posted
My brother is currently being cared for in a nursing home in NE Pennsylvania. We have seen an LLMD who was able to help us get tested with Igenix but can't help with treatment. Problem is being in the nursing home there is a doctor there on staff that watches over him. We can not get prolonged antibiotic treatments for him there, we cannot even get him into a hospital to start IV ABX because Infectious Disease Doctor says "Lyme doesn't do this". I have no idea which way to turn. Is there any such long term clinics out there that can help? My brother is now a quadriplegic from this disease and has lost his ability to speak, I am his med POA and desperately looking for help. Any ideas?
Posts: 4 | From Warren Cty, NJ | Registered: Jul 2011
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posted
He is 39, his illness began two years ago, he has been unable to walk since Nov 2009. There have been times during this journey that he has had antibiotics for short periods of time. During these times we did some improvement but they were in short bursts. Even as recently as July when he had aspiring pneumonia and was put on levaquin for 10 days we saw some improvement in limb movement and speech. Afterwards the progress reverted back.
Posts: 4 | From Warren Cty, NJ | Registered: Jul 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Wow, so sorry for your brother's situation and illness.
The only thing I can think of is that he would have to be cared for at home while receiving the treatment he needs.
Sooooo sad.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
This is so sad. Just wanted to mention that one treatment that I've heard that counters the level of being quadriplegic or paraplegic is stem cell injections.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
He was at home being cared for until Last May when we had to take him to the ER as he was not eating and was losing weight. At that time he was down to around 114lbs, and even while hospitalized continued to lose weight. Before he became ill he was 195lbs. he is 6'2", in July of this year he had to have a feeding tube put in when he was down to 100lbs. This is pretty much his only nourishment now and he refuses to eat. This all makes it very hard for home health care unless there is someone there 24/7 to monitor and watch him every minute.
Lymetoo, yes he had a FISH test done with IGeniX which he did test positive for Bartonella, and even with this there is still nothing but denial coming from ID doctors, we just had him re tested for Bartonella should have the results next Wednesday.
Posts: 4 | From Warren Cty, NJ | Registered: Jul 2011
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posted
I don't see that anyone above has sent you a private message regarding Pennsylvania LLMD doctors. Perhaps you could send a new request asking for a private message seeking Pennsylvania doctors, and then call each and every one of the doctors on the list. (I am sorry I do not know of any Pennsylvania resources!) Hopefully you can find at least one on the list willing to intervene or advise you about better local options. I wish you the very best of luck!
posted
When you find a LLMD, can he be moved to another nursing home closer to the doctors office?
I remember when my Mother who was an amputee was in a nursing home, I paid for a private ambulance to take her to the doctors office for speciality care. It cost around $300.00 to go from Bridgewater, NJ to Morristown. That was round trip. The nursing home used a private ambulance company with special rates for their residents. They will use either wheel chair or gurney.
I would think that if a LLMD, who is a specialist, prescribed IV drugs, the nursing home would have to comply but not sure about that. I know the nursing home did comply with wound care for my Mother and also certain eye drops from her Optomologist. Other care was from the in house doctor.
If your brother has lost the ability to speak, he may have lyme induced ALS. You really need to get him to a LLMD asap.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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posted
Look on the top left side of the Lymenet page and click on "Support Groups", then click on Pennsylvania. There should be contact information on there with names and phone numbers of people.
I pray this information will help you and your brother. God bless.
Posts: 9020 | From Illinois | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I am going to pray that God will lead you to an answer for your brother to recieve the proper care for Lyme and coinfections.
With God, all things are possible.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Hopefully a helpfull tip.
Sounds like IV antibiotics might be best, but I have read that intra-dermal ABX's work just as well, if not more effectively since they are slowly released over time. This way he can have one injection and should last a few days. Please inquire if this is a possibility with the LLMD you contact.
Best of luck!
Posts: 2094 | From NY | Registered: Oct 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
My heart goes out to you...
I lost my brother several weeks ago.... He would bring up so many of these symptoms... But had very minimal medical help....... Thank God you're there for him, at least he knows he's not alone...
So the checking out LLMD"S in area. And ambulance/or nursing home change sound good......
But time is of the essence,,,so keep calling, asking ,talk to directors of the home/ board members... Neuro LLMD .LLdoc in any area .. of expertise.
Lord be with you, Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I sent you a private message.
Posts: 4682 | Registered: Oct 2000
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posted
My husband's co-worker recently recovered from being a paraplegic (loss of use of arms), being bedridden, and bell's palsy to the point where she could not eat.
She saw the famous Dr J from the movie Under Our Skin, who is currently practicing in DC. He pulsed strong abx cocktails (multiple abx at a time) via IV.
Could you get him to DC? Or maybe NYC? That may give you more options.
Do you know how to operate the feeding tube? I have friends with a child with multiple severe health problems (not lyme), and he is fed overnight by TPN (IV feeding), but it does not require attention by day.
I wish you both all the best!
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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Your brother is lucky to have you looking out for him.
Not sure of your brother's age or insurance status. But both could be big factors in how easy or difficult it is to get help.
As you probably are aware most insurance companies will not pay for more than one month of IV antibiotics.
Also, the rules could be different regarding nursing homes in different states.
Hubby has had many hospitalizations so I can relate to the difficulties in dealing with standard AMA docs. Unfortunately there are no specialized hospitals for tickborne patients and big University teaching hospitals are actually about the worst places you could go because of the IDSA viewpoint.
There are very few LLMD's with hospital privileges also.
If there is any way your brother could qualify for home health care that would make things much easier. Then he could go to any LLMD he chooses anywhere in the country and the home health care agency would follow the orders from the LLMD.
It depends on the license and level of care available in the nursing home as to whether a patient can have outside docs or if it is set up like a hospital where only docs with privileges at that hospital can prescribe meds and order tests etc.
The refusal to eat could be a symptom of babesia -- another tickborne coinfection. Anorexia is sometimes listed as a symptom of that illness.
So sorry for all you are going through. Hope you can get it figured out soon.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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