What It's Like to Have Severe Lyme Disease

http://nymag.com/scienceofus/2015/06/what-its-like-to-have-severe-lyme-disease.html

by Hooke • 11 years ago

97 46 11 years ago

jeffehobbs• 11 years ago

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• 11 years ago

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...

codezero• 11 years ago

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

Aqueous2• 11 years ago

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• 11 years ago

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.

heyjon2• 11 years ago

The documentary is called Under Our Skin.

Aqueous2• 11 years ago

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?

pauleastlund2• 11 years ago

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.

Herodotus383• 11 years ago

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.

pauleastlund2• 11 years ago

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

lisa_henderson• 11 years ago

I also had Lyme and I was also given metronidazole, in combination with other antibiotics. The theory for giving it was that Lyme, during its life cycle, has several forms, including a form that is a bit spore like (that is an informal and non-technical description of what I've read) and normal antibiotics are not effective against the spore form. The theory was that if you had Lyme that recurred often, as I did, it was because some of the Lyme was in a form that could not be reached by stuff such as Biaxin. Therefore, taking a combination of drugs, including metronidazole, was suppose to be more effective than taking any one antibiotic alone. For me, metronidazole did not work, or at least, it did not achieve the goal. It was wonderful for weight loss, but it did not help me beat Lyme. For me, I got over Lyme during an odd episode where I combined Biaxin and fasting (going a week without food, a week when I only had water and high doses of oral Biaxin).

colanderman2• 11 years ago

"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• 11 years ago

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.

eveningcoffee2• 11 years ago

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

girvo• 11 years ago

I wonder what that says about programmers, then?

govspy• 11 years ago

What's with all of the pacemaker shocks?

Is that a bug or a safety mechanism?

snissn• 11 years ago

Just a little deduction for a moment.. if it was a bug in his pacemaker, don't you think he'd call it out in the article?

adaml_623• 11 years ago

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.

Herodotus383• 11 years ago

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.

heyjon2• 11 years ago

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.

alexbecker• 11 years ago

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.

microtonal• 11 years ago

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.

gambiting• 11 years ago

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?

blisterpeanuts3• 11 years ago

Lymerix. A lawsuit was filed and the manufacturer pulled it off the market.

pharke• 11 years ago

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...

alpha1234• 11 years ago

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...

[2]http://www.amazon.com/Suppressed-Inventions-Other-Discoverie...

filoeleven• 11 years ago

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.

eveningcoffee2• 11 years ago

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

trimble-alum• 11 years ago

For example, the hills around Almaden Valley and Santa Cruz mountain foothills are full of deer which are known positive carriers of Lyme Disease. In the 1990's, there were or are signs on the trails indicating this. I believe the same caution applies to hills extending towards San Francisco, which includes walking The Dish at Stanford.

Needless to say: wear long socks and have someone else completely check all of your limbs and back under bright light and magnification for those very tiny deer ticks.

pvaldes• 11 years ago

Agree. Is a disease of the environment. Deer kill much more people than predators (ticks, car accidents) but people are not afraid of herbivores. In not urban areas, a few well managed packs of wolves could be our best option. It seems that there is not much Lyme disease cases in the places having wolves.

So it seems that we need to make a choice about what would be worst, to lost some unattended cattle sometimes and be afraid of wolves or living with the fear of Lyme, crop damage and coyotes. If we can live with coyotes in the backyard maybe we could get an acceptable point of tolerance with wolves that avoid humans much more than coyotes do.

blisterpeanuts3• 11 years ago

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).

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• 11 years ago

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.

trdrake• 11 years ago

Along with the deer population, controlling the rampant spread of Japanese Barberry - an invasive species becoming very common here in the Northeast - can help control the tick population:

http://today.uconn.edu/2012/02/controlling-japanese-barberry...

rollthehard6• 11 years ago

Another condition where Naltrexone might be of help for chronic patients : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3351864/

mantas• 11 years ago

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.

brightball• 11 years ago

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_• 11 years ago

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

mattybrennan• 11 years ago

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.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 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 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• 11 years ago

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.

Floegipoky• 11 years ago

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• 11 years ago

How old are you now?

bredfield• 11 years ago

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.

jonnny333• 11 years ago

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

What It's Like to Have Severe Lyme Disease

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