timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi all~
I will be helping to put on a 4 hour lyme conference at the end of March for our hospital nurses.
If you, as a lyme patient, has had any experience interacting with nurses OR hospitals with regard to your lyme, please write out a BRIEF description of what happened.
Try to keep it to one paragraph if possible.
The goal is to educate the nurses as to what lyme looks like in someone. How it got missed previously in some people (like your selves)...or how it got diagnosed in a hospital setting.
ANY experience that you've had, please share.
I want to keep it short, for we may put these on power point and share the stories on a screen...or they may get printed out and shared as a handout.
Thanks in advance....
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Oh gawd--there is no brief way to explain my experiences Timaca!
I was hospitalised for 5 days due to herx reaction while on IV rocephin in 2001. The hospital did practically nothing for me. I had high liver enzymes and a full body rash that was itchy. The rash had tiny red spots around where the hairs came out of my body. It was thought I was having an allergic reaction. I had swelling of the menenges (sp?) and that gawd awful Lyme headache. I went to the ER and was almost sent home with no relief, when I told them I would kill myself if they didnt give me something for the headache.
Then I was admitted as partial psych patient. That was humiliating and degrading. The Lyme/menenges headache is extremely painful. Many get relief only with a lumbar puncture. (not that I am advocating that) I just think that hospital staff should be aware of this type of pain and be compassionate about the need for relief to patients.
2 very BAD things happpened while in-patient: I was given way too much benedryl and flatlined, passed out puked all within 60 seconds of eachother. I really think I almost died. If my partner had not been there and said STOP YOU ARE KILLING her the nurse would have kept injecting more benedryl thru my picc line. I was incapacitated and could not speak for myself.
Another thing was that no one had any clue about what Lyme was or anything about it AT ALL. One nurse asked me if I knew when the rash would turn green.
no kidding
It was later determined that I was experiencing a herx reaction and NOT an allergy. This is tricky to determine at the time I realise. But more education is needed for ER staff and hospital staff about herxes. The rash was my skin trying to detox. Epsom salt baths were the most relieving thing I could do.
That was as short as possible. You can edit as you see fit!
You rock timica! I am so excited that you are doing this! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
My only hospital experience was also related to a herx. Not only do many medical people not know about Lyme, they definitely don't know about herxheimer reactions, even though these occur in syphilis and relapsing fever too.
This was a heart herx right on schedule in third week of a new IV drug. Went to ER in the middle of the night because the heart symptoms were more frightening and severe than any I had previously, which were plenty. I knew all about tachycardia, etc, had had echos and ekgs and holters. Was not easily upset at that point.
When I got to the ER, the nurse or whoever did the initial contact said yes, it did seem like my pulse was irregular. She seemed able to believe that something might be going on.
However, the doctor was very dismissive, made me feel like a hypochondriac. Told me the only heart involvement of lyme was heart block and I didn't have that. Had no clue about herxheimer reaction. Told me that I couldn't feel my own heart beating. Meanwhile, I felt like I was inside a drum someone was pounding. And it was not a good tune.
At that point, after some testing, they didn't find anything and I went home. Had the same experience several nights running until the drug was out of my system, but did not return to the ER. Decided death would be preferable.
Edit that last sentence out if you like.
I should add that later I read a newspaper article about a man who was diagnosed with lyme for the first time (after previous symptoms for some time) by an ER doc at the same hospital. Don't think it was the same doc. Just happened that he got one better informed. So, it wasn't the hospital, it was the personality of the doctor that mattered.
On the other hand, that hospital now has a chief of staff who is an infectious diseases doc, and he has a policy of turning away anyone who doesn't have a CDC positive WB. This is in his private practice elsewhere. People are unable to get Lyme treatment if their antibodies don't cooperate. I am sure he knows that the CDC surveillance criteria are not meant for clinical diagnosis, and that this behavior is therefore inappropriate on his part.
In the defense of medical people who might have to figure out allergy vs. herxheimer vs. serum sickness vs. worsening of symptoms due to disease flare.....this is not easy to do. Sometimes I have only been able to figure it out in retrospect. A nurse once told me there was some blood test that would at least identify serum sickness, but I don't remember what it was.
This is probably already too long, so just chop out the parts you want, if any. My last comment is that the visiting nurse who came to the house to help with my central line, when I first got it, was really a gem. Very helpful, built up my confidence, which was necessary because medical things in general have me shaking in my boots.
