Last Friday I was sent to the ER because I was screaming in agony and couldn't move my neck.
An enlightened young doctor had me admitted and immediately placed on IV antibiotics.
After testing no cause for my stiff neck and pain could be found. I told the doctors on my case I have chronic Lyme disease and the bacteria causing my problems was likely borrelia.
I continued on the high-dose antibiotics but they must have been pow-wowing about me behind closed doors.
Yesterday some IDSA duck a$$ came into my hospital room to tell me to never come to the hospital again. A mistake had been made. I never should have been given any antibiotics.
I told him that with the help of the antibiotics my neck was no longer immobile and I was feeling somewhat better.
He said it didn't matter, that the hospital's policy was to not give antibiotics for "chronic" Lyme and that I would have to be discharged.
He took me off all the antibiotics except for low-dose rocephin.
Today as I was waiting for my husband to pick me up a nurse got concerned because at one point I was screaming and trembling with pain. She asked a doctor on my behalf if I couldn't stay longer because I was obviously still very ill.
A young, arrogant cuss came into my room and told me that I did not belong at the hospital, that my condition, whatever it is, is chronic and cannot be treated at the hospital.
He said my claims of having Lyme disease were not verified through testing.
He said I would have to learn to deal with the pain at home and under no circumstance would I be allowed to remain at the hospital.
I told him I'd never asked to stay and WANTED to go home. It was the nurse who was concerned about me.
When my husband finally arrived and we were in the van I told him I don't know what we'll do if we can't control my pain at home.
I felt and still feel numb from the experience. So shocked I'm not even angry.
I feel like I'm dying. I told my husband I will be writing a document with all of my wishes - for my children and their futures, where I want to be buried, and what kind of funeral/calling hours I want.
I don't want to die but even my LLMD thinks I'm really bad off.
By the way, she is furious and had a big argument with the doctor who told me to never return to the hospital.
Thank God for her. But I don't know what I'll do next time I get meningitis (I think that's what it was). I guess go to a more distant hospital and get the same miserable, mean treatment.
I had three roommates during my stay. The last one was a 92-year-old lady who sobbed and insisted she wanted to leave the hospital after she watched how I was treated by the staff. She said she wouldn't stay at a place where a bunch of doctors stood around a screaming, suffering woman, not doing a thing for her, and laughing and joking.
She was shocked at how cold a lot of the doctors were. She made such a stink that they discharged her earlier than they wanted to.
When she left she kissed me on the lips and told me she loved me. She said she will write me.
What a sweet lady. My roommates and the nurses were the best part of my hospital stay.
So, I am exhausted now and will go back to bed. Bless you all.
Lymelady (Julie)
Posted by Al (Member # 9420) on :
. Have you talked to an Attorney about your plight? If not you should.
Posted by schnuddelka (Member # 8031) on :
Julie,
I am so sorry for your experience. It is so unspeakable what we have to go through. I just had a similar experience with two surgeons, and when I tried to call their office and get an appointment to 'enlighten' them about my case, I was directed to their "legal department". They won't even take my call or make an appointment.
you are in my prayers, and I hope that all works out for you!
God bless,
Jenn Posted by Dawn in VA (Member # 9693) on :
That is a horror story.
Are you feeling any better today?
Posted by TerryK (Member # 8552) on :
Disgusting doctors with no compassion. People like that should NEVER be allowed to become a doctor.
I would never wish this illness on anyone but when I hear stories like this, it does briefly cross my mind.
I hope you are feeling better.
Terry
Posted by clairenotes (Member # 10392) on :
Why must anyone tell non-LLMD's that they have lyme?! Their responses are just getting worse and worse.
I am so sorry for you and hope that you can somehow overcome this latest episode. Is there not another professional you can go to if your own LLMD is running out of ideas?
Claire
Posted by joalo (Member # 12752) on :
Julie. I'm just curious how long you've had lyme??
Posted by Vermont_Lymie (Member # 9780) on :
Julie,
So sorry for how you were treated in the hospital. They should not allow doctors like that to practice medicine.
I hope you are feeling better. I had meningitis too from lyme, but years back, right after my tick bite. I know how horrible it is.
Can your llmd put you back on IV abx? It sounds like that was beginning to give you some relief. Please hang in there and continue treatment, and let us know how it is going. Best wishes.
Posted by merrygirl (Member # 12041) on :
What a bunch of jack a$$es. That young doctor probably got into real trouble and he has been tainted with the BS.
