How does the average American afford treatment ~ I am newly diagnosed

[Daisychic1]

If the average american were to get this disease, and not know it for years, the High dose LT Antibiotic treatment plan would be near impossible, even if they started out financially secure.

Over the course of two years, it would cost close to $50,000, 90% not covered by insurance. If the figures I have seen most recently are correct, that is equal to one year's gross wages. This is the plan most everyone wants, because so many people have had success stories, right?  Where can I find reliable statistics?

Somehow, I know there is purpose in being where we are.  Being in the same plight as the majority of americans who get this disease, I can understand the desperate and angry feelings others feel at the injustice of the situation.

But I view it differently.  It kind of is what it is...right now.  We just need to make the best out of life and stay focussed on our duties and refining our character through it..  My compass is being completely honest about our situation.  At first, I felt like it was okay to ask for help.  But that was before I understood the situation as I do now.  (Ami I missing something?)

I have not found any studies that prove high dose LT antibiotics are the most effective, and without that proof...it seems impossible for me to justify such a high cost.  Unfortunately, none of the protocols seem to have been adequately studied, nor can I find reliable, objective statistics for success by protocol.  Is this the reason there is so much controversy?

My friend, a Stanford doctor who was misdiagnosed with Lou Gehrig's disease--only to find out himself that he had Lyme Disease--is convinced that the system is so weighed down politically that we are being failed.  I have read this also.  But *even that* can't be proven for certain. We are simply in the middle of a very ugly situation.

This is my understanding so far.  How can I ask anyone to invest in a treatment that can't be guaranteed to an acceptable percentage of effectiveness?  It's one thing to risk our own money, but the effects of this disease financially...in the series of events that occured in our lives...well, we simply don't have the ability to follow through on a plan so expensive.  I think we would end up asking our children to sacrifice a great deal, and still come up short.

I keep hearing stories of people who are not better, after following protocols--the best they *could afford*

[JackieCalifornia]

I haven't any quarrel with you, Daisychic.  We have all been through bad times with Lyme, some of us worse than others, and I look forward to the day when we are all well again and this is all just a bad memory.  

Best wishes to you and yours -- J.

[freefallin]

One thing people either don't understand or refuse to acknowledge about my situation is that I've been sick ever since I was 14 years old. I wouldn't be surprised if it was earlier than that since I recall short periods of time where I would have trouble pronouncing my words ever since I was around 12, but I say 14 because that's when issues that were long-lasting and impossible to shrug off began. So unlike those who got sick later in life, I didn't have much of a chance to get a high-paying job and accumulate a financial security net. That's why I have so little, and I do work jobs from home, and I do work them often. It's not uncommon for me to work for 16 hours straight, and I have the work logs to prove it. But these jobs don't always pay much. The one I have now pays $9/hour, and I'm trying to milk it for whatever I can while the job is still around. However, in the past, I've done jobs that paid $4/hour on average and have written articles for $3 a piece. If anyone knows of a better type of employment that someone with my cognitive and balance issues can hold, feel free to let me know. Otherwise, reserve the judgment.

[Daisychic1]

Jackie,

I scored the fifth highest score on the CPA exam, and have worked all my life since twelve years old.  Hard work, paying your share, and being able to lift others in their burdens has been my philosophy in life.

But seven years ago, my health started going downhill inexplicably.  We finally found out to a 98% specificity the cause was Lyme Disease.  By the time this was discovered, we lost everything.  

I have decided, that there is only one constant in the equation between the protocol choices, the principle of affordability.  There doesn't seem to be numbers yet of any kind to distinguish effectiveness between the protocols.  (In my limited search so far) -- though I have the personal testimony of the Stanford doc who diagnosed me that his protocol worked after about six months, and now after a year, he is 80% better--back to practicing medicine.

