HealingWell
Search Close Search
☰

Money Spent

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/20/2020 2:11 PM (GMT -5)
I just logged into my account with Microbe Formulas, and it shows how much money I have spent. I only had 2 orders in 2018. The rest have been since them. Total spent over $1,450.

I feel sick in my stomach. I have probably spent 10’s of thousands on all the supplements and herbs in the last 4 years. It’s a travesty the financial loss that sickness and desperation from Lyme that occurs to people.

Many of you have been much more frugal with finances. I have just been in survival mode and never counted the cost.
Posted 10/20/2020 2:56 PM (GMT -5)
It's so upsetting, isn't it? I would mind much less if I were in sparkling health now, but nope.

Counting MRIs, ER copays, acupuncture, craniosacral therapy, LLMD visits, out-of-pocket testing, mold precautions and remediation, supplements, and an AmpCoil, I have spent over $50k.

One acupuncturist got about $6k of my money. She did traditional acupuncture, plus DesBio homeopathy kits, flower essences, a little-known therapy called NAET, reiki, muscle testing, and infrared light pads. She really did sense things there was no way for her to know, so while I don't understand everything she did, I don't believe she was a total charlatan. Others with Lyme and CFS/ME who had seen her felt better. But $6k and I was still sick! Just made me feel like either a fool or a mutant. Or both.
Posted 10/20/2020 3:06 PM (GMT -5)

saraeli said...
It's so upsetting, isn't it? I would mind much less if I were in sparkling health now, but nope.

Ditto^^

Unless I ever successfully get out of mold exposure, I will continue to be struggling to stay above water, downing every supplement and herb trying to keep from going under.
Posted 10/20/2020 3:12 PM (GMT -5)
It's really criminal for the public health systems to totally abandon chronic Lyme patients. I know I'm speaking to the choir here. I haven't kept up with how much I've spent but it's in the thousands. I would imagine I have spent several thousand in LLMD appts alone (300-350$ a pop). I have spent nearly 1500$ on testing alone (not including normal labs) with Igenex, DNAConnexions, and Arminlabs. I've kept my treatments somewhat reasonable, as far as lyme treatment goes, with relying on prescription like antibiotics, and DSF. Like most, I've also spent a good deal on herbs, supplements, silver, desbio, holy crap it's so much. Another several thousand in treatments alone. I'm not sure the exact figure, but I'd imagine it's >6-7K in total after 4 years of treatment.

To this point, I haven't done any of the uber expensive IV stuff, however I'm more open to it now. I became infected just shy of my 29th birthday. I recently turned 34. The stress and anxiety of losing such a large chunk of my life to this disease keeps me awake more at night than money does. My wife and I have a chunk of change to use in trying some different things. I want to make sure I use it effectively and wisely versus desperately. That's tough to do. That said, at this point, for me, Time and health >> Money.
Posted 10/20/2020 5:35 PM (GMT -5)
I could have bought a freaking house for all the money I have spent on various supplement and health measure over the last decade. Its sad.
Posted 10/20/2020 6:05 PM (GMT -5)

Lapis_29 said...
I could have bought a freaking house for all the money I have spent on various supplement and health measure over the last decade. Its sad.


Add to the supplements and pharmas - not being able to work for over 6 years....that's the largest financial loss for me.
Thank goodness we have equity in our home to pull out $$. Can't retire 'til we're 70 ....lol.
Posted 10/20/2020 7:16 PM (GMT -5)
My divorce years ago cost me a lot of money, and it Lyme had a direct impact on that. Does that count as a cost of Lyme smile?

But after so many years with Lyme, I can honestly estimate the medical aspect of Lyme and all it brings must be close to $100,000. The even worst fact is I see no end to it, just as most don't. Even if you are "better," there is a cost to staying better as insurance won't even look at it. Doctors, herbs, meds, therapies, etc... Then there are the numerous doctors and naturopaths I have gone to that have not had my best interest at heart, but theirs. Or maybe they mean well but have no real idea of what they are doing.

As negative as that sounds, it is true. But there have been doctors and naturos who have honestly tried to help and did not take advantage of the situation, but couldn't find the answer. Good people dealing with a hard disease. Still, it causes a financial stress and seems endless.
Posted 10/20/2020 7:53 PM (GMT -5)
Its not a Lyme thing there is no interest by most the medical community to figure out a chronically ill person. Your just suppose to medicate yourself and come back in couple months.

That said I did get my moneys worth out of my insurance this year with close to 300k in medical bills. In a strange way I feel good about it.
Posted 10/21/2020 8:41 AM (GMT -5)
it is these stories and many others from elsewhere and even people i know that have in part convinced me to be my own health detective and where necessary self prescribe.

i simply have not been able to find an LLMD in the UK who I can trust really knows what they are doing - at least to know more than I do from my own reading and enforced Lyme education.

what the best ones have is the experience of treating 100's or more patients with good outcomes
a "feel" you would hope they develop over time - but they are very rare indeed over here.

there are however various private practices offering treatment - and I know of people spending £10's of thousands with them and still being just as ill at the end of it.

so, rightly or wrongly, i have resolved to learn as much as i can about this condition, so i can meet the challenge head-on and try to treat this thing myself.

It's not that I have a high opinion of my own abilities - far from it - the complexity of the human body is humbling, but more a case of a shortage of anyone else who I feel has a better chance.

in fact - if anyone knows of a LLMD in the UK they would trust their life/health/life savings with I would be very happy to hear of them

in the end - the way i look at the money spent - and the years of life lost is
" could i have done anything better knowing what i knew at the time"

if the answer is "no, not really" then i try to park that thought and get on with something that feels like it could make a difference today.
Posted 10/21/2020 11:46 AM (GMT -5)
That's a double edged sword. Imagine how many chronically ill people are either underemployed or unemployed not contributing taxes. Imagine the strain chronically ill people put on the healthcare system that is passed along to everybody. Imagine how many are on government assistance to get by. I would go as far as classifying chronic illness on the whole as a national security issue.
Posted 10/21/2020 12:28 PM (GMT -5)
1000Daisies - how are your sons doing these days?
One was doing quite well, right?
Posted 10/21/2020 3:06 PM (GMT -5)

Lymie24 said...
That's a double edged sword. Imagine how many chronically ill people are either underemployed or unemployed not contributing taxes. Imagine the strain chronically ill people put on the healthcare system that is passed along to everybody. Imagine how many are on government assistance to get by. I would go as far as classifying chronic illness on the whole as a national security issue.

yep - if you project the current rate of growth of chronic illness in general - against the cost of healthcare for it - and at the same time account for the diminishing tax revenues from the reduction in the working population there is a point, not too far in the future, where it bankrupts most western countries.

very few people talk about this impending disaster - but it is real - unless we change something dramatically
✚ New Topic ✚ Reply