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Comment by jamisteven | Hacker News Reader

Being someone who has this disease, I can say its much worse than even this article depicts. I was self-diagnosed after seeing over 10 doctors. First was told ahh its Lupus! Then it was certainly some kind of STD, then Rheumatoid Arthritis, then Gout, then reactive arthritis, it wasnt until I looked at my spreadsheet I had kept to look for commonalities that I noticed every one of them said they were "75% sure it wasnt Lymes". I immediately went to anylabtestnow and had a few tests done for common forms of borellia infection and took the results to my rheumatologist. You would think thats the end of it but no, after months of antibiotics I was still not well and still couldnt walk correctly, I ended up at a naturopath in Seattle. All said and done I lost 30lbs, couldnt get out of bed, pain everywhere, symptoms of amnesia, forgetting everything, scoriosis on my eyelids, and all kinds of other really terrible side affects that I wont get into here.

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I have it too, and as I get older I'm really feeling it taking its toll on my body. The most annoying aspect is, I knew that you could get it from ticks all my life, but yet .. I blew it off and didn't take it seriously.

One warm summer night, I laid down in the grass in a locally cool field, and enjoyed the stars. I woke up the next day with bullseyes all over me, and 4 of the terrible critters embedded in my flesh.

If only I'd paid more attention, I wouldn't always be operating at 60% ..

Take this one seriously folks. If you're in ticks-ville, pay attention damnit. You don't want Lyme disease.

I've got to wonder if I have this too. For most of my life, I've felt like I'm operating at 60%. Every damn day is a constant battle with energy, and focus, and drive. I've been told its depression, anxiety, or ADHD. Prescribed medication, which I've always refused to take.

As a kid we were always playing in fields. My grandparents owned property in rural CA hills where we used to run around for days unsupervised, wading through tall grass with nothing but shorts and a T-Shirt on.

Did I get bit by a tick? Maybe? To my knowledge and memory, we never did find one on me... But then again, we weren't exactly checking every time we came in. I'm sure in all those years, I was bit by multiple bugs. Multiple times. Could that have injected persistent bacteria into my body that feed on my energy, and constantly drag me down?

Maybe it is just depression. But that sure feels like a symptom, and not a root cause. The root cause of all this is SOMETHING, and blanket diagnoses of ADHD and depression don't satisfy my need for an actual answer. With respect to medical practitioners, I still have to say, at times it feels like we're living in the stone age of medicine.

Ever get the bullseyes? Because that is the definitive indicator of infection.

Also, you've got to get multiple tests if you suspect it. One point of data does not certainty, make ..

No, I don't get those rashes ever. I may have as a kid but I certainly don't remember it.

Maybe I should throw in the towel and accept the "you're depressed" argument. 14 years of dealing with 40-60% ... I'm reaching a give up point. Diet, sleep, exercise, all on point for the last 5 years. No improvements.

Get the tests. My practitioners (get multiple opinions always) indicated to me that its not always obvious, and often times people associate the bite with other insects - i.e. spiders and therefore don't bother to screen for Lyme.

Best thing is to screen for the antibodies... but do get multiple tests from different labs.

May I ask why you suggest multiple test from different labs?

Because one should never act on a single point of data.

Always get a second opinion on matters like this - not only can labs get things wrong, but so can doctors.

Of course, this is easier to do in a country that has adequate health care for its citizens, as is the case for me .. so, ymmv.

FYI it's possible to get it without a bullseye rash. Also sometimes the ticks bite you somewhere that's hard to see so you don't notice the rash even if you do have it.

I would presume, you had ticks from a previous encounter as well. In order to get Lyme, you typically need to have a tick embedded for > 24 hours (meaning a really low probability otherwise). And Bullseye rashes don't occur until a few days after the infection of the bacteria.

No, I don't think thats an appropriate conclusion to make.

Tick embedded >24 hours: not necessarily true per my medical examiners - two independent specialists, as I live in an area with high Lyme rates and wanted a second opinion - as should anyone with doubts about it, and as to the second point, maybe its more correct that I didn't observe the bullseye rash until the next days, but either way multiple tests confirmed Lyme antibodies in the days and weeks following, whereas prior test (wasn't my first attack) didn't ..

Either way, don't lay down in a field where deers and rabbits live, in the middle of a warm, sweaty summer.

