My father nearly died of [what we believe to be] Lyme disease. A few years ago he started getting awful bouts of pain all over his body. He couldn't eat, was losing weight, was losing muscle mass fast. It got the the point where he was using a walker (he was less than 60 years old at the time) and could barely lift a 5 pound weight. He went to a bunch of different doctors, had all kinds of scans run, and only kept getting worse. At one point my mother noticed that every test any doctor gave for Lyme disease came back "inconclusive". She pointed out to one of the doctors, who said that it didn't mean anything as apparently the test is not very reliable. Finally, they found a doctor who prescribed medication to treat Lyme disease without a definitive test because apparently there was a low risk of side effects. Within a couple of weeks of starting the medication, my father was visibly better, within a few months he was basically back to normal, and is basically fully recovered now. (Sorry folks, I don't know any of the specific drugs or medical terminology.)
We have no idea how or when he got infected. As far as he knows, he never had a bullseye rash, although apparently that doesn't always happen. Now I slather myself in DEET whenever I go into a an even semi-woodsy environment.
I would greatly appreciate it if you could find the name of that medication. My sister has Lyme Disease and is still suffering health effects from it despite various treatments.
Most non-Lyme Literate Medical doctors prescribe Doxycyclin. If you are seeing a Lyme Literate Medical doctor they'll put you on a cocktail (often Clarithromycin, Doxy, Alinia (anti-parasitic), and a few others. This also depends if you have co-infections or not.
"Lyme literate" seems to be a pseudoscience term related to the ME-like crypto-syndrome "chronic Lyme disease" - for example, see towards the end here:
A family member is on Doxycyclin for another issue unrelated to Lyme. It has caused them a fair amount of nerve degeneration issues in the toes and fingers. This is perhaps the risk that the some doctors are trying to avoid.
The treatment for Lyme is via antibiotics but I think it’s only effective if it’s relatively early on in the course of the disease (on the order of weeks or months). Caught early it’s curable. One of the issues though is symptoms are not caught early on as they’re so general and by the time treatment starts the disease has spread and already caused the major damage.
Lyme Disease is caused by a bacterial infection that can cause nerve damage. Even if you treat it with antibiotics and remove the infection, the nerve damage might remain and be very hard or even impossible to rehab.
I have nerve damage from arthritis in my spine. Mine is definitely not correctable with current medical technology (degenerative discs, bone spurs and pinched nerves & spinal cord from the above). Most days, I'm resting at a 4-5 on a 1-10 pain scale. It can easily reach a 7-8 on bad days. When I go for allergy shots, I dont even notice the injections, typically.
Thing is, most pain meds dont even work. NSAIDs don't make a dent. Opiods dont work either (not that I could get a doc to prescribe them if they did). Muscle relaxers do help quite a bit in reducing the pinching of nerves. I recently did a 7 day trial on Celebrex, and after 3 days, I was in the least pain I'd been in for years (apparently it's one of those that builds over a few days). I see my PCP tomorrow and will hopefully get an ongoing prescription.
Ive been on Lyrica and gabopentin for the nerve pain in the past. While they helped with the nerve pain, I had a lot of side effects with both, and don't want to go back on either.
Have you tried much acupuncture? I've found it extremely effective for nerve issues, although nothing approaching what you are dealing with. But in general western medicine seems bad at resolving these kinds of things, it might be worth investigating. If you are in SF competent practitioners abound.
Western medicine is not "western", is THE medicine based in proved facts. Scientifically proven.
Anything that experimentally works, being chinese or icelandese, is included in medicine so there are a fair possibily that anything working in chinese medicine is yet included in medicine. The rest is just in the category of "dubious traditions, superstitions, fairy tales and non trustable until proven".
The basis if acupuncture is to selectively "stimulate" nerve fibers so the pain dissapears, but the nerve funcion is temporarily damaged. Is not different than blue scorpion poison against cancer, or being struck by an electric current. Killed nerves can't feel or transmit pain sensations but pain is an important defense system for animals. Anesthetics do not cure nerve issues, just hide the problem, as acupuncture does.
Sticking needles in a finger maybe could be acceptable. Touching the spine with several hot metal objects has a much higher risk and probably unaceptable in the balance of benefits and cons IMHO.
Personally, I'm skeptical of it. My wife, while also being skeptical, has recently tried it and she reports she's aeeing benefits, so I might try it, but I have not so far.
It's completely unsolicited advice. The comment it is replying to is adding first-hand testimony to the discussion, not asking for suggestions for how to manage their own condition.
Mere mention of one's own medical situation should not generally be deemed to be open season on the entire internet tossing out medical suggestions, no matter how seemingly insightful. Most people with serious, long-standing conditions know a lot more about it than the average person on the street, have tried myriad approaches to treatment and get incredibly sick of having everyone "helpfully" toss suggestions at them at the mere mention of their diagnosis.
It's exhausting to have to say over and over "I've tried that or have a good reason why I am not doing that. I'm aware of those options. My short comment here is not remotely a comprehensive medical history."
Everyone puts it on the chronically ill person to be polite and respectful and make them feel good about wanting to help. But it's an incredibly negative experience to be constantly bombarded with such "help" and the implicit expectation that you should be politely appreciative of their good intentions.
I'm one of the people that downvoted it and that's why I did so. I'm chronically ill and also post as openly female here. I'm abundantly familiar with the desire to simply say "Oh, hey! I know something about that!" only to get a slew of advice I didn't ask for. The subjective experience of that is that the entire world clearly thinks you are an idiot who isn't trying hard enough and that's the only reason you can't fix your chronic, intractable problems for which the world has no real solutions or you would have already long ago sold your soul to the devil to finance the slam dunk answer.
This is part of why some parts of Twitter are awash with bitter complaints about Ablism and how terrible Abled people are.
For what it's worth, i really admire your advocacy and will take this comment to heart. Even if my intent was benign it is much easier for me to toss off such a comment than for a long-term sufferer to receive it.
FWIW, it's not really intended to be some edict with zero exceptions. How it's done matters.
I don't have any pithy advice for how to do it well. I'm still trying to sort that out myself.
I like being helpful and I hate seeing people suffer and I'm chronically ill myself, so I tend to feel like that ought to count for something in terms of being viewed as a good faith effort (other people don't always agree). Nonetheless, I recently got cussed at and blocked by someone on Twitter who was having an especially rough time. (Granted, the topic in that case was suicide, but I didn't know that when I first said something.)
When you're in a lot of pain all the time, it's really easy for things to just rub you the wrong way and get on your very last nerve when you just want to participate in the conversation like a normal person and be treated like a contributor.
I've started asking people if they want suggestions from a random internet stranger and respecting it if they say "no thanks." Or offering suggestions in a low key fashion if they are actively soliciting feedback. (This list is not comprehensive.)
Can't find it - it was a long time ago. I was getting strong headaches while traveling, it was a caffeine withdrawal, but I didn't know it until someone here mentioned the possibility. I started drinking caffeinated beverages while traveling, and the problem was gone.
Please note that you getting strong headaches while traveling due to caffeine withdrawal really doesn't fall under what I was describing.
I'm talking about people with much more serious, chronic conditions where the entire world would like to act like "Your genetic disorder would totes go away if you would just eat this thing here/take this supplement/read this article!"
And I struggle with this myself because I actually have a genetic disorder and it actually has responded well to dietary and lifestyle changes, so I am prone to wanting very much to spread the good news and it tends to not go over well with other people. So I've had to learn to curb my own enthusiasm.
I'm not suggesting no one should ever offer unsolicited feedback on Hacker News. I'm just suggesting people be a little sensitive when talking to folks with overwhelming and incurable problems who have probably heard your suggestion umpteen other times and will probably just find it to be an imposition, not a brilliant insight.
Most of the time, they aren't commenting about their condition because they are hoping some random stranger will know the miracle cure that they hadn't heard of and be able to somehow back it up credibly. Most of the time, they are just trying to distract themselves from unremitting agony by engaging in a little discussion and their medical situation is something they happen to know something about, so they offer their two cents worth in hopes of feeling like a normal human being for thirty seconds.
Intruding on that with "Have you tried X! You should totes try X!" tends to be a super negative experience in most cases for such people. It robs them of their moment of normality that they were reaching for as someone who can simply talk to other people, just like anyone else.
I'm certainly engaged with my medical professionals. I see about 7 docs routinely! Saw my primary care physician just this morning. I'm more engaged now that I'm married (nearly 2 years now), before I mostly grin and bared it.
I also have a genetic condition that affects my liver, but thankfully so far, it's just a monitor it quarterly or so.
For, me, at only 38, my cervical and thoracic arthritis has been my greatest challenge. My genetic condition doesnt cause me problems day to day, and can be easily managed with diet, and if need be, scheduled phlebotomy.
The arthritis, I cannot control. Most meds dont work, and the ones that do put pressure on my liver. Opiates wouldn't even really help me, I think, because I dont think they help with nerve pain which is about 95% of my problem. I have a sufficient pain tolerance I can ignore a constant burning sensation along my spine. I cannot ignore the very sharp shooting nerve pain I get that travels down an entire side of my body.
I can cope with that to an extent when it's constant. Where it really gets bad is when I get random sharp stabbing pains in my arms and legs. Bad enough I've bruised my knees hitting them against my desk from reflex.
Like I said, I'm working with my various docs to manage things, but its tough.
Medically, I see:
Primary care
Gastroenterologist (also his nurse practitioner)
Hematologist
Neurologist
Orthopedist
Point is: I'm trying to make things better, but what a lot of what afflicts me cannot be made better, and has to be managed, and I'm trying. Not always succeeding, but trying.
I was fortunate to be diagnosed late in life with a relatively mild form of a serious genetic disorder. This meant I had my own mental models already for what was going on in my body before I got a label.
It allowed me to bring fresh eyes to the problem space and I've healed a lot when doctors say that cannot happen. The only real downside: The world is quick to act like I'm making that up and call me crazy.
I've had good results healing nerve damage where I had issues like numb spots in my feet, so I'm convinced a lot more is possible than is currently believed to be possible.
Then you really need to consider that it's probably not as simple as "she has x disease and needs the right antibiotic."
My best understanding: parasitic infections tend to thrive due to feeding on detritus from other infections and persistent infection in spite of multiple treatments probably means she's being reinfected on a regular basis.
My chronic infections did not begin to improve until I informed my then spouse "You are never touching me again without a condom because I think you are reinfecting me." following a conversation with a friend who was a physician. He had minored in parasitology and I believed I had an undiagnosed parasitic infection. He said it was plausible, given what I was going through.
That was a major turning point in my health. After nearly a year of being at death's door, the very next round of antibiotics stabilized me and I began gradually getting better.
Prior to that, I went through two periods a few months apart of needing new antibiotics every single time I ran out for 10 or 12 weeks. Nothing was really working.
The months in between? I was bedridden, sleeping 18 to 20 hours a day and probably having a lot less sex than usual. (But I honestly just don't remember how often I was having sex during that awful, awful time. I mostly remember hallucinating conversations with The Grim Reaper.)
(Disclaimer: This is not medical advice. I am not a doctor. I don't play one on TV.)
Of course, I can't prove it and I find the question flabbergasting given that I already stated that insisting on condoms was fairly promptly followed by my condition stabilizing and improving.
For the record: I eventually divorced him. I've been celibate for medical reasons for over 14 years, in part because men I dated could not follow the simple instruction to bring a damn condom for health reasons and I was too sick and vulnerable to get up and walk out like I should have. After the third well-educated idiot pulled this on me, I vowed to myself I would be celibate until I was well, basically.
I've gotten off all drugs. I'm gradually putting in more hours on freelance work. I'm mostly healthy when doctors said that was not ever going to happen.
