posted
Hi all, This is probably a topic that all of us have been touched by because of high costs of tx.! I am becoming so downtrodden. I am so in debt - can't keep the bills paid and now I can't even afford the meds anymore. I haven't been working for 6 months - by choice to do tx., and will be starting again soon. I feel like I have no one to really help me. My family has been helping a bit, but the extent of what I need and what they are giving is so small. I feel bad saying that about my parents, especially because I am not a child anymore - in my 30's and professional, but I just don't think anyone truly understands the extent of the financial difficulties. I can't get anymore loans and the thought of bankruptcy freaks me out because I really won't be able to get anymore credit at all and then I don't know how I will pay for any of the meds. I really can't take this anymore. I know that in my situation it is hard because I have insurance, although they don't pay for IV which I am on, and once I go back to work which I need to to be able to pay for my food, shelter, etc., I can't get any assistance from drug companies. I feel like I fall in this category of people that just get screwed by the system left and right. I just feel so emotionally drained and am sitting here crying all over the keyboard begging G-d to hear me and help! He usually provides me with what I need, but things are just so bad today. I usually believe in the universe providing and staying positive, but I am getting overwhelmed. Most of the people who know me think I am so well put together and all and I don't usually express how bad things are. I really only talk to my family, friends with Lyme and therapist, because frankly whenever I used to talk to others they would get annoyed - thinking I was so strong and could handle it. I am usually the one taking care of others, but now I am in a bad way. I have hit the 2.5 year mark with my tx and while better I recently found out I have tularemia and bartonella which is compounding the disease - making it harder to treat and compounding the money issue because now I have to find the money to pay for more extensive tx. for that as well. Most of the txs. that have been tried have done nothing for these issues - so IV will have to be done for the tularemia as well. I don't think I will be able to do this and feel so lost - like I will never kick this thing because of lack of funds. Any thoughts would be most appreciated. M
Posts: 55 | From Mamaroneck, New york | Registered: Apr 2006
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bettyg
Unregistered
posted
Welcome focus. Breaking this up into paragraphs so we neuro lymies can read/comprehend.
quote:Originally posted by focusonsurvival: Hi all, This is probably a topic that all of us have been touched by because of high costs of tx.! I am becoming so downtrodden.
I am so in debt - can't keep the bills paid and now I can't even afford the meds anymore. I haven't been working for 6 months - by choice to do tx., and will be starting again soon.
I feel like I have no one to really help me. My family has been helping a bit, but the extent of what I need and what they are giving is so small.
I feel bad saying that about my parents, especially because I am not a child anymore - in my 30's and professional , but I just don't think anyone truly understands the extent of the financial difficulties.
I can't get anymore loans and the thought of bankruptcy freaks me out because I really won't be able to get anymore credit at all and then I don't know how I will pay for any of the meds. I really can't take this anymore.
I know that in my situation it is hard because I have insurance, although they don't pay for IV which I am on, and once I go back to work; which I need to to be able to pay for my food, shelter, etc., I can't get any assistance from drug companies.
I feel like I fall in this category of people that just get screwed by the system left and right.
I just feel so emotionally drained and am sitting here crying all over the keyboard begging G-d to hear me and help! He usually provides me with what I need, but things are just so bad today. I usually believe in the universe providing and staying positive, but I am getting overwhelmed.
Most of the people who know me think I am so well put together and all, and I don't usually express how bad things are.
I really only talk to my family, friends with Lyme and therapist, because frankly whenever I used to talk to others they would get annoyed - thinking I was so strong and could handle it .
I am usually the one taking care of others, but now I am in a bad way. I have hit the 2.5 year mark with my tx and while better
I recently found out I have tularemia and bartonella which is compounding the disease - making it harder to treat and compounding the money issue because now I have to find the money to pay for more extensive tx. for that as well.
Most of the txs. that have been tried have done nothing for these issues - so IV will have to be done for the tularemia as well .
I don't think I will be able to do this and feel so lost - like I will never kick this thing because of lack of funds. Any thoughts would be most appreciated. M
M, sorry to read of your heartaches due to the FINANCIAL $$$ DISASTERS OF CHRONIC LYME disease.
M, in future, please hit the enter button often and DOUBLE space between each paragraph to allow us to read/comprehend what you have typed..ok! We thank you for that.
I'll attach my newbies links; go to TREEPATROL'S NEWBIE LINKS; wealth of info there ... know there is some financial stuff there; you'll need to print off his entire list & then look for what you are needing now.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word! http://tinyurl.com/
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
Tincup posted March 8, 2005, 2218 Lyme Disease Survey Responses February 27, 2005 - March 9, 2005 1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed- 14 Answers ranged from 1- 120 different doctors 2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7 4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Hi focusonsurvival,
If you have tularemia which is quite rare in these parts your treatment should be covered by your insurance. The tularemia diagnosis could also force the insurance company to rethink covering the lyme also.
