How are you surviving financially?

I have suffered through going to work almost everyday. My employer has been very understanding, but I haven't really taken advantage too much. My insurance has picked up all of my orals and I get back 60% on my out of pocket for my LLMD so I'm doing ok. Now I am paying out of pocket for IV. This is the first real expense for me. Luckily I found infuserveamerica. A four week treatment is only going to cost $1500. i am hoping to extend it to 6 weeks, but the Rx is only for 4 right now. I see my doc again on Dec 3rd.

I have three jobs due to the economic crisis her in greece. All zero hour so no work no money. I have to pay for all and any medication, so I have to keep working.

But right now I am supposed to be grateful I have a job.

It's going to be tough.

Akkami, Where are you getting your meds from. I am also in IV and the rocephin is less than $200 week through infuserveamerica. I am using a nursing service for dressing changes, but you can do the dressing change yourself. They actually have instructions on how to do this on their website. It cost me $135 a week, but I don't need to become septic.

Thanks Daxwell, I'll look into it. I'm going to see if my doc will work with me. Otherwise I'll only be able to do this for a month or two.

Girlie- I think you have to see a Rheumy who will no doubt diagnose you with Fibromyalgia and probably Chronic Fatigue Syndrome. Then with those dx you'll probably have a better shot a disability. I was looking in to it but it pays so little that I decided to stick it out as long as my job will keep me. I feel like their patients is running thin though.

Wow, thanks for all the responses, everyone. So far you are all working. I'm in plenty of interviews the last couple of months but I'm doubting if I'm mentally going to be able to perform once hired. My small package from work has run out and the bills are starting to quickly pile up. I just feel terrible because I got very very sick at the same time as losing my job, and my worried teen daughter asked me, "Our lifestyle isn't going to change, is it?" I assured her it absolutely would not--yet it's taken just 3 short months to change drastically. :-(

Healing98, that is a story from freaking h*** and back... Well, hopefully you will be able to soon say that you and your family have made your way back from it. I reject and rebuke the power of curses but do believe that good energy begets more good energy. I will be sending you lots of light and positivity and doors of opportunity for you to walk through, and when I'm praying for my financial situation to improve I will be praying for you & your wife as well! Thanks for the tips on Craigslist and Ebay, as well.

I can see from all the recent posts that if we at least have our family members we should be very very grateful. Of course, we are all beyond grateful for this forum and a safe place to share questions like this one. Grateful for all of YOU, Friends.

Maui

I am not able to work, but luckily I am on disability here in Canada. They pay is decent, thank goodness!

Girlie - I received disability before I even knew what I had. Your symptoms alone should qualify you regardless of what they deem you have.

Not well at all! Fortunately, my house and car are paid off, but most of my money is going to supplements. Meanwhile, very little income coming in, bc I opted not to deduct when I was in grad. school, which was a long time. Stupid me.

Well, can't think about it at this moment.

Margaret

Yes , the financial aspect of this can scare the F out of you. For those can work again , who had jobs and lost them, are still not finding the same pay. Welcome to 2014. When people I know try to call me cheap, and then I tell them the cost of this Lyme thing, they shut the F up real fast.

I get by with reduced income, and then some side jobs of my own creation. When I feel good I work more on my side jobs if available, no telling what tomorrow will bring, or wont. I could not do side jobs with a boss over me. I do a lot of my home and car work myself if and when I can. If I cant do it, I shop for bargains or with people I know / trust to not rip me off

this disease is a nightmare if you are poor


It is pretty surreal, to loose everything to this disease for some.

Divorced with advanced chronic Lyme, caring for disabled son singlehandedly. Living on the edge of homelessness - just barely staying afloat - just barely keeping a roof overhead. Denied disability. Unable to work. Savings and 401-K are depleted - gone. Using every possible public assistance - on food stamps, heating assistance, etc. Early piddling retirement (Soc. Sec.). Currently looking for cheaper housing. Glad no car payments. Planning for the possibility of eventually having to live in car. This is a normal consequence of having chronic Lyme in a society that continually denies it: People are losing everything.

Post Edited (Borrelian) : 11/29/2014 7:20:22 PM (GMT-7)

No, it's not right - but it's happening to many. Thanks for caring.

I am so sorry for all your suffering. the only thing that saved my butt is the disability I got in 2008 based on my frequent psychiatric admissions basically for depression, telling me i was bipolar, then benzos was my problems, a bad marriage and no support but me in there 2 times. I suffered with pain brain fog, not able to think until I filed and I got it. now i realize that it was all lyme disease, because a couple of months after started treatment for lyme, my whole brain cleared up and I woke up and said " what the hell happened "

I had neuro lyme and my llmd said I have prob had in 20 yrs when I started to slowly deteriorate.

now, if it was not for my husband paying me money every month I would not be able to pay for my supplements and treatment. we are pending divorce but have stayed married just so I can keep his va insurance which will pay for many of my treatments. without being on champ va, I would have only medicare would have to pay a drug policy and a supplemental policy and would cost me lots more money. i am terrified if I divorce, about the money and I understand now why so many people get into so much debt and lose homes and everything it is so scary.

but I am still struggling with this. I keep thinking I am not getting aggressive enough treatment, I need iv's and may have to go see dr j or dr s in florida or somewhere. the only reason I am walking it because I am giving myself IV peroxide which would cost me 800 $ a month out of pocket if I was not giving it to myself. I have started the jernigan protocol which has helped some. but I have periods which I seem to regress like now.

I have chronic pain, frequent nausea, spine all out of whack, dysautonmia which I just found out, on and on.

I have a home I don't won't to lose it, and I have car payments. I live in fear of what the future will bring. I am a RN and I am trying to do as much of my own treatment as possible to save money. I would be in fnp school now if it wasn't for this darn disease. it has taken so much from me and all of us.