there was much improvement but not back to normal.

This week I thought we were finally free of the chills at least and sick person was starting to eat again (after having lost 20 pounds in six weeks, melting into skeletal proportions before my eyes). Yesterday at a medical appointment we were celebrating a seeming big improvement at long last.

Then last night came severe abdominal pain that did ease off in the a.m. Provisional diagnosis: muscle strain. Tonight the severe chills returned, this time with backache. It takes 1/2 hr to calm things down and by then, selfishly speaking, I'm a wreck. (Not to mention the poor sickie). And it's over and over and over and over, for 10 weeks now.

The GP seems very very very slow to come up with any ideas or insights or definitive treatment. It also takes two weeks every time to get an appointment (so finally I wised up and started booking ahead, needed or not). There's already been one trip to ER via ambulance. I really would like to avoid ER again (and they ask you to unless you're in extremis, although sometimes it seems like we are).

Question to this wise ol' crowd: Any ideas? Have you experienced anything like this? If the lab has indicated that the initial urinary tract infection cleared after the antibiotics, does it mean that the UTI was not the cause in the first place, or the infection has not completely cleared (hence the lab culture indicating the urine is clear was incorrect) or the UTI has immediately returned or they need different antibiotics or ???).

Speaking selfishly again, I am exhausted after providing essentially home care nursing service over and over and over and over again 24/7 for 2.5 months. To say nothing of the patient undergoing unholy (and perhaps unnecessary?) and prolonged suffering. How is it that at every appointment the MDs (of varying specialties) say it's looking good, when from my viewpoint, not so much. A mild bladder infection shouldn't make someone so very ill or last so long or be so hard to diagnose and eradicate, one would think.

ER is a nightmare in itself for various reasons. Also, it is only a stopgap measure, not usually providing definitive treatment. I want it to be expertly diagnosed and fixed!

I can sort out how to make that happen but for now I'm wondering if anybody out there has experience or ideas about a medical problem like this. (And yes, I know that diagnosis by internet is not the recommended way to go. I'm not even looking for diagnosis, necessarily, but perhaps someone's experience of anything remotely like this)?

Thank you for any insights.



Edited 1 time(s). Last edit at 10/15/2017 12:41AM by Nightingale.

Where do you live. Have you had your friend or family member checked for lime disease? It can cause some of these, and can come and go.

West coast of Canada (near Vancouver, BC). There are a lot of trees here but I don't think they've been out hiking or any activity like that.

It's the coming and going that is getting too much for me to be able to cope with. Being intermittent, we never can seem to get to medical care when the bad attacks are happening. Especially as the last few days have been a vast improvement over the past 10 weeks today's sudden decline, again, really took it out of both of us. I can't understand the up and down course and nobody has been able to explain it. And I have often had the impression they aren't taking it seriously enough, as if they can't really believe what I am describing.

I would hope that Lyme disease would be on their radar if this could even remotely be something like that.

I'm thinking now that either the lab results are wrong (it seems there must still be infection in the urinary tract) or maybe even that this was not the issue in the first place, so that initial problem has not yet been dealt with. I'm starting to get rattled about the competence or interest of the MDs.

It's the sudden onset (indicating acute, not chronic cause) and rapid decline that is so disturbing. I wouldn't think that would be difficult to assess. And the periods of seeming improvement only to go right back to square one again, over and over and over and over. And the MDs saying everything's looking good. SO THEN WHAT THE HELL IS IT????

I do actually think I am going to go insane.

And I have great fear my family member is going to die. And then they won't even care or ever find out what it was.

Nightingale Wrote:
-------------------------------------------------------
> West coast of Canada (near Vancouver, BC). There
> are a lot of trees here but I don't think they've
> been out hiking or any activity like that.
>
> >> It's the sudden onset (indicating acute, not
> chronic cause) and rapid decline that is so
> disturbing. I wouldn't think that would be
> difficult to assess. And the periods of seeming
> improvement only to go right back to square one
> again, over and over and over and over. And the
> MDs saying everything's looking good. SO THEN WHAT
> THE HELL IS IT????
>
> I do actually think I am going to go insane.
>
> And I have great fear my family member is going to
> die. And then they won't even care or ever find
> out what it was.

Without seeing a patient I cannot offer any diagnoses, but the back pain, depending of course upon what part of the back is involved, lends itself to a rule/out of kidney issues. Higher back pain could possibly be related to gall bladder or lungs.

I understand and appreciate the desire of you and of your family member to avoid the ER for something you perceive as not being a true emergency, but the health care practitioners need to observe your relative in the midst of one of the episodes you have described. I would advise you to call an ambulance again at the very onset of the next episode.

Edited to add that I just read of the h pylori involvement. Ulceration of the gastro-intestinal tract should be ruled out as well.



Edited 1 time(s). Last edit at 10/15/2017 03:52AM by scmd.

I was thinking Lyme too. I had flu-like symptoms for a good month.

Try this site:

https://www.healthline.com/health/abdominal-pain-and-chills#overview1

When I had gastroenteritis, my doctor temporarily took me off of anything containing milk products. You would be surprised at how many things have milk or milk products in them, even bread. Try giving your family member a bagel in the morning with some jelly. It won't do any harm, and it might help.

Thanks summer. They are only taking water and MILK now, small sips of each. I will try stopping the milk and see what happens.

Would gastroenteritis last for 10 weeks?

I'll check out that site. Thanks again.

Yes, mine went on for a long time, at least a couple of months. I lost a lot of weight. It was awful. I couldn't keep anything down. It didn't change until I went off of milk. My physician explained that milk is very hard on the stomach. He said that the gastroenteritis had destroyed the lining of my stomach, so I had to "baby" it until it could heal. You wouldn't think that milk would be that caustic, but evidently it is.

By the time I recovered, I was so skinny that I got dinner invites for a long time afterward!

That is helpful, summer. Thank you. Patient is now existing mainly on MILK! Not even the dietician yesterday raised any caution about that.

I will suggest no milk tonight or tomorrow and see what happens. I do know that untreated H. pylori is present (intestinal infection, but unable to swallow the recommended horse pills) but the MDs know about it and don't factor it in (which makes sense; I don't think that gets to be acute but am not 100% sure of that).

It's the hot/cold, hot/cold, hot/cold pattern that is so very hard for both of us to cope with. We have just gone through the freezing/chills part and now we're at the way too hot part. :(

Literally anything else is okay -- I remember drinking juices and especially, hot black tea. Read labels!

Results for me were slow but steady. I think at the first meal I only took a couple of bites of the bagel. I gradually got better. I am 5'6" tall, and had gotten down to 107 pounds before rebounding.

So give the "no dairy products" diet a couple of weeks, at least. If that helps, it will take more than one day to show results.

