Looking for Help/Advice/Support

[Eniala]

I apologize ahead of time that this will be a long story, but please, please bare with me...I found out I was pregnant with my second child about three weeks ago. We are ecstatic! We had been trying to conceive for 11 months. Three days after we found out, I found out I have Lyme Disease. My husband has had it for the past two years. He has been seeing a specialist almost monthly and has been on medicines for most of those two years. He has ups and downs, but we feel he is on the right path.

For me, I have been a wreck. I was scared my baby would get it, and what's worse is I can't take the normal medications that treat it, because they are not safe for the baby. I have high anxiety and spent close to a week just breaking down every day.

I went to my husbands specialist and he was able to put me on safe medications, although they are not going to be as strong/effective. So far, they are kicking my butt. As if the pregnancy nausea and fatigue isn't bad enough, this is making it twice as hard on my body and I feel like I am fighting every second of every day just to get by.

The worst part of this is finances. Chronic Lyme Disease is not recognized by the CDC, therefore most insurances will not cover the treatment beyond the typical first round of antibiotics, which I cannot take due to the baby. We have been spending around $500 a month for my husbands treatment, including office visits, lab work, and prescriptions. Now, we are adding my treatments into the mix and we just can't afford it. I will do anything to help my baby. I have to remain treated for the sake of the baby. We have maxed out my two credit cards for my husbands bills, and have nothing left in savings.

We also had a toilet leak in our only bathroom, which rotted the floor and caused us to rip the entire bathroom apart in a remodel attempt. We have no toilet and no sink. We have been unable to finish this project due to lack of funds. It would not have been such a project, had the toilet not leaked so badly, however now it has become a huge nuisance. The only other toilet in the house is in the basement. With being pregnant, I already have to pee in the night and go all the way downstairs every time I have to go. This is only going to get worse and harder, and it is extremely painful to go up and down stairs due to my Lyme symptoms causing extreme knee pain in both of my knees.

I just want to know if anyone has any experience with fund raising or any other ideas? I hate asking for money, I would like to remain humble, but I'm at my breaking point. I am becoming depressed and fighting with every ounce of energy I have just to get through a typical day. And to add on top of this the fact that we have no money and I am afraid of how we can continue my care, I am so scared for my baby and my family. I have nothing left to do except to see if there is anyway I can get my family the help we need. I just want to get out of debt and back on our feet. I don't want to worry about how I will pay for my next office visit. Anyone have any good suggestions or ideas? I would be so embarrassed to go set up a gofundme account myself because, well, that seems so vain to beg people for money. I don't know what to do

 

[spunky84]

Sorry you guys are going through so much, I cannot imagine

Second of all, if you go the route of fund raising, don't think ill of yourself for it! I've seen fundraisers that were eyebrow raising, but in your situation, I would think it's a legit reason to ask for help. Everyone needs help once in awhile.

Third, have you spoken to your insurance company regarding the treatments? Insurance companies do have typical policies in place, but if they are fought with medical records and can see the medical necessity behind something, they may pay it. It might take a lot of fight, but financially it could be very well worth it. The majority of times, a claim will be submitted and automatically rejected - sometimes they have to be fought with supporting documentation for them to see that treatment is medically necessary and they'll pay (even if just a portion). It doesn't always work, but I would say it's absolutely worth a shot.

I would start off by calling your insurance company and addressing the situation with them (for both you and your husband). They may be able to say that if you can provide such and such documentation, it will be reviewed.

You might run into customer service reps that will just say there's nothing they can do, it's not covered. Ask for a supervisor. Go up the chain of command until you can speak with someone who will go over options with you. You have options even if they try and say they won't work. They don't get to decide if something is covered. If you go through certain procedures, your information will end up in front of a medical review board. Granted I don't feel insurance companies have any business deciding on whether or not a medical treatment is necessary for someone they've never met, but this is where you want your stuff to be reviewed (often by a physician, group of physicians, etc).