Unfortunately, we were completely bankrupted by the loss of my income for five years and whatever choices we could have done differently to handle the situation better.  So, we are where we are.  Before I learned about the difficulty to compare protocols, we started on the treatment of this doctor who is a friend of my husband's.  Now I know differently.  I am re-evaluating and finding the process difficult to sort through,

The only principled choice I see is to select one by affordability not by testimony of effectiveness.  This is going to have to be a leap of faith...that the purpose for life can be attained, sick or well.  

I am grateful for having the opportunity to be successful, and now must find a way to be grateful and find joy in a different set of circumstances,

[wonko]

For me I had to look at what NOT treating would cost me.  I got hit with illness shortly after finishing school, which for me was a long-term investment that went into my late 20's.  Lyme made it so that I couldn't even work full time, let alone live up to my potential earning power.  All of the mainstream doctors, even if they did believe something was wrong with me, had no plan of action, no treatment to offer whatsoever.  So I either had no treatment, or the option to work with an LLMD.

I was also fortunate and while I paid for office visits, most of my prescriptions were covered.  After treating for less than a year I was able to get back to full time work, and went on to get a better job.  So for me the real cost would have been to let myself get sicker and sicker without treatment.  I'm sure I would have lost all ability to work and probably would have ultimately needed to seek assistance just to get by.

[freefallin]

Thanks, I already looked into those the other day, but it appears as though I won't qualify for the same reason I was never able to qualify for financial aid in college. I'm a dependent and still live in the same house as my dad, so his income counts as my "household income," and he makes too much money. Doesn't help me any since he won't give me a cent of it since he doesn't even believe in Lyme and is already in major debt from paying for all of my mom's cancer treatments, but yeah. Plus, LymeTap wants my 1040 tax form, and I don't even have one of those since I've only ever done really low paying freelance jobs online...so low that I wasn't required to file taxes in previous years since I was still a dependent in school.

[mojogal]

If you are under 25, there is financial help. Lymetap for help getting the diagnosis and lyme light foundation to help pay for your LLMD. Definetley go after those.

[freefallin]

Well, there still aren't any Lyme docs, really. The lady was just saying that he's been willing to order the tests for people in the past. She wasn't sure if he's proficient in treating it, and he also charges $250 per visit (doesn't accept insurance), so I'd probably only see him once to get the testing anyway. But it's something. :)

[JackieCalifornia]

I hear you.  I've also been there.  

Getting the diagnosis is the first step.  Then understanding the treatment options, and deciding which to pursue, and part of that decision is cost and the sources of funding.  

Step by step -- I know it seems overwhelming, but just a few days ago you thought there were no Lyme docs in your area -- things work out.

You're doing fine -- just keep on going!

[freefallin]

I'm not diagnosed, but if I were to be, which I may be soon since the Georgia Lyme Association just told me about a doctor here who has been willing to test people in the past, I'll be in a similar predicament. I just simply don't understand where people get the money for all of the treatments they go through. The people in Under Our Skin were talking about paying hundreds of thousands of dollars for treatment, and I was just thinking, "From WHERE?! I have a whopping $2,000 in my name." Granted a lot of people definitely have a lot more than that, but a lot of people also have many other expenses that I don't have since I still live at home with my dad.

And if there were a decent chance that treatment would get me better, I would spend every last cent that I have and find a job that I'm actually capable of doing and work my butt off there to bring in more to put towards treatment. But there are so many different protocols out there, and they're ALL bloody expensive. So what happens if I pick the wrong one, spend every penny I have on it, and it doesn't help me in the least? I give up, I guess. I could try to make the money back and try again, but it's really hard for me to hold a job because of my cognitive issues. I do freelance jobs on the web now, and the pay is disgustingly low. It would probably take me at least five months to replenish the $2,000 I have now.

Everything's so convoluted, and I can't even process all of the details mentally let alone figure out what to do.

[JackieCalifornia]

I hear you, but there's no such thing as a free lunch.  If you aren't paying for your insurance and for whatever the insurance doesn't cover, then someone else is ... like me.  Sorry, but there are limits to spreading the pain that way.  I know it's a popular concept, but the problem with socializing anything is that sooner or later, you run out of other people's money, as the daughter of a grocer once said.  