I do recall that my gastroenteritis appeared to be set off by something else -- maybe the flu or something similar. IDK if that's the case, but it went back-to-back with another illness.



Edited 1 time(s). Last edit at 10/15/2017 12:23PM by summer.

Nightingale:

I had someone read this, and here is what he said:

What leapt out at him was that when the patient [TP] leaves the home, the symptoms improve (TP rallies).

Which leads to:

What (if anything) has changed in the environment (say, starting from six months or so before the symptoms began)?

Have the rugs/carpets been cleaned, or (alternatively) are they new? Is there new surface flooring (like linoleum)?

Are there new curtains or drapes?

Has any part of TP's residence been newly painted, or has work been done which involves chemical adhesives/chemical metal cleaners (etc.)?

Did TP switch to a new shampoo/hair conditioner/soap/deodorant/toothpaste/toilet paper/Kleenex/laundry detergent/laundry softener/spot remover/floor cleaning solution/window cleaning solution/dishwashing or dishwasher detergent/makeup such as foundation or lipstick/creams or lotions...

...or is there new cookware, or a new set of daily dishes, in use (compared to what was being used before the symptoms began)?

What clothes or other items made of cloth (like couch slipcovers, as an example) have been dry cleaned since before the symptoms began?

Are there any new "chemicals" being used for any reason, like glue in craft projects, or new marking pens (or paints, if TP uses these items in artistic creations).

Also: could there be transmission of the above sorts of chemicals from neighbors...on top of TP, below TP, or on the sides of TP's residence? Is TP in an apartment/condo above a parking garage, or nearby a parking garage or vehicle service area?

If TP lives in a residence which is right on top of the ground, could there be something in that ground which is being released into TP's living space through cracks in concrete, or in the crawl space underneath the structure?

Has there been any recent autumn cleanup going on in this person's area which involves chemicals...anything like insecticides or something else being sprayed on the trees and plants...or has there been new pavement work on the streets?

If TP is consistently getting better once TP is out of the residence, then it is almost a certainty that the problem IS the residence (in some way; includes the close neighbors, or work on the infrastructure outside but either near, or upwind from TP).

Another possibility: is TP downwind of something contaminated or possibly dangerous? (Like a trash or hazardous materials depot or dump, or incinerator, or is there some contaminated area nearby--such as an old gas station--which is being environmentally "cleaned up" so it can be reused for something else, like a strip mall or whatever.)

Hope this helps!!!



Edited 1 time(s). Last edit at 10/15/2017 01:22AM by Tevai.

Thank you so much Tevai. Those are all sound suggestions and questions.

I don't think anything has changed since prior to the onset of illness to now. Nobody else in the residence is ill (although I know that one person could be more susceptible to chemicals, etc). It is helping me to think more about the leaving home/rally comment/insight you mentioned. I'm trying to think back to see if that is always the case. At first I thought it came from TP being exceptionally stoical and also not wanting to "cause a fuss" by "complaining" to a physician. It was kind of making me feel impatient. (Like, I need for this to be over as much as TP, which I know sounds selfish but I'm being honest; I'm going down too after all this time and the up and down course is exhausting - always when there is a better day and I think things are improving we fall back down the well again). But the last three days were markedly better until last night when the abdominal pain came out of nowhere (and that's a new symptom). And TP was at home those three days, except for a quick trip out to a dietician (who said "yeah, you've lost too much weight") and here's a nutrition sheet so get eating. All righty then.

The other really freaky thing is that the worst days are on weekends. (Noticeable lack of access to medical care, short of ER again). Every single really bad episode has been over a weekend, since August 5. Weird! I cannot think of a single thing in the house that would be different on a weekday compared to a weekend.

I'm very afraid to leave now, or sleep, as this episode is (1) different than before (abd and now back pain) and (2) very severe. It would be very difficult for me to get TP into my car now even if we wanted to go to ER, which we don't. Same old, same old, and it hasn't helped in the past. And I don't want to sit there all night in a roomful of vomiting people. (I know, selfish again. But if I thought it would help I would do it).

I'm wondering if (from summer's list) it could be pyelonephritis at this point, as in starting out as a urinary tract infection (even though GP called it "mild") as there seems to be an obvious infection and the back pain could indicate kidney involvement, and at this point (maybe being a little paranoid) I'm starting to question the apparently negative lab results.

I know it's not recommended to "seek medical advice" on the Net but I'm not doing that - obviously we will find an MD tomorrow if we have to. But I'm desperate at this point and thought somebody here may have some ideas.

And they have. And I appreciate it.

I will go over your questions again, Tevai, and see if anything else jumps out at me. It really helps to read somebody else's ideas.

I am not a doctor, but I have learned through personal experience that some infections hide themselves well. You can feel better on the antibiotics, only to go back to feeling bad once the dosing is done, because the infection is still there, hiding. Sinus and subcutaneous infections come to mind.

Or it could be something else. Go back to the doctor and insist that it's figured out. It won't likely be cured by internet strangers.

Humberto Wrote:
-------------------------------------------------------

> It won't likely be cured by internet strangers.

Many years ago, when I first stumbled-in here (to RfM), one of the first things I learned is that there is an EXTRAORDINARY treasure of knowledge and intelligence among the members here. (Members who are often really funny and creative, too!)

On most boards, I would agree with you that "internet strangers" would not likely be a source of useable help...however, on RfM, this kind of help is the norm.

I don't know if anything we say will help in Nightingale's situation, but everything we suggest which turns out to NOT be so, is one step closer to discovering whatever the true facts actually are--and THAT is a very big deal indeed.

Excluding all the "not so's," is a most important step towards finding out what IS so.



Edited 3 time(s). Last edit at 10/15/2017 01:44AM by Tevai.

Yes, thank you Tevai. Definitely I'm not looking for a "cure" but some input that can perhaps help me to help the MDs figure it out as they are sure not seeming to do so on their own. I need to figure out why they aren't listening to me. I have tried explaining it, in point form. I have written it down in date order and point form. We have seen a total of five different MDs. When I describe violent vomiting, severe chills, relapsing, remitting pattern, for 10 weeks (!) they just say well she looks OK or go back to the lab or see you in a month. It's not helping!

That treasure of knowledge that I have long observed here is what I am calling on now, even though it's against my natural inclinations. But I've tried the usual route of ER, MDs, lab, rinse and repeat. And yet again we're going through it again tonight. Alone. Again. So I'm asking for some possible help with ideas.

For what it's worth; my wife had an infection that went UN-diagnosed by several doctors for almost a year. Then an older retired doctor who likes to review difficult cases discovered that it was MRSA. Four previous doctors failed to diagnose it. Not all doctors are competent, some doctors practice medicine when they should be fixing cars or painting houses. Don't be afraid of seeking out a new doctor, two guesses are better than one.