Based on what they say, I would ask your doctor's office for their help in submitting the information for you. They may have to re-submit claims with medical records or even provide a letter of medical necessity. If the claims are still denied, your doctor's office may have appeal rights - I would see if they would appeal on your behalf - and you should have appeal rights.

If you have to appeal, either because only you can appeal or you want to make your own efforts along side your doctor's office, I would thoroughly research the information (along with getting a copy of your own records to submit from your doctor) so that you have good information to provide.

If your doctor's office is willing to do this, I don't know how aggressive they would be. I worked in medical billing for 8.5 years. With some of our physicians that we billed for and did appeals for, we weren't very aggressive (weren't really supposed to be either).

The other department I worked for involved procedures/treatments that were still relatively new and often denied for experimental and/or investigational or not medically necessary. Per the client's request, we took a very aggressive approach that actually got some of these things covered and eventually a standard procedure in care.

This may be something that may require an aggressive approach if it's not common for Lyme Disease to be chronic.

As it sounds like this has been really draining for you and your husband, maybe you can even find someone that can act as an advocate for you. You'd have to give permission to your insurance (and maybe some others) permission for this person to speak for you and to submit stuff on your behalf. Maybe a good friend or family member. If not, I would ask your doctor's office if they perhaps have any suggestions. I would even check with your/your husband's employer. Some companies have programs or resources where there may be someone that can act as an advocate for you.

 

[bunyhuny]

Ughh... That sounds like an awful mess to be in. I know the burden of medical woes.

DH and I did fundraising throughout our infertility/IVF treatments. We one-on-one asked those closest to us, and then set up a paypal donation account and posted on FB about what we needed so that anyone else who wanted to help could do so. We raised $3000 towards our first cycle in our first month of fundraising- family, friends, even strangers helped us out! Sometimes, you just have to be honest with people that you need help.

There's so much societal pressure to be self sufficient all the time, to never accept help, never show weakness- well, I can tell you that's utter horse sh**. Your family and friends love you. You let them know the situation, let them know you need help, and I'm 100% sure you will have people reach out and take care of you.

Now that DH and I are in a little bit better financial position, I like to do a little extra for others in my life. Nothing major because we still have huge IVF debts, but just little things here and there to repay the universe for all the kindness we've received. What's funny is people are always like, "Oh no, you don't have to." And I tell them, "Of course I don't have to, I want to! I like doing nice things for other people!" I think most people who have helped DH and me out felt the same way.

Think of fundraising as giving people the opportunity to do something that will let them feel good about themselves! It's a win-win!

 

[Eniala]

Thank you for your support and advice. I was so sick this weekend, I slept 14 hours Friday and was in bed most of the weekend due to nausea and fatigue. I am thankful that I have a very helpful husband who was able to help me with our son.

I am going to look into a gofundme page. I'm not sure what a good amount to try and raise would be, but all I am looking for is enough to cover our credit card debt and future appointments and medications. When I do get around to making one, would any of you be willing to share it around? My husband and my next appointment is in July and at the moment we have no way of paying for it.

I will have to also talk to my insurance company. I just know with Lyme, they generally will not cover treatment. I hate that they can do that, but that is the way it is.

 

[smurfy]

hi

I am sure you have already checked this but in UK if you have a leak of any form the repairs/damage are covered under contents insurance? do you have something like this? often you pay the excess amount but they pay the rest - good luck x

 

[Eniala]

Removed as per the forum rules.

Requesting (through words or implication) money or charity from the general member population is not permitted. If it is suspected that a membership is being used with the sole intention of procuring free goods, services or wealth, the account may be restricted or banned.

 

[Lues]

I'm not sure where you're located, but if you are in the United States, I would also highly suggest looking into clinics and local community action agencies. I know Lyme's disease often requires some level of specialists, but there are often clinics that may have the resources to help you in many ways, perhaps lower some of the costs.

Plus, just a reminder, that medical debt will NOT affect your credit score. Not that that's your concern right now, but I just mean it in the sense that for me, if I have three bills I have to pay, I pay the medical one last, because I know it will never lead to bankruptcy like others might eventually.

