Hi Everybody. I have been offline for months due to unbelievable fatigue and confusion. It has been two years since I began lyme treatment and
I think I have probably tried every combination of meds you can name. I tremble, stammer and live with constant pain and exhaustion. My LLMD says that it is the miserable neuro lyme affecting my brain and keeping me from recovering.
But, in spite of my age and long illness (22 years of it) my well known and respected LLMD figures I have no choice other than to get a shunt or port installed for daily IV Rocephan.
I had a port for 6 years to receive IV meds for pain so I know the drill, as does my husband. But nowadays I guess that the first choice is the shunt and that is certainly easier than a port. After 8 tries they gave up trying to insert a PIC line so we know that is out.
We are old and poor, living on Social Security and Medicare. One doctor told me to hang on and promised to help me get the meds I need (IV's)...but I am not at all sure that can happen.
We are perfectly able to manage at home, but Medicare won't cover it then. We live way out in the sticks, up two flights of stairs. So daily trips to an infusion center would be very difficult for us. It took all I had and then some just to get to the doctor.
In January our wonderful government will cut Medicare by 27%. I don't know what we will do. We spend more than half our income on medical now. Our 401K's are long gone along with our "rainy day" funds.
Our doctor said there is a Bill before Congress to get home health care paid through Medicare, but he said it had little chance of passing. Lobbyists for us are not paid enough, I suppose.
Is there a resource unknown to us? Can we get Rocephan overseas? How does it work for you, how do you pay for it? Is it worth the effort?
My family are very worried about me. I seem to be getting closer to Parkinsons and that is awful to think about. The kids want us to sell out and move, but we are both ill and simply unable to do it right now. Our kids are stretched to the limit, so they are unable to help us very much.
If I could get better, at least to the point of functioning somewhat, we might get organized enough to move. But with both of us fighting lyme disease it is hard to get supper, let alone plan a move.
We need to form an effective Lyme Foundation to provide care for those unable to help themselves.I am willing to bet that a great percentage of homeless people have lyme disease or some sort of disabling illness. Our country's lack of care for its weaker citizens is shameful and inexcusable.
My husband's many patents helped to develop wireless communication and his developments still get thousands of "hits" daily. I moved more than half a dozen large companies into rural areas to create jobs for hundreds of people.
We were both touted for our accomplishments and could be continuing to contribute to the growth of America. But we are sidelined by illness and forgotten by those who benefit from our work.
I am writing as often as I can and hope to get enough brain power back to set up a website...I am too confused now. My granddaughter is urging me to write and she may help me set up and manage a site when I am able to do it. It is my top priority.
Please let me hear privately from you if you have any advice to whisper in my ear.
Posted by Lymetoo (Member # 743) on :
I'm signing off .. but here is some info that was over in General Support:
I got my rocephin free with doctors approval. I had to buy all the supplies tho. Hope this helps
Gael
Posted by gmb (Member # 23562) on :
See if your prescription plan will cover injectable rocephin (generic). Hopefully you can get a 30-day supply for your generic script co-pay.
If so, see if your doc can alos get you a script for just the saline bags and other misc items and mix your own IV solution. An infussion pharmacy should have all you need.
Google the booklet "Infussion for Lymies" and read thru it. It has a list of all supplies needed with simple instructions. I think that the author was also from CA and may help point in right direction for cheaper supplies.
good luck
gmb
Posted by WIGGY (Member # 15377) on :
With Part D Medicare - I pay 39.00/month + 300.00
for supplies as my husband mixes via infusions for
lymies book listed above. I've been on Roc for 1
year and getting slowly better, want to go off
soon but worried about
relapse! I'm in a wheelchair but have gone from
30 feet to 300 feet.
Posted by twicebitten (Member # 5412) on :
So, if a doc writes a Rx for rocephin, you can order it for $39 a month? I know you need the supplies too, but how long does the $300 worth last?
I'm worried b/c I can no longer afford to go to my llmd, and travel the 1,000 miles.. I'm wondering if I can get a local doc to write the rx, and get a picc line or something, then maybe I can get more IV tx. I only had it for 3 months, years ago.
I know I'd probably need to do it for a year or more, but if it would truly help I'd do it. Swallowing the pills is getting harder each day..so many..
I have medicare too, but it's secondary to my husbands work plan which is primary.. basically medicare (parts A and B) are there to pay for anything BCBS doesn't pay, (if they cover of course..)
thnx
Posted by WIGGY (Member # 15377) on :
You will have to check with pharmacy - can u mix it?
300/month for supplies + 39.00 is Humana part D
Medicare but I order the cheapest rocephin - see
book on infusions for lymies. You have to tell
pharmacy "no substitutions" or else you can go into donut hole
Posted by glm1111 (Member # 16556) on :
YOU CAN GET IT FREE FROM ROCHE IF YOUR DOCTOR WRITES A SCRIPT FOR IT!!!
You don't have to pay anything!
Just Google ROCHE ROCEPHIN NEEDYS MEDS
Gael
Posted by twicebitten (Member # 5412) on :
I've been googling and googling, but can't find a Roche free or needy meds program for Rocephin. I found other drugs, are you sure they still offer this program for Rocephin?
Posted by sammy (Member # 13952) on :
When I needed help with Rocephin/ceftriaxone coverage I did search Needy Meds and contacted Roche directly. They were no longer offering assistance for Rocephin at that time.
Posted by farraday (Member # 21494) on :
Thanks for all the great info! I emailed it to my husband and he is hard at work on the phone and online.
My local pain doc wrote the Rx to get the shunt installed. My LLMD wrote the order for the Rocephan. I think we will go the route of mixing it and administering it at home ourselves. We have an IV pump left over from my days on IV pain meds through my port (since removed).
We plan to wait until after the holidays to get started. Meanwhile I have gone back on to Flagyl and Ketek and am, remarkably, doing better! Wouldn't that be great?!! I did not think to go back to them, but I ran out of Biaxin and had lots left over of the Flagyl/Ketek so I decided to use that until I start the IV's.
We are busy exploring ways to cope with our poverty, illness, home repairs, etc. Your support is wonderful! It gives me hope at a time when I badly need it.
Posted by WIGGY (Member # 15377) on :
Best of luck!
Posted by we'll win (Member # 11112) on :
You read my mind. I too am long time sufferer, over twenty years and have been on many different combinations including intravenous and intramuscular rocephin (cephtriaxone). I was just about to suggest ketek and you wrote that you are on it (and flagyl)and doing better.
For others that might not know. Ketek is very powerful when taken with another antibiotic. Doctors are hesitant to prescribe it now because it can cause liver problems. I think maximum dosage lyme doctors prescribe today is two ketek tablets a day (each is 400mg).
I wish you the best. Your struggle and all our struggles go on.
Glad you're doing better. Keep Smiling. We're all with you. And one day......