Would you expect to ring your next door neighbor's bell and say, "Hi, I need a bottle of antibiotics, it's $50, kindly hand it over."  Uh, no.  There's always that mythical 'rich person' out there somewhere who can be forced to pony up -- indirectly, of course, through the government.

There are always needy people, and it is good to help them.  The problem is that suddenly now everyone wants to be classified as needy, and expects everyone else to kick in.  Simple math says:  that won't work.

If you need help paying, then apply to a private charity for assistance.  Many hospitals also provide charity care, and MDs may do so as well.  But this supposed bunch of filthy rich people out there who supposedly aren't paying their fair share (which is defined as something you want or need that you want someone else to pay for) -- well, the math just doesn't work.

You ask:  "How can I ask anyone to invest in a treatment that can't be guaranteed to an acceptable percentage of effectiveness?"  Define 'acceptable percentage.'  And who are you asking to invest?  If by 'invest' you mean to pay for your care, I don't think you can in good conscience expect that of someone else just because you want them to pay your way.  The Soviet Union tried the system of the government owning all the means of production ('from each according to his ability, to each according to his need'), and it simply doesn't work no matter how much power the government has.  Humans just don't operate that way.

If you think the long term antibiotics are not effective, then don't take them.  If you think they are, then pay for them, and if you honestly can't pay for them, then seek charity/welfare.  But you must contribute to the extent you can.  Otherwise the whole system falls apart.  The buck has to stop somewhere -- there's not always a deeper pocket or a richer person out there who can be forced to pay your way.

[Ricobord]

You ask excellent questions!  

The controversy is so complicated and bitter, it is almost incomprehensible. I am still stunned sometimes, to realize the massive suffering and costs of this insidious disease, primarily because the so called "experts," the ivory tower researchers who treat a few patients only as part of their studies, are in massive denial about the breadth and depth of the disease, the coinfections, the other complexities that come along with the Lyme complex, and the treatment issues.

Someday, books will be written about the shame of the "establishment" that withheld diagnoses and treatment from tens (maybe hundreds) of thousands of patients, and wasted decades and countless research dollars that could have been spent finding real solutions.

Yes, there are many stories of people who used savings, sold their house, took money out of retirement, or asked for help to pay for Lyme treatment.  Cost varies greatly by location, by patient, by doctor, and by insurance company. I am one of the lucky ones in that my insurance is paying most of it. But I have also spent a fair amount on supplements to help my healing process, along with higher grocery bills for gluten free food and more organic foods.  When you are forced to choose between your savings account and getting well, I personally think getting well is the right choice.  I figure if I can get well, I can go back to work to make up for the money I spent on Lyme.

There aren't official studies on the various treatments used by ILADS docs (LLMDs) because such trials are very difficult and very costly. Usually studies like that are done with CDC and/or NIH funding. But both organizations have stubbornly refused to give funding to researchers who don't agree with the official IDSA dogma.  The whole system is biased.  (That is why I think the best place for a tax paying American to make a difference is through our political system to expose the bias and intentional blindness of the CDC and NIH to force change. If they no longer supported the IDSA's position, then things would most certainly change, as when the AIDS community shamed the CDC into changing its tune back in the 80's.

Different LLMDs have different approaches, and over time, some have shown better success than others. The "studies" are going on real time in real life on real patients, by doctors willing to try different things to help a patient get well.  The key is in finding a doctor with an approach you are comfortable with, who is interested in trying to cure you, not just help you find a way to manage the disease.  

If you would like to read about them, you might get a copy of "Insights into Lyme Treatment," by Connie Strasheim.  You can read the first chapter here
http://www.lymebook.com/steven-harris

There is a percentage of long term-Lyme patients who just can't seem to kick the infection, and are indefinitely on maintenance antibiotics or special herbal concoctions to hold it at bay. I could end up one of those, as I had it 6 years before diagnosed, also have Bartonella, and had it go dormant in me for up to a year, which means I have biofilm communities that are hard to eradicate. I am optimistic, though, and fully intend to be cured.