posted
ok so.....How do all of you handle this whole lyme situation financially
I was having a talk with my mother about this last night. She was saying that people and families must be in serious debt with this disease. They must be losing their homes, jobs ETC. and practically out on the streets.
Luckily for me. I just turned 25. and I started getting sick when I was 23. I was still living with my mom and family. so financially it wasnt as demanding because I didnt have to pay for my own roof over my head
Although my money FLIES out the window with this stupid disease. I'll get a check each week and its seriously dented from buying supplements and probiotics. I buy good quality ones so I pay like 23 dollars for just 14 capsules (ultimate flora)and I take 4 capsules a day. I buy epsom salt, and hydrogen peroxide for baths. antifungal supplements. etc. and then theres the out of pocket payment for the LLMD every two months.
its rediculous. how do you do it? How do you guys keep roofs over your head. pay your bills.work your jobs. pay for food and your children etc
it seriously seems impossible. Have any of you lost your homes?
Tell Me Your Story. We can all use support with this. THANKS!
Posts: 995 | From somewhere out there | Registered: Oct 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
we are both retired from good jobs so the double income helps. we paid off our house when we retired with our annual leave money.
we planned in advance. paid off cars and truck.
also i don't buy alot. no clothes, don't buy alot of groceries, no makeup, etc.
we do travel but have an rv which is paid for and that helps.
we only take one big trip a year and make payments on it.
when mom died i got an estate from her and that has helped a bunch.
also we have good insurance and that helps a bunch.
my lyme doc quit so i don't have any of those appts really. i'm doing it solo so theonly expense i have is supplements.
i, too, don't see how others make it.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
We take it day by day. Lyme and co is destroying our health and financial life.
However, we cannot put a price on our health. I thought about one of us going through treatment at a time. But, how do you choose whose health matters more? Mine? My Husband's? My son's? You cannot choose. We all matter.
So we struggle each month, with help from family and blessings from God.
Treatment comes first, because if you don't have your health, nothing else matters. So, we will use our entire tax refund on treatment and to make ends meet, while my husband is on unpaid sick leave and I am on Disability. After that, we will move in with his family, if needed.
Lyme is the "great imitator" and I would also call it the "sneaky thief" because it slowly steals so much of your life and you don't even realize it was Lyme until the damage is done.
My husband and I are both college graduates who had professional jobs. We believed in total self-sufficiency. Now we have to ask for help from family to make it through. It is very humbling.
I refuse to let this be a "disease for the wealthy", whereby, if you have the financial resources, you can get closer to a cure.
I know that my family can NEVER afford a $10,000 machine in Germany, let alone even a plane ticket to Germany, to kill these pathogens.
However, we will scrimp and save and pay whatever is needed for LLMD visits, medications and supplements. My family will get better even if we have to spend our last penny in the process.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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posted
Well, I personally would like to see a foundation started that people could apply to for help with medical care, to be funded by people with LOTS of money, you know, pretty wealthy folks who are in the 1% income bracket, who would like to help.
And then anyone else who would like to contribute as well. But it's going to take a lot of money to fund Lyme patients.
Two of us are interested in doing this - anyone else?!
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
<<How do all of you handle this whole lyme situation financially?>>
I don't. I am too sick to work right now, so we are trying to survive on my husband's $12/hr wages. We receive food stamps, are on Medicaid, and barely make ends meet. Our car finally died beyond repair last month. My daughter's class just got head lice, and we couldn't afford the $20 shampoo she needed. My father pays for my autistic son's special needs preschool, but that is a stretch for him. There is just not one extra penny.
So, I go without treating my Lyme, and try very hard not to think about what that means down the road for me.
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
It is an awful situation for so many. This shouldn't be happening, and I am sorry you are being hurt by it.
Lymegal- I know this seems like a tiny grain of help in an ocean of need, but if you can find a farm store (Southern States)- you can find your epsom salts at about 1/2 price.
Hey, every little bit helps! ~smile~
Here is a link to more substantial help. Maybe you can find ways to make your life a bit easier?
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I am using up a retirement account I had from when I used to work, that's how.
I worry a lot about financial, just added up our medical expenses for last year (taxes) and already met our deductible for insurance this year by Feb. 1st!
I don't know. We are a family of 5 with 2 of us sick.
Wish I had words of encouragement here or suggestions, but I am quite worried about this part myself.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am with Robin. I have seen many people loose their jobs, homes, cars, etc due to being too sick to work.
Some have lost their lives.
When I moved to AZ, I found an abandoned boys ranch 3 miles out of town. I thought that would be a great place to fix up and call the healing ranch.
A mess hall if people were able to come out to eat.
Goat's, horses, chickens, a garden, etc.
