posted
I have a friend who has chronic lyme (tested positive through IgeneX) and is now down to 65 pounds. My friend is 47 years old and is dying fast.
On Christmas Day, I called a Sheriff and he removed my friend "K" from her mother's house and transported her to a hospital in Schenectady, NY not far from Saratoga Springs.
This hospital refuses to recognize lyme disease and will not give "K" a G-tube to get nutrients into her body. They want to transport her to a psych ward where she has been before because her husband and family believe she is mentally disturbed.
I call the local newspaper there and a reporter showed up at this hospital but naturally they refused to talk to the reporter.
"K" is dying as I type because of all this weight loss, she is suffering from Gastroparesis that has been confirmed by another doctor months ago and I'm trying to get those records to this hospital which is not easy.
I contacted ILADS, the NY Dept. of Health, and other organizations.
Even with all that, "K" is not getting the medical care she needs. This hospital just wants to move her to a psych ward and be rid of her. If "K" goes back home to her abusive husband or family, she will die.
Her former LLMD dropped her because she didn't respond to antibiotics. I personally believe that is because "K" was given many steriod shots and as everyone knows, steroids and lyme do not mix (steriods block the effectiveness of antibiotics).
Lastest news from my friend is this hospital wants to move her to an Anorexia Private Place because they think this is all in her mind. I know this lady for 2 years and she is not crazy.
Any ideas? Deejavu
Posts: 15 | From New York, USA | Registered: May 2006
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posted
Deejavu you are a good friend. It's too bad we're heading right into another holiday weekend. Everything always boggs down around this time.
I'd keep trying to work the media angle.
Posts: 984 | From San Diego | Registered: Nov 2006
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tailz
Unregistered
posted
I wish I had some advice for you on Lyme. That was me just over a year ago. I was 88 lbs, and basically everything I was eating was coming right out the other end. I think the steroids I had been on early in 2004 did me in - two clips.
One doctor finally found vitamin deficiencies - A and D, and diagnosed me with malnutrition, reversing my menopause diagnosis.
Most doctors just wanted to send me to a shrink.
Could she have food allergies? A good deal of my weight loss was caused by an egg allergy and other food sensitivities (grains, root veggies, sugar, milk, chocolate). Minocycline seemed to be the antibiotic that cleared my diarrhea up finally, though it has returned.
If I were in her shoes, this may sound stupid, but have her eat canned peas, grapeseed oil, sea salt, grape juice.
These are the only foods that I have been able to eat regardless of what antibiotic I'm on. It's worth a try, and if I could post a picture of what I looked like then, I would. I was all bone.
Maybe you could try tumeric, cinnamon, and honey, too? These are often helpful, and I had probably one of the worst cases of Lyme or one of these bugs.
Please try this food combo though. I don't know why it helps, but it does. Maybe get her some artemisinin and TOA-free Cat's Claw, too?
They thought it was 'all in my head' and that I was anorexic, too. Please help her <3
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tailz
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posted
And please don't let her use a cell phone or cordless phone.
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merrygirl
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posted
Let me know if I can do anything?
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
There are LLMD's in Albany, New York-near Schenectady. I don't know their names-perhaps you could find out. Albany Medical center might be more receptive to lyme. You are a good friend, your friend is lucky to have you.
Posts: 561 | From eastcoast | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I am so sorry to hear about this. Is there a patient advocate?
I wish you the very best of luck - take care of yourself, now, too.
I feel outraged for you. Can you contact a local domestic abuse center for advice on handling the husband?? If you could only get him out of the decicion-making process, it seems that things could go more smoothly. And if the hospital staff were to know that he has a history of abusive behavior, then maybe they'd be more responsive to your needs.
It also is a good idea to talk to a patient advocate at the hospital, if only to get advice regarding all of your rights and options in front of you.
Will your friend's old LLMD not even talk to her anymore? He sounds terrible in that he dropped he for being so sick. But maybe he could be reached somehow and persuaded to talk to the hospital doctors on your friend's behalf, explaining that she does indeed have chronic lyme disease.