I would contact a Lawyer or maybe the press.
I am so sorry for you- Melissa
Posted by AZURE WISH (Member # 804) on :
I am so sorry you had to endure a bunch of ducks.
I have found many times the nurses to be my saving grace at hospital stays.
Posted by Kayda (Member # 10565) on :
Oh no!!!!!!!!!!!!!!!!!
This has got to stop!!!!!!!!!!!!!!!!!
How dare they do this to someone who is suffering so much!!!!!!!!!!
Then the IDSA has the NERVE to say in the press every chance they get that they have compassion?????!!!!!!!!!!!!!!!!!
For our own safety, we must not mention that we have Lyme!!!!!!!!!!!
Something must be done.........Can you file a lawsuit???? To have drs. standing around joking and laughing at you??????????!!!!!!!!!!!! One of the HIPPA laws has something to do with adequate pain control.
How can that devil dr. say it doesn't matter that the antibiotics helped??????????????? What are their names???????????? What is the name of the hospital.
Please contact Atty. Blumenthal. This is precisely what the problem with the IDSA guidelines produce. There is no medical freedom.
Oh, the inhumane treatment, the injustice, the humiliation of it all. There's got to be some recourse.
There are secret memos sent between drs., staff & hospitals. Looks like the IDSA struck again.
Kayda
Posted by seibertneurolyme (Member # 6416) on :
So sorry for all you are going through. I was offline for about 3 months -- did not read or post to LymeNet -- just needed a break.
Hubby has been in the hospital 5 times this year. The first 2 times were similar to your experiences. Last 3 times he had a local PCP -- lucked out with the assignment from the ER. Makes a world of difference if you have a local PCP with admitting privileges.
However, feel PCP is about ready to give up on hubby. Sure hope we can keep her on board.
I am going to write a long response to one of the posts you made about being "locked in" in the next day or two.
I always carry a folder with me with most recent bloodwork and list of meds for hubby. Many times ER docs will ignore records you bring with you, but sometimes they just can't argue with the evidence.
I would defintely complain to the hospital administrator.
As for proof of chronic Lyme -- I don't try to argue about that -- it is easier to prove coinfections sometimes. Very few docs will argue with a bloodslide.
If you have not had a SPECT scan then I would suggest that test. Local PCP prescribed 6 weeks of IV Primaxin to hubby based on those test results -- of course she expected hubby to be cured after that, but it would be a step in the right direction if you could get some IV antibiotics.
Glad you are home. I am praying for you.
Bea Seibert
Posted by lpkayak (Member # 5230) on :
there is a politician in ny who has helped us in the past. he is very passionate about it. can anyone think of his name. i sat with him on the bus at the westchester rally...can't remember his name right now.
Posted by Lymetoo (Member # 743) on :
That is the worst story I've ever heard!! NOT giving abx for possible meningitis is a pretty serious mistake!!!!
It really shows the ignorance and the lack of compassion by doctors today .. and especially IDSA ducks.
I am horrified!
Your 92 yr old roommate was an angel in disguise. She was reminding you that GOD cares!
I agree....Find a lawyer and call your senator or as merry said...The PRESS.
Posted by kelmo (Member # 8797) on :
I agree, call a lawyer, you have witnesses!!
Kelly
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Lymetoo:
That is the worst story I've ever heard!! NOT giving abx for possible meningitis is a pretty serious mistake!!!!
It really shows the ignorance and the lack of compassion by doctors today .. and especially IDSA ducks.
I am horrified!
Your 92 yr old roommate was an angel in disguise. She was reminding you that GOD cares!
I agree....Find a lawyer and call your senator or as merry said...The PRESS.
Mailing Address: Office of the Attorney General 55 Elm Street Hartford, Connecticut 06106 email: [email protected] ***************************************
Posted by lymednva (Member # 9098) on :
Lpkayak said:
quote:there is a politician in NY who has helped us in the past. he is very passionate about it. can anyone think of his name. i sat with him on the bus at the Westchester rally...can't remember his name right now.
I know who you are talking about. He spoke to the group. He's a state assemblyman in NY and is very Lyme friendly.
If we can find info about the rally we can probably find his name. Try press coverage. Will Google it to see what I find.
Posted by lymednva (Member # 9098) on :
Found it. His name is Joel Miller.
