$8000 was just to get diagnosed. I have high deductibles and went to a lot of out of network docs.
I'm averaging $400-$500 / month treatment costs for meds, Dr's, and supplements.
This is one expensive disease.
Posted by maryland (Member # 10345) on :
I would average at least twice that fr my Lyme diagnosis and tx. Wow, that's a lot of lute!
Posted by MichaelTampa (Member # 24868) on :
Goodness, way more than that, but it took the diagnosis at least 20 years, likely something like like 35 years.
Posted by geo (Member # 18333) on :
I am a little under that.
This is a perfect example of why the government/insurance co's and ID doctors are all in cohoots to minimize this very serious, widespread problem. The cost for them to fully diagnose, treat and properly care for all of us (plus millions others who have been un or misdiagnosed) would cause serious harm to the healthcare system and then would greatly impact our economy as the insurers would pass the costs along in higher premiums to employers who then would cut more jobs and on and on ....
Posted by BackinStOlaf (Member # 23725) on :
I spend about the same as you per month.
I would say so far I've spent maybe $4,000-$5,000 and this is WITH insurance. I guess because LLMD doesn't take insurance.
FYI: You can write off most of your medical expenses on your taxes. Doesn't hurt to get a bigger refund back!
OOPS, forgot to add the $1,600 for this last hospital visit. But now I've finally reached my deductible with 3 months to go in the year. So my meds will be covered until December.
Posted by nefferdun (Member # 20157) on :
I can't remember exactly but I guess the year and a half before diagnoses about 2K and the two and half years since around 15K. At one point I was spending $500 a month just on herbs and supplements and some of the abx was $300 a month for just one drug. My insurance does not cover anything. I think I spend about 6K a year only having seen an LLMD once, which cost $3,000 because I had to travel a long distance.
This is a very expensive disease but I do not understand why it would save the insurance companies not to treat it properly. Isn't it more expensive to treat lupus, MS, ALS and the people that are on disability or worse yet in mental institutions and nursing homes? It seems like it would be more cost effective to take care of it.
Posted by NMN (Member # 11007) on :
I'd rather not think about it.
Posted by sixgoofykids (Member # 11141) on :
Hard to say. I mean, do you count flying to see my LLMD, renting a car, staying in a hotel and eating out? Or do you just add up medical bills. It cost a fortune to get well.
My trip to Germany was not the largest % of my treatment, in fact, since I've spent very little since then, it was the last large chunk. All in all, a good investment.
Posted by kimmie (Member # 25547) on :
diagnostic testing/hospitalizations 10,000 IV treatment for 3 weeks 4,400 HOtel & airfare rental cars 1500 current IV meds about 1000/mth 4000 supplements, orals meds 1000 _________
20,900
Only been treating since April! Yikes!
Posted by LightAtTheEnd (Member # 24065) on :
I haven't kept track, but I did make a budget and figure out that just my meds (with insurance), supps and weekly massage cost me about $500 a month which I never had in my budget. Food also costs me about double what I used to spend, since I have to eat healthy all the time now; no getting by on cheap carbs for a while if money is tight.
On top of that I have a long trip with gas, several nights of hotel, eating out, and the LLMD's charge every few months. It's all I can do to scrape up enough for the next trip each time.
I already lived very frugally--the only thing I could drop was my cable internet, even though I depended on it. I had a little savings, but it's gone.
I am only able to handle this so far with help from my family, and as it is, I will have to give up my apartment soon and move in with relatives to continue to afford my treatment.
Meanwhile I drag myself to my full time job every single day, no matter how lousy I feel, because there is no possible way I could manage to continue treatment if I lost my job and my insurance.
I can't even afford to take any time off without pay, and I use up every scrap of leave time on the LLMD trips. At this moment I have 3 minutes of leave left. That means no sick days for me and no vacations, as long as I am making the LLMD trips.
Even though it isn't really up to me, I CANNOT get sicker than I am now and lose my job, or require IV. It would bankrupt my family, trying to support me completely, after all they've done for me already. Hardly the thanks they deserve.
I worked very hard to get a decent job with good insurance. That's supposed to protect us from being financially destroyed by an illness. And those who don't have money to start with can't even afford any treatment.
It's criminal that this should happen to people.
Posted by LittleLymie19 (Member # 15610) on :
My family spends about $1,300 per month, and I've been sick for over 4 years. That doesn't count the $400 per month for insurance that I don't use, because they're HMO and don't cover anything (not even blood tests).
I've also had some hospital stays and surgeries that would add a couple thousand here and there.
I guess I'd say over the past 4 years we've spent around $95,000. I guess 24,000ish per year.
Posted by sixgoofykids (Member # 11141) on :
Littlelymie, that's about what I estimate I spent per year for LLMD treatment including travel and supps. So, two years is almost $50k. Then less than $15k for Germany (all inclusive) .... It's been two years since I went to Germany and I spend a little on a few supps, but that's it, nothing big.
Posted by deerose (Member # 27484) on :
I lived frugally anyway so there wasn't that much to cut. Used all my savings and friends and family help has been indispensable.
Up till dx about 17,000 including hospital. That I know for sure was related. After dx (and still on the clock) 12,000 ish.
Dropped my med insurance this summer cuz it was about 20% of my take home pay which dipped.
It was 4000 deductible but what I was doing was not covered anyhow...to keep "affording" tx I dropped insurance and entered a health newsletter system. They don't cover preexisting so...but insurance wasn't paying anyhow.
If I add premimums of unusable insurance since tx? add 15,000.
Oh yeah the travel expenses and increased food costs...???
yes it is crushing financially. I am grateful for the help to get this far...more than I can ever say.
Someday I hope to pay it forward so someone else can have reprieve and hope and life again.
[ 09-04-2010, 01:10 AM: Message edited by: deerose ]
Posted by groovy2 (Member # 6304) on :
about 130K if I count in the mepron I got for free-
I dont like to think about it -Jay-
Posted by Rene (Member # 4870) on :
We spend 30 thousand last year. I am in my 7th year of illness.