[ 18. February 2006, 12:58 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
We are in such a lyme endemic area that the nurses I have had contact with, mostly non lyme initially, can spot it right away!
I have dealt with hostice quite a bit in the past couple of years. The nurses have all kinds of lyme horror stories to tell.
Posts: 1572 | From Pa | Registered: Jun 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Way to go Timaca
I went to a doctor and she said I have lymphoma because I have swollen nodes everywhere. I tell her it is from years of lyme. Like an idiot I went thru two surgury,s taking nodes from my armpit,groin and abdomen. She doesn't find anything and comes in the next day and screams and rants at me.
The second is when I had IV in 94,I had to live on a friends floor in the corner of her living room for 6 weeks and the only contact I had was a nurse who would come in and check my line & vitals. She was colder than ice with an attitude like can't wait to get out of here. I don't think she thought about me at all . Just the money.
I think if she if she only said "how are you doing today" or "I am sorry to hear about the headach's" and really meant it-That would have gone a long way.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I went to the emergency room on a Sunday, because my left pinkie was swollen and very red and tender, and the redness was spreading. I was coaching a lot of gymnastics, and thought I might have broken my hand.
I asked the ER doc if it could be Lyme. He said, "It couldn't possibly be Lyme." He gave me oral prednisone and a steroid cream.
One week later, the treatment is over and the symptoms are back, and worsening. I return to the ER. (They did my initial diagnosis, thought that is where I should go.) A different doc is on duty, he x-rays my hand, sees no break, puts my hand in a cast anyway. When I asked if it could be Lyme, he said it could be, but that they would not test for it, as it was not an emergency procedure.
Five days later, the swelling migrates to other joints, and I go to my local walk-in doctor and get the blood tests. By now (over 3 weeks after the onset of symptoms) my whole hand is purple to the wrist. I tested CDC positive via Western Blot for Lyme disease.
I believe the delay in proper treatment and the use of steroids contributed to the disease becoming more ingrained in my system, and more difficult to eradicate.
[Shazdancer -- happy to give you my name and contact info if you want it]
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
Tamica,
I've had 12 major surgeries and many short skill stays. I'll report the ones that really stay in my mind. 1st, I went undx for chronic lyme for 34 years from age 21 - 55 till June 04.
* I had gallbladder out and was in 10 days. Developed staph infection bad which occured on Mother's day. RN would NOT call MD due to holiday for spouse. My bad infection went from my side to all my butt, back, and stomach. They should have had ER dr. come up & poke around in my 2 incision holes to release all the puss infection.
* Same operation had collapsed lung. I did all the deep breathing coughs but still got it. Every day I had events like this happening to me.
* Every surgery, I asked for a room in corner of hospital NOT by stairway, nurse's station, or any vending machines. NOISE/SOUND make it impossible for me to relax or sleep. Note is on door where they get my meal tray and on my door, KEEP DOOR CLOSED. Visitors, knock and enter when acknowledged.
* Every surgery, I need my room completely dark. I have RN put on door, DO NOT PUT ON LIGHT OVER PATIENT until she covers her eyes with pillows.I
* I have irritable BLADDER/bowel bad. I tell the nurses I need to go, and use that awful bed pan. I do go, then I hear you complaining outside my door. It's NOT my fault I have overactive bladder.
* Once I couldn't wipe myself a BM, she took that rag and hurt me terribly running it up my butt! Wipe us TLC just like you'd like to be.
* I'm allergic to smells & surgical tape. I've told them this. One female MD wrapped my entire back with it after an epidermal shot; ALL my skin came off with this tape!
* Please check that you have necessary 3M MEDIPORE NO STING spray for patients like myself! My skin would appreciate it so much! Spray goes on first then paper tape.
* When I had my 2nd colonoscopy, I had anethesist put me under completely. 1st one I heard dr. talking to me entire time, You've got to breath Betty over & over. 2nd one I didn't know it took place at all.
* If possible, it's best if we have our PAIN med machine near us! When we hurt, we push for immediate pain relief.
* Thanks Tamica for asking about our hospital experiences so these RN' CAN help us and understand us.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Timaca, a paragraph..I will try..
{My daughter, to my knowledge, has never had a regular ward or ER hospital nurse,be anything but compassionate. This is so opposite to the way she has been treated in the psych ward and by the ER Docs..