Finally, if she is forced to go either to the psych ward or eating disorder clinic, I think the latter would be much more preferrable, having witnessed both myself. At the ED clinic, she will probably have more attentive nurses monitoring her vitals around-the-clock.
Good luck. Take care of yourself too.
Posts: 390 | From Oakland, CA | Registered: May 2007
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tailz
Unregistered
posted
In defense of her husband - my husband was abusive, and he had a brain tumor, so it might be something he can't help.
He was heavily into electronics and a heavy cell phone user. I really don't think that any guy is violent because he really wants to be. I think they all have infected brains, and possibly tumors.
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TerryK
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Member # 8552
posted
If your friend weighs 65 pounds, regardless of the reason, someone at the hospital better be doing something to keep her from starving to death!!!
A think a patient advocate is a very good idea. Maybe get her to another hospital that is lyme friendly if there is such a thing. How about the Columbia Center?? Will/can they help?? I don't know where they are located compared to you but given your friends dire sounding circumstances, perhaps they will try hard to help. I wasn't very impressed with their treatment of Bea and Steve though. Maybe Bea can give you some information/tips regarding Columbia?
I'd be inclined to inform the current hospital in writing that she has a lyme diagnosis (if she does have a formal diagnosis) and a diagnosis of gastroporesis. Maybe not threaten them outright but something subtle might be helpful.
If she has a positive IgeneX test is it CDC positive? That might go a ways in getting her some help. If not, but it is IgeneX positive, I think there is something mentioned on the test results that it is 90 some percent likely that the results mean that the patient has lyme disease. Perhaps mention that if you can verify it. Just throwing ideas out there.
Is there anyone in her family that you can get help from?? Aren't they worried about her dieing???
Maybe contact the doctor who wrote this article and ask if she has any idea of what you should/could do to help your friend?? I think this doctor is a member of ILADS and a psychiatrist but I'm not sure. In any case, she may have some ideas.
My heart goes out to your friend and to you. I know how frustrating it is to be in such a dire situation and not be able to get help.
Your friend and you are in my prayers. Please let us know how your friend (and you) are doing when you can.
edited to add: Since time is of the essence, you may want to try to get an attorney to write a letter.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i sent private message with close llmd phone number
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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WildCondor
Unregistered
posted
Sent you a PM with a gastroenterologist (3 of them) and an LLMD. I'm in the same area. Hope it helps.
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
This story is heartbreaking and I pray that your friend can get the help she needs.
How criminal that they won't even tube-feed!!
I think being sent to the anorexia clinic might be the way to go - for now - just to prevent her death. I can't imagine that they'd deny her a feeding tube there!
Just when I think my own story is horrible, I read something like this.
From a fellow upstate New Yorker, I will pray for you and your friend.
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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bettyg
Unregistered
posted
pmed you a name of NYC neurologist highly recommended by dr. b!
i've never come across this before; so no knowledge.
posted
I agree -- Lyme activists need to get involved with this immediately. She does not need a psych ward. She needs medical attention and advocacy protection. Thank you for being her friend.
Posts: 13171 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
i just heard back from:
lou bachman has no ideas on this.
my california friend read all the suggestions and did NOT have more to offer, but mentioned perhaps the family was suing the dr!! ************************************
robin123, if you come back to this post, your HOME EMAIL IS FULL; please delete..
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Dr. B. in NY, who recently closed his clinical practice, saved my neice who was in a similar situation about 10 years ago.
She lost down to 68 pounds when she was a teenager. She had adhesions in her intestines & I don't know what else. She's alive today because of this caring intelligent man.
You may want to contact Dr. B. He might be able to advise you of what steps to take, and may contact a colleague on her behalf. Post in "Seeking a Doctor" for his contact information.
You've had some great advice:
1. contact domestic violence center for advice on how to get the husband out of her life. Medical neglect is abusive and life-threatening.