But that's enough about my (utter lack of a) sex life.
I'm not trying to be snarky or insensitive, but is it really that hard for a woman to find a casual sex partner who will use a condom when asked? Surely you could browse the profiles on OKC (where you can see much longer profiles and get a much better idea of someone's personality before meeting them) and find someone suitable. A lot of guys might not say right on their profile that they're available for "short term dating" or "hookups" because they think it looks bad, but they'll probably be happy to take you up on the offer if you ask directly.
Again, sorry for the unsolicited advice, and congratulations on becoming healthy again.
A. I did say "in part." (Among other things) I also eventually concluded that celibacy was the best policy for my own health. Semen isn't the only way germs get traded.
B. This is an overwhelmingly male forum. While I'm quite comfortable blathering on about all kinds of personal things that give other people the heebie-jeebies, it's my general policy to not discuss my sex life here in a way that actively encourages such interest in me.
Suffice it to say, I'm really not in any need of dating advice. My remarks were pertinent to a meaningful discussion of health and that's the only thing I'm interested in discussing here.
facepalm. be mindful of your privilege. this isn't a helpful comment from the start. If you find yourself starting lots of conversations this way, I suggest taking a long reassessment on what your goals are when holding dialogue on the internet.
Get this book — Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness
I didn’t have Lyme but I had mold toxicity, and pretty much every doctor and test came back saying, “everything’s fine” when I clearly knew it was not. If his treatment recommendations for Lyme are half as good as his recommendations for mold, this book is worth 1,000x the price.
Treatment should be customized for each individual. It's quite possible she has more than Lyme. Bartonella, Babesia, and Erlichia are quite common. Mold and metals can also play a role in immune suppression, depending on the HLA genetic SNPs. Treatment approaches include detoxing, strengthening the immunne system and killing bacteria/parasite infestations. Herbal treatments, from Buhner or Cowden (ddg or google those two), or Traditional Chinese Medicine can be very helpful and mostly used in conjunction with western pharmaceuticals.
Some tests to get on a regular basis include: C4a, C3a, TGF-B1, MMP-9. Igenex is the best test lab for Lyme.
My mom just got Lyme disease with similar alarming symptoms, and has responded rapidly to antibiotics. I'm glad your father got the diagnosis in time.
One thing I learned in the process is that the bullseye rash is often just a broad, flat red area, and in some people (as you point out) doesn't show at all. Any summertime flulike symptoms in tick country should lead you to suspect Lyme disease (or the group of similar related tick-borne infections).
Unfortunately there’s no way to know that one currently has Lyme disease unless the symptoms are close in time to a tick bite.
Treatment is with antibiotics, usually doctors will use a combination of two types of antibiotics (eg doxycycline and cefdinir) for which there is some research suggesting better results. In rare cases IV antibiotics may be required, especially if evidence of cardiac or neurological involvement. Duration of treatment is for 1 to 4 months. There’s next to no evidence you should go longer than that.
After treatment patients may also need immune modulation treatment due to autoimmune reaction to the infection. High dose ivig in serious cases. Some patients also find benefit using low dose naltrexone for this though it can have a very nasty side effect of causing depression so watch yourself using it.
Almost everything else is a scam. And unfortunately with Lyme, while the patients are clearly very sick, there are an aweful lot of quacks ready to part them with their cash so be weary.
It’s important to know there are other illnesses that people need to rule out too, check for dysautonomia, POTS, ME/CFS, MS, and aaSFPN for example.
Any advice on POTS treatment avenues? There seems to be poor GP knowledge around the condition, apart from giving fluids via a port to reduce symptoms.
I'm not familiar with POTS, but a quick google suggests that adding salt (and fluids) to the diet is a standard treatment.
I have a different condition where a high salt diet is a standard medical recommendation. I benefited from getting really picky about salt quality, though that's not anything doctors ever talked about.
I eschewed table salt in favor of sea salt containing a mix of natural minerals and micronutrients, not just sodium chloride.
I also generally recommend keeping a journal to track diet and symptoms in the face of any chronic condition.
I’m mostly familiar with POTS in patients with other chronic symptoms such as fatigue. I’ve been on high dose IVIG and it’s been helping my POTS a lot.
Take a look at a video on YouTube by a Harvard doctor Anna Louise Oaklander called Small Fibers Big Problem about the association they are making with something they label aaSFPN. Also take a look at some results for adrenergic and muscinaric auto antibodies, which are showing up in patients with POTS and other dysautonomias.
Surprised to see Lyme disease on HN, since bringing affordable DNA testing for B. burgdorferi & other pathogens to the public is the startup I've been working on since 2014.
As mentioned in other comments, serological tests fall short in various ways (accuracy, time). If you keep the tick that bit you, we can test it for the presence Lyme, and several other pathogens. If negative, we can effectively rule out much of the risk. Super quick & accurate, too.
What they thought me for first aid was: remove the tick with a proper tool, wrap it in some scotch tape and put it in something storable (back then a photo roll plastic thingey) and give it to the person affected and send them to a doctor or emergency service. That was over 20 years ago. Apperantly the "save the tick" advice is not as wide spread as I believed it to be as you were the first to mention it (my reading).
Yeah, that's proper procedure--except for the scotch tape. Our lab techs need to tediously remove ticks from adhesive every day because some authority (first-aid manuals?) is telling people to do that. It ends up in pieces after extraction which hinders us from identifying the species, life stage, and duration of engorgement. Hopefully this practice phases out with time.
So how else do you store the tick? I can see why they would recommend scotch tape: deer ticks are tiny, and the tape helps keep you from losing them. Don't say "put it in a film storage canister" because no one has those any more! I haven't seen one of those in decades. I'm not sure what I'd do with one honestly; I have some small Tupperware containers I could use, IF I happen to be at home when I pull the tick off.
Good point about the size. Unengorged nymph ticks are tough to spot. That's why most people don't notice them until after multiple days of feeding. The adults are much easier to catch early, and thus pose less of a threat.
For storage, a Ziplock bag works well (especially for mailing). Just make sure it's sealed air tight. A prescription pill bottle works great too because of the secure lid.
When I was in the woods and found one on me, I took the batteries out of an extra flashlight I was carrying and kept the tick trapped in the handle.
When I got home, I transferred him to a double ziplock labelled with the date and where on the body I found him and tossed him into the freezer for a few months until I figured I was in the clear.
Interesting. I got bit by 2 blacklegged ticks in the past 3 months but I couldn't find any free tick tests, so I never had them tested. Both were within a few hours so I assumed based on CDC advice that I was still in the green zone. It sounds like one of those things that health insurance companies would be out of their minds to not cover.
Separately: Bay Area hikers beware -- change your clothes immediately after getting home, do complete body checks after hiking -- ideally, shower immediately.
We can't get reimbursed by health insurance because we aren't a medical facility, but rather a DNA lab. I'm sure in some regard, it's a downside. However, it does force us to compete intensely on price, value & service. And I'm happy with that because consumers win.
When the cost of prevention is higher than the cost of treatment, you know the system is truly messed up.
IMO health insurance should be paying for everything preventative. It's in their financial interest to stop fretting about what kind of lab you are, encourage early diagnosis and reduce long-term medical costs.
Thank you for this service! It has brought peace of mind to me after a number of tick bites (they are nearly impossible to avoid entirely if you spend a lot of time camping in the upper Midwest)
I've recently gotten into backpacking and learned that the most effective way of dealing with mosquitoes and ticks in nature is Permetherin. https://en.wikipedia.org/wiki/Permethrin.
It is intended for clothing and not the skin. The best way to apply it is to soak your clothes and let it dry. Spray on applicators are also available. Once it is dry, it is very stable and safe. It does breakdown with UV and washes, so it will need more applications. It is also available for sale and the pre-treated clothing does last through more washes.
Note: Permetherin is harmful to cats when it is wet so if you have cats at home, please read up more on it. Once it is dry, it is safe around cats.
If you want to kill ticks around your lawn without going nuclear and covering everything with permethrin (which kills most insects), try tick tubes. These are cardboard tubes filled with cotton that has been treated with permethrin. The mice which most often harbor lyme disease will take the cotton back to line their nests. This will kill just the insects that the mice carry, and hopefully bees etc won't take an interest in the tubes themselves. The tubes are a little pricey on Amazon but you can make your own with cotton balls and a bottle of permethrin.
Agreed 100% on Permethrin.
Additional tips to make camping more fun:
Put it on swatches of cloth, and suspend those around your tent/tarp entrance. Also put it near your head where you sleep to keep all the biting insects away from your face.
Anecdote:
I was camping with a buddy. Rain-storm happened.
The protected area under his tarp with thick with mosquitoes trying to hide from the rain (there must have been thousands), I had none under my tarp. The only difference was a couple of cloth swatches of Permethrin under my tarp.
Treating things like hats, or headbands does wonders too.
Note that Permethrin is extremely toxic to fish and aquatic invertebrates. Do not wash anything treated with permethrin in a stream or lake. A big problem in Africa is people using Permethrin treated mosquito nets as fishing nets. This kills off a lot of fish.
Also from what I've read just applying it to your shoes is hugely effective on its own vs ticks, with socks adding another large percentage, as the majority of ticks will jump onto your feet and climb up your legs.
The rest of your clothes are worth treating too certainly, but even if it's just your feet it will be a major help.
I’m a longtime hiker and backpacker and in addition to treating your shoes, socks, pants, shirt and hat with permethrin, I highly recommend either a light summer weight gaiter treated with permethrin, or at the very least tucking your pants into your socks. Ticks primary (though not only path) is crawling up from your shoes or socks and crawling up your legs inside your pants. Also be sure when you treat your clothing to do so in the shade as UV will break down the wet permethrin so it’s not effective. Also let the saturated clothing dry in the shade. Do not spray near cats or aquatic life. For your exposed skin you can use Picaridin, which is much safer than DEET. DEET by the way will eat up clothing and gear it contacts. You can save $ on permethrin by buying a concentrated bottle and mixing with water in a spray bottle every time you need a new batch. Clothing treated correctly with permethrin at home is supposed to last about 6 washes / weeks.
"Also from what I've read just applying it to your shoes is hugely effective on its own vs ticks, with socks adding another large percentage, as the majority of ticks will jump onto your feet and climb up your legs."
This is very interesting advise. I always thought ticks drop from trees? no? I actually wear a hat sometimes in the forrest because of this. Am I stupid?
I’m surprised at this misconception about ticks falling from trees. Growing up in northern California, it seems to be common knowledge among my friends and family that tall grass is where you’ve got to be careful.
The tick causing the spike in Lyme disease, the deer tick, likes to hang out in grass. Other ticks behave differently; there's a horrifying story near the end of the article about a tick in Mexico hiding in stucco...
Trees and brush sure. And a tick can definitely climb a tree. But dropping down isn't the way they generally attach. They hold onto grass and low branches waiting for animals to brush past them.
They don't really have a mechanism to alert them to the presence of animals walking below them fast enough for this to be practical for them.
ticks natural hosts are mice, deer, moose and other wildlife that lives in scrublands and mixed forests. This means optimally they will be on grass or scrub that is between mouse and moose height which, coincidentally lines up with human height. Ticks will hold on to leaves and grass with their back legs and hold their front legs outstretched. When a potential hosts passes by they will quickly climb aboard. Many ticks will climb aboard from low grass or even leaf litter which is why treating your shoes and socks works. However they can be on hanging branches or taller grass and shrubs which is why treating all your clothes with permethrin is a good idea.