On her last visit, she was told by the ER Docs that she could not have all of those diseases and that Babesosis is not even in our area.One told her if she continued to take all of those meds, she would not have enough memory left to ever go to college.}
Now she does not want lyme treatment..She thinks it is something else..So it has caused her to be non-compliant..Not that she wanted to take meds anyway..
Also when she had a picc, we had a home health nurse, that has gotten quite an education..I now think she is becoming an excellent advocate and recognizes symptoms.
Good luck.
Posts: 2360 | From SE PA | Registered: Mar 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Don't worry about trying to keep your comments to a paragraph. I can see that that particular idea was not possible!
I'll be printing these out to distribute in a written format.
Keep the stories coming!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Over 7000 ft in a forest - hmm - I'm at 7000 feet in the desert...
Went undiagnosied for 15 years, from 9/90 to 9/05. Lost my life over and over. Still am. Where I live Lyme is not yet an issue, so that it took long time for diagnosis. So, probably in part because Lyme is unknown here, in my hospital stays, wacky things happpened, because of the Lyme, co infections, etc...
First time - had a hysterectomy because of symptoms, (probably not needed if they'd known about the Lyme) - staff did not read the note "allergic to laytex" and did the surgery and post op using laytex materials - I subsequently swelled up until I looked like I was about to have twins (I weighed 102 at the time). Ended up with emergency 2nd surgery to figure what happened - I had gotten terrible peritonitis from the first surgery and the delapidated immune system, and lost my appendix, part of my digestive system. Was treated for a week w/ IV antibiotics - no one could understand what was happening - in retrospect, they said it all could have beeen avoided if we'd known abut the Lyme. I also got pneumonia 3 tmes in the hospital in 6 months, and the doctors couldn't understand that I had a damaged immune system, even after seeing all the files I brought with me, and so did not take proper precautions to protect me from pneumonia.
When people tell you they have allergies, or sensitivities to cleaning supplies, don't put them in a room with the person usng the harsh cleaning chemicals to disinfect - move the bed for a while if cleaning needs to happen.
I know you are used to wacky patients making up stuff in order to get attention. If someone says they have Lyme disaease and as a result have a lot of strange symptoms and requests, don't assume they are being a pain in the *** - most often, it's just a very real issue that you don't know about. Give Lymies credit - you don't survive this disease if you are stupid or don't learn about your body and medical issues. if they say they need their medication at a certain time, they are not just trying to be a pain to you - they reallly need it.
If they say they have a specific bad reaction to a class of drugs, don't give them anyway just because you've never heard of that reaction, and it's backwards to what you know. Many of us have paradoxical reactions.
Don't tell patients things like - "really, a spinal tap won't hurt at all" - mine caused the worst migraine of all time, and lost my ability to walk to the bathroom for 2 days, was screaming whenever light touched my eyes - my poor boyfriend, now ex b/c of the stress of living with a -lymie - had to do the bedpan duty when the hospital said "you're fine, justa alittle headache, go home and take aspirin.
Remember, we look a helluva a lot better than we feel or are. Think hard and long about how our bodies will react (usually very badly) to any invasive procedure before you decide on it.
Talk to their LLMD, get the scoop.
I had malabsorbtion syndrome and went from 102 to 90 lbs - and had to wait 12 weeks to get into a hospital, even though it was clear I was dying, often in hypoglycemic shock, and badly dehydrated. I was accused of bulemia and anorexia, until they saw me eat 4000 cal/day and still lose weight. When they couldn't figure out why i was so sick, (16 doctors, not a LLMD in the bunch) they sent me home with the instructions to write my will and get ready... DON"T GIVE UP ON US - WE NEED YOUR HELP!
Know the symptoms - any halfway decent doc/nurse who knew the symptoms would have diagnosed me within 30 minutes.
And please - just treat us with respect and kindness - this is hard enoug without the criticism, the harsh / rough treatment, etc...
To be honest (not in the hospital but when I have to travel or etc,) when I am too tired to be the lyme advocate and teach people - i just tell people I have an "auto immune deficiency syndrome'. They usually miss the wording, and think "AIDS" - and all of a sudden, I am treated with kindness and respect, where moments ago I was treated as a malingerer. sigh. Not that i'd wish AIDS on my best friend (he had it) or worst enemy - but having the sexy disease does get you a glass of water and a seat instead of an angry stare.
