
What It's Like to Have Severe Lyme Disease - Hooke
http://nymag.com/scienceofus/2015/06/what-its-like-to-have-severe-lyme-disease.html
======
pauleastlund
I dealt with Lyme Disease about a decade ago. Some of this sounds very
familiar -- before I was diagnosed I went to the hospital multiple times sure
I was having a heart attack, and each time was told it was just stress.

The neurological symptoms I dealt with were really creepy. I would
periodically realize that I had no idea how I had spent the previous day or
two. The final straw that led me to seriously start hunting for a diagnosis
was a college exam. I came down with a fever just as I was getting ready to
prepare for the exam. The fever lasted several days. After I recovered I
e-mailed and scheduled a make-up, began to read the material from the exam,
experienced profound deja vu, and realized four hours into studying that I
had, during my fever, read all the material, gone to class, taken the exam,
and lost all memory of having done any of it.

After I got diagnosed I spent years on antibiotics, including most of a year
with a PICC line in my arm and most of a year getting regular intramuscular
injections. Some of the medications effectively incapacitated me with
headaches and brain fog. Metronidazole was hell.

Even so, my case was a very mild one compared to many of the other Lyme
sufferers I encountered in my doctor's waiting room. I met people who had lost
huge swathes of memory, people who had nearly doubled their body weight
practically overnight, people who had developed severe tics. Lyme can be a
hell of a disease.

~~~
Herodotus38
I'm curious why you were given metronidazole: was it for Lyme disease or did
you develop a C difficile infection from other antibiotics? I'm just curious
because I'm a physician and have never heard of using metronidazole for Lyme
disease.

~~~
pauleastlund
It was for Lyme, and IIRC the justification for including it in my course of
treatment was roughly what lisa_henderson describes below.

~~~
Herodotus38
Thanks, I actually searched initially for metronidazole and lyme disease
through pubmed (which is the Google of medical literature) and passed over one
interesting article that could support its use (fortunately not behind a
paywall):

[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/)

However, this study was done on petri dish cultures of borellia and didn't
actually look at whether or not it improved symptoms in people (which I
imagine is a difficult thing to study in this field).

When I searched for borrellia and metronidazole there was one more article for
in vitro use from the 1990s:
[http://www.ncbi.nlm.nih.gov/pubmed/10379684](http://www.ncbi.nlm.nih.gov/pubmed/10379684)

------
Aqueous
I've been struggling with neurological Lyme for years. The disease stopped my
life in its tracks for most of my 20s and because of that I missed out on
those years. During a time in which I would have been out in the world
building a professional (and personal) life for myself I was living at home in
my parents' house spending most of my time in bed. There are periods lasting
months of which I have no recollection. The illness also altered my perception
of reality to the point where I had a kind of neurological blind-sight - I
lost the sensation of seeing. I was able to finally emerge from this delirium-
like state and become functional again, but it is still extremely difficult to
focus and think. While I am working, I still struggle a lot at work to be
productive.

This is a very serious illness, not least of all because it is difficult to
detect along with its symptoms. It seems the scientific establishment has a
lot more rigorous work to do before they fully understand the extent of the
severity.

Edit: I'll add that, unfortunately, it might take more cases like this - where
medical professionals tell their stories about their personal struggle with
the illness - before the full medical establishment accepts that they don't
yet understand this disease. As of right now, the standard of care is to
continue to insist that 15 - 30 days of antibiotics will cure it and that
there is no such thing as persistent infection, which is fucking laughable.
The worst is that supposedly respectable physicians are continuing to promote
this myth, despite not having proved in the slightest that the infection is
eliminated after 15 - 30 days of antibiotics.