Ticks do not jump run hop or make any fast movements. They are slow crawlers and do not drop out of trees onto you. They do have a very sensitive organ called a Haller's organ[0] which is an olfactory organ that can also sense humidity, C02 and Temperature.
Lyme's disease isn't the only thing you have to worry about getting from Ticks. They can also carry Tularemia fever, Powassan virus, Ehrlichiosis and Rocky Mountain spotted fever.
Ticks are resistant to cold weather but one of their primary hosts, mice, are not. So after a particularly cold winter there may be less ticks the following Summer. However, many people would say the Northeast U.S. had a long cold and snowy winter but the early and long lasting snow cover provided the mice and other subnivean zone animals with lots of cover and protection from the cold so this Summer is actually turning out to be a bad one for ticks (at least in the NE U.S.).
In our household, we do thorough tick checks on everyone after a day spent outside or in the woods. This includes meticulously checking hair and armpits and a self-check around the groin.
You can help your own property by cutting 1.5 inch PVC pipe into 3-5 inch sections and stuffing it with permethrin soaked cotton balls. Mice will use these to build nests and any ticks coming into contact with the mice will die on contact[1]
Do not get Permethrin near any invertebrates or aquatic wildlife that you do not want to kill[2]
Edit: product we use in our household which we buy at the local outdoor store but is also available online[3]
Ticks don’t seem to fall from trees when “questing”. Usually they are knee level or below [1]. But if they are on a tree branch and you bump it then it could climb on you.
Tall grass is where the tick action is at. Also sitting down in grass, especially when your ankles are exposed (when not tucking in pants legs into socks or not wearing gaiters)
Permethrin in retail outdoor stores can be a bit expensive. In the US, stores that sell military surplus often carry the permethrin kits that are issued to soldiers and they are usually much cheaper and contain enough to cover several clothing items.
Picaridin is generally about as effective as DEET as a mosquito and tick repellant, but without the nasty odor and greasy feeling on the skin.
DEET has a tendency to damage synthetic clothing such as spandex and rayon, and at higher concentrations can actually melt plastic and paint. Even lower concentrations can mess up your sunglasses.
Permethrin is an insecticide that's applied to clothing, tents, packs, etc. It's effective for a month or so depending on exposure to UV and number of washes. Picaridin is a repellent that's a applied in lotion or spray form.
Meh. The military pre-treats jackets with Permethrin so in general you can assume that small quantities of well diluted product on the skin are okay. Probably 2%, but do your reading and consult a doctor. That being said, there is much to be said for simply eating healthy in order to prevent certain bug bites.
If you want really safe external repellant, you could probably go back to sulfur powder. It stinks like eggs, but it seems to work okay. Maybe that's why all the bigger campgrounds seem to have sulfur-water.
Some people attract more bug bites than others. My general impression is that hormone levels and blood sugar both impact this outcome. To the degree that blood sugar can be moderated by diet, staying on top of blood sugar issues might be helpful.
I don't know about ticks, but my military spouse had good results from eating a match head once a day to discourage chiggers when he was in the field in Georgia. He later replaced this policy with taking garlic supplements.
I bought his supplements. He specifically asked for the smelly garlic pills, not the ones that advertise low odor.
From what I gather, his co-workers were insanely jealous of his general lack of miserable bug bites in spite of laying in the same grass as them. He was very introverted and closed mouth. Unlike me, he was entirely disinclined to helpfully blather on about such things to people unlikely to believe him.
He was probably wiser than me in some sense. I would likely get a lot less flak if I didn't remark on such things myself, kept it to myself and privately gloated.
Ticks can drop out of trees on your head, or attach to your hair when your head brushes past some leaves on a tree. Also, if your bare skin is not covered in insect repellent, that could also be a route that they get to the rest of your body.
The most effective method of not getting bitten is not to go in to the woods at all.
We use this[0]. Buy it in the biggest container available and use it to treat an entire set of clothing that we use as our hiking clothing. A hat of any sort, well treated with permethrin will also keep mosquitoes and other annoying insects away from you while hiking or enjoying the outdoors (Source is extensive personal experience in a tick dense area in the Northeast U.S.)
I may or may not have had chronic lyme disease. I definitely had many many ticks. (Never cared about em, just pulled them off). And I definitely was sick for over a decade. And I definitely tested positive on the Western Blot multiple times. (And chronic lyme is definitely a bit of a catch-all diagnosis for a host of auto-immune stuff we don't quite understand yet)
It was awful, something I wouldn't wish on anyone.
If you do get a deer tick (they are the small ones, not the giant gross ones) save it, there are a number of places you can send it for peace of mind that it was not infected.
Also consider brief antibiotic prophylaxis: 1-3 doses of doxycycline are often recommended. I'm not in favor of anti-biotic overuse, but if lyme can turn into chronic lyme and that was indeed what I dealt with for 10 years of pain and crushing fatigue, then you want to avoid it.
This isn't to say you haven't been dealing with a lot of garbage, just that you might need to seek different medical care if your doctors are telling you that you have chronic lyme disease.
I appreciate your concern. I certainly had something. It certainly sucked. I certainly shared a lot of symptoms and remission factors with other people who identified as having chronic lyme. I certainly had Lyme at some point in my past.
I agree that "alternative medicine" can be a hotbed of pseudo-science and sketchy treatment, but I also think that in terms of a lot of these chronic auto-immune related conditions, our evidence base is still pretty small and there's a lot we don't know. And the dominant Western medical system tends to do much better with acute conditions with a clear etiology of cause/effect than nebulous clusters of symptoms (see also, all of mental health).
My hunch is that chronic lyme, just like for example chronic fatigue that lasts for years after Epstein-Barr, is some sort of auto-immune condition triggered by the initial infection, even if the initial infection is gone. With Lyme it is a little more complicated because there are spirochetes involved.
I assure you I've probably read everything that the NIH has put out about Lyme all the way to some of the wackiest all caps blinking sketchy sell-me-vitamin treatment websites out there, as well as chronic fatigue (I spent the first 7 of those years considering it CFIDS). It nearly destroyed all of my 20s.
Treat prophylatically or not, but try not to get Lyme, that's all I'm saying.
I got better. I also struggled with severe depressive tendencies, panic attacks, social anxiety, and obsessive-compulsive tendencies. I got better from those as well.
All these things were linked, yet separate. You cannot tell me the chronic fatigue was just my depression, as I can tell a difference, but neither was my depression just from not being able to be active for more than about 2-3 hours each day. Mental health issues pre-dated chronic fatigue, but chronic fatigue intensified them.
I did many treatments, though I chose to never have a PICC line installed for months of IV antibiotics - that seemed like chemotherapy to me then and now, and not without its own risks. Everything from antibiotic regimens to homeopathy to humming with crystals in my hands. Sometimes I was raw vegan, other times I smoked heavily, drank heavily, because nothing worked anyway, why not have fun, etc.
Too long for one comment here, but find me privately if you are struggling with chronic immune stuff.
I'm unsure what eventually worked, and what was time. A lot of it, cliche as it is, was the very strong love of a very supportive partner that saw I could still live, even if I thought I couldn't.
I would say the following things all had major effects, though I don't use any currently - many of them provide symptomatic relief for some things, I'm not sure why things shifted underneath it all.
#1) regular injections of methyl-B12 even with normal cyano-b12 levels
#2) low dose Abilify and modafinil and (sparingly) stimulants
#4) regular yoga practice that provided low-impact exercise, mindfulness amidst the fear that my life was over, and a way back into an awareness of my body that didn't only have me think it was the enemy that was killing me, and of a self that transcended whatever I thought I was
#5) treatment for orthostatic hypotension including low dose steroids, salt pills, compression stockings, etc
#6) psychotherapy
#7) A few times rounds of abx when I was at my worst seemed to help a lot
#8) supplemental testosterone for 2 years when mine was low-normal (is normal-normal now without supplements)
#9) eliminating all processed anything from my diet for about 4 years, all gluten for about 5, all refined sugars for about 5 (can eat anything now without ill-effect) and drinking home made bone broth regularly
(I also know some people will read this and hone in on a few things and be like oh! he just needed some psych drugs, therapy, and exercise! Those can def all be helpful things, but I assure you it was a strange and complicated journey through the mindbody, I still have no sample size other than me, and the methyl-B12 was by far the most helpful even though that largely falls under the pseudo-science perpetuated by people searching for autism cures...)
Well they noted that "chronic lyme" is used as a catch all for a variety of issues. If this person is being told they have chronic lyme, they are already seeing an alternative doctor of some sort and are most likely very aware of what you're saying. Traditional "western" doctors won't really recognize chronic lyme as a thing. There are a lot of people out there who are experiencing chronic fatigue issues and other problems that our medical system doesn't really have answers for. A lot of those people end up seeking alternative solutions if they can afford it because they need SOMETHING.
Just because there are peer-reviewed scholarly articles making an argument does not make that argument correct.
I hope anyone who suspects they or someone they love has chronic lyme will dig deeper than just reading scholarly review articles. A professional scholar tends to write only about things that they anticipate will advance their career.
In particular, I hope anyone who suspects chronic lyme will meditate on some of the comments on HN written by people who claim to have recovered from chronic lyme or what they suspect was chronic lyme. If you search the web for information on chronic lyme you will encounter a lot of material by people who make a living trying to persuade various segments of the public in one direction or another. (Some of the professional persuaders have MD after their name.) On HN comments in contrast I am satisfied that almost all the substantive comments about chronic lyme are currently not written by professional persuaders.
Explosion of deer and rodent populations is definitely not helping. We were walking with our dog at a local natural area we frequent. A deer crossed the path and we all stopped to take photos, and then moved on. That day we found ticks all over our dog. The deer are literally swimming in them.
Both rodents and deer are part of the lifecycle of the tick. Suppressing deer populations and encouraging red foxes and other rodent predators would have to help.
Hunters would be happy to go out and take more deer annually, if allowed. Venison is excellent, and it's a much more humane source of meat than factory farming. Seems like that would be win-win.
Deer have adapted to agricultural and suburban areas. Their predators have not. Wolves, large wild cats, etc. do not do well around human populations, and coyotes are not deer predators, really.
I was bit by a tick and I got sick. No doctor could figure out what was wrong. I tested negative for Lyme. I took antibiotics (Biaxin) and 3 months later I was fine. I stopped taking antibiotics. Within 2 months I was sick again. I took Biaxin for 6 months. I felt great. I stopped antibiotics. Within 2 months I was sick again. I took Biaxin for a year. I felt great. I stopped taking antibiotics. Within 2 months I was sick again.
This time, the symptoms were completely different. I assumed it was a new illness. Doctors were mystified. One said it was psychosomatic. I was off antibiotics for more than 6 months. I got sicker and sicker. I was in bad shape when I decided this illness was the same as the previous illness. I took a combination of Cipro and Zithromax for 1 year. I got better. Then I stopped. I got sick again.
I was eager to get back to my career so I tried a few antibiotics that might be light, cheap, easy and sustainable. A friend of mine, as a teenager, had acne and the doctors had them on antibiotics for 4 years to deal with the acne. They’d taken something similar to doxycycline. I tried it but it did nothing for me. I tried hyperbaric oxygen therapy, which gave me great energy but did not cure me. Then I tried Amoxicillin. That worked great. I took that for 11 years. Then I quit and got sick again. I went back to Biaxin, and took that for another 2 years. My business was going well so I could not focus on my health. I was busy. The simplest thing was to take antibiotics, which kept me healthy so I could focus on work. So long as I took antibiotics the illness kept its distance. In that sense, the illness was similar to leprosy — I could live a normal life but only if I took antibiotics every day.
But I was irritated with my business partner (I’ve written about that elsewhere). So I sold my share of the business.
