
Fighting persistent Lyme disease symptoms - simonebrunozzi
https://elemental.medium.com/what-its-like-to-have-lyme-disease-forever-e207ae5e6f82
======
rubicon33
My undergraduate work was in microbiology. While I'm now a programmer, I've
always been in awe of the microbial world and how it interfaces with humans.

I've developed a theory over the years that many (if not all) misunderstood
disorders could be caused by yet discovered virus and or bacteria.

So many people develop bazaar conditions seemingly out of nowhere, that
science simply doesn't have an answer for yet. For example -
polymyositis/dermatomyositis. Theories abound, but so far none of them point
concretely toward infection. I believe (but can't prove) that diseases like
this could be caused by infections.

It's a scary proposition that a random bug bite might be enough to alter the
course of your life. But I would rather we start discussing this as a very
real possibility and not a hypochondriac's way of thinking.

~~~
refurb
That's the exciting thing about biology - despite the amazing advances that
have happened in the past few decades, we've barely begun to understand human
biology and disease processes.

I think back to the discovery of helicobacter pylori as the disease causing
organism for a majority of ulcers. Before that it was always blamed on diet
and stress (which probably play some factor). Amazing that a simple antibiotic
regimen could _cure_ many people of ulcers was a complete paradigm shift.

~~~
exabyte
at the same time how do we reconcile that a majority of the world harbors h.
pylori and doesn't suffer from ulcers? From what I understand, there will
always be "good" and "bad" bacteria inside us, the important part is the
balance between the two. If antibiotics do knock out an h.pylori "infection"
that is causing ulcers that's great, but what about the other bacteria that
the antibiotics might be affecting? Will that offset the scales in another
undesirable way?

------
oblib
I've lived in a tick infested area (Ozark Mountains) for 25 years now and get
bit at least a 100 times a year (probably a lot more, but I don't keep count).

The trick to avoiding Lyme disease is to do a "tick check" everyday and get
them off of you asap. It helps a lot to treat clothes with permethrin but
you'll still get a few bites if you're out where they're thick.

Here's a link to video I made last year about killing ticks in my yard:

[https://youtu.be/TFVDv8swzxQ](https://youtu.be/TFVDv8swzxQ)

~~~
alexhutcheson
Luckily Lyme disease appears to be very rare in the Ozarks:
[https://www.cdc.gov/lyme/stats/maps.html](https://www.cdc.gov/lyme/stats/maps.html)

~~~
mohaine
But not Rocky Mountain Spotted Fever. I've had 2 family members get RMSF in
the last 2 years.

[https://www.cdc.gov/rmsf/stats/index.html](https://www.cdc.gov/rmsf/stats/index.html)

------
faitswulff
Just yesterday lkrubner posted their multi-year battle with lyme disease. I
thought it was a pretty interesting read:

> Slightly off-topic, but for anyone interested, I did write up my own battle
> with Lyme, which went on for many, many years, till I found a simple
> solution:

> "How I recovered from Lyme Disease: I fasted for two weeks, no food, just
> water"

> [http://www.smashcompany.com/philosophy/how-i-recovered-
> from-...](http://www.smashcompany.com/philosophy/how-i-recovered-from-lyme-
> disease)

[https://news.ycombinator.com/item?id=20494464](https://news.ycombinator.com/item?id=20494464)

~~~
NikolaeVarius
That was staggeringly non scientific, and the body of the article readily
admits that he was not diagnosed with Lyme disease, AND that he's also not
sure if it was lyme disease, basing it on the idea that getting bit by a tick
= lyme disease

~~~
davej
It's a personal anecdote of an individual's experience. When you are at your
wits end with an illness and doctors have no answer for you, then it's natural
to want to try stuff with very little science behind it. It's all you have.
The alternative is to do nothing.

