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» LymeNet Flash » Questions and Discussion » General Support » Help finding health advocate

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Author Topic: Help finding health advocate
Razzle
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I need help to find a health care advocate. I have hit brick walls endlessly while trying to get help for a specific medical issue (indirectly related to Lyme), and my family just doesn't understand enough about it all to help.

They want to help, they just don't 'get' the ins-and-outs of the medical establishment well enough to play the game to help me to get what I need. I do, sort of, but my Lyme brain is too befuddled to pull it off anymore.

So I need help finding someone who can advocate on my behalf. Any ideas??

Thanks,

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-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

Posts: 4162 | From WA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
Green_Where_You_Water
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Hey Razzle,

I know how you feel! Its so tough battling insurance companies and finding proper treatments with Lyme brain.

I am going through the same thing myself, on top of dealing with tons of logistics of filing for disability because I am now unable to work.

The only idea that I have had is to hire someone to help me out at home a couple of hours a week. Sort of like an assistant.

Of course, I really can't afford that with all the LLMD expenses....

I am trying to find in network doctors though that will treat with the 30 days of IV Rocephin for neuro Lyme.

I believe I found one and am traveling 3 hours to visit him on Monday. Hopefully he will treat and this is not a waste of a drive. I really just need him to prescribe the PICC line and the first 30 days of Rocephin.

It should all be covered then. At that point since Im sure Ill need more than 30 days, I can go back to LLMD (or order from online pharmacy to save money)

If I can get most of this covered somehow then maybe I might be able to afford to hire someone to help out. Im not sure your financial situation though.

theres also respite care.. which I believe may also be covered by my insurance. Again, not enough brain power to look into that yet with so many other things to try to get in order right now.

Im not really sure what respite care is, if its like a home helper or more like a nurse. I think its a home helper. If your insurance will cover it you should look into it. I am going to as soon as brain power allows.

Good Luck!

Posts: 66 | From New York | Registered: Sep 2015  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Are you connected with any United Way agencies or a social worker thru the local hospital?

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94524 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Razzle
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Thanks for the ideas so far...don't think I qualify for respite care, but will look into it.

How do I get a social worker? Do I just call the hospital's 24 hr. nursing line, or ?? I feel so dumb about all this, and so lost.

Thanks,

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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Keebler
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-
http://www.unitedway.org/find-your-united-way/

Find your local UNITED WAY - and then their informational and referral program.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
Your state may also have a medical ombudsperson program, under your state agencies.


If over 50, and if a member of AARP, connect with your local chapter.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
me
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http://www.patientadvocate.org/help.php


http://patients.about.com/od/caringforotherpatients/tp/Choose-a-Patient-Advocate.htm

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Lymetoo
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Let us know what you find out!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94524 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Razzle
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Thanks for the links. Not able to research this, way too much brainfog, fatigue and all the other "fun" stuff that comes along for the "ride" of Chronic Lyme/Co-infections.

This is why I need a patient advocate. It isn't just insurance, it is also finding resources that can provide my medical needs, because I don't know what is available or where to find it.

Seems so much of the available assistance is geared towards those on Medicare/Medicaid, and I don't qualify for either.

Tried talking to insurance case manager, but they weren't much help. I guess we have to be experts to get help.

Extremely frustrated.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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Tincup
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Razzle,

So sorry you are in this position. If you want to email the name of the town where you are located and your age (SS/Medicare, AARP, etc.) I will do some research to see what I can find for you.

[email protected]

Edited to add- I need your zip code too.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20318 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Jordana
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Can you pay somebody?

I don't know what they charge but there is a network of these people.

http://advoconnection.com/

Posts: 2057 | From Florida | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Looks great, Jordana!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94524 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Contact the Lyme Disease United Coalition at (800) 311-7518. They are very knowledgeable.

Website is:
http://www.lduc.org

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WPinVA
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Great link, Jordana. Maybe a future career path for some of us after we recover!!
Posts: 1737 | From Virginia | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
   

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