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.
https://sciencebasedmedicine.org/florida-revokes-medical-lic...
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...
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.
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.
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.
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.
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.
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.
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.