Posted by 5dana8 (Member # 7935) on :
Julie
I am so very sorry
I'll be praying for ((((you)))) Dana
Posted by Kayda (Member # 10565) on :
hmmm, wondering if we should post his name or not. Maybe we should be careful with lyme friendly politicians like we are with LLMD's.
The way the hospital treated you sounds like a crime to me. Maybe we should call the police!
Kayda
Posted by Robin123 (Member # 9197) on :
If we know where to write, I think it might be good if a bunch of us from Lymenet were to write in protest of what happened to you. The CT atty gen'l, the NY assyman, etc.
Also, re your neck, have you ever tried a really good neck chiropractor? I get my neck adjusted by chiros and it relieves pain from pulled-on vertebrae.
Posted by sometimesdilly (Member # 9982) on :
Lymelady-
take care of yourself first. then go beat up those drs in every way you know how.
how they treated you is beyond disgraceful- it is dispicable.
i'm so sorry you had this experience. i hope at least partial healing comes for you soon...
hugs- dilly
Posted by lymeladyinNY (Member # 10235) on :
Thank you, all, for your responses. I am up in the middle of the night because every time I drop off to sleep I stop breathing and wake up gasping for air.
I am getting sicker again. I know there is a lot I can do and need to do but I feel so very ill.
I am going to contact an attorney on Monday but how can I prove my case when my labs and tests came back "normal" this past week?
My LLMD is putting me back on high-dose IV antibiotics this coming week but my PICC line already feels sore, like it won't be able to stay in place very long.
She had asked the ducks to place a port for me but they refused to do it.
I'm afraid I won't be able to afford IV antibiotics out-of-pocket long enough to get rid of what I'm sure is meningitis. I'm scared.
Joalo, I've had Lyme and 4 co-infections for nearly 5 years.
I told the doctors about my chronic Lyme infection because I had a feeling they would find no other cause for my symptoms and would send me home. I thought that if I told them about Lyme they might consider Lyme meningitis. Ha! That was stupid of me.
Merrygirl, I am contacting my local paper on Monday, but from past experience, I know they are reluctant to write anything bad about any of their customers, and this hospital is a big customer of theirs. I will also try my local news stations.
Kayda, the doctors weren't laughing AT me, but were part of a "rapid response team" who were called to my bedside when I was screaming and trembling violently in pain. Most of them stood around while the nurse prepared pain relief and joked and laughed amongst themselves. My roommate was outraged at their insensitivity (and so am I, now that I look back on it!).
The name of the hospital that "treated" me is Wilson Regional Medical Center in Johnson City, NY. The doctor who told me never to return is "Dr." Thomas Osbourne.
I do think that the young doctor who helped me may have been reprimanded. I mean, it wouldn't surprise me.
Bea, I will ask my LLMD about obtaining a SPECT scan. It might get me the proof I need that I have a serious problem. I am glad to hear from you as I've learned you're a great advocate for your hubby.
Thanks, Betty, for the address, and lymednva for the name of the assemblyman.
When I feel better I will go after them with all I've got. If I feel better. I can barely move as I type this.
Robin, at the hospital I was "locked-in" again for 5 hours last Thursday. Two DOs were asked to see if they could "loosen me up". They cranked my neck forward and pushed my knees up and I actually was able to move again. It was a bit strange.
I feel so hopeless. Thank God for your support, everyone. I just hope my PICC line and my husband's wallet last long enough to get rid of this. I want to return to the "good old days" of just plain chronic Lyme misery.
- Julie the sad Lymeladyinny
Posted by Kayda (Member # 10565) on :
Julie,
Pain is keeping me up, too. I will pray for you that you will be able to breathe and to sleep. I'm just shocked that the hospital physicians refused to place a port ordered by another physicians.
Julie, you were not being stupid when you told them about the Lyme. You were being responsible. They were being stupid and should know that Lyme is a bacterial infection that needs abx.
I pray you get relief soon and I pray all of us get relief from the ducks!
Kayda
Posted by Rianna (Member # 11038) on :
I can totally understand your feelings and upset, as here in the UK they are exactly the same. I had positive Lyme tests and had a hickman line fitted a year ago an obviusly was so scared and 'new' to lyme and when I got home the district nurses did not turn up to do my treatments, I was just left for days with no care - finally after so much upset a nurse stepped in and turned up to do my treatment putting her job on the line as she was so disgusted. I thought when I had my diagnosis it was the start of me getting better - I was wrong it was the start of my battle with the NHS system in the UK (I must stress everyone here has the same battle and some far worse than myself) after many months of continual trauma that I was subjected to by my UK health care system they withdrew all funding - by then I was conversant in my illness and thanks to the kindness of people here I now consult privately with a LLMD in the USA.
