Money to Pay for Treatments

Well honestly, WalkingbyFaith, I can understand why you might feel frustrated or shut out by a lack of funds... but I can't think of a single case I've read where any of those treatments you mention (ozone, hyperbaric oxygen, nutritional IVs, etc.) has actually cured anyone. And I do think doctors may over-hype some of those precisely because they are such good moneymakers...

Because misery (often) loves company, I thought I'd let you know you're not alone.

I've been unemployed for three years. I spent my two years of emergency savings; sold my washer, dryer, and watch; moved 1,100 miles away to live in the basement of a friend's house (in the $#@* freezing north); and have now been dipping into my small retirement plan.

about 18 months ago, my dental bridge broke that has left two teeth uncovered (that were ground down, in order to secure the bridge) this entire time, as I have no dental insurance. I have no private medical insurance and have been trying to get assistance from the local Veterans Affairs (VA) Hospital. Getting help from a slow-moving, bureaucratic government institution during a pandemic has been about as good as you would expect.

Many of my shirts have holes in them from wear and frayed necks and sleeves, as I've had them for at least 12 years that I can recall. My "running" shoes (I can't run) are at least four years old and the bottoms are slick from wear, as are the soles of my "hiking" shoes (no hiking, either) which are at least as old. I've worn socks until they've had holes in them...then worn them longer, sometimes wearing two layers.

In the next month or so, I have to leave my friend's house and I have no set place to go. Unless something changes, I'll likely move into a cheap motel somewhere that will offer me a "reasonable" weekly or monthly rate and I'll have to find a small storage unit to store what few things I do own.

Hopefully, my car will last, as it's 19 years old with a transmission that's been in a state of gradual deterioration over the past few years. It also has an oil leak that I've not yet been able to repair, due to lack of money. The car is also due for a new timing belt.

Tomorrow, according to the tool on the IRS website, the latest $1,400 economic impact payment is due to be deposited into my account. about $400 of that will go to my credit card...which I've been using to buy groceries. I owe my friend at least $800 for my share of the utilities that I've used over many of the months that I've been staying with him. Fortunately, he's not pressuring me for the money, but he has to be paid.

At the point I quit my job, back at the start of 2018, I'd already spent at least $30,000 in medical expenses for my issues. Since then, I've spent more, but I haven't tracked it. Last summer, I wasted several hundreds of dollars (likely more than $1,000) following some quack chiropractor's guidance over a six-month period, with no obvious benefit. Since then, I've been leveraging Whole Foods Market's liberal return policy, when it comes to obtaining supplements and even some other things like toothpaste, soap, and food.

Despite all of this and not having the stamina to do very physical jobs, I've been applying for work-from-home jobs doing technical support work like I've done for years. Now that I'm older, though, I'm finding it difficult to even get a response to my applications. I've had a few interviews, but haven't received any offers. One person said "You obviously check all the technical boxes" (meaning, of course, I have the technical skills and experience), but they hired someone else.

There's more, but I've gone on far too long already.

So, I have some sense of what it's like to have financial difficulties. I've read on here about people buying new homes, remediating homes, buying expensive air purifiers, going to health clinics that cost a fortune, buying loads of supplements (as I used to be able to do), getting all kids of specialty testing, buying various healthcare products (IR saunas, HBOT chambers, PEMF devices, etc.) and assume they must still be able to work and make good money, have a working spouse, be getting money from parents or family members, have taken the equity out of their house, be on disability, or raiding their savings account like me. Or, some combination of these.

These days, I've switched my mindset from trying to get better (which I can't afford now, anyway) to trying to ensure I don't spend what remains of my small retirement plan and protect myself from being homeless in the future. Years ago, I heard Anthony Robbins claim that people will do more to avoid pain than to gain pleasure. That's turned out to be the case for me, anyway.

One day at a time. Sometimes, maybe even one hour or one minute at a time. Things can change in an instant. There are plenty of people out there that are in far worse shape than me.

Dude.. just wanted to wish you luck.

I imagine the "work from home" field is highly competitive right now.. really tough to get a foot in the door. I hope things ease up soon.

Thank you, everyone, for the nice wishes. I greatly appreciate the sentiments.

My post wasn't meant to be a "woe is me" pity party, though it must look that way. I feel like I can endure a lot and I handle things better some days than others. While I do worry about my future (financial and otherwise), lately, I've mostly been angry about it.

* Angry with myself for getting into this situation

* Angry with so many quacks preying upon the chronically ill and draining our money with expensive and unproven tests, treatments, and supplements

* Angry with others who seem to glide through life with many resources, few problems, and no appreciation for what they have or the suffering of others

And, just angry in general...with nearly everyone and everything. What a charming personality. At least I'm single, so I don't have to worry about potentially blowing up a relationship.