Thank you sunbeep. I hope all is well with your wife now.

I am certainly seriously considering getting a 4th, 5th, 6th opinion. Maybe fresh eyes will see something the others are missing.

It's definitely something.

Not that I wanted to give too much info but here goes:

The patient (TP - thanks Tevai!) had a Rt mastectomy in April. Had had a severe URI (cough/cold) for a few months (to the point I was quite surprised they went ahead with the surgery). The URI continues in a more mild, chronic way. In July/Aug had radiation treatment. THE VERY DAY FOLLOWING THE LAST TREATMENT, in early August, this current illness began. However, two oncologists and an oncology nurse have said it is not an expected course post-radiation and so that is not the cause. (It is hard not to see cause/effect when it is literally one day to the next but I have to trust that they know expected side effects and this isn't one of them).

As the GP was so slow to pick up the UTI (bladder infection) (it took 6 weeks to get a diagnosis and antibiotics) and TP got very debilitated before receiving the Rx I thought that was the reason for the slow recovery, especially coming right after the radiation treatment, which does cause profound fatigue.

The GP didn't recheck the urine after the antibiotics to ensure the infection was cleared up - I had to request it - another delay. She assured me last week it is clear so not a cause of ongoing infection. However, at this point, I have somewhat lost trust in her and feel like double-checking on that.

The only other thing I can think of is that the one-dose powder-form antibiotic that was prescribed may not have been as effective as a different antibiotic might be, but that doesn't make sense if the lab test shows the urine is clear, which the GP says is the case.

But wouldn't you think they would keep looking for an infection source if these spells keep recurring? And in an immunosuppressed patient? (post-radiation treatment).

The surgical site is fully and completely healed, double checked by the surgeon this past week.

I shouldn't have to be the one that diagnoses the problem but I feel like I must as the MDs aren't. Not only that, I feel they aren't being aggressive enough to quickly get on it and find the cause.

It sounds crazy but TP was healthy and active and independent before the surgery and certainly before the radiation treatment. It's like they broke TP and now are not moving fast enough to fix TP up again.

The immunosuppression is the reason I don't want to go back to ER if at all possible. Too many sick people. And they make even patients who are vomiting sit in the waiting room, barfing into their little cardboard dishes, bare bums hanging out of hospital gowns. It's very unappealing to me. But again. If absolutely necessary we'll brave it again.

Last time I went to ER, standing in the check-in line, a man in front of me was bleeding all over the floor from a big laceration on his hand. He told the clerk that he had cut himself while butchering a lamb. (I'm not sure he used the word 'butchering' but I can't remember now what exactly he said). Between the blood and the vomit and all the misery (not to mention the germs) I just don't want to be there or expose TP to any of it.

I know I always say how great our Canadian health care system is. Well, maybe that view is a bit rosy. It's great if you don't need it! (The great part is largely the fact of not having to pay - except through taxes but that doesn't hurt as much as having to find massive amounts of funds in the middle of a crisis). So now I see it from the patient end (rather than the nurse's view I've had before).

And yeah. ER is a Saturday nightmare I'd do anything to avoid.

Anyway. Enough. I know we need a dr. But I appreciate all the ideas and comments.

My considered opinion is that this is not likely a urinary tract infection. UTIs usually do not cause significant fever unless it involves the kidney. The relapsing course is also atypical. My primary concern at this point would be the presence of an abscess somewhere. With abdominal symptoms, one thing that comes to mind would be an intra-abdominal abscess - possibly from a perforated diverticulum, or something from the biliary tract. An atypical pneumonia is possible, but unless there are respiratory symptoms, less likely.

I would recommend an abdominal CT, blood cultures (preferably during fever spike if possible), CBC (even if previously done), hepatic function tests, and possibly chest x-ray as a starting point.

Any immunosuppression can make the presentation of almost anything atypical. One would also need to consider a fungal infection as a possible cause.

From what you are describing, it sounds like there is an indolent infection somewhere, my above recommendations are where I would start looking for it. If not found there, more intensive investigation is definitely warranted.

Thank you very much. Well worth considering.

I am stuck on the UTI as that was a positive lab test, when they finally did a C&S. But I can let it go if the GP can reassure me that they indeed did a C&S post antibiotics.

A recent chest x-ray was negative. This is the first time there has been abdominal or back pain. Recent lab tests showed decreased kidney function, a surprising finding that, again, they haven't investigated. A locum casually mentioned recently that the white count was elevated. They hadn't said that before. They have rechecked that but I didn't hear back that they were worried about anything.

I am an RN so despite a personal connection I can keep to a somewhat rational approach so I don't think I am being crazy agitating that they're not seeming to be intense enough about investigating recurrent chills and vomiting. I heard yesterday of a woman who died recently after being sent home from ER with untreated gallbladder disease - hard to explain why that kind of thing happens.

Thank you so much Doc. Your reply heartens me that I am right to be so concerned and to want more aggressive and speedier investigations. I think it is an infection too. Obviously nothing too obvious. But with an abundance of physicians having been recently involved, somewhat it seems like no one dr is taking the lead and perhaps collectively then they are missing something. The ER dr that finally did some lab work was the first one to get a positive finding and I pinned my hopes on his UTI diagnosis being the sole answer and I thought then there could finally be a resolution to it all.

What would be the cause and location of a possible fungal infection?

We will soldier on with yet another GP appointment booked for Tuesday. (I sure hope she doesn't again say all is well - not when I've just put in another full shift of home nursing it isn't!). I will bring up with her some of your suggestions. My relative has had a lot of imaging due to the recent cancer surgery and so maybe that too has slowed them down in terms of further investigation (as recent abdominal ultrasound and x-rays related to the surgery have been negative). They're all for "saving resources" but sometimes that results in under-treating a patient, unfortunately.

Thanks again. I have a bit more hope now that perhaps an answer can be found. If somebody would just look a little bit further.

I had symptoms similar to your patient. I had been avoiding medical treatment due to high deductibles, live alone, and am stoic.

I finally went in when I could take no more. My doc behaved exactly as Exmo Doc describes, walked me across the hall for a scan, called me as I pulling into my driveway from the appointment to say I had to go to hospital NOW.

I had diverticulitis, a small perforation, and a 9mm kidney stone blocking drainage of my L Kidney, causing it to bloat with urine. They hospitalized me, put me on IV antibiotics for a week, removed the stone, and put me on a low-residue diet. I was hospitalized for that week, and recovery took 1.5 months.

