momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I live in a small town and I was at my doctor's on Monday (I do not have Lyme).
I am finished with my appointment and I'm talking to my neighbor who happens to be sitting in the waiting area and this man I kinda know (you at least kinda know everyone in town) comes into the clinic and is standing at the reception desk and I hear the gal ask him what his ailment is and he says...I had Lyme six months ago and I think it is back.
Had to leave...still is bothering me.
It just never ends.
I have more stories like this...and there is nothing I can do...that is the ripper...I know, I have tried so many times.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
posted
thats too bad, im usually comforted by the fact the people who suspect they have had it their whole lives, some of them can get better with treatment in just years...amazing really, makes my two year struggle seem like a walk in the park. stay positive Posts: 113 | From south dakota | Registered: May 2011
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Are you bothered because you didn't stay around to advise him. Upset that he wasn't going to get proper dx or tx?
Small town, you can find out who this gentleman is and contact him and offer some advice.
I feel better when I do something. Last Friday with my Holistic care massage specialist that is a Sister(nun) was working on me, she mentioned a nun that was brought in to their sister home that is really bad with Lupus.
I didn't say anything because it slipped thru our conversation....but after I came home I knew I must say something.
I called and left the Sister a message about Lupus and to remind me when I see her next what I know.
My appt is today at 3:30pm. I cannot keep my mouth closed when I know something that just might make someone look at things differently.
I want to make sure this nun is not on steriods. This group of sisters are healers and in the medical field. They use alternative stuff.
But there could be some doc injecting her with stuff that is making situation worse. I've had lupus sx and tested negative ANA many times.
But I wouldn't allow someone to pump me full of steriods either.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I can relate. I actually haven't stopped thinking about something that happened with me yesterday. I'm still beating myself up over it.
I had a patient...a young man in his early 20s who came in after a heroin overdose. Any time I tried to talk to him or get information out of him, he would just cry and say you wouldn't understand.
To make a long story short, his parents finally arrived to pick him up. He was discharged and I went in to take his IV out. He then turns to his Dad and says...hey...I think this is the first time I had an IV. Then looks at mom and says...did I have an IV when I had lyme?
My heart dropped into stomach. I didn't want to all of a sudden sound like some crazy nurse so I casually pried with some questioning. Then I said...yeah, I have lyme and have been on abx since April.
Really? Yep and I'm having a difficult time with it. We talked only briefly, and I called out of the room for an emergency. I quickly said to the mom...please don't discount any of his problems as being in his head. Remember, lyme may never go away. I then said sorry, I have to go.
Then the mom came back in as I walking from our pixis machine with meds for a crashing patient asking me if I saw her car keys anywhere. Unfortunately, I had still didn't get a chance to talk with her.
I've been upset about it since b/c I kept thinking there is a reason this kid was brought into my ER. And I blew it!
I talked to my hubby about it, and was considering looking up his number when I go into work tomorrow and calling him. But that will make me look the crazy nurse!
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
posted
momindeep .. I would try contacting him too if you feel comfortable with that and think you can help him.
philly .. at least the mom heard what you said!!! Are you "allowed" to call them??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My dear massage person did get my message and today knowing I was on the schedule thought about how it would be preceived her suggesting to this particular order of sisters.....
they take the medical doctors as gospel and if the doctor says lupus and says to pump you full of steroids, that's what will be done.
I didn't realize there was so many different orders (sects) of sister/nuns. This nun is so elderly and so ill that she was comfortably put into this home until her dying day.
It makes me sad. But I don't have the power or strength to do anything else. I passed along what I thought was needed. It's not up to me now.
TBTG, but my heart aches. I guess he's letting me know I can't fix the world. Just do what I can do.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
quote:Originally posted by Lymetoo: momindeep .. I would try contacting him too if you feel comfortable with that and think you can help him.
philly .. at least the mom heard what you said!!! Are you "allowed" to call them??
I don't know. But...and you're not gonna believe this! The mother came back today! And you know what? I STILL COULDN'T TALK TO HER! UGH!!!
I was in with an unresponsive patient. I only know she was there b/c our unit clerk called me on my zone phone asking me about keys. She still didn't find them.
Of course, it is bugging me even more now.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have had a similar experience. I met a woman whose husband tested positive for Bb and babesia but he is not getting treatment. He was given a short course of doxy and got sick again. Then he was given Mepron but he would not take it because it made him vomit.
She actually knows that he needs more treatment. I loaned her several books and spoke to her at length. She said she also talked to another person with lyme and heard the same things. But she is not going to get help for her husband because he is resisting. I told her he is not mentally competent - it attacks the brain. Just a no go. Torturous to see this happen to someone and not be able to stop it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
What I have found easiest to do is to print up really cheap business cards with your name and/or either phone or email addresses.
Then you can include a couple of website addresses as well and just a simple phrase such as "Please contact me or one of the websites listed for more info on lyme and tickborne diseases."
This way the person at least has a starting point to research or if they are really interested they can contact you personally.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Great idea Bea.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is a good idea but I have only come across three people since I was diagnosed. I spoke to each of them at length but had no effect. I just heard today that one of those people is now in a wheelchair.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
nefferdun...that's what I run into also...talk to someone and give them your knowledge and time and they still trust mainstream doctors.
Many people don't realize that doctors are not the end-all and they don't walk on water either.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[spinning smile]](graemlins/spinsmile.gif)
Printer-friendly view of this topic