Those that are well enough to feed and take care of the livestock.
But, to start with it would be good just to start up a foundation like Robin is talking about.
Even if we start out small...sending probiotics to people monthly at least they would know others out there care and they are not alone with this.
Paying for a person to be able to see their lyme doc would be big. We could pay directly to the lyme doc.
I have noticed a person on Facebook posts about different people who have been helped by his foundation.
He helps those with AL's.
I am not sure where he gets the funds to help others. I just know he gets lots of applications and does what he can with the funds he has.
He also has mentioned that the organizations that are set up to help people with AL's come to him for help??
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i couldnt read everything so i may repeat what some have said
i have seen ppl lose jobs and home s and stuff over this disease
im 62-got it in my early 30s and raised a family
first i never needed or wanted a lot of special stuff some ppl seem to need today-huge houses and fancy clothes
but i did prioritize tx for all of us-got the best i could for each one when they needed it
buying supps online and shopping around there are huge savings
still...i must spend 5000 at least a yr on supps and otc stuff i cant get by without and it is not covered my ins
i was tuff...sneaky tricky...kept my job for as long as i could by pulsing so i wouldnt herx on job and planning how to call in sick regulary so my body got a break
i think it is really impt to get as much high quality tx asap in the beginning...after the original zapping with abx...your not as sick as if you are not aggressive in the beginning
also---there were times i lived on credit and i did go bank rupt once...after divorce, car accidnt and child being dx with lyme
everyones different-but some of this helped me
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I just do the best I can with what I have and take it day by day
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
It's tough. I'm 22 and I got sick when I was 18- but because I didn't know what was wrong for 2 years, I had to pay for every therapy I tried myself. (I graduated High School at 17)
Luckily, I was able to get good internships and had worked in High School AND had scholarships, because I spent over $10,000 in 2 years.
Then, when I started getting treatment, my parents helped out.
However- ideally, my doctors would have had me not going to school or working for at least the first year of treatment.
But I really couldn't afford that- I NEEDED school to get the internships (and later full time job) that allowed me to pay for treatment.
The same is true now (I stopped antibiotics and backslid)- it would be better for me to take long term disability, but I was in a brand new job, and couldn't afford the pay cut and also would be at high risk for losing my position permanently.
It seems impossible somedays, and I know I could be a FAR better performer at my job if I weren't sick
(there are days where just showing up is all I have energy for)
But I just do whatever I have to to stay at work.
My house is a mess right now, I usually can hardly drag myself out of the house to buy groceries or fil prescriptions, and I have no social life.
So I don't go out to eat ever, I don't go to movies, and I don't shop.
I don't have a gym membership, and I never buy coffee, or participate in work functions that cost money.
Basically, I go to work and that is it.
The only thing I do not skimp on is groceries, because I think eating well is very important.
Libraries are a lifesaver
And I am still just barely staying above water.
It is sometimes depressing- many people my age are talking about how they have started to save to buy a house in a few years.
Renting is a huge money pit, but I just literally cannot save money right now.
P.S. LPkayak- I need to steal your tricks. Because I am worried about not performing up to par, I go to work even if it means I make myself worse.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
Getting well but going down in flames financially.Two kids ,and neither of us is working???? I have good health insurance for now,dont know how much longer I can keep it. The system is broke as we are.
Posts: 342 | From northern california | Registered: Dec 2010
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posted
Reading this today really hit home - I am having a pity day! I was just recently diagnosed after several years of other medical issues we finally found the Lyme. I am having an anxiety attack today. It is my Birthday and I am sitting here alone trying to decide how to proceed and scared of what this is going to do to my relationship with my boyfriend. I am already broke from treating lead and EBV I was denied disability and I am tired of trying to understand and explain this disease. I could really use some help from the Lyme community
-------------------- KSN Posts: 34 | From Indianapolis | Registered: Feb 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Ksnew - You will get many more replies if you start your own thread. Scroll to the bottom of the page to Post New Topic.
Lyme is scary, but not nearly as bad as the years of misdiagnoses. You will figure out the finances. And now, you can recover your health.
posted
Ksnew - since it's your birthday today, and you can't solve all your Lyme problems today, I suggest you think of something that's fun for you and go do it -
on my birthday, that's what I do, no matter how I'm feeling, because I can't solve all my Lyme problems, but I can engage in something I like to do.
Then we will help you in discussion here about all the issues you face. As Boxermom suggested, you can start your own post.
Getting through this is a journey, but at least you found out what is wrong, and that's a first-step accomplishment, and I bet you showed a lot of persistance in getting through all the time you didn't know what was wrong.
It's one of my sisters' birthday today too, so I'm in a birthday mood - so do something to celebrate you today, ok?