Did you lie directly on the ground, or on a blanket...?

What still surprises me is that so little is known about this disease in medicine, and so little is known on how to diagnose and treat it.

It's truly something I wouldn't wish on my worst enemy. The combination of severe disability -- worse than many so-called "serious" illnesses -- combined with utter indifference is crippling financially, socially, and psychologically. I was recently reading someone's post on Reddit, and they said they wished they had cancer instead, because at least with cancer, you either get better, or you die. I mean. You don't want a disease that makes you wish you had cancer.

Sounds terrible. I hope you are better now.

I read here in a comment here about a person that went through years of antibiotics, to no avail. What finally helped? A 2 week fast. He said he found the idea on some forum and decided to give it a go, since he had nothing to lose at that point.

Yea, knowing what I know now about fasting, that would have been the first thing I tried, not surprised at all that it worked! Glad he is better.

http://www.smashcompany.com/philosophy/how-i-recovered-from-...

Very informative & helpful article for someone in my family. this tech guy really did his homework, and has some interesting and unexpected details. Thanks!

Fasting to cure the Lyme disease sounds very strange. Almost as the infamous banana diet to cure celiac disease.

There have been some new studies that show that lingering Lyme symptoms are probably caused at least in some cases by "persister" bacteria, that go into a defensive mode during the first deluge of antibiotics and then live to re-infect you after the antibiotics are over. Similar things happen in leprosy and TB if I'm not mistaken. The latest research is about how to kill those persisters. Disulfiram, aka antabuse, is currently in clinical trials, and some doctors at specialty clinics are also using a triple antibiotic cocktail to try to achieve the same effect. I would recommend traveling to one of those clinics if you can afford it...of course they don't take insurance.

Liquid extract of Stevia also works [0] - it destroys the biofilms.

[0]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4681354/

Hope you're better. I had a similarly horrifying experience myself. More and more pain pretty much everywhere, tiredness, headaches, GERD - almost every "vague" symptom you could think of, slowly getting worse over months and years, and no answers from multiple specialists. Luckily it wasn't Lyme (which I got tested for). After getting a large panel of lab tests assembled after weeks of online research, I found high calcium levels, and with follow-up tests diagnosed myself with Primary Hyperparathyroidism (at 28 years old, which is rare). Flew to the USA a month later for surgery (the place where they do it best, the Norman Parathyroid Center, is essentially incomparable to everyone else) and now several months later I am much better.

You can have hyperparathyroidism at any age. Mine was found at 15 and at 30 calcium levels haven't been high enough to justify surgery yet (but other tumors stemming from the same root cause have).

How much did you pay for surgury? It sounds like going to the US and paying out of pocket would be very cost prohibitive.

Paid 13200 USD (they don't publish the price on their web page any more, but I suppose it didn't change much). Supposedly their price is one of the lowest (and you get the best care).

That's amazing that you figured it out. I see a lot of stories like this lately and I wonder why patients have to become diagnosticians for themselves...

As for me, thank you for your kind words. I'm still struggling, and I'm going to an out of state specialty clinic in September. Hopefully they'll do something that helps.

How are you now? My cousin has been all over the country for years working to tame hers and she’s found a combination of diet and cannabis to be extremely helpful.

I am better now but still have some aches here and there but its nothing like what it was before, like the person above mentioned I would recommend a fast first and foremost just make sure its a controlled fast and she has a doctor monitoring her overall health while she does it, esp. if longer than 3 days. Me personally I didnt know about the fasting at the time but the doc had me on a combination of the following: 1.Cats Claw 2.Oregano Oil 3.Thorne ATP Formula 4.Corvalen D-Ribose 5.Thorne Adrenal Cortex

This was in combination with a strict diet, I cant seem to remember all the details anymore but it was something along the lines of 0 sugars, 0 carbs, high fats, lots of greens, protein via white meat only. I would also take a look at Stephen Buhner's protocol, the article below is a good read as well. https://medium.com/p/6e3664fce54f/responses/show

Long water fasts + cardio + antibiotics.

HN is really not the place to offer medical advice.

Anyone reading this with a therapeutic need should see a doctor, preferably more than one.

That's easy for someone who isn't grappling with this "non-existent" illness as most mainstream doctors would have you believe.