~~~
mistermann
I can't remember the name, but there's a good documentary I downloaded from
the internet on Lyme disease that goes into some rather conspiratorial
theories on why Lyme disease isn't treated. Doctors have lost their license
for not adhering to the 30 day antibiotic treatment approach.

~~~
Aqueous
I didn't watch it precisely because I heard it started to indulge in
conspiracy theories, which I think does more harm than good and marginalizes
Lyme patients even more.

Plus, there's a simpler explanation for why the medical establishment
continues to deny the obvious. It's a combination of simple human arrogance
combined with the elusive nature of the bug creating a perfect storm of
ignorance. In other words, I believe in the scientific method but I do not
think the current scientific community practices it - at least not with the
impartiality that it is supposed to be practiced. People are attached to their
work - but what if their work turns out to be wrong?

------
heyjon
The Lyme Disease diagnosis is used to encompass more than Lyme Disease
sometimes. Some people use it to refer to being infected with the bacteria
Borrelia Burgdorferi. Others use the Lyme Disease label to refer to the
bacteria and the other co-infections that you can get when being bitten by a
tick. Such as Babesia, Bartonella, and Erlichia. I prefer to call them Tick
Borne Diseases (TBD).

I got bit July 2010 at the age of 27 either in Northern Nevada or Folsom, CA
(I drove from Nevada to Folsom, but noticed the bite in Folsom) and saw a
doctor immediately since my ankle swelled up so much I couldn't walk on it. I
was given 7 days of bactrim and went home. Symptoms came on slowly. Loss of
sleep, loss of energy, loss of libido, head pressure, heart palpitations,
parts of my body feeling numb and shaking, and severe brain fog. I thought I
was going to be bed ridden. Over 2 1/2 years after I got bit and 8 doctors
later, I tested positive for Lyme Disease (Borrelia Burgdorferi) and Babesia.
Borrelia Burgdorferi is a spirochete similar to Syphilis and Babesia is a
protozoa similar to Malaria. The Babesia strain that I tested positive for is
the WA-1 strain (Babesia Duncani) and is more difficult to treat vs Babesia
Microti.

I was diagnosed over 2 years ago. I am still treating Babesia now. My life is
so much better, but I still have many of the symptoms. I make quinine from
ground up Cinchona bark and make a tea since my doctor won't prescribe quinine
to me because he thinks the quinine side effects are too severe. If I stop
taking quinine, my brain fog returns, I lose sleep, and my hands start to
shake like crazy. I also take Alinia and Azithromycin. The cinchona bark has
really helped me get through the day at work. I am seeing a new doctor next
Monday, but my journey still continues. This is the craziest thing that ever
happened to me and I never heard of it before I was diagnosed.

My suggestion is if you ever get bit, is to request 4 weeks of Doxycycline.
Otherwise, if the tick carries these diseases, it could cost you at least 5
figures out of pocket and change your life dramatically. Many people who get
sick lose their jobs, their spouses, and friends. Many doctors in Northern
California don't believe that the disease exists in California. Sonoma County
has tested the ticks in their area since the 80s and have found ticks carrying
the Borrelia Burgdorferi bacteria all over. Unfortunately, not all doctors are
informed of that.

------
jeffehobbs
If you are suffering from neurological repercussions of Lyme Disease, please
see a neurologist (not just a GP). I did, got on a steady regimen of
Amitriptyline and Naproxen, and nearly all of my post-Lyme symptoms
(migraines, light sensitivities, lethargy) have cleared out.

It's a horrible disease; I wish our government was taking it seriously in the
slightest.

~~~
navait
I have no idea if you are American, but the US government does take it quite
seriously. Lyme is a major research project within NIAID. Multiple branches of
the federal(Park Service, Army, CDC) have prevention programs, in all adding
up to $90 millon/ year in expidentures dedicated to lyme. This does not
include state health programs, which also help diagnose lyme disease. To be
fair, we could be doing more.

[http://www.niaid.nih.gov/topics/lymeDisease/research/Pages/r...](http://www.niaid.nih.gov/topics/lymeDisease/research/Pages/research.aspx)

------
bredfield
I've been struggling with Lyme disease and co-infections (Babesia, Erlichia)
for the greater part of 8 years. I got acutely sick my freshman year of
college, and was forced to drop out. I spent the next 3 years in bed with
severe cognitive impairment; I was unable to concentrate enough to read, and
was sleeping 14-16 hours a day. I have very few recollections of that time
period.

I finally found a doctor able to diagnose the Lyme, whom I attribute my
current health to. It took 1.5 - 2 years of oral antibiotics and Babesia
treatment to be regain my cognitive function and start my life again. It took
2 more years to feel like I had regained the better part of my health. Finally
I was considered in "remission", and waned off the treatment.