The prior poster talked about an advocate. Even if the Lyme's disease treatment isn't covered at ALL, they can still be VERY helpful in getting the costs down. A professional advocate would be able to give you a free consult, and will often only charge a percent of what they save you (so in largely ends up being free to you).

To your comment about not wanting to ask for money because you want to remain humble..... I think asking for help IS humble. I think it's healthy to need help sometimes. Ignoring or denying it does nothing but put you in a worse situation in the future. A saying I've always loved: Only a fool doesn't use all the tools at their disposal. (to be clear, I'm not calling you a fool, I just like the saying). As the previous poster mentioned, people NEED people. The people around us are part of the tools at our disposal. You're not asking for money so you can go to the Bahamas! And you're not MAKING anyone give you anything. People who can, will, people who can't, won't. It's up to them. Hold your head up and high and know that the experience will make you more sensitive to other people in need the future (even if you already are now).

Very sorry to hear you're going through this and I wish you all the best.

 

[spunky84]

Here's some resources I found for financial assistance (or information regarding financial issues due to the disease).

*If these links are not allowed, please advise and I will remove*

Financial Support Resources:

https://lymelightfoundation.org/about-lyme/resources-adults-lyme-disease/ *I think that this one has some good resources*

https://lymediseasechallenge.org/financial-assistance/

https://www.healthwellfoundation.org/

https://www.needymeds.org/copay_diseases.taf?_function=summary&disease_id=124&disease_eng=Lyme%20Disease&dx=15&drp=lyme%20disease

https://www.lymedisease.org/lyme-basics/resources/financial-assistance/

I'm not sure how old either of you are, but this website (https://lymelightfoundation.org/) has grants for those 25 and under.

Even if you don't qualify for anything in the above links, I would also email them and see if they can provide you with resources or contacts.

I would also talk to your doctors (both of yours if you have different doctors) about the possibility of a sliding fee scale. Also see if maybe they know of any prescription programs that will help lower the costs of your prescriptions (even if by a small amount - it'll add up!) or maybe they know of some foundations or resources you can check into.

I don't know where you live, but if you're in the states, I would check and see if you have a community action agency or community health clinic and see if they can help you with resources. I would even look into your local Medicaid program and see if there is any kind of assistance they can provide or resources they can provide.


Hopefully your gofundme page will help you out, and I really hope you're able to find some kind of assistance to help you both through this.

 

[spunky84]

I will have to also talk to my insurance company. I just know with Lyme, they generally will not cover treatment. I hate that they can do that, but that is the way it is.

Even if your insurance company denied all appeals for coverage of Lyme Disease, it's still helpful. If people keep appealing and show a need for coverage, maybe some day it'll change things. Not over night, and maybe it won't help you out right now, but every appeal they receive for something they won't cover actually is a step in the direction of getting them to cover it at some point in the future (even if 20 years later).

That was one of the reasons it was so important for us to keep appealing even though we knew it'd be denied. It shows a need for a standard procedure of care to be put in place.

It's absolutely up to you if you decide to go that direction, but I just wanted to let you know that even if you appealed and it was denied, it's still part of something so much bigger that may lead to change in the future.

 

[Eniala]

Well, my husband was laid off today. I didn't think this situation could get any worse. I'm following up with insurance to see what I can do. In the meantime, I really need as much help as I can get. I haven't shared my story much with people I know as I don't like asking for help, and I was not ready to tell everyone I'm pregnant, however I need a lot of help. Please if you can help, please share my link, please help us. I don't know what more to do.

 

[Ally2015]

Eniala- i am really sorry to hear of your situation and i really feel for you, it is a heartbreaking situation.

Definitely set up a fundraiser and have you for family and friends you could turn too for support, both mentally and financially?

I would share your go fund me page too when you get it set up.

In the mean time I send you lots of positive vibes and a big cuddle. Hope things get better for you.