Symptoms had heen intermittent, as you describe. Changing the diet alone would not have healed me. Untreated, I would have died. Call the ambulance, take names and kick butt to get a scan.

Here's another thing to consider, OP. You, as an RN, may well be viewed as being the one who did "not do enough" to get help for your relative if things go downhill. You need to document the symptoms and present them as if you are on duty.

I know you are exhausted and are doing double duty. Is a leave of absence possible, to get the care your relative needs? If it takes multiple ambulance rides and ER visits to force the tests, that's what I'd do. If your relative has a serious infection, s/he may not be entirely rational or acting in his/her own best interests. It has become your job, like it or not.

Being so exhausted, you may be a bit compromised yourself. I bring this up to in no way question either your behavior or skill, but to help you step back and reprioritize. You are describing a patient who seems to be slowly dying, as I was. If I had had a beloved RN looking after me, I would have trusted her with my life.

My mom was a RN, so I know some of the challenges you may face, when presenting to those from whom you normally "take orders." In this case, you need to wear at least two hats, and advocate for your relative, harshly if needed. Maybe present a written history, then be the pushy relative who demands specialists and tests.

I wish you well.

She was pretty nauseous and tired today when I stopped by (she's in her 80's).

I don't have any additional insights (and one of my sisters is an MD who has a private clinic and teaches at a major university),

So the only thing I can suggest is to check with other doctors (and a good doctor wouldn't mind, particularly if, as appears here, it's a baffling case). Drug resistant bacteria are on the rise, and in some cases "older" antibiotics can be more effective, but as my mother's nausea suggests, they can be problematic.

And I will add a plea for enlightened sorts to try to put pressure on the drug companies to develop new antibiotics; they've been "coasting" far too long...

Sorry about your mom, Cabbie.

Yes re drugs.

I cannot believe the state we're in re antibiotics. I was thanking Alexander Fleming, in absentia, the other day, for my relative seeming to recover after the Rx for antibiotics. Miracle drugs, for sure, but we've kind of messed it all up now.

I have interstitial cystitis (IC), which is very difficult to diagnose. I have many of these symptoms:

Severe abdominal pain. The bladder pain sometimes radiated down my legs, and sometimes there are spasms. Sometimes the pain lets up, if I rest and eat bland foods. The pain is worse if I drink caffeine, soda, chocolate, spicy foods. Stress is a major cause of pain flare-ups. I often have chills, but no fever. The pain alone is severe enough to cause nausea. IC pain is one of the worst pains, that is not life-threatening. In my experience, it is a pain that nothing can touch. Even strong painkillers don't reach it. Analgesics and heparin need to be infused directly into the bladder. I just recovered from a bout of IC, which lasted 6 months. Not getting any sleep effects the immune system, so I had lots of colds and flu.

You can't assume that your patient has only ONE cause for all these symptoms. She may have several problems.

Given her recent hospital visit (s), she might have MRSA, so please have her tested for that.

Test her for food allergies, with the "elimination diet." You can get books on this, or find info online. simply eliminate the major allergy-causing foods, such as milk and dairy, eggs, shell fish, peppers, nuts, wheat and gluten, for several days. Then, slowly add back these foods, one by one, waiting 3-4 days in between. That's how I found out I was allergic to gluten. Gluten (wheat, barley, almost EVERY packaged food, even Campbell's soup has gluten added to it) allergy causes the symptoms of severe pain in the upper intestine, for several hours, fatigue and sleepiness before that, bloating with the pain. Some people have diahrea(sp) and upset stomach, but I don't have that. Gluten allergy is tricky, because what do you give people with nausea and upset stomach? Soup and crackers. That's just more gluten! Celiac runs in my family, and my cousin almost died, before they found out what she had. Her doctors were really stupid, because my cousin's father had Celiac. I suggest you go to a different doctor.

Not to make light of your problems--but it could be something as simple as needing strong probiotics. The antibiotics your patient took killed the good bacteria in the intestinal tract, and if these bacteria are not restored into proper balance, a patient can become very sick. My niece had many, many tests, before the doctors ruled out all the other causes, and when they finally put her on probiotics, she was better within weeks.

You have been through Hell, and I'm sorry! Though your patient's problems have been horrendous in the past, that doesn't mean they are in danger, now. Often patients develop PTSD from bad illnesses, and they panic, when they feel pain.

It is likely her panic is what comes and goes, as anyone feels better when they are calm and thinking positive.

If you can, go to a different emergency center. If you must go there, tell the nurses that your patient is highly contagious, and maybe they will mercifully isolate him/her.

Stress can wreak havoc with your intestines, too. Most likely, weekends are just more stressful to your patient, in general. It could be that your patient knows the doctors are inaccessible. Night-time causes this kind of abandonment-panic-stress cycle. Maybe you, Nightingale, are not as available to them during the weekends or at night. Of course, the mere thought of going to such a hell-of-a-waiting room would cause anyone (even you) severe stress!

I feel for you! I hope there isn't anything seriously wrong.

(((hugs at 2:00 am on Saturday))) to others who are suffering right now.

I have gastroparesis. It's an awful thing and makes you lose weight in a hurry. I wonder if that's the problem. Instead of a GP, I have an internist. I would find an internist.



Edited 1 time(s). Last edit at 10/15/2017 05:00AM by Aquarius123.

Right, I would go to an internist as well, if that's an option.

As mentioned above, it seems to me that blood cultures and CT looking for abscess are definitely in order. If everything keeps pointing to infection there are a few nuclear medicine scans that can be helpful in identifying occult infections that you might want to discuss with your doctors.

An FDG PET/CT scan (the same scan used for staging cancer) can be useful for pinpointing areas of infection in cases of bacteremia and fever of unknown/unclear origin. If the last radiation treatment was done in Aug that should be enough time for any flare reaction from the radiation treatment to have subsided.

White blood cell imaging using radiolabelled-WBCs is also an option to identify the location of occult infections.

A less common option (at least in the United States) would be a Gallium-67 infection study.

PET/CT would be my first choice and Ga-67 my last choice, but it depends what is available in your area and what your doctors think regarding each individual case.

I hope they get everything figured out soon so that both you and TP can get back to a more normal state of affairs.

Nightingale, my friend's spouse was recently diagnosed with C-Difficile. His symptoms were not identical to your family member's but there is some similarity. He has been prescribed several antibiotics but is having a slow recovery. Has that been ruled out for your family member?

I had a niece who had an infected appendix that was leaking very slightly (the details are fuzzy because this was maybe 15 years ago).

They had ruled out the appendix, because the lab work came up negative for appendix (I think her white blood count, or whatever they look for, was normal, and again, I apologize because it has been a very long time).