Posts: 13171 | From San Francisco | Registered: May 2006
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi,The only way I am surviving is to apply for everything the gov. has to help me stay alive.
After all, I worked 40 years ,paid max taxes ,(no dependents.
Now i get help for everything,my new job is filling out forms.
Some of it is close to nothing like food stamps grants me 16 bucks a month.
But 16 bucks is something,it helps.
All the little somethings adds up.
You can goto the food bank federal guidelines says if you are single, make less than 1789 a month you can take home food bank food.I make hundreds less so i get the food and feel like a low life. But it helps!
Hospital bills left over after medicare can be covered by state programs I qualifyed!!It helps!
Telephone,electric bill, even homestead to help with property taxes,all add a little.
Everything has a chart rating income,money that you have in the bank,all your junk cars that are totaled out ,by needing more repairs than they are worth .It all is compuiterised ran through the government deal and helps a little.
Apply for it !!
MADDOG
Posts: 4083 | From Ohio | Registered: Oct 2000
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Well, i dont know how we are getting by at all. Well i shouldnt say that. My lyme friends have helped me many times when i am down and dont know where to turn. I owe family much money.
I have also had to go to the food bank. It never is easy to go there. But its better than being hungry.
Thank goodness i have heath insurance .
Posts: 3905 | From USA | Registered: May 2007
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Please remember to take receipts (a printout from the pharmacy that shows your out-of pocket amts) for ALL of your medical expenses and supplements to your food stamp caseworker.
You will get a deduction on your income, which will increase your food stamps. They average these medical expenses over a 3 month period to figure your deduction.
Let them know that the supplements are "required by your Dr as part of your treatment".
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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posted
Luckily my husband and I were renting so when we had to move out of our place it did not hurt us like it could have. My mother has been kind enough to take us in (I am 37 and husband is 43) I have lyme and babesia and we have been hurting badly since I stopped working. One thing that has helped quite a bit is to make all of my own tinctures (I follow the Buhner book as well as antibiotics) I bought a kit over amazon and now I can afford all of the natural remedies I need. Hopefully things will improve and I can get back to work soon.
Posts: 63 | From dc | Registered: Sep 2010
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posted
We live in a cheap apartment, have cheap college kid type furniture & replace it from stuff we find on the curb. We drive UGLY cars bc we own them. We literally wear holes in our shoes and clothes before replacing them. We cut our own hair.
Our entertainment budget is the $15 a month we spend on netflix! We dont have cable, we just do streaming video.
We get our clothes from thrift or (ha) my work clothes from walmart!
I get all my toddlers clothes as handme downs or from the very cheap part of consignment shops. No more than $1 an item!
Sometimes we just dont really eat much. Our LLMD is big on diet, but the cheap & easy food is never healthy! We get healthy food as much as we can & just try to make it last more. Organic Bananas are a cheap fruit!
I work full time, hubby too sick to work but he drags himself around after our son all day so we dont have to do daycare. He is a great dad! But the savings in child care costs is nice too.
Im actually in the process of starting my own business (it isnt as risky as it might sound bc of what i do for a living) bc i literally had no option to ever get a raise, and we need more money to hopefully pay for hubbys IV meds one day and for my own treatment too when it starts.
We have no family to help us with bills. Although hubby just inherited $5000 from his grandparents which we will use to finally get our many cavities filled! Yay! Very exciting to be able to afford that.
Actually, we have sort of trained ourselves to be content with the crappiest version of almost everything imaginable, and also to not really get very interested in the stuff our culture wants us to buy buy buy. If we ever get out of the house, it is for a walk or free museum.
It helps we were both raised super poor, so it isnt too much of a change... Except that we are taking care of our health!
Boy i wish there was a vitacost credit card with frequent buyer points! LOL we spend soooooo much on supplements and medicines!
BTW we try not to think of renting as a money pit... It is a way to ensure that you always have the possibility for a lower rent payment if you are willing to move! Many people lose money even if they sell a house. I am ok with renting indefinitely until life gets less crazy glass half full kind of thing i guess
-------------------- IgM ++41, IND 31, 34, 39, 83-93 IgG IND 41
"To the world you may be one person, but to one person you may be the world." - unknown Posts: 72 | From NC | Registered: Sep 2011
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posted
i have not been able to work for 4 years...
my husband has been blessed with a decent paying job.
we try to live as cheaply as possible, and we are depending on credit cards for my medical care at this point.
i've been on treatment for 2 years, and i'm estimating we've spent about $40,000 at this point :/ (thankfully, we only have a few thousand on our credit card at the moment)
Posts: 442 | From usa | Registered: Oct 2010
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Dogsandcats
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glass half full kind of thing i guess
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