Also, Chronic Lyme is notoriously difficult to diagnose conclusively. The
diagnoses that we do have are not widely accepted.

~~~
polyfractal
"Chronic Lyme" is notoriously difficult to diagnose because there is very
little evidence that it is a real illness. While there is some research on the
subject, the medical community still widely believes that chronic lyme is Not
A Thing.

You often find chronic lyme being diagnosed and "treated" by alternative
medical practictioners, homeopaths, naturalpaths, etc who then prescribe a
wide array of untested treatments, batteries of blood tests and panels of
ELISA antigen screens which are so cross-reactive that just about anything
will show up. More often than not patients are being swindled out of vast sums
of money by these alternative "treatments". A quote from the GP article shows
exactly this situation:

> I’ve gobbled up herbal tonics, CBD oil, a universe of different probiotics,
> antibiotics, anti-parasitics, and an endless array of supplements promising
> myriad purported benefits. Most provided little, if any, comfort.

> [...] many people with Lyme flock to “Lyme literate” doctors (LLMDs), who,
> citing the unreliability of Lyme testing, are willing to make a diagnosis
> based exclusively on symptoms. [...] With no scientific consensus on what
> causes persistent symptoms and how to treat them, such options aren’t
> covered by insurance, leaving people like me to fund treatment entirely out
> of pocket. I’ve visited several LLMDs with mixed results. [...] Finding a
> trustworthy LLMD can be difficult and expensive for Lyme patients. The LLMDs
> I consulted in New York offered initial consultations ranging from $800 to
> $2,000, with each follow-up visit costing anywhere between $300 and $500
> each.

It's not to say the symptoms are not real, but they are far more likely to be
fibromyalgia or similar than a mysterious chronic infection of lyme which is
untreatable. Articles like the above and the GP do not help the situation, and
people end up believing random woo on the internet than their medical
providers.

~~~
shmageggy
This response misses the point of the article and perpetuates the same
attitude that has caused the author and many others so much suffering. The
medical community is starting to recognize that there is a gap in knowledge,
diagnosis power, treatment options, and general understanding regarding PTLDS.
Many of these people don't seek alternative treatments for the hell of it,
they do it when doctors have dismissive attitudes like yours.

~~~
polyfractal
I left a reply on the OP (before seeing this), which links to NIH, CDC and a
review of the subject:
[https://news.ycombinator.com/item?id=20511244](https://news.ycombinator.com/item?id=20511244)

It's not that the symptoms don't exist. It's that the symptoms are almost
certainly auto-immune or neurological in nature. There is nothing "chronic
infection" about the situation, and thus any attempt to treat it with extended
anti-biotics, probiotics, diet restriction, etc are almost certainly destined
to fail.

Patients need to spend more time listening to rheumatologists and less time
listening to "Lyme Literate" providers selling uninsured woo at $2000 a pop.

------
ajhurliman
Funny how he only mentions that his blood work was positive for Lyme disease
after the first round of antibiotics, and then fails to mention the status
after the second treatment.

I'm guessing it was negative after that, so his entire tirade is about asking
doctors for antibiotics when there's nothing to indicate that they have Lyme
disease other than the patient's own opinion.

~~~
anarchy8
The article mentions how unreliable testing for Lyme is.

------
avgDev
Pretty interesting read. I have similar symptoms, which were linked to taking
an antibiotic for a kidney infection. I can honestly relate to how this guy
feels.

I honestly have seen docs from top hospitals, mayo, rush, northwestern + more
and everyone has a different theory and just throws meds at me to try. I just
try to manage on my own, which gets really difficult.

I guess I just wish doctors would be more understanding and open about
goals/treatments and communicate better especially since patients with chronic
symptoms tend to know more than your average patient.

------
Alex3917
The scary thing is that tick-borne illnesses have exploded even within NYC in
the last 3 or 4 years. I got bitten looking for morels this spring in one of
the NYC parks, and even though I got the tick off within an hour and haven’t
experienced any symptoms it still makes me nervous that I haven’t taken the 21
days of doxycycline.

~~~
oblib
I really wouldn't worry about that. You got it off fast enough to not worry.

~~~
Alex3917
Tick-borne illnesses can be transmitted in as little as 15 minutes, so it's
hard to say whether it was fast enough or not.

~~~
oblib
Yeah but it was in the Spring you got bit and you got the tick off plenty fast
enough. And not all ticks carry diseases, so try to keep that in mind too.

I'm not exaggerating when I say I have been tick bit at least a 1000 times
over the past 10-15 years and I've never gotten sick from it so I have to
think you've made it clear out of those woods after a couple months now and
have nothing at all to worry about.

------
rb808
Its getting scary out there, my wife has basically banned us going hiking esp
in Spring when the nymph ticks are tiny. Going to the movies never looked so
good.