But after many months, of feeling sort of okay, and alternating with horrific symptoms including pain and vomiting, they finally went to a doctor who had seen something like that before and recognized that she needed surgery. The appendix was infected, and was leaking, and she recovered well after the surgery. But again, the normal tests didn't detect it. I'm wondering with TPs suppressed immune system if it would affect the test results.

I also second the recommendation for probiotics. I love Kevita drinks (Kefer water, and I'm not sure if I spelled that right).

This is probably way off base, but what about Mono? The inflamed liver could be causing the abdominal pain. It also causes the chills and the rapid weight loss. I contracted Mono in a hospital as an adult.

Are you able to go to a different doctor?

Folk remidies would be elder berry, apple cider vinegar, cranberry taken seperately.

Where to begin? First of all, give your patient probiotics! Everyone needs those, anyway, after taking antibiotics. That alone might help some of the sick one's digestive problems quite quickly.

Your patient (I will refer to them as "she") is exhibiting all the symptoms of celiac disease! This is hard for doctors to detect, and rare enough for them to overlook the possibility. Gluten intolerance and celiac disease are on the rise, because wheat and other grains have have been genetically modified to contain more gluten, and because the average (American) eats 25% more gluten, than in 1970

Celiac disease:

The symptoms (for me) are, extreme sleepiness and fatigue at the very first. The worst symptoms don't show up for 4-6 hours, which makes celiac disease hard to diagnose. Also "gluten contamination" is invisible. The symptom that can not be ignored is the severe pain in the middle of your belly--eye-watering agony--for several hours. This is debilitating, and can last around 6 hours. Usually, I can see my stomach blowing up like a balloon. I don't have gas, and diarrhea only half the time, no vomiting, but my father and uncle had all of that with their attacks. I'm unable to eat after an attack, for about 4 days.

Most tests for celiac are unreliable. They can show a false negative, if the patient has not eaten gluten for a while. You don't want to deliberately feed your patient gluten and make her sick for a week, just to have an inconclusive test. Also, you said that you don't like taking her to the doctor all the time.

Remove all gluten from her diet, immediately! Within four days to a week, she should see improvement. You probably already tried taking your patient off of gluten, by eliminating the obvious bread, crackers, cereal, pasta, etc., but that is not enough.

You must be very careful in detecting sources of gluten. Go online and read about it. Wheat, Barley, and Rye are the main culprits. Also, don't let her eat soy or oats, until she is stabilized. (I can't eat soy, but oats are fine if they are uncontaminated gluten-free oats.)

There is such a thing as "gluten contamination," in which gluten molecules come in contact with non-gluten foods. Wash your hands before handling your patient's food, especially if you have been handling gluten. Have the deli clerk put on new gloves, before serving you, because they have probably been making sandwiches. If your restaurant salad comes with croutons on top, you can't just remove the croutons and eat the salad. You have to order a completely new salad. (I was sick for a week after that happened.) Obviously, you can't remove the insides of a sandwich, throw away the bread, and eat the rest.

There are many different technical names for gluten-containing substances. Some common ones are maltodextrin, yeast, and MSG. There is a lot of terminology for you to learn!

Your patient should not eat ANY packaged or processed foods, unless the label says "gluten-free". This includes soups and sauces.

Did you know that Kaopectate contains GLUTEN? I used to take that for the diarrhea, during a gluten-attack. I was actually making myself sicker!

BEWARE of other medications and vitamins that contain gluten. Most "chewable" pills contain gluten.

Most shampoo contains gluten. I use Andalou from Whole Foods. Most cosmetics contain gluten. I use nothing but Laura Mercier. It's pricey, but I got tired of checking each product individually, and they kept changing their formulas, all the time.

My father had celiac disease, beginning at age 64. My nephew was a child when he got it. It can show up at any age. It runs in families. My father lived with it until age 100!

Lactose intolerance:

If your patient is living on mainly milk, give her lactose-free milk. Many celiacs are lactose-intolerant. I am, during a gluten-attack, but not normally. When the damage to the intestine heals, after a few weeks, I can eat normal dairy.

Vitamin deficiencies:

Since gluten molecules destroy the cilia in the small intestine, for a while, a celiac is unable to absorb nutrients and vitamins. Give your patient gluten-free supplements. I was tested deficient in Vitamin B12 and Vitamin D3, which are common deficiencies, anyway.

Dehydration:

Dehydration can cause anxiety, panic attacks, fatigue and stupor, chills and shaking. Low blood sugar can cause these symptoms, too. If your patient is menopausal, the hot flashes could be that. If she is getting well, recovering from her radiation and chemo, the hot flashes can return with a vengeance. This is a sign of good health! A healthy woman will have minor hot flashes for the rest of her life. My mother still had them into her 90's.

Interstitial Cystitis:

Another poster mentioned this. Don't rule it out. It is extremely painful, and bad pain can cause nausea. A cystoscopy will diagnose that, quickly.

Some of your patient's sick episodes might have been various colds and flu. Celiac disease compromises your immune system in the intestines, and also the vitamin deficiencies hurt your immunity--a double whammy!

As another poster mentioned, stress and anxiety make everything worse. Your poor patient might be having flashbacks to her cancer scare, every time she feels sick.

Nightingale, you are a saint, to take such good care of your sick person, and to offer comfort and companionship. You both deserve a solution. I hope there's a happy outcome! (((((((hugs)))))))

I appreciate so much all your wise and experienced thoughts.

As I feared, I was up all night, again. As I said, I think it's the up and down course that is the hardest for me to deal with as, for instance, last week she had some good comparatively, and I, and certainly the MDs, keep thinking the corner has been turned and the improvement is going to last. But then comes the cold and chills and no appetite and etc all over again, over and over and over since the beginning of August. As I said, the MDs aren't seeming to pick up on the overall picture of the waxing and waning of something that is making her very ill and debilitated now through prolonged illness, with acute flashes of _something_ and almost nil intake of any nutrition at all. If she is upright and answering questions when they see her, they don't seem to be hearing me at all about what all is happening outside their office.

I did mark this thread "off topic", as largely it is. But it occurs to me that in a way it's not so far off as this has been a good exercise for me in being more assertive. (However, not yet as assertive as I am going to be this coming week). You know how many of us (especially females) who have learned to be, or were naturally, on the submissive side, especially with MDs and other so-called authority figures. And even though I'm a nurse. That might go against me as I know how (some) MDs think about family members speaking up or asking for specific tests or other interventions. So I've tried to be not too much of a pain to them but now that is definitely over. As long as I don't do anything that makes them ask me to leave the room or otherwise totally discount me, I am going to ask for specific tests (with thanks to all here who suggested them).

I understand in a way what is going on with the MDs. There were several involved during the time of the cancer treatment (surgery and radiation). That makes the GP take a back seat and we didn't even see her during that time (April-August). Each one does their little part of things and nobody seems to see the bigger picture.