-------------------- Forgiveness is the fragrance that the violet sheds on the heal that has crushed it. (Mark Twain)
"It's only after you've lost everything," ... "that you're free to do anything." (Chuck Palahniuk, Fight Club) Posts: 24 | From somewhere outside Boston, MA | Registered: Feb 2006
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bettyg
Unregistered
posted
quote:Originally posted by lymiebabe:
Over 7000 ft in a forest - hmm - I'm at 7000 feet in the desert...
Went undiagnosied for 15 years, from 9/90 to 9/05. Lost my life over and over. Still am.
Where I live Lyme is not yet an issue, so that it took long time for diagnosis. So, probably in part because Lyme is unknown here, in my hospital stays, wacky things happpened, because of the Lyme, co infections, etc...
First time - had a hysterectomy because of symptoms, (probably not needed if they'd known about the Lyme) - staff did not read the note "allergic to laytex" and did the surgery and post op using laytex materials - I subsequently swelled up until I looked like I was about to have twins (I weighed 102 at the time).
Ended up with emergency 2nd surgery to figure what happened - I had gotten terrible peritonitis from the first surgery and the delapidated immune system, and lost my appendix, part of my digestive system.
Was treated for a week w/ IV antibiotics - no one could understand what was happening - in retrospect, they said it all could have been avoided if we'd known abut the Lyme.
I also got pneumonia 3 tmes in the hospital in 6 months, and the doctors couldn't understand that I had a damaged immune system, even after seeing all the files I brought with me, and so did not take proper precautions to protect me from pneumonia.
When people tell you they have allergies, or sensitivities to cleaning supplies, don't put them in a room with the person usng the harsh cleaning chemicals to disinfect - move the bed for a while if cleaning needs to happen.
I know you are used to wacky patients making up stuff in order to get attention. If someone says they have Lyme disaease and as a result have a lot of strange symptoms and requests, don't assume they are being a pain in the *** - most often, it's just a very real issue that you don't know about.
Give Lymies credit - you don't survive this disease if you are stupid or don't learn about your body and medical issues.
if they say they need their medication at a certain time, they are not just trying to be a pain to you - they reallly need it.
If they say they have a specific bad reaction to a class of drugs, don't give them anyway just because you've never heard of that reaction, and it's backwards to what you know. Many of us have paradoxical reactions.
Don't tell patients things like - "really, a spinal tap won't hurt at all" - mine caused the worst migraine of all time, and lost my ability to walk to the bathroom for 2 days,
was screaming whenever light touched my eyes - my poor boyfriend, now ex b/c of the stress of living with a -lymie - had to do the bedpan duty when the hospital said "you're fine, justa a little headache, go home and take aspirin.
Remember, we look a helluva a lot better than we feel or are. Think hard and long about how our bodies will react (usually very badly) to any invasive procedure before you decide on it.
Talk to their LLMD, get the scoop.
I had malabsorbtion syndrome and went from 102 to 90 lbs - and had to wait 12 weeks to get into a hospital, even though it was clear I was dying, often in hypoglycemic shock, and badly dehydrated.
I was accused of bulemia and anorexia, until they saw me eat 4000 cal/day and still lose weight. When they couldn't figure out why i was so sick, (16 doctors, not a LLMD in the bunch) they sent me home with the instructions to write my will and get ready... DON"T GIVE UP ON US - WE NEED YOUR HELP!
Know the symptoms - any halfway decent doc/nurse who knew the symptoms would have diagnosed me within 30 minutes.
And please - just treat us with respect and kindness - this is hard enoug without the criticism, the harsh / rough treatment, etc...
To be honest (not in the hospital but when I have to travel or etc,) when I am too tired to be the lyme advocate and teach people - i just tell people I have an "auto immune deficiency syndrome'.
They usually miss the wording, and think "AIDS" - and all of a sudden, I am treated with kindness and respect, where moments ago I was treated as a malingerer. sigh.
Not that i'd wish AIDS on my best friend (he had it) or worst enemy - but having the sexy disease does get you a glass of water and a seat instead of an angry stare.
Breaking up so we neuro lymies can read, and double space in the future so your story is clearer for all. Thanks so much.
Wow, Babe, you have been thru the works and so many identical things that I have too. My heart goes out to you.
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