Recently, after a long period of reemerging symptoms and recurring illnesses,
I needed to start treatment pulses again. My doctor did a DNA test that
yielded interesting results, with specific interest in my Methylation & detox
profile. I have multiple mutations in genes relating to the methylation
process (MTRR, MTHFR, MAO, and VDR), which have negatively effected my immune
response, antioxidant creation, and cell repair. I'm currently in the process
of supplementing those specific deficiencies, which will hopefully increase
the effectiveness of the treatment protocol and my ability to fully heal.

Even though I'm still in treatment, I've come a long way from when I was
acutely sick. I'm trying to find ways to help others get through that
process...don't hesitate to reach out if I can be of any help.

------
brightball
A guy that I used to work with was dealing with a horror story scenario around
Lyme disease. His wife had it and after going to multiple doctors found one
who discovered that it was somehow affecting the pituitary gland. Prior to
this his wife was basically in bed, living on pain killers in a constant state
of fog and misery.

Once this doctor recommended treatment with human growth hormone, her symptoms
dramatically improved, she was able to get off of the pain killers and even
was able to drive again. She had her life back.

But then all of the controversy around HGH happened in terms of people abusing
it as a steroid and her doctor LOST HER LICENSE for prescribing it to her.
Symptoms reversed and she went back to misery and pain killers. They went to
doctor after doctor and told them exactly what happened and how much she had
improved on the HGH. Showed VIDEO. None of the other doctors would a) believe
it or b) prescribe it because of the risk to their own careers.

I cannot imagine what type of hell that must be to KNOW exactly what you need
to get relief, to KNOW that it's readily available, but not be able to get it
because some agency that you've never had contact with doesn't think you
should have it.

~~~
petemc_
HGH seems to be readily available on the black market. Obviously not ideal but
given the circumstances..

------
mattybrennan
Despite three randomized trials, "there is no evidence that these persistent
subjective complaints represent ongoing active infection or that repeated or
prolonged courses of antibiotics ... provide any benefit."

[paywall] [http://www.uptodate.com/contents/clinical-manifestations-
of-...](http://www.uptodate.com/contents/clinical-manifestations-of-lyme-
disease-in-
adults?source=machineLearning&search=lyme+disease&selectedTitle=1~150&sectionRank=1&anchor=H21#H21)

[http://www.ncbi.nlm.nih.gov/pubmed?term=11450676](http://www.ncbi.nlm.nih.gov/pubmed?term=11450676)
N Engl J Med. 2001 Jul 12;345(2):85-92. Two controlled trials of antibiotic
treatment in patients with persistent symptoms and a history of Lyme disease.
Klempner MS1, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D,
Levy L, Wall D, McCall J, Kosinski M, Weinstein A.

[http://www.ncbi.nlm.nih.gov/pubmed?term=12821734](http://www.ncbi.nlm.nih.gov/pubmed?term=12821734)
Study and treatment of post Lyme disease (STOP-LD): a randomized double masked
clinical trial. Krupp LB, Hyman LG, Grimson R, Coyle PK, Melville P, Ahnn S,
Dattwyler R, Chandler B Neurology. 2003;60(12):1923.

[http://www.ncbi.nlm.nih.gov/pubmed?term=17928580](http://www.ncbi.nlm.nih.gov/pubmed?term=17928580)
Neurology. 2008 Mar 25;70(13):992-1003. Epub 2007 Oct 10. A randomized,
placebo-controlled trial of repeated IV antibiotic therapy for Lyme
encephalopathy. Fallon BA1, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer
E, Slavov I, Cheng J, Dobkin J, Nelson DR, Sackeim HA.

~~~
scott_s
I believe those are different from the submitted article. The submitted
article interviews a man who was never diagnosed _or treated_ for Lyme disease
until 20 years after he contracted it. After he was treated, his symptoms went
away. (Except for his heart issues, which were permanent because over the
course of the disease, his heart had developed significant scar tissue.)