As was suggested, I do write out the entire history for each MD, each time, so they do have all the facts. However, I must say that a couple of them didn't read my account.

I think it's true at this point that she is not making good decisions for herself. I have been acceding to her wishes about how to handle this day to day. Now it's getting scary to the point I am wondering if she will even make it to her next MD appt on Tuesday. I even asked them last time why they would do all that cancer treatment and then drop the ball (I didn't use those words) but I meant not intervene when the recovery phase is not going well. (Which is not expected, as there was no chemo and the cancer was small and contained and completely removed).

Again, I appreciate all the helpful insights from you all.

And --------- oh dear -------- I think we are now at the point of going to ER again..... gotta dash. :(

My folks spent the morning in the ER, and that's what turned the trick with her his time...

Per my MD sister: "Yes, that is really important."

Just sending you love and healing thoughts for your dear one. My mother’s surgery, chemo and radiation caused so many additional health problems it was almost unreal.

A hidden abscess or seroma is what I’m worried about for her. But I have to say my symptoms of IC sound very like some of these symptoms ... like Afraid described.

I hope you can get to the bottom of this soon as possible.

Nightingale, have you checked with the cancer treatment team?

What you describe might not be uncommon, but an "ordinary" MD might not be aware of it.

Also, check out post-breast cancer surgery forums for a possible correlation.

Please check your email.

Hi, new to posting but have read rfm since 2000 or so. This thread reminded me of an article I read many years ago but thought it worth mentioning. The individual in the article had the same or similarities in symptoms. No doctor could figure out what was causing the problem. Finally visited a lesser known doctor who was know for researching lesser known allergies. Turns out, she developed an allergy to corn and all byproducts. Just seemed to appear overnight. She dealt with severe problems such as all flu symptoms, rashes, cramps (all over, just abdominal), and im sure others not mentioned. Not sure if this applies to your situation, but felt I should mention it. Folks an this board have a lot of experience and food for thought. Ots all worth researching. Corn byproducts are in just about everything we eat in our food chain from animal feed to oil and touches most everything we eat. She and her family had to do a complete lifestyle change but was worth it.
Hope all is well soon and you find out what is the cause and get treatment.

Just a couple of thoughts, that may or may not apply.

Chills/fever. I'm not sure about the fever. But I know chills can happen when body weight drops significantly. This was a prominent symptom when I was caring for someone with an eating disorder who was underweight.

Any chance of a migraine disorder? It doesn't always manifest as a headache. Sometimes it's severe stomach pain, nausea, vomiting. Sometimes sufferers get severe chills. Someone in my life gets hot before it comes on. Sometimes it turns into a regular migraine headache, sometimes it's just nausea/pain. We didn't know what was going on until she complained about her vision not being good (it was temporary, and it was an aura). Abdominal migraine is a thing, and one of the symptoms is anorexia, or the inability to eat, which can lead to weakness and weight loss. Not eating because there is no appetite makes the nausea and headache worse, so it's a vicious cycle.
The fact that it comes on so quickly and is so unpredictable makes me suspect migraine. We've been to a combo Neurologist/Gastroenterologist, so there are doctors who can approach this as a stomach problem or a neurological problem.

The gut and the head are very closely related. You might want to google this and see what you can find out. They can both be affected by muscles (especially in the neck), and by gut flora. It wouldn't hurt to supplement with some probiotics. I like Kevita drinks. That would help the patient hydrate, as well. Which would help with any kind of illness.

I've done a lot of caretaking for chronically ill people. Take care of yourself, too. If you can get some kind of respite care for the patient, and take a couple days away. Or at least realize that it's hard. You apologized for complaining, but I get it. It's hard, emotionally charged and extremely draining to take care of a sick loved one. And it's hard to take care of yourself. And it's hard not to feel like it's your job to fix it, when the doctors can't.

Sometimes you do have to be persistent with them, and do a lot of research. There are things I found out through reading that helped. But sometimes you can't fix it, and you just have to do your best to make it through.

I'll be honest, that there have been no easy fixes for us, but things have gotten better. I think the patient has learned how to take care of herself better, and we made adjustments to reduce the stress, and give her more flexibility when she's sick. Which, in turn, has helped the symptoms, I believe.

Best of luck, Nightengale! So sorry for what you are going through.

Its fall. Check re woodsmoke /re carry allergens. For ex poisonnoak can cayse skin reaction even in smoke, burning nut tree orchard fire wood in bar b q or fireplace causes gastroinrestinal distress and eye sclera swell up.treated wood ie dipped against rot like old rail road ties & pressure treated deck board being re ycled as kindling or firewood bar b q or chill weekend evening may release chemical / toxins.

Its fall. Check any black mold swollen house siding puffed particle board. Even biking yard work muck dust clothes garden gloves by weekend gardener / check serum sickness autoimune allergic response and parts types of anaphylaxis.
Re autumn spores molds tree dust soil contaminants.. anything reactivated on deck or siding by autumn rain, hose down steam cleaning.

Check vacume and house vehicle air filters. Sterilize neti pot any tubing pump dental teeth or sinus appliance.

Fungal overgrowth can cause fever. Allergic or envuronmental toxin can cause fever. Loosing weight if fat carried ddt etc bioscides fat contained now banned can cause harsh flu fatigue.

Its fall whats the last produce harvest ir gardrn chore.. did they utilize soil or mulch made from human waste in a metroploitan area it could be contsminated imperfectly sterilized. Does hepatitus exposure cause nausea or fever?

Its fall may be chill mornings did anything come out if storage, so used to it wont notice smell, moth ball chemical very bioscide dangerous on faĺl blanket cape or snuggies carries into washer, passed on to other clothing.

If party lightly fri and sat or neighbors do, and ill weekends verify chemical purity of what they smoke re noncommercial grow standards utilizing banned pesticides or non usag stabdard re timing spray minimum x weeks before harvesting crop. For ex Neighbors weed drifts across my front porch ?.

Recall when food had ? Nitrigen <name is?>additive in milk pricessed to in raise apparent protein? Hurt even killed infants in formula dogs from petfood, my acquaintance almost died.

And finally food test for newer sensativities re viral transmitted food allergy. Article 5, 7 years ago referenced large subject group getting ___ some protrin or protein synthesis chain tested apparent in intercistial space/fluid all of whom became violently allergic to meat. New sensativity. Maybe kentucky Iowa Appalacia subject group gained by exposure to a cold which transmitted ut /some protein. /family biochem researcher wss astounded couldnt get over it. Apparently human bodies grow new immunities as well as new sensativity, the very body itself learns ir is taught by its environment
Not only epigenetic turning on and off of recessive and dominant born keys --- but learns or changes just through shared things we breath.