So........ although your journey is difficult sadly it is so familiar worldwide. This does not help you at the moment but I just needed to let you know I had a very similar experience but am moving forward now.
Rianna
Posted by Geneal (Member # 10375) on :
My heart is filled with anguish for you.
I am sure the added stress is adding to your symptoms as well.
I, for one, would definitely contact an attorney.
Did they even test you for meningitis?
Please call and obtain a copy of your medical records from this hospital.
You may need them.
If you have meningitis you need to find out if it is viral or bacterial.
I guess you do feel like you are dying.
Hang in there.
If you ask me the idiot ducks at that hospital have a definite prejudice against Lyme and/or
Chronic Lyme.....Need to find someone to diagnose the meningitis asap.
Spinal tap?
Could you get an order for one from your LLMD and have the other hospital do the test?
You need to find out what this is....meningitis is very serious.
I am sending you Angels to hold you and wrap their wings around you.
Hang in there. Call LLMD or go to other hospital.
Please, please don't give up or give in....
Hugs,
Geneal
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Geneal: Did they even test you for meningitis?
So does Lyme meningitis show up in tests?? Would it show up in a spinal tap?
Heaven help us all if it doesn't!
......I stopped in the middle of this post to pray for you....Hang in there, Julie. Posted by CaliforniaLyme (Member # 7136) on :
Julie, I am so glad you are here!!!
Posted by Vermont_Lymie (Member # 9780) on :
quote:Originally posted by Lymetoo:
quote:Originally posted by Geneal: Did they even test you for meningitis?
So does Lyme meningitis show up in tests?? Would it show up in a spinal tap?
Heaven help us all if it doesn't!
......I stopped in the middle of this post to pray for you....Hang in there, Julie.
Yes, spinal taps can be used to diagnose meningitis. If they find an abnormal level of WBC's I think in the CSF.
I was diagnosed with lyme meningitis as a result of a spinal tap given by an IDSA neurologist. This was years ago, and she gave me 11 days of IV abx due to the spinal tap results. That undertreatment may be why I am here with you all today...
Posted by lymebytes (Member # 11830) on :
Hi Julie, I am sorry you are so sick. I can tell you I too believed at one point I would surely die, getting everything in "order".
The pain I experienced is indescribable and of course doctors, ER's - no one could help.
I hope your LLMD is prescribing medications to help you with the pain, it is of the utmost importance to bring pain levels down, pain can actually weaken the the immune system.
You mention your LLMD saying you are "bad off", what does that mean, was she specific?
I had aseptic menigitis but by staying on oral abx and seeing a pain management specilaist, I made it through at home.
If there is a "next time" & you need to go to the hospital, have your LLMD arrange your treatment at the hospital of her choice & you won't have an experience like the one you just went through.
Also, if you feel your treatment at the hospital was not sufficient, you can file a complaint against any doctor with the medical board. My primary insisted I file a complaint against a doctor that did not give sufficient pain management, causing unnecessary suffering. But we have laws in place here that protect patients in pain, I hope your state does as well.
Peace & renewed health.
[ 30. September 2007, 01:48 PM: Message edited by: lymebytes ]
Posted by 5dana8 (Member # 7935) on :
"Spinal tap?
Could you get an order for one from your LLMD and have the other hospital do the test? --------------------------------------------------------------------------
Lyme usually only shows up on a spinal tap 20% of the time.
I wish you some good sucess with your pic line this week Julie ~ sounds like you had some relief in the hopsital from your IV.
I was also in horrible shape before my IV 3/4 years ago. Just about catatonic. Now I am almost back to normal. Never ever thought I could get this much better.
I was thinking about you all last night & this morning too.
Yes, but what if she has meningitis from other causes?...bacterial or viral..?
good point lymetoo
Posted by Robin123 (Member # 9197) on :
So if it's viral meningitis, would that show up on a test?
And meningitis, that means stiff neck, doesn't it? If that's what it means, then I have had it from the first year of Lyme development, and I have always had my stiff neck pain relieved temporarliy by very good neck chiropractors, altho of course no one knew why I wasn't improving.
Osteopathic adjustments were never strong enough to relieve the neck pain.