Anyhoo...

WalkingByFaith: Thank you for your comments. While it'd be unlikely that I'd let you buy me anything, I'd be happy to have a meal with you and discuss life. Maybe we could get Georgia Hunter to join us and pick his brain.

potsnpans: I'm grateful for your good wishes. And, of course, you're quite right about the competition for "work-from-home" jobs. I worked from home for nine years of the ten-and-a-half years I worked at a previous company. Leaving was a tough choice, because I made pretty good money, had full benefits, didn't travel, and didn't work much overtime during the week I was "on-call" each month. But, I had to quit, for my mental health.

1yrinVA: Many thanks, friend. I've not applied for Social Security disability, but have considered it. Much like you already noted, I've also heard the process can be grueling and really wear-down people. I have a (non-Lyme-related) friend for whom it took over two years and the involvement of attorneys to get approved for Social Security disability. Then, every few years, he has to recertify. But, for Lyme and Co-Infections, I feel like trying to get approved for Social Security disability would be like trying to push a boulder up Mount Everest. I don't care what my collection of symptoms is called (Lyme, Chronic Fatigue Syndrome, Fibromyalgia, etc.) and I'd be happy with whatever diagnosis works. My hesitancy about Social Security disability is similar to my hesitancy with filing a claim with the Department of Veterans Affairs for health issues which arose during my time in the military.

Walking by faith- you really have to do your homework to save money with this and sometimes you need to drive further than what you want.

I had three beater vehicles at one point from 15 to 26 years old, and borrowed a more reliable vehicle a couple times to drive a couple hundred miles in the winter.

other than anabiotic’s I really didn’t do any of the more popular bazaar treatments. My LLMD was 160 bucks for a half an hour appointment. And I also found a couple of natural path , Functional MD type of doctors that took insurance, the deal was they had to be careful not to give too many details of the appointment in the insurance paperwork in order for it to be covered.

I did spend more money than most people on testing, but I spaced them out a part so the financial pain didn’t seem so bad LOL.

I’ve never in my life been rich, or poor from over borrowing, but I’ve also usually had more than one source of money coming in. When you have lots of hobbies and know people who are self-employed who might need your occasional help, ....well, all of that worked out for me.

I did work in pain for years because I had to. sometimes you have no choice, but there were times when I changed my job to one that would be easier for my brain and body to deal with.

about 80% of the jobs I had also had some form of flex time meaning if I wanted to take a longer lunch to go to sleep my car a mile away at the local park, I could do that, And I did many times. Come to think of it I haven’t done that on lunch in about six years now.

I even had a lacrosse ball at work to melt away the pain some days and whatever body part hurt. I would often sneak into some vacant office or storage area to do myofascial release.

Now , For the last few years that I’ve been 90% better in addition to my full-time job I have a part-time self employed side gig. Even though it’s something I like doing, I do get burned out on it once in a while But I’m also 100% in charge of my time when I’m doing that. I’ve actually made back all the money that I spent on lyme treatment and then some.

——————————

Kind of off-topic : One thing I always tell young people in the non-lyme world is it’s great to follow your passion but not so easy to make a living on it .....therefore you can always make money off your passion on the weekends and if you’re able to do that you may never be unemployed in your life.

The Thing with so many young people nowadays though - they don’t seem to have intuition to take it upon themselves to learn something on their own - somewhere down the line society told them they need to go to school for everything - using more time and money. Spending their youth on their smart phone Wasn’t so smart after all.

Post Edited (astroman) : 3/18/2021 10:37:07 PM (GMT-6)

Hey Dude,

I'm so sorry for what you're going through.
I was in a similar position a year ago, and I ended up living in a cheap motel for a while as I had nowhere else to go.
It was awful...

I'm only in my 30's so take this advice for what it is but the comment that stood out to me was this:

"Years ago, I heard Anthony Robbins claim that people will do more to avoid pain than to gain pleasure. That's turned out to be the case for me, anyway."

You see my mistake (besides just being completely exhausted from even trying), was to accept being reasonably ok (read: having a motel as a possible option) and to stop trying to really live better than that.

It's this trap of feeling "comfortable enough". But I quickly realized I was wrong because living in that motel was a really awful experience.

I've been in your position and I know how annoying it is to hear this from people. The good old "get out of your comfort zone" talk. Because let's face it, nobody really knows how you or any of us with Lyme/chronic illnesses really feel.

But I wish that somebody had told me that living in a motel is past that fine line of being "comfortable enough". Whereas I thought it was still a step before homelessness, while technically true, it's not a pleasant experience. The people that occupy these places alone is a reason to stay away.

I hope you don't take this the wrong way. I just hope it helps to maybe motivate.

