[robolange]

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.

[Assossa]

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.

[spacebatsghost]

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.

[twic]

The UK NICE guidelines suggest doxycycline, and have a section discussing the evidence for that:

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...

[Balgair]

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.

[nradov]

There is no formal certification process for "Lyme Literate Medical Doctors". Many are quacks who don't follow evidence based medicine guidelines.

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

[koolba]

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.

[astazangasta]

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.

[hermitdev]

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.

[astazangasta]

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.

[pvaldes]

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.

[hermitdev]

I have not tried accupuncture.

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.

[dotancohen]

There is no reason for this comment to be downvoted. It is both informative and insightful.

[DoreenMichele]

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.

[DoreenMichele]

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.)

[go_ruby]

So was your spouse reinfecting you?

[DoreenMichele]

I believe so.

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.

[magduf]

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.

[DoreenMichele]

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.

[bluntfang]

>I'm not trying to be snarky or insensitive, but

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.

[carapace]

Really? Medical advice from randos on the Internet? HN randos, sure, but still. Reality check bruv.

[sbenitoj]

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.

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...

[lymeeducator]

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.

[idlewords]

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).

[tinus_hn]

The bull’s eye rash is deceptive because that is what people expect but depending on your location it may only appear in 20% of all cases.