Topic: Please tell my husband how much you spent on lyme disease
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Taxes showed that we spent about $5,000. total on my health related needs this year. That includes all medical visits, vitamins and supplements, massage appointments, etc.
Our accountant says we've got to get that medical figure down. My husband is overwhelmed by how much this has all cost us.
With major medical ins only, I am trying to handle as much of this as possible without professional help. I think I did pretty well, although I'd rather have all the money for a Carribean vacation.
How much has this disease cost you this year. How much out of pocket throughout your life? For how many years?
Pre diagnosis testing and treatment. Post diagnosis treatment. Lost wages. Money spent for things you couldn't do yourself, like housekeeping, prepared food, daycare, etc.
Thanks.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Wow Bejoy! I have been alternative for so long. I can't say how much I've spent, I would say less than 10K in 12 years. But that is because after the first year I stopped going to doctors and looking for answers after my Chronic Fatigue Syndrome diagnosis.
I'm glad you are doing better. I was wondering why your accountant said that you need to get the number down? I thought you have to have had at least $2000 out of pocket in order to claim.
This past month / FINALLY got diagnosis: 2400 lab, 455 dr
Pre diagnosis testing and treatment: 14 years of misdiagnosis: 64K in last 8 years alone, 40K over previous 6 years
Lost wages: in past 14 years I have had 10 medical leaves at 12 - 15K each
Money spent for things you couldn't do yourself, like housekeeping, prepared food, daycare, etc: I'm just getting there now......
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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I havent started treatment but I am up to about the 10K mark I would guess in the last year and half. Thats just in all the specialists and flipping tests, shrink visits, all the rx drugs that I didnt need,gas,lost wages,etc.
Oh, I dread to see the expense once I get officially dxd.
Posts: 171 | From the land of oz | Registered: Feb 2009
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Between my son and I over the past 5 years, we have spent $100,000. That does not include what insurance paid.
Five thousand this year is very good, IMO.
Karen
Posts: 1846 | From Maine | Registered: Jun 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hmmm,insurance premiums run me around 2 grand a year, doctor visits are 15 each at 4-5 times a year, and i have dual medical coverage so meds run me about 60 per month.
i'm retired and just do all my own housework when i get around to it, so no cost there.
but before diagnosis, i spent probably 2 or 3 grand a year for at least 5 or 6 years......i'm including er visits which were at least twice a year.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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bettyg
Unregistered
posted
a past survey done by tincup also ...
STATISTICS ... LYME POLL by Tincup posted March 8, 2005, Lyme Disease Survey Responses, FINAL RESULTS shown below! 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
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
To date about $40k, doctors visits, other practioners visits, supplements, meds. 2 years in treatment.
Posts: 3528 | From US | Registered: Apr 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
We spent out of pocket about $10,000 a year in Rx and supplements. That does not include our insurance premiums.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Do I really want to add up the totals? Ok, here we go....
So, things really hit the crapper in 2007.
Took 3 months off work:
lost wages- approx $10,500
medical expenses leading up to seeing LLMD- $200 ( co-pays, etc)
LLMD visits 2008-now - $3000
meds-$500 ( so far my insurance has been good)
medical workup post LLMD- $200 ( co-pays, etc)
alternative treatments ( acupuncture, massage, etc)- $680
grand total?
$4580 for all medical expenses over the last year
$14,580 for medical expenses plus lost wages
Wow, and it's only been a few years for me.
Posts: 59 | From stratford, CT | Registered: Feb 2008
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Ha,Back in 1985 I had 90,000 bucks worth of rocephin.
Didn't kill the lyme ,did kill my gall bladder.
And almost killed me.
MADDOG
Posts: 4083 | From Ohio | Registered: Oct 2000
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Thanks for your input. I really appreciate it! Sorry about all that you all have been through!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bettyg
Unregistered
posted
just 1 quick year for me i'll give you 2006
had to go out of state for llmd
$5,000 for llmd visits, body lab tests NOT covered by bcbs, 22 supplements , etc.
posted
Wow Maddog, did you have to pay for that rocephin? I can't imagine such a thing.
Bejoy, our insurance premiums alone are over 12,000 a year. That's before we make the copayments. Since we live 1/2 drive from town, there's mileage added to the Dr. visits.
I've had Lyme misdiagnosed for 25 years. There were times I spent months in bed unable to function. So it's hard to determine lost wages.
Thank God hubby was well and supported us.
