Lyme Disease Support Network

Lyme Debt


I am reaching out for advice. I have gathered SO much debt from my Lyme treatment, especially in the past year and although I am still working full time to try to resolve all of the debt I am not even denting it. I am not eligible for the 25 and under assistance I keep running across. Does anyone have ANY advice? What have you all done as I know I am not the only person in debt due to Lyme. Again any advice is SO appreciated as I am starting to feel totally hopeless. Thank you.


Have you the looked at the ticked off foundation? They say they offer grant to adults?


In re: to debt, if you need help paying it off I highly recommend Learnvest for help budgeting and reallocating your spending, and putting you on a payment schedule to pay off your debt. My husband and I used them to help us pay off our wedding loans and get our savings going and it was a big help. I don’t know if it relates to your situation but when I was in college I got into about 10k of credit card debt and I enrolled in a 3-year program with NovaDebt. They were AMAZING. I don’t know if they’re still around (this was like 6 years ago) but they’re very trustworthy. I went from 10k debt and a 560 credit score to no credit card debt and a 760 credit score. It took years but I’m glad I did the work and they helped me get the momentum going.

Sorry you’re dealing with this!

In re: to the high costs of Lyme, what are the expenses you’re incurring coming from? Tests? Treatment? Doctors? Are you just trying to manage the debt now or are you still having to add more to it?


I am new to this site and like everyone who seeks advice and info on the many, many varied complications, difficulties and needs of Lyme disease and other tick borne infections, I find it incredible that there seems to be so little financial help out there. I am reading your post SMP253 from Mar 2017 and although a few responses came in most seemed to relate to how you pay down the debt that piles up and nothing on any kind of assistance.
My son is unable to work a job outside the home. He does small graphic designs on his computer at home when he can work. This brings in very little money. He has moved home because he went through all of his savings fighting this and he has accepted help from me, but the mountain of debt keeps growing. He has good insurance which we struggle to pay each month ($500+) but it covers almost nothing having to do with his treatments or meds with the exception of some labs. The medical community has not caught up with the growing dilemma of “chronic Lyme” and the many conditions that spring from that, so that most in the health community that he sees, do NOT accept insurance nor do the labs as there are no CPT codes that work for coverage. Currently the NP he sees is associated with a clinic and they do accept his insurance for the office visit, but he has to reach a $3000 out of pocket deductible each year before insurance begins to help. Recently in 2017 he was paying $250 per office visit with the last NP who specialized in Lyme and was associated with LLDA and every visit he walked out with new supplements, teas, Rx’s for different protocols costing hundreds of dollars. None of this was able to be filed with BCBS so it takes a long time for him to meet the deductible.
I am looking for anyone who may know of programs or assistance with the many medical bills for Chronic Lyme, Auto-immune disease, CRIS, and symptoms associated with these. I am a divorced Mom, past 70 trying to continue to work in order to help him, but the finances are getting way beyond me and I am not able to save for my own future needs. Who knows how long my health will hold up. It is more than overwhelming for all of you who struggle with everything you are dealt with fighting the disease(s) but financial ruin shouldn’t have to be one of them. We have tried disability and he doesn’t qualify for several reasons. Nothing he has tried in the last 10+ years has been of any benefit either. I’d welcome any ideas and info you all may have. We live in VA.


Hi @mommieo! First off - I’m so sorry you and your son are going through this. I am too, (and I’m a graphic designer) but I’m currently “on disability” from what my work offered before I had to take my leave, but it’s been 5 months and they’re still “reviewing” my long term disability claim, so I only got a few checks for the short term disability and it wasn’t much. My cognitive issues have made it hard for me to even take on
online work because I’m so unreliable right now.

I have heard of assistance programs but I don’t qualify for any of them so I’m not savvy on what’s out there. It seems like whatever there is is meak. Have you guys tried doing a gofundme or kickstarter campaign? Maybe you can get assistance from friends, family and the online community that way. From what I’ve seen online and in the news, people seem to really step-up to help people with money issues related to serious illness.