I spent 3 years (and thousands of dollars) trying to find out what was wrong with me until a neurologist tested me for Rocky Mountain Spotted Fever. It came back positive, he gave me 2 rounds of doxycycline and sent me on my way. Anyone with experience with prolonged tick-borne illnesses can tell you, that's not going to fix it. I went and got an appointment with a lyme-literate doctor (there's the typical 2-3 month wait for an appointment to see any of these doctors - if you're lucky.)

https://news.ycombinator.com/item?id=20496393

I don't need to be told that tests are unreliable or that doctors can be as misinformed as any of us. I am encouraging anybody in this thread who is personally affected to seek medical advice, not the advice of random internet commenters.

Congratulations on beating RMSF.

My point is people are desperate - and for some it's difficult to find (or pay) a LLMD. There are groups on FB (one of the only uses I have for FB) with thousands of members who give/get advice. No they aren't doctors, but I wouldn't discount their lack of certification - they have experience.

Unfortunately I have not yet beat it (or whatever other disease(s) the tick gifted me.) I'm still on 3-4 different antibiotics and feeling generally like crap. But it's 'only' been 3 months.

Good luck!

Many people see many doctors, and find no cure and no improvement.

After seeing doctors and not getting better, it is useful to get an idea of what worked for other people because it might lead one on the right path.

Personally, I consider advice - both from doctors and on Internet forums - as advice, not gospel. I do research what doctors recommend, because they too are wrong or implicitly optimize for different criteria than you do (cost of treatment or their own liability vs your well being)

If diet helped - than maybe it was some kind of food allergy that was causing the symptoms not the lyme? Maybe you had lyme some time in the past - and this is why the tests were positive - but the symptoms were because of some food allergy causing Rheumatoid Arthritis.

It is possible to get an allergy to beef from a tick bite. For an allergy though, one would expect the symptoms to return as soon as normal diet is resumed.

Diet can play a big factor in autoimmune disorders. proteins leaking from the gut into the bloodstream can trigger a strong immune system reaction which makes the autoimmune disorder flare up.

That is what I was writing about - autoimmune disorder causing the symptoms not the borrelia bacteria. But it is also possible that the bacteria caused the autoimmune disorder first.

>it was something along the lines of 0 sugars, 0 carbs are grains or beans part of such diet or are excluded?

What did you do with/from the naturopath?

https://news.ycombinator.com/item?id=20747225

Pseudoscience and placebos.

The side effects of Lyme's are not well treated or understood. It's terrible for those effected. Medicine is imperfect and there are still many holes in our knowledge. That doesn't mean you should go to a quack like a naturopath.

ps: just saw your answer below https://news.ycombinator.com/item?id=20747225

And how are you doing now ? out of the war zone ?

I have a friend with a similar story.

My wife diagnosed it over Snapchat. After that, the Physician she had been seeing agreed. (edit, Wife is a doctor of Physical Therapy)

The longer I live, the less I think Physicians deserve their Monopoly.

What do you mean Physicians shouldn't deserve their monopoly? Are you suggesting crowdsourced diagnosis?

Perhaps a better approach would be "no cure, no pay".

That way, physicians would have an incentive to actually cure people rather than bill them for some inconclusive diagnostic tests.

However this would lead to over treatment, which also isn't good.

What is worse?

Also, insurance companies are an opposing force here.

Heh interesting, an incentive structure that has insurance companies going to bat for the little guys for the little ones.

do you get a refund if you die?

Yes. The check will be in the mail upon receipt of a death certificate. But the form is at the confusion level of a stripper with a W4. Also for some reason we are going to have the postal service manage the reimbursement.

This is a terrible idea. What do you think of software companies that pay "per bug fixed"?

That's a good idea, as long as software companies also pay for bugs introduced.

This sounds like a recipe for 90% of the money to be wasted debating the line between bug and missed requirement.

Um, how about - pay per hour of program running without crashing.

Shouldn't I get payed for the work my software does, without interruption, day after day after day?

So if you join a company with terrible infrastructure that needs a ton of work, you don't get paid until it's operational? What if there are organizational issues within the company that prevent you from actually resolving things long-term? Rarely is a single engineer empowered to make a difference in the up-time.

Physicians face similar challenges when it comes to the bureaucracy in the world of medicine, but with the added challenge of working on the unpredictable biology of human beings rather than a bunch of transistors that are predictable in their behavior.