Now I had time to focus on my health. What had I not yet tried? What about fasting?
I went 2 weeks without food. I took antibiotics the first week but not the second. I felt sick. The fast ended. I had a vegetarian meal. I fell asleep. I woke up the next day and had a large vegetarian meal. That night I felt funny. The feeling was similar to that moment, if you have a flu, when the fever breaks. With a flu, you get sicker and sicker till a moment the fever breaks and then you know that your immune system has kicked in. That was exactly the feeling that I had then.
I have not taken any antibiotics since that fast, and I’ve been blessed with excellent health.
Now I'm no medical expert but antibiotics resolve an infection after a certain amount of time. Even for Lyme and leprosy. There may be health after-effects but those would not be resolved by antibiotics since the infection is gone. What could possibly outlast 20 years of continuous antibiotics that isn't either completely killed or mutates and renders the antibiotics ineffective? And then be resolved with a fast?
Teenagers with acne often take antibiotics for many years. I had one friend with severe acne who took antibiotics well into adulthood.
Those teenagers, who take antibiotics, with a microscope at home can do this simple experiment: prick your finger with a needle and put a drop of blood on steriled glass, then put that under a microscope. Do you see bacteria? Yes, of course you do. Even if you take antibiotics for 20 years, your body will still be seething with bacteria. There is no way to get rid of the bacteria on your body. That isn’t what antibiotics do. Antibiotics work with your immune system to bring bacterial load back to a reasonable level. If antibiotics killed all bacteria then people with compromised immune systems could be kept safe from bacteria with antibiotics. But there isn’t a doctor in the world who thinks that’s possible.
Please, if you can find a microscope, go look. Use your eyes. Your blood system is absolutely not sterile, that is a wildly non-scientific thing to say. Your immune system can not possibly go after ever protein it meets, otherwise you would be allergic to all food, and you would die. When you see an article such as "The dormant blood microbiome in chronic, inflammatory diseases" ask yourself, what is a dormant blood microbiome?
There are certain kinds of bacteria that you need to stain, because otherwise they are nearly perfectly transparent, but there are lots of larger bacteria that you can see well with even a fairly cheap microscope, of the type that teenagers use in school. Indeed, when I was 15 years old, I remember watching a lot of single celled organisms crawl around in the microscope that I was assigned at school. Although most bacteria tend to be on the smaller side of single celled organisms, some larger bacteria are still easy to see, even with such cheap microscopes.
With Leprosy, a major difficulty is the large % of junk DNA and rapid mutation. Immune system relies on creating specialized T-cells to identify protein markers of harmful agents, but M Leprae can change those protein markers in each generation
When I was healthy for 6 months, and I felt confident that I was going to remain healthy, I went back to my main doctor of those 20 years. They simply said, “Yes, fasting seems to work really well for some people.” I was irritated that they had apparently known about this but hadn’t suggested it to me.
Minor nit, the feeling of awfulness from the flu is the effect of your immune system kicking in. The feeling of relief is when it kicks out, because the tide of the battle has turned.
I like your point, though if we're talking about the overall disease fighting system, it is the evolutionary oldest part that handles the initial inflammation, nasal drip, and fever. The later part, the adaptive part, the part actually works on the principle of immunity, gets going later, and once it has asserted itself, then you feel relief, at least in part because that primitive initial reaction begins to recede.
The problem is that Lyme isn't the only tick borne disease. There are a bunch and some speculate there are more undetected ones. When someone has "chronic lyme" maybe they have some other prion that no one has diagnosed yet.
https://en.wikipedia.org/wiki/Tick-borne_disease
Even if there's only one mention of it in the article, I'm glad they included it: alpha-gal syndrome. Not a ton of people seem to know about it and yet I continue to meet more and more people that are affected by it.
For those unaware, it causes a person to develop an allergy to red meat and there's currently no treatment for it other than to wait. Granted, it's not as serious as Lyme Disease, I hope it gets to be well known so there's increased chances of finding a cure for it.
My friend's brother was bitten by a lone star tick on Long Island and since has developed that syndrome. It's been pretty funny trying to figure out what we can cook for him at our BBQ's since apparently the meats he's able to eat now are essentially chicken, fish, duck, and human.
I read about this issue in a runners World article. Most people assume that the tics jump from trees down onto people. But that's not how they said it goes.
They said that the tics which spread Lyme disease get spread onto runners from Tall Grass that people run through as you make contact with the grass they get onto you.
I had a friend who was in the Marines and he told me once that they wore panty hose when training in areas with ticks. He said the only downside was that they can be hot in the summer time.
I've got ticks a few times a year just running in the woods (the last one was Saturday). During holidays in the Pyrenees with my family, we had to scan our bodies for ticks every day, and every day we found several -- up to a dozen -- on each of us.
Now the article is very light on the main question: why did ticks multiply that much recently?
> People need to take up hunting again to reduce the numbers of those tick motherships.
... or, as others have said elsewhere in the thread, restore a balance to the ecosystem by reintroducing and protecting natural predators (wolves, foxes, etc.).
You'd think that putting wolves and bears into suburbia would attract even more resistance than bowhunting from tree stands. Something must be done about the deer overpopulation, they raid peoples' gardens, they prevent forest regeneration, they are a pest. Maybe we could start by withdrawing from the suburbs.
it probably is global warming but of course that actually means many many interacting effects. In no particular order
1. Different weather patterns caused by El Nino(warm pacific equatorial temperatures resulting in increased precipitation) along with similar weather patterns in other areas of the world. This is especially noticeable during the winter with increased snow fall providing denser snowpack and a more protected subnivean zone for one of ticks primary hosts, white footed and field mice. Warm weather in general also helps. Ticks are not greatly affected by cold weather but their hosts are and when there are more hosts, there are more ticks.
2. Increased temperatures has a complex affect on tick habitat. While a rise in temperature can increase forest biomass and increase growth rates of transitioning forest, it decreases biomass at the forest edge which is a place where low lying scrub grows the most and provides ideal "questing"[0] habitat for ticks. So that seems like wash but it's actually more complex even that that.
3. This one is more Anthropocene than specifically climate related. Many prime tick hosts have adapted well to human crowded space including deer, mice and small mammals. Their predators such as wolves, foxes, and birds of prey have not fared as well.
4. Related to 3 above, sprawl puts people in closer proximity to habitats once favored by tick hosts so there may be a factor where ticks are not increasing so much as human/tick interaction is.
My theory is the discontinuation of large scale DDT spraying. When I was growing up in the 70s and 80s in the northeast of the US I would see maybe 1 tick a summer and I never saw an eagle or a hawk. Now I see plenty of both. Maybe we could resume DDT spraying for a year or two and knock the ticks back
I remember standing in line at a coffee shop, after walking some dogs on a nature trail. I felt a sharp pain on my hip flexor and knew right away it was a tick bite, even though I had never had one before. I rushed into the bathroom and lo and behold, it was a tick. In a panic I asked all the women in the coffee shop if they had tweezers. They must have thought I had a screw loose. None of them did so I rushed home to pull it off. I kid you not, as I pulled it, I heard its jaws (or whatever) snap. P.S. you don’t need to burn them unless they’ve already burrowed.
I had dozens of ticks as a kid. Lyme disease hadn't spread to Canada yet, so it wasn't a big deal. I never once felt them bite; they produce an anesthetic so you don't feel it. Sometimes you could feel them crawling on you, but most of the time you didn't even feel that.
And you didn't hear the jaws snap when you pulled it off, you heard the mouth parts tearing. You have to be careful pulling a tick off or the mouth parts will stay in your skin, causing irritation and inflammation.
I can confirm. I had a tick on my shoulder, which tore off. We didn't realize and the skin healed over, the mandibles eventually dissolved, and I was left with an 'air' pocket under my skin I could play with for the next 20 years.
yup, you don't feel them biting. i pulled hundreds of ticks off of me and my dogs growing up. pull slowly but firmly from the base of the head, with fingernails if tweezers aren't handy. squeeze the body between (the backs of) your fingernails until they snap to finish them off (same for fleas). i don't really remember having issues with the mouth parts staying behind and irritating the skin, even though that was warned about too back then.
I've heard of such a tool, but never seen one. Otherwise, twisting a tick using tweezers or your fingers is a great way to break its head off under your skin.
Edit: I had a scary experience. After rain I was hunting in the woods with bushes a metre tall, shotgut over the head to avoid accidents. Then a snake hiss ahead, tried to turn right, another snake hiss that way, same to left and... same back.
I panicked and got out of the bushes as fast as I could, I was panting. Then I noticed I was covered by hundreds of ticks. I shouted and my father came alarmed. He managed to brush all of them except one that I found at home. It took my mother about ten seconds to take it off with olive oil.
Yes. We used some chemical powders for the dogs. I thought the same was going to be used for me too but, to my surprise the oil was very effective. The bug seemed to dislike it as much as I disliked the bug. It loosened the grip very quickly.
Might be time for a CRISPR Gene Drive to eradicate ticks in some zones. Plausibly more critical than mosquitoes.
Obviously we need to be very careful about trying to rebalance what we've put out of balance, and study to be sure that we are not eliminating a critical food source for other links in the food web.
I've had 100+ ticks always removed them using wet cloth with a tiny bit of (solid) soap turning counter-clockwise. Somehow clockwise never worked for me, counter-clockwise it was out after the 2nd rotation. We had both lyme and tick-borne encephalitis in the family, not too bad if caught early.
Yeah, he's mentioned once or twice that his is so bad that he can't even write reliably, let alone do speaking gigs or consulting work. Stuff like this scares the shit out of me.
This isn't a joke. In New England where I live, in the early 2000's, car accidents involving moose had become so common that Vermont attempted to halve the moose population by increasing hunting permits.
Today, the population in New England has been shockingly decimated by ticks... researchers are pulling upwards of ten thousand ticks off of dying moose. They've been bled dry, thanks to warmer winters and reduced tick dormancy periods.
Bullshit, they're not exploding. Lyme disease confirmed cases are occurring at roughly the same rate in 2017 as 2007. Look at the CDC data yourself: https://www.cdc.gov/lyme/stats/graphs.html
Exploding doesn't just mean increasing, it means accelerating. No one would look at that graph and say the rate is increasing. No doubt they excluded it from their article, and instead chose to cherry-pick years like you're saying, because it discredits their title.
Lyme disease is awful, and ticks are truly evil creatures. The intellectual disabilities it causes are especially scary to me as a knowledge worker. It's about time we start treating this as the public health crisis that it is and targeting concerted efforts towards eradicating ticks.
When we go hiking, we won’t leave the house without a tick card or something similar, e.g tick squeezers. When we get back we scan everyone from head to toe for ticks. At least Lyme disease can be prevented quite successfully if the tick is removed within the first 24 hours.
If you pay close attention to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/ you’ll note that a portion of the population does appear to have a genotype that makes people susceptible to arthritis which is exactly the symptoms that the initial negative response to Lymerix claimed.
I wish there was a Lyme vaccine but imho the case of Lymerix is closer to Rotashield than an innocent victim of anti-vaxxers.
I grew up in a Lyme hotspot. Every early outdoor memory of mine involved checking for ticks afterwards.
My younger brother had the bullseye as a very young child. My mother had a different very debilitating tick borne illness, Babesiosis, but was only treated for Lyme for months.
I had a blood test when I was 20, and was told I was positive for Lyme. I had zero symptoms of Lyme, and had been spending most of my time living out of the region at college, though I had complained of some general fatigue. They put me on doxycycline, and I dutifully took it. I still don't know whether I actually had Lyme. My father, a chronic hypochondriac, was put on a Lyme regimen at one point too, though it was never clear exactly what symptoms he had.
