posted
I am pretty sure I have had LD for a decade or more. Tested positive to two bands 7 years ago but didn't flag a positive per CDC guidelines so docs kept looking elsewhere. I originally contracted it when living in NJ or PA.
I currently qualify for charity care at Vanderbilt Hospital in the Nashville, TN area because I make less than $10k per year. They don't have an LLMD there so I am looking into other options.
How does someone in my situation pay for treatment and doctor visits with an LLMD? I don't have insurance and can't work more than a few hours due to my fatigue, weakness and nervous system issues. I don't have anything to sell so that isn't an option.
Will the Affordable Care stuff that goes into effect Oct. 1st, or medicaid, help or doesn't it matter since most LLMDs don't take insurance?
Can I pay to see an LLMD elsewhere and somehow get the hospital/doctors here to treat me? (Seems like a ludicrous statement but I had to ask.)
Should I simply get whatever treatment I can here and hope for the best?
Are there any research studies, clinics, etc. that I can go to for treatment in the US, Canada or overseas that will cover some or most of the expenses?
If I need IV antibiotics, will I need to be in a hospital in the beginning or do they hook up the port and send you home?
Will I need someone around to help and if so, how often and potentially how long? I don't have family and only have one friend where I currently live and I wouldn't want to burden her since she is a single mom with an autistic son.
I've seen the movie "Under Our Skin", which I thought was a bit one sided, and have read about the controversy surrounding the two treatment positions.
How many folks with chronic or neuro LD actually make full recoveries after just a month of antibiotics? That would be the best option for me due to my financial situation but obviously I want to get better so I want to do it right the first time.
Thanks to everyone for your help. I'm trying to be proactive and need to start getting my ducks in a row b/c my symptoms are progressing rapidly.
I truly appreciate your help.
Posts: 3 | From Nashville, TN | Registered: Sep 2013
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'd find a local support group and ask others about resources in your area.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
The ACA will only help if the specific plan you sign up for covers out-of-network doctors. Most coverage for out-of-network is 50% (of the "allowed amount") or less.
-------------------- -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: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I would go ahead and schedule an appt with an LLMD. It takes months to get in.
Then, in October, sign up for a PPO through the Affordable Care Act. The plan will not go into effect until Jan anyway.
The insurance will help with medicines and tests, even if the LLMD visit isn't covered.
posted
You could try finding a LLND and start out on the herbal route. Much more affordable. Herbals can be very powerful and effective.
Stephen Buhner's associate is available for consult ($150 for 1 hour on the phone, and 2 weeks of follow-up), and his books on healing lyme and the bartonella and mycoplasma infections are $15 each.
The sites for ordering his herbs are listed in the books, or alternatively his website.
Make yourself aware of herx reactions and detoxing. Our LLMD didn't even tell me about these things, I had to find out myself.
Our daughter has been treated for lyme/bartonella for 2 years with abx and we are now using a combination of tinctures (extracted with alcohol) and decoctions (teas) to reduce her risk of relapse.
I am using a strictly herbal protocol myself and have recovered from my bartonella pain.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
| IP: Logged |
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Along with the above suggestions, you could treat yourself with the Buhner protocal.
At the Buhner website, click on "ask a question" at the top for links to support groups doing the Buhner protocal.
Start with one or two herbs that you can afford (sources for herbs are available on his website) and slowly add others as you can afford them.
I suggest starting with Cat's Claw and Knotweed. The Eleuthero will also help with energy and immune when you can afford it.
Always start with VERY LOW DOSAGES, and slowly build up to what you can tolerate without having a herxheimer.
I TOTALLY UNDERSTAND WHERE YOU ARE COMMING FROM.
I spent years and my credit cards trying to get well from "Chronic Fatigue syndrome."
By the time I figured out it was lyme, I was in a mess financially.
So, I totally "get" your situation.
Other possiblities are the Cowden protocal and the Zhang protocal. Do internet search for those.
Good Luck.
We are here to help.
ALSO, on this (Lymenet) website to the left, click on "support groups". Find one in your area and ask for resources.
Posts: 1358 | From Midwest | Registered: Apr 2009
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Don't set your hat on any help from Canada.
Canada won't even treat Canadian lyme patients.
It is more tied up in politics and red tape than the US.
Most Canadian lyme patients pay through the nose for LLMD's in the US.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Herbalcom has great prices on bulk herbs by the pound.
Posts: 1358 | From Midwest | Registered: Apr 2009
| IP: Logged |
lymeboy
Unregistered
posted
You should note that most of the good Lyme docs do not accept insurance. It's too risky for them. It isn't a scam, these docs wouldn't be able to treat properly if they were tied to the bureaucracy. I suggest you learn as much as you can. It will take a while. In the meantime ask around our our "seeking" board or support groups for your area about decent docs.
I am of the opinion that there aren't very many good LLMDs at all. It is a very big poop sandwich, I am sorry to say. But there is a way through. I'm not done by any means, but I put over 1000 miles on my motorcycle this year. I couldn't even consider this a year ago. You can do it, but you will have to get used to the flavor of the sandwich for a while.
Remember also, everyone is different. What works for some may not work for you. good luck, keep coming back here, you will find good info and good people among us.
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!
Printer-friendly view of this topic