When I went on clindamycin last year, all muscle pain went to about zero for six months. What a relief.
Question: Julie, you mentioned that you have four coinfections. Whatever they are, it's my understanding it's the lyme that causes meningitis, not co's?
Posted by BorreliaBrain (Member # 7603) on :
Just to add, this story actually made me physically wretch, I was so disgusted.
How dare anyone treat anybody in pain like that? It's outrageous.
I am really sorry you had to endure this, and I want to encourage you, when you do start to feel better (and you will), to please consult an attorney about this.
First of all, they may settle with you, and then you have your IV paid for
Second, it could be a landmark case, because the attitude was so horrendous.
Here's hoping you a very speedy recovery. I'm sorry you had to endure this. Best,
BB
Posted by Lymetoo (Member # 743) on :
Robin said: "And meningitis, that means stiff neck, doesn't it?"
Meningitis is a potentially very serious inflammation:
I don't' know if I would go the lawyer route - yet - although the initial consult is usually free. But....
I would lodge a complaint with the State Medical Board (or licensing board) - you know - the same people who are always prosecuting LLMDs?
How about we start filing complaints against the IDSA ducks for a change...... see how they like being accused of wrong-doing when they are so eager to do it to other docs.....
And I would send some kind of complaint to the IDSA, too.
And of course, always send this stuff Certified Mail, Return Receipt Requested so that you can prove they actually got your correspondence....
And yes - Lyme-friendly legislators, the local newspaper - get the word out.
And if you don't know the name of your `angel' roommate, see if you can find her through some source at the hospital. She can verify your complaints and may very well be willing to join in your efforts, even help you do some of this if you are too ill to do it yourself.
I'm so very sorry for your pain and despair, Julie. And there is no doubt in my mind that your treatment at that hospital contributed significantly to your current state of mind. This is just almost beyond comprehension.
Tracy
Posted by Robin123 (Member # 9197) on :
I looked at the wikipedia entry -- definitely being called a medical emergency -- bacterial meningitis second in commonality after viral cause. Abx should be started immediately.
Well. Perhaps your LLMD could make arrangements with another local hospital for you? To let them know about you in case you have to come in in an emergemcy again?
Posted by clairenotes (Member # 10392) on :
My meningitis was both viral and bacterial. How did I know? Because it responded to anti-viral and anti-bacterials. I needed to be taking both simultaneously in order to get well.
Claire
Posted by roro (Member # 13383) on :
I had a very similar experience 3 years ago. unfortunately, you are not going to die (I say unfortunately, because many times I wish I would , the pain in my neck is so bad) I was dx w/ lyme in 95, but in 2004 thats when it turned to meningitis. I still have it 3 years later. I have permanent damage to my head, neck, spine. (white matter lesions, 2 slipped vertebra, 9 herniatd discs, facet joints, etc) this all happened in the last 3 years. it started with swollen lymph nodes under my arms, high fever, rash all over trunk, stiff sore neck. I had a LP. It showed low glucose, but otherwise normal. I heard they only show lyme in 5% of the cases. they still sent me home and said it was "aseptic meningitis" which means viral, but I now know it was the lyme. I had double vision. I got a CSF leak and had to lie flat for a week, after 5 days I was hospitalized with congestive heart failure, pericarditis, pleuritis, meningitis. then they finally put me on a couple days of IV.. I guess the heart is more important than the brain. after 8 months of the pain, I wanted to die, I finally went to the psych ward. they referred me to a pain specialist. my pain has been under control ever since. I am nto getting cured, but at least my pain is under control. for the past 3 years I have gone from dr to dr tryign to get an answer why every MRI shows more and more damage to my spine, thinking it must be an infectious process. finally I am seeing a LLMD. I don't bother going to ER anymore. Unless they think you will die THAT VERY NIGHT, they will not admit. they will release you to see your primary the next day. they dont treat anything. pain is not an emergency. unfortunately you have no proof that you had meningitis or still have it. I agree it is criminal what we are put through. what can we do about it legally? this is what I want to know.
Posted by lymeladyinNY (Member # 10235) on :
Roro, not much can be done legally, I don't think. I wonder if we'll ever win this fight and turn the tide to end this injustice.
Your story saddens me. I know how awful the pain is and sympathize for you.
I think this may be my new reality - the terrible neck and spine pain.
I'm glad pain management is working for you.
I started a new thread with more updates about my story. Of course, I've got it in the wrong forum but that's typical for me!
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