Those studies are about people who have been diagnosed, treated, and then
continue to experience symptoms. The background from the first paper:

 _It is controversial whether prolonged antibiotic treatment is effective for
patients in whom symptoms persist after the recommended antibiotic treatment
for acute Lyme disease._

Lyme disease is real and uncontroversial. What is controversial is that if
there is such a thing as a chronic Lyme disease that persists after the
initial antibiotic treatment. The current scientific evidence is against such
a thing.

------
alexbecker
> New Hampshire currently has the highest incidence of the disease per 100,000
> people, with 1,700 cases last year.

Very confusing phrasing, making it sound like it had 1,700 cases per 100,000.
It had 1,700 cases total last year, and also the highest per capita rate.

------
govspy
What's with all of the pacemaker shocks?

Is that a bug or a safety mechanism?

~~~
adaml_623
The pacemaker detects that the authors heart has stopped or is in such extreme
arrhythmia that he will probably lose consciousness and die.

Working in the same way as a normal defibrillator that you might see in an
Emergency Department the pacemaker supplies a large shock to the heart to
restart it or get it to beat properly.

The shock is large enough so that a person will fall to the ground when they
experience it. And the article mentions that if you are in a pool near
somebody with one of these pacemakers then you might feel the shock as well.

~~~
Herodotus38
To be a little more clear pacemaker != defibrillator, although often they are
combined into one device. A defibrillator gives a large shock to the heart to
knock it out of a dangerous rhythm such as ventricular tachycardia or
ventricular fibrillation. A pacemaker is designed to send a smaller shock in
such a way as to stimulate the atria and/or ventricles to depolarize and
contract (recreating the normal rhythm).

Pacemakers are designed to either constantly go off or to detect missed beats
and give shocks. They do not knock people down and I've never seen anybody
ever complain of a pacemaker shock being even detectable. A defibrillator can
be part of a pacemaker (in which case it's called an ICD), and it WILL hurt if
it goes off. I think that is what you mean.

------
Floegipoky
I was 14 when I started experiencing Lyme symptoms. I had a fever that climbed
to 104 over the course of 2 weeks, and increasingly worse joint
pain/inflamation in my neck. It got so bad I couldn't even move it the small
amount required to see the sides of my computer monitor. Luckily my
pediatrician knew her shit; I hadn't even left the waiting room before she had
diagnosed me with Lyme disease, and I started on antibiotics before I even had
blood drawn to send to the lab. That's how little confidence medical providers
who know the disease have in the test.

I still suffer from lingering neck pain, but I consider myself incredibly
lucky.

 _EDIT_ : For the record, I never had the rash. Many people either don't get
it or don't notice it

~~~
nate_meurer
How old are you now?

------
danieldk
Although I am one of the lucky many who does not have lyme disease: check what
diseases ticks carry in your home region (you can also get tick bites in a
garden) or if you go on holiday, especially when you go hiking or have kids
(that sometimes run into high grass or bushes).

E.g. in the area that we live now (Southern Germany), a relatively high
percentage of ticks is infected with TBEV/FSME virus, which is not treatable.
Because it's a high-risk area, insurance companies pay for vaccinations which
are good for five years and have been shown to be very effective in trials.

Of course, if you e.g. hike, it's a good idea to check your body for ticks
afterwards. Most diseases are not transmitted if the tick is removed properly
within 24 hours.

------
mantas
I've had Lyme disease twice. And been bitten by ticks many more times.

Lyme is easy to treat if it's found on time. 5 days of antibiotics and all is
good. Both times I got it there were the infamous Lyme circles. It's possible
to have Lyme without the circles though, so it's a good idea to test for Lyme
once the ticks' season is over. Just in case.

Ticks Encephalitis is an entirely different beast though. Get vaccinated for
it if you hike/cycle/camp/whatever and your area have even slightest chance of
it. It ain't pretty to watch people fight it when there's 30% chance of more
or less full recovery.

------
gambiting
Isn't there a vaccine for Lyme disease, but it's only approved for use in
animals because some people got scared when it initially got introduced and
got it banned without any scientific reason to do so?