Look at hypervigilance caused through stress even lack of sleep or breaks in routine functioning - impacts. Include inflammatory response.

Inflsmmatory response Compare medication supplenents ingested items teas/ food and oil which accelerate inflammatory response interact with postglandins or receptor sites.

If family were practicing lds or received donation I would check if wheat used had fungus, check if water bottle and water jar jug sippy cup sanitized or weekend treat sodaor sweet tea treat source had contaminant.

Sleuth and practical logic can protect family recovering from chronic illness even after tumors from further down turns .?. Identify environmental challenges you can comfortably control?
Like tge chikdhood friend whose german shepherds all tumor out, then their dad did, now it is discovered the fumigant they tented over ag land caused cancer... but nausea and fatigue first. Research resesrch your environment research your setting.
Just like legionsires was some tiny issue in an air vent my acqaintance thought they got sleep apnea just when slmond orchards and walnut groves shake trees, another acquaintance said her twins only git asthma when they are moving the cows (to milk barn at the dairy)
What can you change access to- what must you medicate alleviate symptoms to live through because its not feasable to leave the environment. Sleuth. You can do this. Even if its not a direct infection, you can identify primary or mitigating factors contributing to the pattern of symptoms within the environment. Which once identified you can manipulate access to and thus exert some albeit limited control over the variable.

I ever tell you about a building of orifessionals allergy symotons even migraines nausea working during rainy season in a building without room vents just closed doors windiws steel doors painted plywood walls concrete floors under brown spotted white tile suspended below a rotting solid wood roof with chunks falling off in corrudor when not glued on by paint? And every one carried inhalers the one who lost weight couldnt keep food down, dizzy, weak. Another without hair kept complaining waving their hand mid sentence sucking a puff from their rescue asthma inhaler. These folks were convinced they were all sick but were in fact health impacted by the building.
Oh and always get the assiciates of old farmers and building maintenance to tell you where he or she dropped off dumped or disposed or presently stores spent pestcides, cleaning solvents, spent oil, say an old nickle mine, or gold mine processed with heavy metal, tanks for old fuels..(where not to plant your tomatoes pumkin ir zuchinni.).so you can avoid building or sitting above them or accepting a well from the watershed.
Or planting a garden with contsminated produce.

Well and frankly did your relative spray their tomatoes or roses or mix bug spray from concentrate themself weekends as part of fall garden house chores? Home made potted plant mealy bug spray prepped on a kitchen counter or utilizing kitchen stainless serving ware /theres a reason why professionals do get ag degrees. Also did your relative explore bug kill utiluzing real farm supply *there is a two step spray a fungus on young bugs in crop then crop dust fungacide two weeks later.both steps are necessary and require protective gear. What if your relative bought only half the bottles spray kit? No orirective gear? Also are they growing mydgrooms off a spoore filled log kit that one got my ehoke famiky sinus flu until he *son in law mushroom hobbiest* finally tgrew it away. That would get them sick. Hopefully they didnt do that.

Ps sorry about typos-mis spelling

This is a really superb guidance list, Paintingnotloggedin...I am in awe!

Thank you!!

I really appreciate the comments from everyone who was kind enough to offer their info and insights.

I wasn't asking for medical advice per se, if this thread is what sparked the newer thread about not asking for advice via internet. Of course I would go with fact and what makes sense in the circumstances and would defer to medical experts for definitive investigations and treatment.

Also, this could well be the first time I have ever got so personal at RfM as to ask for help about an IRL situation. I was desperate as my outline of the problem indicates - that despite visiting several specialists and a few GPs (partners in same office) and keeping comprehensive medical records to help my relative keep the history straight, no one person seemed to be putting together the whole picture and coming up with a definitive diagnosis and treatment plan. Meanwhile, my relative was melting before my eyes, with a 20 lb weight loss in just a few weeks. I couldn't comprehend what I was not explaining or what they were not seeing. The last MD relative saw just before this latest episode of even more acute illness said that despite the 20 lb wt loss relative was still "within an acceptable ht/wt ratio". Yes, but the point wasn't what they weighed at the moment but the fact of rapid unintentional wt loss from being unable to consume any food or even liquids at the end. What about THAT picture were two oncologists, a cancer surgeon and several GPs not grasping was my cry and plea. Their suggested path forward when I first raised the alarm was to access the services of a dietician, which took 7 wks to obtain. Again, what about a 7-wk wait being too long were they not getting? That is why, desperate and afraid, I came to RfM, which many exmos before me have done and rightly confirm that there is such a large body of posters with so much life experience here that pretty much any question can be answered. Of course, it's up to the person making a query to weigh the responses and make their own best decision for themselves, given the circumstances they are trying to cope with.

Even if the suggestions given here don't end up applying to this circumstance they could help someone else or at least were interesting to read. Too, part of responding with one's own life experience and knowledge is that it indicates caring, which is a good quality for a community such as RfM to have and it has shown that in abundance through the years.

I really appreciate being the recipient of your thoughts and good wishes this time. And many peripheral points (such as carers needing to look after themselves too, which I've often said to others but forgot about for myself; and that I shouldn't feel like I have to solve it all myself - which I did at that point and felt I was failing - how easy it is to fall back into negative self thoughts or feelings of shame or inadequacy) also helped me to think things through at a rough time.

You are the best!

We did go back to ER. On Sunday I couldn't even get relative into my car as she was too weak to walk out to the driveway. I duly called ambulance and rode with her into a crowded Emerg on a Sunday evening, where she was admitted right away.

In less than 12 hrs they had done an upper and lower GI scope, taken biopsies of a previously undetected mass in the stomach, confirmed with CT scan and informed us that relative has cancer of the stomach.

This is a second primary Ca, not metastases from the breast cancer (which was just treated from April-Aug). I can't wrap my head around it being two primary cancers in the same year. And also that with the comprehensive work-up for the breast cancer the stomach one went completely unsuspected and undiscovered. And, of course, the purpose for this thread, that it took so long to get here. I've been yelling (the soft way I do it, which could have been the problem) since early August about the unexpected course after the completion of breast cancer treatment - acute illness, weight loss, rapid decline. The oncologists just said this isn't expected side effects of radiation treatment. OK - so what the hell is it???? - I was asking.

Fortunately for us, on Sunday/Monday a different team looked at the presentation and ordered the expected tests (especially CT abdomen) that showed them in a NY minute what had been missed to date. They are going to operate on Thursday to remove part of the stomach with the mass. (I'm unsure of its size).

They said there is no spread. So this is the second contained tumour in a year for this relative, which she considers very "lucky" for her, which it is but I can't help but think two cancers in one yr isn't that lucky.