But I also understand that sometimes no matter how hard you try, things just aren't working out.

I'm rooting for you 1000%.

Take care my friend.

Astroman and Rainycloud,
You both posted some good food for thought.

As for obstacles to working, I am in a different boat than most on this forum. My most disabling symptoms are brought on or exacerbated by exposure to mold and water damaged buildings and exposure to fragrance and other chemicals. That leaves few places and people for me to be around and feel the best and most functional.

The longest period of reasonable and sustainable improvements that I made was 2 months during Jan-Mar 2020. That went away as I started spending more time in the house that I now live in. I have been on the verge of fleeing this place numerous times already in the last 4 months.

While I lived in my car for 11 months while we were still at the relative’s place, that arrangement wouldn’t work as well here. Besides that, I took my car to the car wash a week or so ago and vacuumed it out. For reasons I can’t verify, my car became wholly contaminated with mold toxins from the vacuum. The car smelled like a stale vacuum cleaner for many days afterwards, and I still get burning tongue and mouth in the car.

I had thought that if we ever got a clean house that I didn’t react to, that maybe I could recover enough to find a way to work from home. Finding safe housing for a very sensitized person has been more difficult than most can ever imagine.

Up until recently, my chemical sensitivities were still better, but that has changed in the past few months.

Not trying to make excuses. Just saying that I am still stuck in trying to survive daily crises and trying to be thankful and relax on days when I don’t feel so inflamed.

I have spent so much time, money, thought, and energy into how to deal with mold for the past 2 years that I all but abandoned treatment for Lyme/co. When I first started Buhner’s protocols, I could feel the herbs doing something. I had herxes and would get new symptoms when treating.

Then, somewhere along the way, I realized I felt worse but it wasn’t really herxing. I was getting more and more numbness and foot pain and weakness. I finally realized it was either from MCAS related to mold exposure or it was from fungal or other gut microbes. Since dealing with UTI symptoms and taking 2 rounds of antibiotics in the last 7 weeks, I am not well and not sure how to recover except watching my diet.

In other words, the saga of shear survival and the gerbil wheel of stress marches on.

EDIT:
BTW, I realize that in many ways, I am far better off and more functional than many with Lyme/co. I have never been hospitalized, bed bound, or house bound. What Rainy Cloud said is very true, though, none of us knows exactly how the other person feels. While some may experience a particular symptom as an annoyance that they plow through, another can experience disabling pain or maddening anxiety from the same symptom.

Post Edited (WalkingbyFaith) : 3/19/2021 9:45:07 AM (GMT-6)

The Dude Abides said...
Astro - Thanks, buddy. Maybe I should spend my $1,400 stimulus check on lottery tickets.

Ha ha,...........but it would be interesting to know just how many people will actually do just that. Hopefully the winners will be people who really need $.

Ive never heard of any loto winners spreading their wins around to people in need (?), how cool would that be? Its prob happened somewhere by now I hope.

Well, I received a "Stimulus Check", which is kinda' like the lotto as far as I'm concerned. I didn't really need it, so I donated it all to the Local Food Bank. I don't know anyone working/volunteering there nor do I know anyone getting food from there. It just seemed like the right thing to do.

Wasn’t there s lyme foundation of sorts that has financially helped those in need?

Asking for donations prob isn’t for everyone, but what about “go fund me” page/site? If it’s for more common treatments, abx , rx meds or just clinic DR cost, I’m sure some would donate.

WalkingbyFaith said...
I have spent so much time, money, thought, and energy into how to deal with mold for the past 2 years that I all but abandoned treatment for Lyme/co. When I first started Buhner’s protocols, I could feel the herbs doing something. I had herxes and would get new symptoms when treating.

Then, somewhere along the way, I realized I felt worse but it wasn’t really herxing. I was getting more and more numbness and foot pain and weakness. I finally realized it was either from MCAS related to mold exposure or it was from fungal or other gut microbes. Since dealing with UTI symptoms and taking 2 rounds of antibiotics in the last 7 weeks, I am not well and not sure how to recover except watching my diet.

Just curious, do you think Lyme and Co (particularly Bart) are still a factor in your symptom picture?

Or do you think the time you spent on Bart herbs took care of it?

Well there’s been plenty of discussions on SIBO and candida the easiest thing to do with those is eat accordingly. You can eat accordingly AND not go broke but it will be very bland tasting and of course you have to have access to a kitchen which might be a problem in your case. Since you have a house now that it’s almost summer you could cook outside. Thing is when eating whole foods you’re just cooking and eating individual items it’s incredibly simple.

I had so many meals of roasted or grilled chicken meat mixed up with green beans and brown rice......over and over.

Funny thing is even though brown rice is a carb it never seem to set off my Candida like other carbs did.