~~~
pharke
Yes. It was called LYMErix and is still available for use as a veterinary
medicine. There is also a new vaccine being proposed by Valneva (a European
biotech company) that will hopefully not meet with the save irrational fate.

[http://www.ctvnews.ca/health/health-headlines/whatever-
happe...](http://www.ctvnews.ca/health/health-headlines/whatever-happened-to-
the-lyme-disease-vaccine-1.886946)

------
rollthehard6
Another condition where Naltrexone might be of help for chronic patients :
[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3351864/](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3351864/)

------
jonnny333
Same experience here. Absolute HELL. Long term antibiotics work. The IDSA is
DEAD WRONG.

------
alpha1234
I want to add another angle to this, how our govt, AMA, FDA do not want us to
learn about highly effective, non-toxic and cheap cures [1][2].

So that they could keep their trillion dollar cash cow intact.

First book is entirely dedicated to health while the second one devotes a
portion to the health. I hope HN readers who have this disease will be able to
make use of these resources.

[1][http://www.amazon.com/Politics-Healing-Suppression-
Manipulat...](http://www.amazon.com/Politics-Healing-Suppression-Manipulation-
American/dp/0982513879)

[2][http://www.amazon.com/Suppressed-Inventions-Other-
Discoverie...](http://www.amazon.com/Suppressed-Inventions-Other-Discoveries-
Jonathan/dp/0895298090/)

~~~
filoeleven
I think people here might be interested in hearing about an effective, non-
pharma cure for Lyme disease--if only in some cases to try to debunk it--but
without that concrete information I doubt you'll get any takers.

------
eveningcoffee
When you talk about Lyme Disease, you could not go around of the main culprit
- ticks.

~~~
blisterpeanuts
Monhegan Island in Maine had a one-time hunt in the mid-1990s to eliminate the
deer population (deer had been introduced in 1955 and Lyme disease had become
prevalent, with 13% of the island's residents infected). Five years later new
cases of Lyme had been greatly reduced). Similar results have been reported
elsewhere
([http://www.deeralliance.com/node/10](http://www.deeralliance.com/node/10)).

With 32 million deer in the U.S. and virtually no predators, the obvious
approach to controlling the spread of tick borne diseases is to reduce the
number of deer.

They're beautiful animals, but like with any other species, including humans,
there's such a thing as too many.

~~~
cmrdporcupine
Agreed.

I live rural and to me deer are a pest. I do not want them traipsing through
my property and not really because of the damage they do to my plants but
because of the tick issue.

As we have removed the deer's natural predators it is our job now to manage
their population in absence of those predators. Lyme disease is one example of
how we have failed to do that adequately.

Another thing we have done to make Lyme disease prevalent is make the fox a
rare species. Part of the tick's complicated lifecycle involves mice, and mice
and vole populations explode in the absence of foxes. Having a healthy fox
population helps to keep the population of mice down, which can interrupt the
lifecycle of the tick.

We need an active deer hunt, reintroduction of wolves in places, and a program
to encourage foxes. Coyotes won't do much to suppress the population of mice.

~~~
blisterpeanuts
Yes, we need more foxes! Actually I saw one the other night around here
(suburban town near Boston); that makes me happy.

Snakes eat mice, too. People in the Northeast have eradicated many native
snakes such as the Northeast timber rattler. We should reintroduce them, and
this will cut into the tick's life cycle.

------
codezero
My cousin had this and forgot who her kids were for several years. It was
brutal.

------
colanderman
"I went to the internet like anyone else and I started Googling."

Nothing inspires confidence in America's medical system like one of its own
members admitting "yeah, none of the other doctors knew WTF they were talking
about so I asked teh internetz."

~~~
Erwin
It's almost as bad as the software engineers running the system that control
our private information gathering in shady anonymous "hacker" forums to
exchange programming tips.

~~~
eveningcoffee
No, it is better because it allows rapid information exchange. Perhaps this
kind of system would help doctors too.

~~~
colanderman
Exactly. I'd feel much better if he said "I asked on an online forum for
medical professionals". Maybe this is what he did, but it doesn't sound like
it from the context.

Does there in fact exist the medical equivalent of StackOverflow, both in
terms of functionality _and_ ubiquity?