I am curious, why does your accountant say you have to get the medical expenses down? That just seems like a ridiculous thing for an accountant to say.
Now, perhaps he said that your medical expenses were out of line with your income. That I could understand. However, reducing your medical treatment and thus negatively affecting your health and wellbeing is not the optimal solution.
Think flexibly of other solutions. Where else can you reduce expenditures in order to balance the budget.
Your health and life are the last place you should cut. Usually there are many other unnecessary expenditures we make in life. Look at those instead.
What disturbs me most about this scenario with your accountant is that if that stance is because of an Income/Expenditure imbalance... it places all the responsibility for that on you!
Reverse the situation. If your husband were sick wouldn't you do everything you could to help him, make any sacrifice needed?
Wouldn't he have the right to expect that?
You are sick and need support and understanding. Don't take on the additional weight of being made to feel as though you are a burden. That's just not right.
We are all here to help and support one another whenever we need it. That's what life is all about, and what love is all about. My husband and I both do that for each other. Gladly.
Looking for solutions is harder than placing blame, but much more fulfilling. You and your husband need to agree that supporting your health and wellbeing is necessary. Then look for solutions.
(STUPID ACCOUNTANT!! ... SORRY) Keeping you in prayer.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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posted
Insurance has paid (we estimate) well over $300,000 since 10/81. That includes ONLY 19 months, seven days a week (including all holidays) of 2 grams IV Rocephin, and does not include daily 15 months of one (for the first week, then 2 grams for duration)IV Vancomycin. We have thrown out AT LEAST six grocery bags FULL of empty pill bottles. Zithromax oral pills are usually dispensed on bubble packs of 6 pills. I was getting bottles of 90 pills, along with about every drug in Dr. B's treatment. For about 6 months I was getting the two daily IV's along with three orals (total of 5 different antibiotics each day). Wallgreens LOVES me. Needless to say, I had some digestive, kidney, and gall bladder issues. All told w/hospital and Dr./surgery bills, I estimate well over $500,000. All over one stupid tick, and a stupider PCP and his "expert infectious disease specilast" who both said "You can't get Lyme disease in Florida. The former PCP drives a Lamborgini, second one in five years). I am still very sick and on SSDI for 1 1/2 years.
Posts: 175 | From Venice, FL USA | Registered: Feb 2002
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
bejoy, i am AMAZED that you only spent 5000 this year. when it comes to lyme treatment that isn't bad at all (sadly).
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Since 2003 I checked our tax returns and it's 50K plus. Every year we pay more for my care than Humana and Medicare combined.
In our 30s (pre-lyme) my husband and I used to say we were going to retire at an early age and be wealthy, and live off of our 401K. Something sure went wrong with that wishful thinking.
First was this crazy illness, then came the fall of Wall Street. Thank goodness for SS.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
5 1/2 years of treatment - I can only approximate we are past the $100,000 (out of pocket) mark. Insurance has covered some things. I'm not even counting lost wages over these 5 1/2 years - at least another couple 100,000 there too.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I have to say that my husband is very supportive of whatever choices I make. If I need something for my medical care, I get it. I just try to be very resourceful.
He doesn't complain about my choices, and he gives me free reign to spend the money he earns the way I see fit for my recovery. Most of it came out of home equity before. Now we're trying to stay on a budget.
Because we have a $7,000. pp p year deductible, no LLMD within driving distance, and I was too sick to travel, I chose to study and be my own doc. The journey has been great, if scary.
Two years later and at leastt 2,000 hours of study later, I still have some symptoms, and I still treat, but I am quite well and back involved in life.
A downside to this is that my husband has never had any opportunity to sit down with an LLMD to hear what I actually have in a medical sense, what a difficult disease this is to treat, and how much it can cost.
He has sat down with non lyme-literate docs who gave him the "no labcorp pos, no lyme" talk.
This whole thing feels like such a huge victory to me. I treated, recovered, saved our home and future.
To my husband, what he gets is lost years of our lives, lost years of my employment, and a whole huge lot of money down the drain for whatever coinfection I am calling my current condition.
And nobody to help him make any sense about it.
He's too trauatized by my years behind the computer doing nothing but reading lymenet to be willing to look here himself, but I think he'll read this post if I print it out.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
About $60,000 for three year of out of pocket expenses. Insurance has paid for many thing but not everything including LLMD fees, supplements.
Posts: 984 | From San Diego | Registered: Nov 2006
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