And imagine if the system was setup in the way you suggest, which doctor in their right mind would take on patients where the treatments aren't as clear cut? Who wants to work for months or years with no guarantee of pay?

Honestly, comparing the two fields is pointless. I do not envy physicians. They are working within a broken system and most are doing the best they can. Blaming them will get us nowhere.

Good points. I certainly agree that there's no good comparison between the two professions as it relates to compensation systems.

There is a movement commonly referred to as "Outcomes-based Healthcare" that is rethinking the way the system approaches treatment. The focus isn't necessarily on compensating physicians for their outcomes, but changing the metrics that are used to evaluate potential treatment options. [https://www.healthcatalyst.com/Outcomes-Based-Healthcare-Top...]

I've been following ZDoggMD for a couple years now and I really like listening to his perspective on the world of healthcare. Check him out if you have any interest: https://www.youtube.com/watch?v=9hEnAmfTBZs

This generalises to an interesting question: What is the true utility value of any service?

Is it:

- Increased capabilities gained?

- Risks avoided?

- Alternative opportunities enabled (I babysit your kids, you get a night on the town)?

- Enablement of specialisation, expertise, and concentrated and efficient use of capital?

- Other?

Probably some combination of these.

This is a hilarious free market solution when compared to universal healthcare.

How do you apply that when so many conditions are managed, not cured?

Consider the proposal a starting point.

Managing conditions is clearly a useful outcome.

Avoiding conditions is even better.

Payment based on some quality outcome measure -- QALY, or quality-adjusted life-years is one such standard.

https://en.wikipedia.org/wiki/Quality-adjusted_life_year

The Chinese healthcare model -- you pay the doctor when you're well -- is an alternative approach. (The doctor is obliged to try to get you well again.)

Medicaid and medicare are switching to a value based program, where hospitals and providers are paid more for better outcomes instead of the previous pay for service model where they are effectively incentivized to over treat, and not fix the root cause.

Congratulations, you've ensured surgeons don't undertake complex surgeries, oncologists pick and choose the less critical cases, and no one staffs hospices any more.

I agree. I think it kind of happens now when surgeons are ranked on their success rates. They start refusing complex surgeries that might impact their ranking.

There's a reason malpractice insurance exists.

Then you can expect doctors to be strict about which cases they will handle.

This is the wrong incentivization model because it means physicians will do everything to treat the symptoms and not even bother diagnosing the causes.

We already have a pain killer epidemic, and that would make it worse.

I don't know if it's the right incentivization model but there's a difference between diagnosis + cure vs. treating symptoms.

Painkillers treat symptoms but they don't cure anything.

You can't cure what you don't know exists, but you can cure that admitting abdominal pain with painkillers and still get paid (with that model).

The point is that diagnostics are expensive, and if you're not going to be reimbursed to run them, you're going to take the risk to find the cause. What's left is curing the symptoms.

But insurance companies will demand a cure, as they will not pay for a subscription of painkillers.

Insurance companies are incentivized to not pay anything.

They currently demand that patients do not even go to a hospital, hence the price penalties for going to an ER and lack of preventative care coverage. The only thing an insurance company will demand is what they currently do - the lowest cost, which is an Rx for pain pills.

So I guess only people with easy to diagnose diseases will be treated. People with diseases like cancer, etc. will simply be rejected outright.

A number of states allow nurse practitioners, or physicians assistants to do many of the things that only doctors can do in most states, practice independently, admit patients, prescribe medication. But they do not need to go through the match process and residency, so there is not the same kind of monopoly

Nurses and PAs are similarly limited by available slots in their respective educational programs. Our local community college has a 4-5 year wait list for their RN program, as an example.

It is really not comparable though. Doctors are limited by residency and the match in addition to medical school.

They are comparable, though.

In both cases, there's a limited number of slots available for what's fundamentally a required educational program, and increasing that number of slots is difficult on a structural and staffing level.

There is no set limit like with the match or residencies. New schools can open up, existing schools can increase class size or run additional classes to match demand, and they have the incentives to do so.

The match can do that, too. 2019's had 6% more, because more programs joined in. There's no set limit; there's a limit to how many slots Medicare subsidizes, but programs are free to offer self-funded slots over that.

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