I'm not entirely sure the point I'm getting at with these anecdotes. Doctors in Lyme hotspots may diagnose Lyme too readily. More specifically, they may order too many blood tests, which from my naive research do not look to be especially accurate for Lyme.
One of my neighbours when I was growing up in Australia had apparently chronic Lyme disease, however every doctor she went to told her that there was indisputably "no Lyme disease in Australia" [0]. This went on for years. Eventually she had to go on a trip to IIRC the UK to get prescribed the relevant medication, which she smuggled back to Australia.
Foley's wrong about California's tick problems getting worse as the climate gets hotter and drier. California's western fence lizard has a protein in its blood that kills the bacterium responsible for Lyme and shares the exact same climate requirements as the ticks. California doesn't get the tick unless the lizard is there and the combination keeps Lyme disease in check.
A few years ago I got bitten by something after being close to a deer but never saw any kind of insect. I had a large inflamed area (one circle IIRC) for a while, experienced mild flu symptoms for a few weeks, and then some wrist pains a few weeks after that. Doctor wouldn't give me antibiotics.
I haven't had any physical symptoms since, but I'm pretty sure my mood and cognitive ability has taken a hit. There are of course so many factors not controlled for, but it's always at the back of my mind.
I was bitten by little nymph/larval (not sure which) ticks on Bay Trail in Mountain View, CA. Had to stop riding my bicycle there (which I absolutely loved) because I just can't afford to be debilitated by Lyme's disease.
I've become violently genocidal towards these little bloodsuckers. If it was up to me, I'd wipe them out with almost any means, and at whatever cost ;-)
After looking into the anti-tick options I actually started fantasizing about some kind of super lightweight "earth suit" (like an astronaut's space suit).
Something that you could put on, fully seal yourself in, and then just enjoy the outdoors with reckless abandon. I know it sounds a bit crazy but I think it could potentially be a transformative way of exploring the outdoors.
I love the idea of being rattlesnake/tick/spider/thorn-proof. I could sleep outdoors in the middle of fields, under trees, in puddles, etc.
You could wear a wet suit, taped with some gaffer tape, thick balaclava, etc. It might not stop leaches but will reduce the chance of ticks and most other bites.
But you would also sweat a lot and generally be quite uncomfortable. Tradeoffs...
Though I am nearly there when I go for walks in mosquito country. Big hat, with netting all around, socks half way up my legs, trousers stuck well inside them...
Lyme and other tick-borne diseases have yet to receive anything like that sort of attention. In 1998, the Food and Drug Administration approved a Lyme disease vaccine called Lymerix, administered in a three-injection cycle, that reduced infections in adults by nearly 80%. But it was discontinued three years later after sales bottomed out, due in large part to public fears driven by negative news reports over its side effects (most notably arthritis) and a class-action lawsuit whose claims were debunked. It was an early victory for the anti-vaccine movement, which gained momentum thanks to a now-retracted study linking autism to the measles-mumps-rubella vaccine that was released the same year as Lymerix.
“That actually scared me,” says Joyce Sakamoto, an entomologist at the Center for Infectious Disease Dynamics at Pennsylvania State University who has researched public engagement strategies to improve tick-borne disease literacy. “That was a case where the anti-vax community was able to effectively kill something entirely without a lot of scientific evidence.”
We don't vaccinate dogs for lyme disease. We give them a topical or oral systemic insecticide that permeates their skin and bloodstream so as to kill ticks on contact.
Dogs have short, and I guess less valuable, lives. So this is considered an acceptable practice for prevention. And there are many many dogs with severe reactions to these medications, including some fatalities.
> For vaccination of healthy dogs 8 weeks of age or older as an aid in the prevention of clinical disease and subclinical arthritis associated with Borrelia burgdorferi.
The CDC says post-treatment Lyme disease syndrome or 'chronic lyme' doesn't exist. While i am suspicious of this claim, I know people who say they have it, and have subjected themselves to every treatment under the sun without any success.
> The CDC says post-treatment Lyme disease syndrome or 'chronic lyme' doesn't exist.
You're conflating two terms. PTLDS exists, in patients who had Lyme but experience post-treatment symptoms.
"Chronic Lyme" is different, and is largely problematic because the folks who believe they have it tend to have never actually been exposed to Lyme in the first place.
A CDC confirmed case requires positive on five bands which is pretty good. These are reported to the CDC. This only confirms infection with Lyme at some point in time (could’ve been years ago). It in no way tells anything about so called “chronic Lyme” or “post treatment Lyme disease” or possible symptoms from an untreated Lyme infection (which is real and can turn into bad news such as heart failure).
A reason for possible increases in reported cases is that Lyme infected ticks are now found in every state, and also it is a more widely known about disease possibly leading to more testing for it and thus more reporting of infections.
One problem is this test isn’t perfect. For example in my case I am five bands positive. I tested myself twice six months apart on Quest with the same five bands positive both times. But being a thorough person I also at the same time tested myself using the IgeneX test, which had no (zero) positive bands the both times. I reported this pretty bad anomaly to the CMS but haven’t heard a response.
It is my impression from most of the research and talking to a pretty awesome neurologist who deals with a lot of “chronic Lyme” cases that make their way to him: that most chronic Lyme is actually an autoimmune reaction. Possibly caused by a prior Lyme infection (possibly not) but if so then the Lyme probably long ago was defeated, as patients with those symptoms tend to improve once put on high dose IVIG.
> The term “chronic Lyme disease” (CLD) has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with B. burgdorferi (Marques, 2008). Because of the confusion in how the term CLD is employed, experts in this field do not support its use.
and I also almost fell for "chronic Lyme" few years ago. There's something seriously unsettling around websites/online communities dedicated to chronic Lyme. From Lyme friendly doctors, to people doing and interpreting their own tests, to people ascribing all kind of ailments to this "condition", etc.
Maybe it's wrong, but I'm happy that cases are exploding because that (hopefully) means there will be more research into better treatments and preventions.
Why is nobody eradicate ticks with genetic engineering? Ticks are a species that deserves to be eradicated. The health implications are vast and they don't contribute much to the ecosystem. They're a literal plague.
i didn't know that tick causes lyme disease. i sometimes back had severe pain allover my body, weight loss and i thought its this disease but after several tests it was confirmed negative
https://finance.uonbi.ac.ke/node/1071
This article blames sprawl and climate change, but neglects the connection to the Plum Island Animal Disease Center right off the coast of Lyme CT. Borrelia has been in the US for ages, but wasn't known for causing the debilitating symptoms this modern strain causes.
> Moreover, a Department of Agriculture spokesperson, Sandy Miller-Hays, told the news service that -- counter to Carroll's claims -- Lyme disease was never studied at Plum Island.
As for symptoms, it was described in the 1760s as "exquisite pain [in] the interior parts of the limbs", neurological symptoms in the 1920s, etc. That it took a while to recognize the cause of these things doesn't mean the disease didn't exist. https://en.wikipedia.org/wiki/Lyme_disease#History
I think that a government spokesperson should not be considered a reputable source when speaking on potential misdoings by the same government. Is there an independent source that can speak to the Plum Island claims?
15 years ago, conspiracy theorists were being asked to prove government spying. It's hard, and the coverup might leave only circumstantial evidence, but it doesn't mean its not true.
Either way, if you're trying to provide a source against the point being made, it needs to be better than that one. Is there any other?
Edit: I did a bit of looking into it.
Tick-borne diseases were definitely studied there, which means general subject was being researched. (a bunch of pubmed studies are listed here [1], and pubmed shows in the author information that they were from Plum Island. Ignore the site if you like, just look at the pubmed articles.)
The geography of the disease also fits a spread from the Plum Island facility. See the same article for a map.
I obviously can't go order and read a physical book off the cuff, but it seems like the Lab 257 book by Carroll is decently reliable, as far as can be expected when making claims counter to an official government position. From wikipedia: "The review in Army Chemical Review concluded 'Lab 257 would be cautiously valuable to someone writing a history of Plum Island'".
Anyway, in summary, there is enough evidence to ask a reasonable question: which puts the onus back on the government, or you, to provide credible evidence that Lyme was not developed there.
> The geography of the disease also fits a spread from the Plum Island facility. See the same article for a map.
No, it doesn't, considering it was documented in Scotland in the 1700s. The Plum Island facility was started in 1954.
> From wikipedia: "The review in Army Chemical Review concluded 'Lab 257 would be cautiously valuable to someone writing a history of Plum Island'".
The actual quote is:
> The review in Army Chemical Review concluded "Lab 257 would be cautiously valuable to someone writing a history of Plum Island, but is otherwise an example of fringe literature with a portrayal of almost every form of novelist style."
In other words, "it gets the biographical stuff mostly right, before it goes nutty".
> Anyway, in summary, there is enough evidence to ask a reasonable question: which puts the onus back on the government, or you, to provide credible evidence that Lyme was not developed there.
Lyme's historical record predating the very existence of the lab is fairly conclusive proof that it wasn't developed there.
> No, it doesn't, considering it was documented in Scotland in the 1700s. The Plum Island facility was started in 1954.
Yes, it does. This strain was before unseen in the US so much so it's very name references where it was first seen in the US, regardless of where it may have been elsewhere in the world.
We have no idea how or when he got infected. As far as he knows, he never had a bullseye rash, although apparently that doesn't always happen. Now I slather myself in DEET whenever I go into a an even semi-woodsy environment.
https://www.nice.org.uk/guidance/ng95
"Lyme literate" seems to be a pseudoscience term related to the ME-like crypto-syndrome "chronic Lyme disease" - for example, see towards the end here:
https://sciencebasedmedicine.org/legislative-alchemy-2014-so...
https://sciencebasedmedicine.org/florida-revokes-medical-lic...
Thing is, most pain meds dont even work. NSAIDs don't make a dent. Opiods dont work either (not that I could get a doc to prescribe them if they did). Muscle relaxers do help quite a bit in reducing the pinching of nerves. I recently did a 7 day trial on Celebrex, and after 3 days, I was in the least pain I'd been in for years (apparently it's one of those that builds over a few days). I see my PCP tomorrow and will hopefully get an ongoing prescription.
Ive been on Lyrica and gabopentin for the nerve pain in the past. While they helped with the nerve pain, I had a lot of side effects with both, and don't want to go back on either.
Anything that experimentally works, being chinese or icelandese, is included in medicine so there are a fair possibily that anything working in chinese medicine is yet included in medicine. The rest is just in the category of "dubious traditions, superstitions, fairy tales and non trustable until proven".
The basis if acupuncture is to selectively "stimulate" nerve fibers so the pain dissapears, but the nerve funcion is temporarily damaged. Is not different than blue scorpion poison against cancer, or being struck by an electric current. Killed nerves can't feel or transmit pain sensations but pain is an important defense system for animals. Anesthetics do not cure nerve issues, just hide the problem, as acupuncture does.
Sticking needles in a finger maybe could be acceptable. Touching the spine with several hot metal objects has a much higher risk and probably unaceptable in the balance of benefits and cons IMHO.
Personally, I'm skeptical of it. My wife, while also being skeptical, has recently tried it and she reports she's aeeing benefits, so I might try it, but I have not so far.
Mere mention of one's own medical situation should not generally be deemed to be open season on the entire internet tossing out medical suggestions, no matter how seemingly insightful. Most people with serious, long-standing conditions know a lot more about it than the average person on the street, have tried myriad approaches to treatment and get incredibly sick of having everyone "helpfully" toss suggestions at them at the mere mention of their diagnosis.
It's exhausting to have to say over and over "I've tried that or have a good reason why I am not doing that. I'm aware of those options. My short comment here is not remotely a comprehensive medical history."