~~~
newnewpdro
Are nymph ticks even capable of breaking through human skin?

~~~
rb808
Yes, they are the main problem: _Nymphal ticks cause most cases of Lyme
disease. Because nymphs are as small as poppy seeds and their bite is
painless, people often don’t realize they have been bitten. Adult ticks can
also infect humans, but are easier to spot and remove._

[https://www.lymedisease.org/lyme-basics/ticks/about-
ticks/](https://www.lymedisease.org/lyme-basics/ticks/about-ticks/)

------
SolaceQuantum
_" “Information related to disease outcome is not collected by states as part
of routine disease surveillance, which makes it more difficult to quantify,” a
CDC spokesperson told me."_

How is this okay? Serious question. I cannot imagine a single reason why this
would become standard policy.

~~~
zadler
Presumably because it would require actively polling patients to monitor their
outcomes. Its quite common that you don’t hear much from those who get better,
only from those who continue to seek treatment. And of those who stop seeking
treatment you don’t know how many are actually better either.

~~~
simonebrunozzi
I think you are right, this might be the main reason.

~~~
x86_64Ubuntu
No, because that reason would apply to any and all diseases that are currently
polled and where patients get better. But we still poll those people for there
1 and 5 year mortality rates.

------
jseliger
The absence of a vaccine is a tragedy:
[https://www.nytimes.com/2018/08/14/health/lyme-disease-
vacci...](https://www.nytimes.com/2018/08/14/health/lyme-disease-
vaccine.html).

There is some progress: [https://www.theguardian.com/science/2019/jul/20/lyme-
disease...](https://www.theguardian.com/science/2019/jul/20/lyme-disease-is-
solution-on-way), but: "The current leader is Vienna-based biotech Valneva,
which is developing a vaccine that can protect against all six most common
strains of Lyme disease in the northern hemisphere, and is currently in an
ongoing Phase II clinical trial. If everything goes according to plan, this
vaccine could be licensed commercially in five years."

~~~
jasonhansel
As that article mentions, there already _is_ a vaccine (LYMERix). It hasn't
been widely deployed, largely thanks to anti-vaccine paranoia.

~~~
foobiekr
And the fact that a subset of the population turns out to have a genotype that
made Lymerix a problem for them;

[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/)

But characterizing the people who claimed exactly these symptoms after getting
the vaccine as crazy anti-vaxxers because science is easier.

------
polyfractal
If someone wants to read some real medical texts on the subject, I would
encourage them to read the following:

NIH: [https://www.niaid.nih.gov/diseases-conditions/chronic-
lyme-d...](https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-disease)

CDC:
[https://www.cdc.gov/lyme/postlds/index.html](https://www.cdc.gov/lyme/postlds/index.html)

Lantos, Paul M. "Chronic lyme disease." Infectious Disease Clinics 29.2
(2015): 325-340.
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/)

> The CLD controversy does not, however, straddle a simple divide between 2
> opposed scientific factions. Within the scientific community, the concept of
> CLD has for the most part been rejected. Clinical practice guidelines from
> numerous North American and European medical societies discourage the
> diagnosis of CLD and recommend against treating patients with prolonged or
> repeated antibiotic courses 1-21

> Many patients referred for Lyme disease are ultimately found to have a
> rheumatologic or neurologic diagnosis. Rheumatologic diagnoses commonly
> misdiagnosed as Lyme disease include osteoarthritis, rheumatoid arthritis,
> degenerative diseases of the spine, and spondyloarthropathies.26,27,41 Some
> patients are found to have neurologic diseases, including multiple
> sclerosis, demyelinating diseases, amyotrophic lateral sclerosis,
> neuropathies, and dementia.27 Some CLD advocates have argued that these
> various conditions are simply manifestations of Lyme disease,24,42–44 but
> these hypotheses are untenable

In short, there is clearly evidence that people feel symptoms following Lyme
Disease, but there is essentially zero evidence that these symptoms are some
kind of prolonged, chronic infection that remains impervious to treatment.
Extended courses of antibiotics do not improve the situation (and can fatally
make it worse), and all the various woo (as mentioned in the article) do not
help either.

"Chronic Lyme" is far more likely to be auto-immune (rheumatologic) or
neurological in nature. It may be triggered by a lyme infection, just like it
can be triggered by other non-lyme infections. Auto-immune responses are
commonly triggered by severe bacterial or viral infections, and can
persist/linger far after the infection itself has cleared up. But the concept
of a "chronic" bacterial lyme infection has little to no medical bearing.

