I am increasingly becoming more and more bitter about the fact that I am 30 years old and feel like I'll be financially ruined for the rest of my life. Let's just say life now, in every single way, is no longer the same. In a short period of time I went from having a comfortable life to impoverished.
The debt is out of control. And I don't qualify for ANY state health care as I haven't been approved for SSDI. I haven't worked in over a year. I've sold everything I own and spent thus far $25,000 on medical expenses and I just got the lyme diagnosis a few months ago.
My LLMD makes me come in once a week. I am paying out of pocket his fees, medications, IV's his supplements and alternative therapies. On the one hand, I'm grateful for someone who will finally help me. But I'm also becoming more bitter and angry, shelling out money for nothing. All because the sicker you are, the more money there is to be made. My fear is that I wouln't be able to continue treatment and not have the means to get well.
I was wondering if anyone could tell me a ballpark figure of what they are spending per week/month on health care? How do you know when you are being ripped off? Do you have insurance? How often do you see your LLMD? What is their average fee? How do you afford treatment?
Thank you Mandy
Posted by NanaDubo (Member # 14794) on :
Hi Mandy, This disease is definitely costly in all ways.
I have insurance that has covered prescriptions but very little of the lab work and none of my appointments. My doctor is an LLND and my insurance company won't touch a naturopath with a ten foot pole!
I had been seeing him once or twice a month until recently when I went off antibiotics. He wants to see me in two months.
I have no way of calculating what the expense has been as I've been chasing for tail for a very long time with this.
Life is in no way as comfy financially as it used to be but I will do anything to be well.
I'm sure more folks will chime in.
Posted by KS (Member # 12549) on :
First off, I don't think it is necessary to be going to visit your LLMD every week....what is his/her rationale?? My LLMDs sees me about every 6 weeks. You could save a lot of $$$ by spreading out your visits. Also, tell you doc that you are in a financial bind...most will work with you to prioritize the treatments.
Don't be afraid to do your homework either and tell you LLMD what you don't want run or what supplements you rather not take in the interest of saving some money.
Yeah, it is all so frustrating....
Keep your eye on the prize...I know this is all so overwhelming now but once you are better, this will all be behind you...you will work, pay off your debts and enjoy life again like you never could have before any of this. You can then put your excess energy towards making sure this doesn't happen to anyone else.....
Posted by alliski (Member # 16337) on :
Hi Mandy,
While reading your post I had to do a double take to make sure I hadn't written it! I have had many nervous breakdowns about my debt due to medical costs and just not being able to deal with the financial stuff b/c I didn't feel well. I am single and living alone which doesn't help. I am considering moving in with my parents because it sounds like I still have at least another year of high medical costs. I wish I had answers for you. My mom keeps saying Oprah needs to do a show on the fact that only rich people can afford to get well. I think the best advice I have is to do your own research on the best treatment. It is one thing to pay a lot of money to get well. It's another thing to pay a lot of money for treatments that don't work, or only work "a little." That's where I am now. Good luck!
Posted by lymebytes (Member # 11830) on :
Mandy,
First, I have to say once per week is absurd! Even w/IV an LLMD won't make you come in that often. Once per month w/IV and once every 90 days otherwise. Maybe you should check into other Lyme doctors - or ask yours why once a week is necessary. That is crazy.
My husband, son and I all have LD. We went from a very nice life to now possibly losing our home and everything else. But it has taken 2 years to get to this point.
I said in the beginning I'd pay anything for my health, but I didn't realize it would actually cost me everything.
I was watching an LD conference video the other day I believe they estimated patient cost to getting well at $75,000 per patient....multiply that times 3 at my house.
You have to rich to have Lyme Disease...and be ready to be broke by the time you are well.
It is unreal...I know.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lymebytes: [QB] Mandy,
First, I have to say once per week is absurd!
GADS, I agree!!!! I'll PM you.
Posted by Keebler (Member # 12673) on :
-
This book, by an ILADS member LLMD, hold great information about pharmaceutical and complementary treatments:
Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
-
Posted by randibear (Member # 11290) on :
sweetie, once a week is highly questionable!!!
are you sure he's a llmd??? i would find out here about others who know of this doc. that's truly outrageous. i go about every 8 weeks.
i thank the good Lord that i have military facilities available to me and federal insurance. they pay 80 percent...
do you have family, can you use the walmart 4 dollar plan, to costco?
Posted by mandy614 (Member # 16524) on :
Thanks for all the replies. I feel better knowing I'm not alone here. Yes, when this is all said and done and I've helped myself, I'm going to make it my mission in life to help other people with this horrible illness.
I am trying to get my meds through pparx.org and prescription hope but it takes a while to recieve them and sometimes the med is unavailable.