Everyone puts it on the chronically ill person to be polite and respectful and make them feel good about wanting to help. But it's an incredibly negative experience to be constantly bombarded with such "help" and the implicit expectation that you should be politely appreciative of their good intentions.
I'm one of the people that downvoted it and that's why I did so. I'm chronically ill and also post as openly female here. I'm abundantly familiar with the desire to simply say "Oh, hey! I know something about that!" only to get a slew of advice I didn't ask for. The subjective experience of that is that the entire world clearly thinks you are an idiot who isn't trying hard enough and that's the only reason you can't fix your chronic, intractable problems for which the world has no real solutions or you would have already long ago sold your soul to the devil to finance the slam dunk answer.
This is part of why some parts of Twitter are awash with bitter complaints about Ablism and how terrible Abled people are.
FWIW, it's not really intended to be some edict with zero exceptions. How it's done matters.
I don't have any pithy advice for how to do it well. I'm still trying to sort that out myself.
I like being helpful and I hate seeing people suffer and I'm chronically ill myself, so I tend to feel like that ought to count for something in terms of being viewed as a good faith effort (other people don't always agree). Nonetheless, I recently got cussed at and blocked by someone on Twitter who was having an especially rough time. (Granted, the topic in that case was suicide, but I didn't know that when I first said something.)
When you're in a lot of pain all the time, it's really easy for things to just rub you the wrong way and get on your very last nerve when you just want to participate in the conversation like a normal person and be treated like a contributor.
I've started asking people if they want suggestions from a random internet stranger and respecting it if they say "no thanks." Or offering suggestions in a low key fashion if they are actively soliciting feedback. (This list is not comprehensive.)
Have a great day.
Please note that you getting strong headaches while traveling due to caffeine withdrawal really doesn't fall under what I was describing.
I'm talking about people with much more serious, chronic conditions where the entire world would like to act like "Your genetic disorder would totes go away if you would just eat this thing here/take this supplement/read this article!"
And I struggle with this myself because I actually have a genetic disorder and it actually has responded well to dietary and lifestyle changes, so I am prone to wanting very much to spread the good news and it tends to not go over well with other people. So I've had to learn to curb my own enthusiasm.
I'm not suggesting no one should ever offer unsolicited feedback on Hacker News. I'm just suggesting people be a little sensitive when talking to folks with overwhelming and incurable problems who have probably heard your suggestion umpteen other times and will probably just find it to be an imposition, not a brilliant insight.
Most of the time, they aren't commenting about their condition because they are hoping some random stranger will know the miracle cure that they hadn't heard of and be able to somehow back it up credibly. Most of the time, they are just trying to distract themselves from unremitting agony by engaging in a little discussion and their medical situation is something they happen to know something about, so they offer their two cents worth in hopes of feeling like a normal human being for thirty seconds.
Intruding on that with "Have you tried X! You should totes try X!" tends to be a super negative experience in most cases for such people. It robs them of their moment of normality that they were reaching for as someone who can simply talk to other people, just like anyone else.
You have a great day.
I'm certainly engaged with my medical professionals. I see about 7 docs routinely! Saw my primary care physician just this morning. I'm more engaged now that I'm married (nearly 2 years now), before I mostly grin and bared it.
I also have a genetic condition that affects my liver, but thankfully so far, it's just a monitor it quarterly or so.
For, me, at only 38, my cervical and thoracic arthritis has been my greatest challenge. My genetic condition doesnt cause me problems day to day, and can be easily managed with diet, and if need be, scheduled phlebotomy.
The arthritis, I cannot control. Most meds dont work, and the ones that do put pressure on my liver. Opiates wouldn't even really help me, I think, because I dont think they help with nerve pain which is about 95% of my problem. I have a sufficient pain tolerance I can ignore a constant burning sensation along my spine. I cannot ignore the very sharp shooting nerve pain I get that travels down an entire side of my body.
I can cope with that to an extent when it's constant. Where it really gets bad is when I get random sharp stabbing pains in my arms and legs. Bad enough I've bruised my knees hitting them against my desk from reflex.
Like I said, I'm working with my various docs to manage things, but its tough. Medically, I see: Primary care Gastroenterologist (also his nurse practitioner) Hematologist Neurologist Orthopedist
Point is: I'm trying to make things better, but what a lot of what afflicts me cannot be made better, and has to be managed, and I'm trying. Not always succeeding, but trying.
I was fortunate to be diagnosed late in life with a relatively mild form of a serious genetic disorder. This meant I had my own mental models already for what was going on in my body before I got a label.
It allowed me to bring fresh eyes to the problem space and I've healed a lot when doctors say that cannot happen. The only real downside: The world is quick to act like I'm making that up and call me crazy.
I've had good results healing nerve damage where I had issues like numb spots in my feet, so I'm convinced a lot more is possible than is currently believed to be possible.
My best understanding: parasitic infections tend to thrive due to feeding on detritus from other infections and persistent infection in spite of multiple treatments probably means she's being reinfected on a regular basis.
My chronic infections did not begin to improve until I informed my then spouse "You are never touching me again without a condom because I think you are reinfecting me." following a conversation with a friend who was a physician. He had minored in parasitology and I believed I had an undiagnosed parasitic infection. He said it was plausible, given what I was going through.
That was a major turning point in my health. After nearly a year of being at death's door, the very next round of antibiotics stabilized me and I began gradually getting better.
Prior to that, I went through two periods a few months apart of needing new antibiotics every single time I ran out for 10 or 12 weeks. Nothing was really working.
The months in between? I was bedridden, sleeping 18 to 20 hours a day and probably having a lot less sex than usual. (But I honestly just don't remember how often I was having sex during that awful, awful time. I mostly remember hallucinating conversations with The Grim Reaper.)
(Disclaimer: This is not medical advice. I am not a doctor. I don't play one on TV.)
Of course, I can't prove it and I find the question flabbergasting given that I already stated that insisting on condoms was fairly promptly followed by my condition stabilizing and improving.
For the record: I eventually divorced him. I've been celibate for medical reasons for over 14 years, in part because men I dated could not follow the simple instruction to bring a damn condom for health reasons and I was too sick and vulnerable to get up and walk out like I should have. After the third well-educated idiot pulled this on me, I vowed to myself I would be celibate until I was well, basically.
I've gotten off all drugs. I'm gradually putting in more hours on freelance work. I'm mostly healthy when doctors said that was not ever going to happen.
But that's enough about my (utter lack of a) sex life.
Medicine is far more complicated than what you naively assume with this remark.
Again, sorry for the unsolicited advice, and congratulations on becoming healthy again.
B. This is an overwhelmingly male forum. While I'm quite comfortable blathering on about all kinds of personal things that give other people the heebie-jeebies, it's my general policy to not discuss my sex life here in a way that actively encourages such interest in me.
Suffice it to say, I'm really not in any need of dating advice. My remarks were pertinent to a meaningful discussion of health and that's the only thing I'm interested in discussing here.
oh boy, this is how you're starting this comment?
>is it really that hard for a woman...
facepalm. be mindful of your privilege. this isn't a helpful comment from the start. If you find yourself starting lots of conversations this way, I suggest taking a long reassessment on what your goals are when holding dialogue on the internet.
I didn’t have Lyme but I had mold toxicity, and pretty much every doctor and test came back saying, “everything’s fine” when I clearly knew it was not. If his treatment recommendations for Lyme are half as good as his recommendations for mold, this book is worth 1,000x the price.
Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness https://www.amazon.com/dp/1628603119/ref=cm_sw_r_cp_api_i_Sv...
Some tests to get on a regular basis include: C4a, C3a, TGF-B1, MMP-9. Igenex is the best test lab for Lyme.
One thing I learned in the process is that the bullseye rash is often just a broad, flat red area, and in some people (as you point out) doesn't show at all. Any summertime flulike symptoms in tick country should lead you to suspect Lyme disease (or the group of similar related tick-borne infections).
Treatment is with antibiotics, usually doctors will use a combination of two types of antibiotics (eg doxycycline and cefdinir) for which there is some research suggesting better results. In rare cases IV antibiotics may be required, especially if evidence of cardiac or neurological involvement. Duration of treatment is for 1 to 4 months. There’s next to no evidence you should go longer than that.
After treatment patients may also need immune modulation treatment due to autoimmune reaction to the infection. High dose ivig in serious cases. Some patients also find benefit using low dose naltrexone for this though it can have a very nasty side effect of causing depression so watch yourself using it.
Almost everything else is a scam. And unfortunately with Lyme, while the patients are clearly very sick, there are an aweful lot of quacks ready to part them with their cash so be weary.
It’s important to know there are other illnesses that people need to rule out too, check for dysautonomia, POTS, ME/CFS, MS, and aaSFPN for example.
I thought you could test for bacterial nuclear material in the blood?
Edit found it: Its a PCR Assay: https://www.ncbi.nlm.nih.gov/pubmed/26469112
I have a different condition where a high salt diet is a standard medical recommendation. I benefited from getting really picky about salt quality, though that's not anything doctors ever talked about.
I eschewed table salt in favor of sea salt containing a mix of natural minerals and micronutrients, not just sodium chloride.
I also generally recommend keeping a journal to track diet and symptoms in the face of any chronic condition.
Take a look at a video on YouTube by a Harvard doctor Anna Louise Oaklander called Small Fibers Big Problem about the association they are making with something they label aaSFPN. Also take a look at some results for adrenergic and muscinaric auto antibodies, which are showing up in patients with POTS and other dysautonomias.
Relevant Plug: https://www.tickcheck.com/
As mentioned in other comments, serological tests fall short in various ways (accuracy, time). If you keep the tick that bit you, we can test it for the presence Lyme, and several other pathogens. If negative, we can effectively rule out much of the risk. Super quick & accurate, too.
For storage, a Ziplock bag works well (especially for mailing). Just make sure it's sealed air tight. A prescription pill bottle works great too because of the secure lid.
When I got home, I transferred him to a double ziplock labelled with the date and where on the body I found him and tossed him into the freezer for a few months until I figured I was in the clear.
Separately: Bay Area hikers beware -- change your clothes immediately after getting home, do complete body checks after hiking -- ideally, shower immediately.
IMO health insurance should be paying for everything preventative. It's in their financial interest to stop fretting about what kind of lab you are, encourage early diagnosis and reduce long-term medical costs.
the pharma companies won't be happy with that
I wouldn't trust the CDC data. Notice that there is no primary source on their webpage.
Here is a paper by someone who took an independent look into it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4278789/
It is intended for clothing and not the skin. The best way to apply it is to soak your clothes and let it dry. Spray on applicators are also available. Once it is dry, it is very stable and safe. It does breakdown with UV and washes, so it will need more applications. It is also available for sale and the pre-treated clothing does last through more washes.
Note: Permetherin is harmful to cats when it is wet so if you have cats at home, please read up more on it. Once it is dry, it is safe around cats.
Put it on swatches of cloth, and suspend those around your tent/tarp entrance. Also put it near your head where you sleep to keep all the biting insects away from your face.
Anecdote: I was camping with a buddy. Rain-storm happened. The protected area under his tarp with thick with mosquitoes trying to hide from the rain (there must have been thousands), I had none under my tarp. The only difference was a couple of cloth swatches of Permethrin under my tarp.
Treating things like hats, or headbands does wonders too.
[1] from a source cited here: https://en.wikipedia.org/wiki/Pyrethroid#Biodegration
Also from what I've read just applying it to your shoes is hugely effective on its own vs ticks, with socks adding another large percentage, as the majority of ticks will jump onto your feet and climb up your legs.
The rest of your clothes are worth treating too certainly, but even if it's just your feet it will be a major help.