Now we have to hope they don't decide that she needs chemo. She just had radiation - she is still immunosuppressed from that apparently.

I don't want to reflexively start blaming the other MDs. But I will definitely want to talk to them, if only in writing, to see what I could have done or said differently to communicate the problem better, if anything. I also hope, at least, that they will learn from this for future pts. For now, I'm going to think that MDs are subject to thinking errors, same as the rest of us, in that since my relative had just been treated for Ca everything subsequently was related to that, or something like that. When I took her in to see them I would take typed notes, in point form, to highlight the main problems. It wasn't like I was yakking at them and not communicating effectively. So I am mystified. How did a paramedic with the ambulance "get it" in under 5 minutes, realizing there was a significant problem and reassuring me that it was right to call them and go to ER and go through it all again with more MDs, when her own physicians just didn't seem to be hearing us. In fact, they had discharged her from their care in September! And she continued to get more and more ill.

But now we are on the good path. I love the new surgeon and he is very positive about expecting a great outcome. (BTW, it's all the same hospital so the original team of MDs will get the ongoing records and maybe this can be a good teaching case. My relative would be thrilled if so).

I really appreciate the MDs who responded on this thread. Turns out the CT was the way to go (I had actually thought they had done that in the multitude of tests during the breast Ca work-up and in assessments postop at that time but I apparently was incorrect about that. Besides, they weren't focusing on the abdomen at that time, obviously). And, of course, there comes a time you have to go to ER, despite its shortcomings, and then go back and back if necessary.

Too, as said already, I appreciate everyone's input. It's all food for thought, in numerous ways.

That's my little joke - "food" - something my relative hasn't enjoyed all summer and now into fall!

So, being persistent pays off. If you have a question, keep beating the horse even if it's dead, despite the maxim saying otherwise. Especially for ex-anythings!

Thank-you so much for taking the time to update us. I'm so glad you persisted in getting her the attention she needed.

I hope you can get some rest from your terrific ordeal! What a friend she has in you.

Edited 1 time(s). Last edit at 10/18/2017 01:05PM by Helen.

Glad your friend is getting the medical/surgical care she needs. Wishing her the best.

Thanks for your note. I think of you often. Wish we saw more of you around here.

I am very glad you were able to persist, and that "TP" is now being much MORE properly taken care of!

A warm cheer to you, Nightingale, because---despite all the considerable and continuing difficulties you had to surmount---you continued to fight the "establishment" until justice for TP was achieved.

Way to go!!

:)

I'm so sorry about what they found, but at least you know what's going on.

I hope this discovery gets her back on track to recovery.

I just want to point out that your persistence and vigilance made the difference for her.

That is a nice thing to say. Thank you. I can be a bit OCD'ishly persistent, which completely ticks people off. But this time I didn't even care what they thought of me, other than to try and avoid getting kicked out of medical appointments. I just wanted to achieve the end goal, however that had to get done.

So now it feels like we went back to Go and are redoing the entire thing all over again, for the second time through. Oh wait - that's because we are. Relative was exceptionally crabby today but I have to admit she deserves to let out her feelings for once.

Surgery Thursday. Never has the phrase "take it one day at a time" been more apt for us. My brain can only focus on this exactly one day at a time, what do I need to do tomorrow, and then what do I need to get through today, and etc. Because stress and fatigue really take it out of you. And that's just the helper people. For the patient obviously it's even more challenging.

I used to think at the very least every experience was valuable for what we could learn from it. However, at this moment I'm too tired for that. Rather I'm humming "Why me, Lord", that old Christian song that's stuck in my head. I kind of feel bad keeping on thinking about myself, like how am I going to get my work caught up or when can I sleep in next, but if this was someone else I'd be saying it's OK. Look after other, look after self. So, I will - try.

I am wishing I had stopped at the liquor store on the way home. A big fat glass of strong red wine wouldn't go amiss right now. Rats. I wish I had thought of that 30 minutes ago when I was right next door to it. It's dark and rainy now so I'll have to do it the Mormon way for tonight, haha.



Edited 1 time(s). Last edit at 10/18/2017 08:54PM by Nightingale.

"I kind of feel bad keeping on thinking about myself, like how am I going to get my work caught up or when can I sleep in next, but if this was someone else I'd be saying it's OK. Look after other, look after self. So, I will - try."

This is hard stuff! Just because the patient is worse off than you, doesn't mean YOU aren't exhausted in every possible way. But I totally get the guilt for thinking about yourself. Been there, done that.

I hope you can get some rest, and maybe find some way to pamper yourself in some small way (a massage or pedicure? A glass of wine when you have a chance to get some? Or get yourself a novel to read in the waiting room?)

More than one primary? Unusual.

If it's the Downwinders area, look into compensation.

https://www.justice.gov/civil/common/reca

Oops. Just reread your location.

Ignore this.



Edited 2 time(s). Last edit at 10/19/2017 07:55AM by auntsukey.

Nightingale, I'm glad that you have finally gotten things sorted out with your family member.

I remember with my mom that when someone arrives by ambulance, they immediately go to an examining room in the ER. No wait!

I am glad they found the problem. Fellow Canadian here. My dad had cancer three times, and the amount of time it took to discover what was wrong with him the second time was unacceptable. Severe lower back pain, and 1 year later a kidney cancer diagnosis.

The third time he had cancer they hummed and hawed and sent him from one specialist to the next wondering if them should do chemo or surgery. While they dragged their asses over several months it spread too far to many organs and he died.

There was even a point where his oncologist lied to him. I was in the room and fuckin livid.

If you listen to Sam Harris podcast he has a cancer specialist on it, and this type of this very common but thankfully getting better.

Anyway I am at peace with his death but your thread reminded me a lot of my experience and I am very OCDish, and I had to push the doctors to get answers...and well I could go on and on but that was the worst experience of life.

I sincerely hope the road ahead it better.

God, everyone is on this list and I'm sitting here with my hand up!!
This is exactly the same as a forensic files case! Person was dying, especially on weekends. He'd go to the hospital, be ok. Go back home and start dying.
This is how they found out about peanut allergies. The aunt and uncle came to visit the boy. They worked in candy, coating it in peanuts. He would go visit his nephew trailing in peanut dust. But the fevers everything that you are saying was on forensic files. They changed. Their clothes and vacuumed and the boy stayed away from peanuts!!!

The red flags you were feeling and responding to, your persistence and insistence on finding out what was wrong probably--almost certainly saved her life.

don't forget that even as she continues to recover now, you will need to pay attention to your health, rest, and recovery; loving care-giving,especially in such difficult situations is draining.

Bless you both as you both recover!