2. she must give medical power of attorney to a trusted friend who will act on her behalf.
deejavu, do you have the time and resources to be doing all this footwork? If you need help, ask for it. People here will help make phone calls. Are you close enough to visit her?
Someone here has the contact information for the author of Bell's Palsy of the Gut...and I think that information is on one of her publications or website. I called her once when my daughter's gut shut down for 6 weeks. She returned my call pretty quick.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hshbmom
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posted
I sent you a private message with Dr. VTS' contact information.
What's new today?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Vermont_Lymie
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posted
Sent you a PM about a doctor who might be of assistance.
Posts: 2557 | From home | Registered: Aug 2006
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tdtid
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posted
This story is extremely heartbreaking and one of those that let's us realize just how mess up the medical system is. I can only imagine how frantic you must be.
It sounds like you are an amazing friend and have tried to many angles to get your friend the help she truly needs. I see you have been sent many PM's regarding various kinds of doctors, perhaps in the gastro field, which may be your best bet.
But as I read your note...I couldn't help but feel you were going to go head to head with a totally impossible medical system and if it were my friend, I'd go the angle of:
Ok, she needs physchilogical help as you are saying, so I'd like her to see Dr. Fallon. Get her tranferred over to the New York University. And if you can't get your friend to see him, I'm sure Dr. Fallon has other colleagues that are able to deal with LYME.
Please please keep us posted on what happens.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I truly hope she will obtain the care she needs. In the meantime, if she is transported to those that treat anorexia, I hope they are skilled enough to recognize there are other medical conditions causing the anorexia.
Posts: 65 | From Burbank, CA (recent) from Midwest | Registered: Apr 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good morning,
I was just notified of this post... or just saw it this morning. I am so sad to hear this is happening.
I don't know IF I can do anything.. but you do know I will try.
Can you email me the name of her former LLMD... and the one you have who won't get involved... so I can get a starting point?
lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
TC - I am praying that you will know what to do to help all those involved. Thank you, TC.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
this story breaks my heart, because i went through almost the exact same thing 3 years ago, psych ward and 80 pounds and all. if i'd had an advocate like you at the time, maybe i wouldn't have ended up committed, drugged, and locked away for five months.
thank you so much for doing all you can to help your friend.
posted
Dee-I have an idea! Why not save time trying to track down an LLMD and have her follow your protocal ?
Congratulations BTW-"I am a success story and didn't get better from using a LLMD. I used alternative medicine, immune boosting supplements (still take those) and lots of detoxing (still do that) and have been in completely remission for over 2 years now. I wish I knew of a LLMD that would help my friend but I do not.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm so sorry about your friend, Deejavu.
I hope you can get her the help she needs.
I'm trying to figure this out, perhaps you can help me understand:
quote:Her former LLMD dropped her because she didn't respond to antibiotics. I personally believe that is because "K" was given many steriod shots and as everyone knows, steroids and lyme do not mix (steriods block the effectiveness of antibiotics).
Are you saying that a "LLMD" gave her steroid shots? They take down the immune response. A LLMD would know better.
[ 30. December 2007, 05:30 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Cobweb
Unregistered
posted
If your friend signed herself into the hospital-she can sign herself out.
But I'm guessing if she was dying as you typed your message on the 28th than it's too late.
Too bad no one intervened when she was at 80 pounds like Heiwalove who has lived to tell the tale of her experience at least.
Ps- I know how to drop an NG tube, but I'm too far away to be of much help with that.
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1) Decide on priorities -- first priority is obviously to get some nutrition into your friend -- don't waste time and energy trying to get treatment for Lyme and tickborne illnesses at this point -- we all know what a long process that is
2) Is the person conscious? Hospital should be able to provide copy of Health Care Power of Attorney or Health Care Proxy paperwork for your friend to complete -- would suggest getting someone such as the hospital chaplain or a clergyman to witness her signature -- someone who is not likely to be questioned regarding undue influence or questionable integrity
3) Weekends make it so much more difficult to contact hospital administrators, but if you create enough ruckus I am sure there are emegency contact numbers for the people in power
4) Put things in writing -- For a local hospitalization I typed up a list of tests that we had requested from the PCP and that she had refused to do -- Addressed the letter to hospital administrator and the doc -- showed it the PCP first and she agreed to do 3 out of the 4 tests -- never actually gave the letter to the hospital administrator.