This is very interesting advise. I always thought ticks drop from trees? no? I actually wear a hat sometimes in the forrest because of this. Am I stupid?
Inadvertently wandering through (or for a puppy sleeping in) a deer nest where there's hundreds or thousands of nymph ticks is a real life horror.
They don't really have a mechanism to alert them to the presence of animals walking below them fast enough for this to be practical for them.
This was before Lyme had spread, though. I still remember sitting in class feeling my hair and feeling the back of a tick.
So .. I think they must be on trees and bushes, I’ve never had one elsewhere.
Ticks do not jump run hop or make any fast movements. They are slow crawlers and do not drop out of trees onto you. They do have a very sensitive organ called a Haller's organ[0] which is an olfactory organ that can also sense humidity, C02 and Temperature.
Lyme's disease isn't the only thing you have to worry about getting from Ticks. They can also carry Tularemia fever, Powassan virus, Ehrlichiosis and Rocky Mountain spotted fever.
Ticks are resistant to cold weather but one of their primary hosts, mice, are not. So after a particularly cold winter there may be less ticks the following Summer. However, many people would say the Northeast U.S. had a long cold and snowy winter but the early and long lasting snow cover provided the mice and other subnivean zone animals with lots of cover and protection from the cold so this Summer is actually turning out to be a bad one for ticks (at least in the NE U.S.).
In our household, we do thorough tick checks on everyone after a day spent outside or in the woods. This includes meticulously checking hair and armpits and a self-check around the groin.
You can help your own property by cutting 1.5 inch PVC pipe into 3-5 inch sections and stuffing it with permethrin soaked cotton balls. Mice will use these to build nests and any ticks coming into contact with the mice will die on contact[1]
Do not get Permethrin near any invertebrates or aquatic wildlife that you do not want to kill[2]
Edit: product we use in our household which we buy at the local outdoor store but is also available online[3]
[0]https://entomologytoday.org/2018/01/16/up-close-look-tiny-se...
[1]https://www.ncbi.nlm.nih.gov/pubmed/1941927
[2]http://pmep.cce.cornell.edu/profiles/extoxnet/metiram-propox...
[3]https://sawyer.com/products/permethrin-insect-repellent-trea...
https://tickencounter.org/faq/tick_habitat#tickhabitat_quest...
https://en.wikipedia.org/wiki/Icaridin
DEET has a tendency to damage synthetic clothing such as spandex and rayon, and at higher concentrations can actually melt plastic and paint. Even lower concentrations can mess up your sunglasses.
Use both for best protection.
If you want really safe external repellant, you could probably go back to sulfur powder. It stinks like eggs, but it seems to work okay. Maybe that's why all the bigger campgrounds seem to have sulfur-water.
Can you explain how that works?
I don't know about ticks, but my military spouse had good results from eating a match head once a day to discourage chiggers when he was in the field in Georgia. He later replaced this policy with taking garlic supplements.
I bought his supplements. He specifically asked for the smelly garlic pills, not the ones that advertise low odor.
From what I gather, his co-workers were insanely jealous of his general lack of miserable bug bites in spite of laying in the same grass as them. He was very introverted and closed mouth. Unlike me, he was entirely disinclined to helpfully blather on about such things to people unlikely to believe him.
He was probably wiser than me in some sense. I would likely get a lot less flak if I didn't remark on such things myself, kept it to myself and privately gloated.
https://thewirecutter.com/reviews/best-bug-repellent/
The most effective method of not getting bitten is not to go in to the woods at all.
your profile reads:
He who lives without folly is not as wise as he thinks. -- Rouchefoucald
Agreed. I'm not worried about ticks since I only go between work and my mom's basement.
For me, this is the key to surviving hay fever season.
Better to just not go outside, right?
Avoidance is not particularly useful advice, but effective long lasting protection that you don’t need to think about putting on is.
[0]https://sawyer.com/products/permethrin-insect-repellent-trea...
It was awful, something I wouldn't wish on anyone.
If you do get a deer tick (they are the small ones, not the giant gross ones) save it, there are a number of places you can send it for peace of mind that it was not infected.
Also consider brief antibiotic prophylaxis: 1-3 doses of doxycycline are often recommended. I'm not in favor of anti-biotic overuse, but if lyme can turn into chronic lyme and that was indeed what I dealt with for 10 years of pain and crushing fatigue, then you want to avoid it.
(edit: typos)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/
This isn't to say you haven't been dealing with a lot of garbage, just that you might need to seek different medical care if your doctors are telling you that you have chronic lyme disease.
I agree that "alternative medicine" can be a hotbed of pseudo-science and sketchy treatment, but I also think that in terms of a lot of these chronic auto-immune related conditions, our evidence base is still pretty small and there's a lot we don't know. And the dominant Western medical system tends to do much better with acute conditions with a clear etiology of cause/effect than nebulous clusters of symptoms (see also, all of mental health).
My hunch is that chronic lyme, just like for example chronic fatigue that lasts for years after Epstein-Barr, is some sort of auto-immune condition triggered by the initial infection, even if the initial infection is gone. With Lyme it is a little more complicated because there are spirochetes involved.
I assure you I've probably read everything that the NIH has put out about Lyme all the way to some of the wackiest all caps blinking sketchy sell-me-vitamin treatment websites out there, as well as chronic fatigue (I spent the first 7 of those years considering it CFIDS). It nearly destroyed all of my 20s.
Treat prophylatically or not, but try not to get Lyme, that's all I'm saying.
All these things were linked, yet separate. You cannot tell me the chronic fatigue was just my depression, as I can tell a difference, but neither was my depression just from not being able to be active for more than about 2-3 hours each day. Mental health issues pre-dated chronic fatigue, but chronic fatigue intensified them.
I did many treatments, though I chose to never have a PICC line installed for months of IV antibiotics - that seemed like chemotherapy to me then and now, and not without its own risks. Everything from antibiotic regimens to homeopathy to humming with crystals in my hands. Sometimes I was raw vegan, other times I smoked heavily, drank heavily, because nothing worked anyway, why not have fun, etc.
Too long for one comment here, but find me privately if you are struggling with chronic immune stuff.
I'm unsure what eventually worked, and what was time. A lot of it, cliche as it is, was the very strong love of a very supportive partner that saw I could still live, even if I thought I couldn't.
I would say the following things all had major effects, though I don't use any currently - many of them provide symptomatic relief for some things, I'm not sure why things shifted underneath it all.
#1) regular injections of methyl-B12 even with normal cyano-b12 levels
#2) low dose Abilify and modafinil and (sparingly) stimulants
#4) regular yoga practice that provided low-impact exercise, mindfulness amidst the fear that my life was over, and a way back into an awareness of my body that didn't only have me think it was the enemy that was killing me, and of a self that transcended whatever I thought I was
#5) treatment for orthostatic hypotension including low dose steroids, salt pills, compression stockings, etc
#6) psychotherapy
#7) A few times rounds of abx when I was at my worst seemed to help a lot
#8) supplemental testosterone for 2 years when mine was low-normal (is normal-normal now without supplements)
#9) eliminating all processed anything from my diet for about 4 years, all gluten for about 5, all refined sugars for about 5 (can eat anything now without ill-effect) and drinking home made bone broth regularly
(I also know some people will read this and hone in on a few things and be like oh! he just needed some psych drugs, therapy, and exercise! Those can def all be helpful things, but I assure you it was a strange and complicated journey through the mindbody, I still have no sample size other than me, and the methyl-B12 was by far the most helpful even though that largely falls under the pseudo-science perpetuated by people searching for autism cures...)
I hope anyone who suspects they or someone they love has chronic lyme will dig deeper than just reading scholarly review articles. A professional scholar tends to write only about things that they anticipate will advance their career.
In particular, I hope anyone who suspects chronic lyme will meditate on some of the comments on HN written by people who claim to have recovered from chronic lyme or what they suspect was chronic lyme. If you search the web for information on chronic lyme you will encounter a lot of material by people who make a living trying to persuade various segments of the public in one direction or another. (Some of the professional persuaders have MD after their name.) On HN comments in contrast I am satisfied that almost all the substantive comments about chronic lyme are currently not written by professional persuaders.
https://www.healthline.com/health/lyme-disease-chronic-persi...
https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-d...
Both rodents and deer are part of the lifecycle of the tick. Suppressing deer populations and encouraging red foxes and other rodent predators would have to help.
However we might not be awash in deer if we hadn't first 'culled' all the predators. Wolves for example.¹
1: http://www.uky.edu/OtherOrgs/AppalFor/Readings/leopold.pdf
We need to cull them ourselves.
Here's some wolf news for those who enjoy that sort of thing, in Dutch: http://www.welkomwolf.be/node/238
This time, the symptoms were completely different. I assumed it was a new illness. Doctors were mystified. One said it was psychosomatic. I was off antibiotics for more than 6 months. I got sicker and sicker. I was in bad shape when I decided this illness was the same as the previous illness. I took a combination of Cipro and Zithromax for 1 year. I got better. Then I stopped. I got sick again.
I was eager to get back to my career so I tried a few antibiotics that might be light, cheap, easy and sustainable. A friend of mine, as a teenager, had acne and the doctors had them on antibiotics for 4 years to deal with the acne. They’d taken something similar to doxycycline. I tried it but it did nothing for me. I tried hyperbaric oxygen therapy, which gave me great energy but did not cure me. Then I tried Amoxicillin. That worked great. I took that for 11 years. Then I quit and got sick again. I went back to Biaxin, and took that for another 2 years. My business was going well so I could not focus on my health. I was busy. The simplest thing was to take antibiotics, which kept me healthy so I could focus on work. So long as I took antibiotics the illness kept its distance. In that sense, the illness was similar to leprosy — I could live a normal life but only if I took antibiotics every day.
But I was irritated with my business partner (I’ve written about that elsewhere). So I sold my share of the business.
Now I had time to focus on my health. What had I not yet tried? What about fasting?
I went 2 weeks without food. I took antibiotics the first week but not the second. I felt sick. The fast ended. I had a vegetarian meal. I fell asleep. I woke up the next day and had a large vegetarian meal. That night I felt funny. The feeling was similar to that moment, if you have a flu, when the fever breaks. With a flu, you get sicker and sicker till a moment the fever breaks and then you know that your immune system has kicked in. That was exactly the feeling that I had then.
I have not taken any antibiotics since that fast, and I’ve been blessed with excellent health.
Those teenagers, who take antibiotics, with a microscope at home can do this simple experiment: prick your finger with a needle and put a drop of blood on steriled glass, then put that under a microscope. Do you see bacteria? Yes, of course you do. Even if you take antibiotics for 20 years, your body will still be seething with bacteria. There is no way to get rid of the bacteria on your body. That isn’t what antibiotics do. Antibiotics work with your immune system to bring bacterial load back to a reasonable level. If antibiotics killed all bacteria then people with compromised immune systems could be kept safe from bacteria with antibiotics. But there isn’t a doctor in the world who thinks that’s possible.
Please, if you can find a microscope, go look. Use your eyes. Your blood system is absolutely not sterile, that is a wildly non-scientific thing to say. Your immune system can not possibly go after ever protein it meets, otherwise you would be allergic to all food, and you would die. When you see an article such as "The dormant blood microbiome in chronic, inflammatory diseases" ask yourself, what is a dormant blood microbiome?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4487407/
https://www.ncbi.nlm.nih.gov/pubmed/29367657
https://en.wikipedia.org/wiki/Alpha-gal_allergy
Maybe antibiotics kept under control a bad microorganism, but which had resistance not to be killed. Maybe fasting helped kill it.
I'm not a doctor.
Have you followed up with any of the doctors since? What did they say in response to your recovery?