Apparently, my LLMD is an ILADS member. Dr. M in SLO, CA I haven't met one person who sees him. Anybody??? He just is getting a little too overzealous, maybe I'll go camp out on this front lawn when I become homeless. Posted by Wimenin (Member # 15294) on :
I think seeing a LLMD once a week is completely unnecessary. Unless you're on your death bed, in which case I would think you'd be at the ER/hospital instead.
I think seeing the LLMD every 6 weeks is fine. His main goal after the initial diagnosis is to critique how the treatment is going, and modify it based on you're feeling and blood work to confirm body functions (liver, kidney, etc.) are going well.
What can you accomplish in one week?
Sorry, but see if you can cut that back to every 6 weeks, or once a month.
As for debt and lyme, it seems everyone struggles with it because of the typical hmo healthcare crap. Even those of us with good hmo coverage are forced to see llmds outside of coverage because of the necessity to get healthy.
Since most hmo drs are ill equipped or under educated on lyme, you have to spend the dollars to get the treatment.
In the end, the ultimate goal is health. What good is having a lot of money if you're sick with lyme.
I think most people, myself included, would prefer to be poor and healthy, vs sick and wealthy.
Posted by kam (Member # 3410) on :
HI. I use to have a home in Grover Beach. Miss SLO County. It is still my favorite of all the areas I have lived in.
I, too, go through times when things seem so hopeless and am fearful and scared.
But, the bottom line for me is to do what I can when I can and to be thankful for what I am able to do.
it is so frustrating not having the funds and also not having what it takes to earn some money as it takes all you have just to get through each day and meet basic needs.
I did have a medical person who wanted me to travel a couple of hours or so every two weeks to see her.
That just wasn't possible physically or financially.
She also did not have a clue as to what it was like to try and regain ones health on a shoestring.
She would tell me things I needed to do to regain my health that I did not have the funds for.
She was working with my LLMD at the time as she would call and consult with him.
She was closer than my LLMD.
Sorry, getting off track here.
I just wasn't able to continue with that plan.
I think the bottom line is you do what you can when you can.
It also helps big time when you are seeing a doctor who works within your limits and resources.
I have heard good things about the doc in SLO County. I think he is in Grover Beach or Arroyo Grande.
I wish I had seen him when I lived in the area. But, perhaps he was not practicing then.
There also is a lady who had a business called Natural Edge in Grover Beach.
The last email I got from her she was not in her business and was looking forward to getting back.
I did not ask why.
She is a natural path and I have been sending her info on lyme disease.
She may be listed and still have the same number if you are interested.
Or I could send you her email.
Posted by groovy2 (Member # 6304) on :
Hi Mandy
Yep this gets Very expensive-I have dropped at least 35K on getting well-
If the Free mepron that I get from --Bridges to Access -- was added in it would be around 85K --
Since you live in Ca. maybe you should make a trip to Mexico to buy your meds-
The meds in Mexico cost One tenth the price of the Exact same meds in the US and No prescription is needed -
Several people including me here on LN buy there meds in Mexico- It is 100% legal and easy -
You can also get meds from MedsMex.com online- there prices have gone Way up but No script is needed and the meds are mailed to you at home -Jay-
Posted by elle108 (Member # 11730) on :
I agree once a week is soo high. We saw my daughter's LLMD monthly for about 6monthds, then about every 6-8 weeks which will continue til she's better.
The meds are covered by insurance and the appts, at least in past along with the labs are also covered...
...But as s ingle Mom of three...it is agonizing to lay out the money and wit for the check so i can pay for other things...like, right now, at this moment...school clothes ring a bell!
I am having a huge yard sale next weekend to help pay down my credit cards that have lso gotten maxxed out during her illness...every bit helps
Posted by adamm (Member # 11910) on :
I actually happened upon an LLMD who takes insurance.
Posted by randibear (Member # 11290) on :
thank you adamm i forgot. my lyme doctor in denton takes all kinds of insurance...
Posted by Dahlia (Member # 17066) on :
Do most LLMDs not take insurance? I'm in the process of finding an LLMD and have gotten many good recommendations on here. I never thought to ask if the doctor takes insurance...I guess that's something else I have to consider.
I left a message for an appointment last week so will make sure to ask about that when they call back.
Posted by Peedie (Member # 15355) on :
I live in So. CA and checked around. Could not find a LLMD who takes insurance. Had one listed that accepted some types of PPO, but when I called the office - the staff was vague as to whether the Doctor treated new bite or chronic Lyme. I went with a doctor whose staff could answer questions and answered a positive - yes treats Lyme in all stages. The expense is really, really tough!!! I only have HMO for myself and my daughter.
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