The fact that this continues is largel attributed to A) auto-immune disorders
being difficult to diagnose and treat due to their unique nature and B)
hucksters, con-artists, and snake-oil salesmen hawking the latest woo to
patients desperately trying to solve their problems. And probably C) a general
movement towars believeing random blogs (like the OP!) over medical providers,
on the basis of "Big Pharma" or other general conspiracy theories.

~~~
power
> But the concept of a "chronic" bacterial lyme infection has little to no
> medical bearing.

From your first link: "In 2017, scientists at the Tulane National Primate
Research Centers, funded in part by an NIH research resources grant, reported
evidence of persistent and metabolically active B. burgdorferi after
antibiotic treatment in rhesus macaques"

From your second link, to the CDC: "Other experts hypothesize that PTLDS
results from a persistent but difficult to detect infection".

------
wallstprog
Just a quick reminder -- if you want people to actually read your stuff,
medium is the wrong place.

There is no way I'm signing up for whatever it is they want you to sign up
for.

------
spraak
It's interesting how split the comments here are. Lots of grey (downvoted)
comments

------
JJMcJ
Bite with red ring surrounding bite site? Get treatment at once.

------
PaulHoule
Note if it wasn't for the alt-health fear of vaccinations, we would have a
safe and effective vaccine for Lyme disease and other tick-borne diseases.

[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/)

So now you get people sick from Lyme going to alt-health practitioners who
prevented them from preventing themselves from getting the disease.

~~~
cycrutchfield
Sounds like a good business model for alt-health practitioners!

------
Wowfunhappy
What I find particularly annoying is we had a vaccine for the North American
strain of Lyme Disease, but no one makes it anymore for humans!

[https://www.vox.com/science-and-
health/2018/5/7/17314716/lym...](https://www.vox.com/science-and-
health/2018/5/7/17314716/lyme-disease-vaccine-history-effectiveness)

------
valec
Something about this smells fishy. Informing that [Chronic Lyme as a concept
is dubious at best]([https://sciencebasedmedicine.org/fake-diagnoses-not-fake-
dis...](https://sciencebasedmedicine.org/fake-diagnoses-not-fake-diseases/)),
this sounds a lot like people worried about "whole-body Candida infections" or
Wi-Fi poisoning or whatnot. Even if the symptoms are real, they could be a
result from the nocebo effect or some other untreated illness.

All of this on top of medium blogs being able to be made by anybody sets off
my pseudo-science alarms.

~~~
overthemoon
Ill-defined and/or poorly understood diseases like this are a magnet for
cranks and grifters, from "Lyme-literate" doctors who don't take insurance and
prescribe muscle relaxants and antibiotics until you run out of money or
ignorant bloggers hawking fake science.

There's a lot of noise re "Chronic Lyme", whatever that might be. That being
said, ~something~ is going on. My wife tested positive for Lyme, went on a
round of antibiotics, and the symptoms didn't go away. She continues to suffer
fatigue and chronic pain.

~~~
linuxftw
There's another tick-born illness that makes people allergic to mammal
proteins. Have her abstain from all mammal products for some time to see if
the situation improves.

[https://www.mayoclinic.org/diseases-conditions/alpha-gal-
syn...](https://www.mayoclinic.org/diseases-conditions/alpha-gal-
syndrome/symptoms-causes/syc-20428608)