For those unaware, it causes a person to develop an allergy to red meat and there's currently no treatment for it other than to wait. Granted, it's not as serious as Lyme Disease, I hope it gets to be well known so there's increased chances of finding a cure for it.
They said that the tics which spread Lyme disease get spread onto runners from Tall Grass that people run through as you make contact with the grass they get onto you.
Now the article is very light on the main question: why did ticks multiply that much recently?
It's because of warmer winters and an exploding deer population. People need to take up hunting again to reduce the numbers of those tick motherships.
> If the urban rat was the primary carrier of bubonic plague, the country mouse is it for Lyme disease.
... or, as others have said elsewhere in the thread, restore a balance to the ecosystem by reintroducing and protecting natural predators (wolves, foxes, etc.).
"Bird populations in steep decline in North America, study finds"
> North America has more than a billion fewer birds than it did 40 years ago
https://www.theglobeandmail.com/technology/science/report-fi...
1. Different weather patterns caused by El Nino(warm pacific equatorial temperatures resulting in increased precipitation) along with similar weather patterns in other areas of the world. This is especially noticeable during the winter with increased snow fall providing denser snowpack and a more protected subnivean zone for one of ticks primary hosts, white footed and field mice. Warm weather in general also helps. Ticks are not greatly affected by cold weather but their hosts are and when there are more hosts, there are more ticks.
2. Increased temperatures has a complex affect on tick habitat. While a rise in temperature can increase forest biomass and increase growth rates of transitioning forest, it decreases biomass at the forest edge which is a place where low lying scrub grows the most and provides ideal "questing"[0] habitat for ticks. So that seems like wash but it's actually more complex even that that.
3. This one is more Anthropocene than specifically climate related. Many prime tick hosts have adapted well to human crowded space including deer, mice and small mammals. Their predators such as wolves, foxes, and birds of prey have not fared as well.
4. Related to 3 above, sprawl puts people in closer proximity to habitats once favored by tick hosts so there may be a factor where ticks are not increasing so much as human/tick interaction is.
[0]https://www.cdc.gov/ticks/life_cycle_and_hosts.html search for questing
And you didn't hear the jaws snap when you pulled it off, you heard the mouth parts tearing. You have to be careful pulling a tick off or the mouth parts will stay in your skin, causing irritation and inflammation.
https://www.amazon.de/s?k=tick+card
Edit: I had a scary experience. After rain I was hunting in the woods with bushes a metre tall, shotgut over the head to avoid accidents. Then a snake hiss ahead, tried to turn right, another snake hiss that way, same to left and... same back.
I panicked and got out of the bushes as fast as I could, I was panting. Then I noticed I was covered by hundreds of ticks. I shouted and my father came alarmed. He managed to brush all of them except one that I found at home. It took my mother about ten seconds to take it off with olive oil.
Coating them in oil blocks their oxygen exchange, so they release, but sometimes they vomit back into the bit when they do.
Obviously we need to be very careful about trying to rebalance what we've put out of balance, and study to be sure that we are not eliminating a critical food source for other links in the food web.
https://psmag.com/magazine/deleting-a-species-genetically-en...
You shouldnt yank it, more along the lines of the force you'd use to open a zipper.
Yeah, he's mentioned once or twice that his is so bad that he can't even write reliably, let alone do speaking gigs or consulting work. Stuff like this scares the shit out of me.
Today, the population in New England has been shockingly decimated by ticks... researchers are pulling upwards of ten thousand ticks off of dying moose. They've been bled dry, thanks to warmer winters and reduced tick dormancy periods.
I can pick 2010 (22,561) vs 2017 (29,513)
Their data set begins at 1997 and ends in 2017 though:
1997: 12,801
2017: 29,513
https://www.cdc.gov/features/lymedisease/index.html
https://www.vox.com/science-and-health/2018/5/7/17314716/lym...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/
I would definitely pay money for this if they brought it back. Probably up to hundreds of dollars.
I wish there was a Lyme vaccine but imho the case of Lymerix is closer to Rotashield than an innocent victim of anti-vaxxers.
My younger brother had the bullseye as a very young child. My mother had a different very debilitating tick borne illness, Babesiosis, but was only treated for Lyme for months.
I had a blood test when I was 20, and was told I was positive for Lyme. I had zero symptoms of Lyme, and had been spending most of my time living out of the region at college, though I had complained of some general fatigue. They put me on doxycycline, and I dutifully took it. I still don't know whether I actually had Lyme. My father, a chronic hypochondriac, was put on a Lyme regimen at one point too, though it was never clear exactly what symptoms he had.
I'm not entirely sure the point I'm getting at with these anecdotes. Doctors in Lyme hotspots may diagnose Lyme too readily. More specifically, they may order too many blood tests, which from my naive research do not look to be especially accurate for Lyme.
https://www.amazon.co.uk/Anti-Brumm-Forte-150-ml/dp/B006ZL4H...
https://www.amazon.com/OFF-Deep-Woods-Insect-Repellent/dp/B0...
[0] - https://www.health.gov.au/internet/main/publishing.nsf/Conte...
https://www.latimes.com/opinion/la-xpm-2013-aug-20-la-ol-lym...
I haven't had any physical symptoms since, but I'm pretty sure my mood and cognitive ability has taken a hit. There are of course so many factors not controlled for, but it's always at the back of my mind.
I've become violently genocidal towards these little bloodsuckers. If it was up to me, I'd wipe them out with almost any means, and at whatever cost ;-)
After looking into the anti-tick options I actually started fantasizing about some kind of super lightweight "earth suit" (like an astronaut's space suit).
Something that you could put on, fully seal yourself in, and then just enjoy the outdoors with reckless abandon. I know it sounds a bit crazy but I think it could potentially be a transformative way of exploring the outdoors.
I love the idea of being rattlesnake/tick/spider/thorn-proof. I could sleep outdoors in the middle of fields, under trees, in puddles, etc.
But you would also sweat a lot and generally be quite uncomfortable. Tradeoffs...
Though I am nearly there when I go for walks in mosquito country. Big hat, with netting all around, socks half way up my legs, trousers stuck well inside them...
I do really hate ticks. Ruins summers for me.
https://www.cdc.gov/lyme/datasurveillance/index.html
We now live in a world where you can vaccinate your dog for Lyme disease but not yourself.
Lyme and other tick-borne diseases have yet to receive anything like that sort of attention. In 1998, the Food and Drug Administration approved a Lyme disease vaccine called Lymerix, administered in a three-injection cycle, that reduced infections in adults by nearly 80%. But it was discontinued three years later after sales bottomed out, due in large part to public fears driven by negative news reports over its side effects (most notably arthritis) and a class-action lawsuit whose claims were debunked. It was an early victory for the anti-vaccine movement, which gained momentum thanks to a now-retracted study linking autism to the measles-mumps-rubella vaccine that was released the same year as Lymerix.
“That actually scared me,” says Joyce Sakamoto, an entomologist at the Center for Infectious Disease Dynamics at Pennsylvania State University who has researched public engagement strategies to improve tick-borne disease literacy. “That was a case where the anti-vax community was able to effectively kill something entirely without a lot of scientific evidence.”
Damned depressing.
Dogs have short, and I guess less valuable, lives. So this is considered an acceptable practice for prevention. And there are many many dogs with severe reactions to these medications, including some fatalities.
Would you really want to do that to yourself?
> For vaccination of healthy dogs 8 weeks of age or older as an aid in the prevention of clinical disease and subclinical arthritis associated with Borrelia burgdorferi.
You're conflating two terms. PTLDS exists, in patients who had Lyme but experience post-treatment symptoms.
"Chronic Lyme" is different, and is largely problematic because the folks who believe they have it tend to have never actually been exposed to Lyme in the first place.
https://www.niaid.nih.gov/diseases-conditions/chronic-lyme-d...
A reason for possible increases in reported cases is that Lyme infected ticks are now found in every state, and also it is a more widely known about disease possibly leading to more testing for it and thus more reporting of infections.
One problem is this test isn’t perfect. For example in my case I am five bands positive. I tested myself twice six months apart on Quest with the same five bands positive both times. But being a thorough person I also at the same time tested myself using the IgeneX test, which had no (zero) positive bands the both times. I reported this pretty bad anomaly to the CMS but haven’t heard a response.
It is my impression from most of the research and talking to a pretty awesome neurologist who deals with a lot of “chronic Lyme” cases that make their way to him: that most chronic Lyme is actually an autoimmune reaction. Possibly caused by a prior Lyme infection (possibly not) but if so then the Lyme probably long ago was defeated, as patients with those symptoms tend to improve once put on high dose IVIG.
https://www.cdc.gov/lyme/faq/index.html
> The term “chronic Lyme disease” (CLD) has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with B. burgdorferi (Marques, 2008). Because of the confusion in how the term CLD is employed, experts in this field do not support its use.
https://www.fasebj.org/doi/10.1096/fj.10-167247
https://sciencebasedmedicine.org/does-everybody-have-chronic...
and I also almost fell for "chronic Lyme" few years ago. There's something seriously unsettling around websites/online communities dedicated to chronic Lyme. From Lyme friendly doctors, to people doing and interpreting their own tests, to people ascribing all kind of ailments to this "condition", etc.
Bill Pardy: What?
Jack MacReady: Lyme disease. You touch some deer feces, and then you... eat a sandwich without washin' your hands. You got your lyme disease!
Bill Pardy: And that makes you look like a squid?
> Moreover, a Department of Agriculture spokesperson, Sandy Miller-Hays, told the news service that -- counter to Carroll's claims -- Lyme disease was never studied at Plum Island.
As for symptoms, it was described in the 1760s as "exquisite pain [in] the interior parts of the limbs", neurological symptoms in the 1920s, etc. That it took a while to recognize the cause of these things doesn't mean the disease didn't exist. https://en.wikipedia.org/wiki/Lyme_disease#History
Either way, if you're trying to provide a source against the point being made, it needs to be better than that one. Is there any other?
Edit: I did a bit of looking into it.
Tick-borne diseases were definitely studied there, which means general subject was being researched. (a bunch of pubmed studies are listed here [1], and pubmed shows in the author information that they were from Plum Island. Ignore the site if you like, just look at the pubmed articles.)
The geography of the disease also fits a spread from the Plum Island facility. See the same article for a map.
I obviously can't go order and read a physical book off the cuff, but it seems like the Lab 257 book by Carroll is decently reliable, as far as can be expected when making claims counter to an official government position. From wikipedia: "The review in Army Chemical Review concluded 'Lab 257 would be cautiously valuable to someone writing a history of Plum Island'".
Anyway, in summary, there is enough evidence to ask a reasonable question: which puts the onus back on the government, or you, to provide credible evidence that Lyme was not developed there.
No, it doesn't, considering it was documented in Scotland in the 1700s. The Plum Island facility was started in 1954.
> From wikipedia: "The review in Army Chemical Review concluded 'Lab 257 would be cautiously valuable to someone writing a history of Plum Island'".
The actual quote is:
> The review in Army Chemical Review concluded "Lab 257 would be cautiously valuable to someone writing a history of Plum Island, but is otherwise an example of fringe literature with a portrayal of almost every form of novelist style."
In other words, "it gets the biographical stuff mostly right, before it goes nutty".
> Anyway, in summary, there is enough evidence to ask a reasonable question: which puts the onus back on the government, or you, to provide credible evidence that Lyme was not developed there.
Lyme's historical record predating the very existence of the lab is fairly conclusive proof that it wasn't developed there.
Yes, it does. This strain was before unseen in the US so much so it's very name references where it was first seen in the US, regardless of where it may have been elsewhere in the world.