Listed the name of the test and briefly stated why we wanted it done -- for example -- chest CT -- to followup on a prior abnormal test result
During hubby's recent New York hospitalization I hand wrote a 4 page summary -- gave a copy to nurses to put in hubby's medical records -- admitting doc found it when he next made hospital rounds -- doc immediately went to see hospital attorneys before talking to us
5) Some hospitals have both health care advocates and case managers -- just call the hospital switchboard and ask for the hospital administrator -- tell them you want to make a complaint against a doctor -- I waited 24 hours for a return call from someone, but after getting connected to the hospital administrator's office someone called me back within 15 minutes
6) You do have the right to fire your PCP or admitting doctor -- the hospital would have to appoint someone else if you don't have someone in mind -- could be a delaying tactic.
7) Can sign out of the hospital against medical advice -- hubby did this in New York when admitting doc could not be reached by page or cell phone -- best to have some alternative plan before doing this -- hubby had an outpatient appointment early the next morning and it was a 45 minute drive to the other doc
8) Psych admits are a little more tricky -- if not voluntary then hospital must "prove" that patient is a danger to himself or others -- your friend's weight could possibly be considered a danger to themselves I think
9) If you feel your friend should be on a heart monitor or needs oxygen or IV fluids then be sure and put that in writing -- most psych facilities will not accept patients with obvious medical needs
10) If the patient is on medicare then they have the right to not be dismissed from the hospital if they feel they need to stay longer -- there is a form to sign -- pretty sure the hospital has a 2nd physician review the case and make recommendations -- know someone who did this -- think it takes a couple of days to get a decision from medicare
Good luck and be sure and let us know what is going on.
Bea Seibert
[ 30. December 2007, 03:44 PM: Message edited by: seibertneurolyme ]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I was in the same situation in 1992 and the steroids almost did me in. They misdiagnosed me with chrohns disease when it was lyme disease. They were ready to put feeding tubes in me. The drug reglan helped me stop the nausea enough to start eating. The diflucan brought me up another notch that was prescribed by the lyme specialist. After steroids my bowel shut down for 12 days. I have never felt so sick in my entire life. Your friend belongs in a hospital the way it sounds and hopefully in the care of a lyme literate physician and any other specialists that can help. I hope she gets the care she needs.
Posts: 2 | From new york | Registered: Dec 2007
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hshbmom
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posted
Did this lady get the help she needed?
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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tdtid
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posted
I'd like to know also. I've been following this thread but since I sadly had no advice to offer, I just kept reading. Please give us an update if possible.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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merrygirl
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Member # 12041
posted
Well I am not directly involved in this but it was posted on another site as well.
Since there has been no update I will fill you in.
I have been waiting for someone to post an update here for a while hasnt been done so that is why I am posting this.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
-
Thanks for posting that. I was wondering how she is doing.
Here's hoping for better days.
mentioned earlier in the other thread, Green Vibrance, is the very best greens powder I've found. It only has 3 grams of protein per serving, so I usually follow with a protein drink - or add it to the green drink.
posted
my pc has been giving me fits here on lymenet! i can't access it, could someone give me a brief summary siince i was involved in this during wee am hours too?
last i heard from poster; 65 lb. woman was DISMISSED next day from hospital to her MOM, and basically to go home to die. anything more happening? thx!
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merrygirl
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posted
hey Betty!
Yes she was sent home to her mom and I guess she has been a little bit difficult as far as trying to help herself, but it sounds like she was just starting to do a few things.
This is obviously me paraphrasing from another site...
Melissa
Posts: 3905 | From USA | Registered: May 2007
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