A consultation with an attorney is in order. If the tularemia diagnosis is a proven diagnosis you may just have to pay copays for visits and have your treatment covered. A consultation is free, and it wouldn't be a bad idea in this instance.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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Carol B
Unregistered
posted
All I can really talk about is how much I identify with your financial despair.
My husband and I are in the process of refinancing our house to cover costs for a while.
My husband is also working three jobs-sales, pizza delivery and umpiring.
I use three local Church food pantries to gather food for the family.
We have two teenagers-soon to be working. I hope I hope.
Still we do NOT make ends meet-and the dept grows-it really scares me sometimes.
When I try to think it through I imagine us becoming homeless-but crashing at friends homes until we can get financially back on our feet.
When I imagine not having anymore resources for treatment I will simply have to accept it and wait until a solution comes along.
I have just recently been put on disability from work.
Right now, today ,we have a way to pay-albeit digging a debt hole. We have food. I have my meds-somehow, someway we are going to get through this-but I often wonder how.
And I try really hard to have Faith that somehow God will find a way. We are doing the best we can.
posted
I am really sorry to hear of your financial troubles.
I fear that I am headed down the same road. I am 25 years old and although I am currently working it is becoming increasingly difficult for me to focus and make it through the day. I have had chronic Lyme for the past eight years and it has been a roller-coaster ride.
I pray that everyone heads down the path towards healing. Has anyone successfully received disability checks? Was it a difficult process to persue?
-------------------- Lisa Duffy Western MA Posts: 14 | From Springfield, MA | Registered: Jun 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
hey, focus!
I could also relate to your post -- as I'm sure many of us can.
Believe me, I'm grateful to have a home, but at this point, we've taken out two mortgages to meet expenses up to this point.
Now, I'm dipping deeply into retirement; we both are.
Our insurance (through Blue Cross) runs the two of us about $900 a month. That alone does us in.
I'm working and have continued to work, but it's part time. While everything helps, it's definitely not enough. It's great that you're going to be able to go back to work.
I know you're on IV treatment. I just want to mention that I've been on oral antibiotics for the past year and have made really amazing progress. It's gotta be a LOT less money. Just a thought.
All of us do the best we can. My thoughts are with you. Maybe it helps to know so many of us can relate to you!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
WELCOME LISA to the board.
On this same post are some newbie links to help yu get going.
SSDI, disability insurance, benefits are HARD to get but you can SUCCEED.
In GENERAL, read the 2 posts with SSDI in the topic titles. Print off the info for yourself so you can file/save it to get yourself going to get $$ for disability.
Read that info over & over until you get a grasp about what to do. I hope my very DETAILED info is in MINOUTCAT'S DISABILITY LINKS found in TREEPATROL'S NEWBIE LINKS.
I lost all my software last week, reinstalled, & nothing is working right so I can't retrieve this vital info I provide all of you.
Glad you joined us & you will learn a lot as well as get 24/7 support.
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Dear Lisa,
I am sorry that you are under so much stress and financial pressure. Who needs that on top of working toward recovery?
We refinanced our home 4 times in 4 yrs. When we sold it, we made enough money to get back in the black. That was a miracle, I am sure. I will pray about your situation.
We got insurance to pay for IV beyond the 8wk limit by submitting the next round under Bartonella. IV abx are costly, but if your line is working nicely, you may want to continue. We pulled a good line after 11wks and next one 7mos later was a lot of trouble.
If you cannot get out of paying out of pocket for IV, I have posted previously on our families' success with cost comparison and getting abx and supplies more reasonably than in package. You can probably find the discussion through the search function. If you can't find it, I can give you the info. Let me know.
I hope that this is not more advice than you are looking for...You do have the advantages, I believe from your post, of not having kids yet,(who would likely be sick) and being young yourself. You WILL get better and be able to reenter workplace and crank in time. God does provide. In our case, the medical and other bills do pile up overwhelmingly, yet relief does come in time. Wish it was in our timing...I hope you do get relief soon and that your immediate needs will be met.
We have had to let others know how bad it is. Certain not good aspects of my pride are utterly gone after 6yrs of illness(I am much improved after 15mos tx) It is a sweet place to be; but the path entailed much suffering.
Sounds like you are doing some really great things for yourself with the LLMD and therapist.
This got long. I just can relate and hope our experience is some encouragement or help.
Best Wishes, Char
Posts: 1230 | From US | Registered: Nov 2005
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