I feel really lucky that we can still meak by - I know it’s near impossible for people which is a TERRIBLE FAIL of our medical & insurance system. I’m lucky that this happened now because my husband and I had about $10k saved, and we had about $10k available in our credit cards, and when I had to stop working he still has a high paying job so I’m not on my own with this luckily. But after the last 5 months we’ve blown through almost all of that money, and even with his contributions we can’t live the way we’re living on just his salary in San Francisco. So while we’re waiting for my disability approval we’ve tried to look at this time as an opportunity to live like a minimalist. The plus side sounds like you and your son are getting some great quality time by having to live together again.

These are some things we did to drastically cut our daily living costs, and it’s really helped a lot. There’s always room for some cut-backs, and while it can be hard at first it’s actually very rewarding to cleanse your
life. At least it was for us.

Ways we cut down costs to help

  • I signed us up with Learnvest.com to get an affordable financial advisor. It’s like $20/mo, and even though it’s technically adding another cost to your life, they go through everything, all your accounts, all your spending, and tell you how to work within your budget, and you get unlimited access when things change, like when we ran out of our savings, or when we maxed one of our cards. I’m always reaching out to my learnvest
    advisor and it’s a great comfort at times.
  • My husband and I sat down and listed out every single thing we could think of that costs money in our lives. From all the little recurring bills (like our Netflix and Hulu memberships) to the big one-offs, like gifts and trips.
  • We started getting rid of everything we could. I stopped renting movies, my husband took a break from his therapist, we stopped getting food delivery, etc.
  • This past Christmas we didn’t give any gifts to each other, and we didn’t fly home. Instead we did a “Christmas Cleanse” and spent Christmas Day going through all of our things and filling boxes with stuff to give to Goodwill or sell, and did Skype with our parents.
  • There are a lot of Lyme costs that could be stripped, but he’d have to talk to his doctor about it. Like the first Lyme specialist I had put me on a regimen of supplements that was over $600/month. I ended up choosing a different (and so far better) specialist and she told me I don’t need over half of them, so that helps. Another is the Igenex testing - it would have been nearly $2,000 to do but my doctor said we can hold off on that as a last resort because a lot of the co-infections can be diagnosed clinically with an experienced doctor without the tests, and by seeing how you respond to treatment. So the bottom line here is: Make sure he’s challenging his doctors and being honest if costs are getting out of hand. Appointments are so expensive so even increasing the length of time between appointments can help and not really impact his treatment.
  • Doctors have ways of getting things discounted, or sharing samples of medications. Make sure he’s being honest about his money struggles with the doctors - they may have advice or ways they can help. For example, my psychiatrist offered to help me by ordering all my supplements through her because she gets a discount as a medical provider, so I just tell her what I need and she orders them for me and I pay her directly and it’s cheaper than purchasing on my own.
  • If things keep going this way we’re going to downgrade our apartment and move to a cheaper place. I really don’t want to do that, but this is a special time in our lives struggling with Lyme so it’s not about what we want, it’s about what we need to do to get me healthy again.

As for making money doing graphic design freelance, I never made a bunch. My biggest income from design was getting full-time corporate work. There’s so much competition out there so it’s really hard to charge rates that you can make a living on. I used sites like TaskRabbit.com to get some new clients, and was able to make several hundred bucks a month off that work, but it was still tough work and long hours. I couldn’t do that now with my current Lyme struggle. If he is able to work online though, sites like TaskRabbit might be good for him. He can grab design work as he wins bids for projects, but also grab other online work (boring stuff like audio
transcription projects, or cleaning up spreadsheets or whatnot) to bring in more money. But he should make sure he’s got a good online portfolio/website, he’s got profiles on all the designers-for-hire sites
(like Behance, TaskRabbit, Design Recruiting companies like Aquent, The Creative Group, etc.) and he might see an income increase. If he can grab handle committing to contract work that’s where he can get some really good money, and some recruiting agencies (like Aquent) offer health insurance to their clients so you might be able to get cheaper insurance that way.

I hope this is helpful. If he wants to talk to me more about the freelance design work he’s welcome to email me: XXXX@XXX I’m not very timely with checking my email so if he hasn’t heard from me he can just keep bugging me I won’t mind! :slight_smile:

Good luck to you guys. I’m hopeful that with the increase in Lyme cases there will eventually be someone with high political power who will make it their platform to change the way our medical and insurance “support” system works, because it’s extremely broken.



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