------
jaequery
I’ve heard a lot of success stories of treating Lyme disease with PEMF
technology. For those unfamiliar, it is a Tesla-coil emitting pulsed electric
magnetic frequencies. Pretty interesting stuff.

~~~
adrianN
What's the mechanism of action? Has there been a double blind study? Tesla
coils for treating illnesses sets off all kinds of snakeoil alarms in my head.

------
Pimpus
> The author has spent a decade fighting persistent Lyme disease symptoms—and
> convincing those who don’t believe him that his illness is real

It is real. An illness caused by psychology is no less real than an illness
caused by physiology.

Look up the work of John Sarno. You may be amazed that seemingly mysterious
diseases which defy diagnosis can be cured by reading a book or watching a few
lectures on YouTube.

------
TACIXAT
>I’ve personally found that an anti-inflammatory diet that eliminates
caffeine, dairy, grains, and sugar

Me too! I don't (think I) have Lyme though. I had sinus headaches my whole
life as well as an array of digestion issues. Cutting out gluten helped a ton,
but I kept getting sinus headaches, so I kept identifying and cutting out
food. These days I don't eat gluten, sugar, caffeine, sodium nitrites, and
msg.

My brother is diagnosed with celiac disease. I cut out gluten before going to
the doctor, so I couldn't be diagnosed easily. I feel largely the same way as
OP though. The medical system doesn't know jack about this disease. There are
no studies about sinus headaches and celiacs, even though there are plenty of
reports pairing the two. My doctors never suggested this. They would give me
Flonase (treat the symptom!). I told them I had issues with xyz foods and
would be told to not eat those (thanks, duh). Never an attempt to figure
things out with me.

I've met other people with weird auto immune issues. They're really mysteries.
Lyme is actually a big fear of mine. I hear some people develop a meat allergy
and that is a major part of my diet right now.

~~~
dvschramm
Did you follow an elimination diet to find out what you were sensitive to, or
was it obvious? I'm considering an elimination diet but everything I read
about a diet plan are different.

~~~
TACIXAT
Initially, yes. You're supposed to eat only chicken and rice for a month or
two, see how you feel, then add things back in. I was a broke college student
at the time, so I did a deli meat and rice diet. I felt a lot better. In
hindsight it was kind of stupid since deli meats have sodium nitrites which is
a trigger for me, but I still felt scores better.

It took me about 5 years, from 23 to 28 to identify everything. It was a lot
of "I got a headache, what did I eat, what were the ingredients", then
correlating that over a long period, then testing what ingredient I isolated.
For sugar and caffeine it was also a conscious choice to try cutting them out,
I think those were more withdrawal situations than the other ones.

An example, I was eating at a gluten free restaurant regularly. No gluten
means I'm good, yea? Still getting sinus headaches though. Maybe I'm going
crazy, so I ask them what they think. He points out the sodium nitrite in the
pepperoni. Correlated that with bacon, other deli meats, "uncured" things that
have celery powder instead (contains sodium nitrite!). Then there is the
sauce, tomato has glutamate, also tomato sauce often has sugar, these were a
different time scale of headache though.

Cutting out sugar was by far the hardest. I went back and forth on it many
times. I eventually got sick of the full withdrawal when cutting it out fully
and decided to not start again.

Most people asking about this have digestion issues. These are usually caused
by FODMAPs [1]. I had digestion issues with gluten and high fructose foods
(fructose malabsorption). My brother is lactose intolerant. If that's what
you're looking to isolate I would start with those.

Good luck! I highly recommend giving it a shot. Changing my diet changed my
life. It's not true for everyone but all of my health issues were coming from
what I was eating.

1\.
[https://en.wikipedia.org/wiki/FODMAP#Sources_in_the_diet](https://en.wikipedia.org/wiki/FODMAP#Sources_in_the_diet)

~~~
davej
Issues with deli meats could also point to histamine issues and mast cell
activation syndrome. I'm not saying it applied to your case but perhaps it's
something for others to be aware of.

------
forgotmypw
I've done a lot of research on tick-borne, as well as interviewing others, and
my own personal experience.

My protocol for being in tick areas is now as follows:

* No sugar, including "stray" sugar from processed food, like "cane syrup", "apple juice", etc.

* No processed food that digests fast and floods my body with nutrients, e.g. bread, cereal, etc.

* Light diet, intermittent fasting.

* No coffee.

* Lots of fresh garlic.

* Frequent tick checks.

* If I get bitten, no sweets of any kind, including fruit, for a few days.

* If bitten by the smaller species, and it's on long enough to leave a red mark, 2 days of antibiotics _right away_.

~~~
Wowfunhappy
> 2 days of antibiotics right away.

I wonder if this is actually wise, given antibiotic overuse/resistance.
Although, I suppose the downside would be for society, not you.

~~~
forgotmypw
Every animal in factory farms is given antibiotics.

2-day antibiotics doses are commonly prescribed, and in fact as Lyme
prophylacsis too.

~~~
Wowfunhappy
> Every animal in factory farms is given antibiotics.

• This practice is absolutely terrible.

• It isn't _quite_ as bad, as animals usually (!) breed diseases that are
harmful to animals rather than humans.

