#aboutlyme

[heatherwitch]

Hi Mouse! I was diagnosed with Lyme disease three years ago and went through the usual month of antibiotics. None of my health professionals have ever brought it up since, or explained what it does at all for that matter. I'm so confused, and although I have Fibro I'm convinced that something else is going on. I've lost so much of my mobility and spend every day in severe pain. I'm not sure how to ask if I could still be affected by Lyme, and don't know where to start.

Hello! I'd highly recommend having that conversation with your doctors, especially if they're helping you manage Fibromyalgia as well. I would recommend calling it "Post Treatment Lyme Disease" instead of chronic because they tend to shut down at the word in my experience. If it were me I'd say something along the lines of "I've noticed a change in my symptoms since being treated for Lyme, and I'm wondering if I'm still getting post treatment symptoms that are affecting my Fibro". Definitely test the waters with your current doctors first, and if none of them are willing to even discuss it or run a test to see if you still have any active markers, it may be worth finding a LLMD (Lyme Literate Medical Doctor). 

It’s certainly possible that none of your symptoms are due to Lyme, but its a trickster and can look like a lot of other things and it’s important to consider! I'm going to link a bunch of resources I've compiled below, hopefully some will help you out! I know how overwhelming it can be, and feel free to ask me specific questions if you have them, I can help point you in the right direction or answer to the best of my ability based on my personal experience and research on the matter.

General Resources:

LymeDisease.org

International Lyme and Associated Diseases Society (ILADS)

LymeDiseaseAssociation.org

Canadian Lyme Disease Foundation

Bay Area Lyme Foundation

Envita: Chronic Lyme Disease Complex Treatment

LymeStats

Chronic Lyme Symptoms:

Lyme Disease.org - Symptoms list

Lyme Disease Association - Symptoms list + Chronic Lyme Symptoms list

Canadian Lyme Disease Foundation - Symptoms list

Healthline - Symptoms list

CDC - Symptoms list

Resources for finding LLMDs:

LymeDoc.org

Lymedisease.org

Podcasts:

Lyme Ninja Radio

Living with Lyme

Tick Boot Camp

Lyme Voice

Blooming With Lyme

Books:

“Why Can’t I Get Better?” by Dr. Richard Horowitz 

*“How Can I Get Better?” by Dr. Richard Horowitz 

*“Unlocking Lyme: Myths, Truths and Practical Solutions for Chronic Lyme Disease” by William Rawls MD

*“Healing Lyme: Natural healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsiosis” by Stephen Harrod Buhner

Lyme Disease Association Book List (link)

I also have a bunch of scholarly articles on the proof of chronic lyme, lyme testing methods, etc. but this answer it already fairly long--if that’s of interest I can link them in a reblog. But they’re definitely a lot, the stuff I’ve linked is a bit more beginner friendly when it comes to learning about lyme :)

[lymeprincess]

Why call it ‘Lyme Disease’?

“In the early 1970s a group of children and adults in Lyme, Connecticut, and the surrounding areas were suffering from some puzzling and debilitating health issues. Their symptoms included swollen knees, paralysis, skin rashes, headaches, and severe chronic fatigue.”

“These families were left undiagnosed and untreated for years... If it wasn’t for the persistence of two mothers from this group in Connecticut, Lyme disease might still be little-known even today. These patient advocates began to take notes, conduct their own research, and contact scientists.”

“Finally, by the mid-70s, researchers began describing the signs and symptoms of this new disease. They called it Lyme...”

(Source)

[heatherwitch]

What do you say about there being no actual proof that chronic Lyme disease exists and it is just a hoax of doctors to not deal with hypochondriac patients?

[X] [X] [X] [X] [X] [X] [X] [X] [X] [X] [X] [X] [X] [X] [X]

(source)

[heatherwitch]

For the UK, if you go camping and have issues with ticks then it's possible to get Lyme's disease that way! Had a huge amount of people get it after an event last autumn

Yep, ticks are one of the more common carriers of Lyme Disease. Not just in the US or UK, but most of the world. And you’re definitely more at-risk if you spend a lot of time outside (*cough* me *cough*) but they’ll also find their way inside on your indoor-outdoor pets or by catching a ride on your clothes.

Additionally, there’s been research recently and people are starting to believe that other insects can be carriers of Lyme Disease (like mosquitoes and fleas). I have yet to see a good source on that, but it makes sense and is definitely worth keeping in mind. 

[heatherwitch]

Hi Mouse, your posts abt Lyme disease got me curious and I decided to do a little research and honestly I'm fucking furious, (you probably know this but I wanna complain) apparently in the 90s there WAS a (effective) vaccine for Lyme disease, until a few ppl got scared and started claiming it caused arthritis with no evidence and it was pulled, and now more ppl have Lyme disease than ever. Can I get a 'fuck anti vaxxers' in this chillis tonight????

Oh yay! That was exactly my goal - I’d love for more people to start looking into Lyme and it’s current treatments with fresh and critical eyes. It feels like a battleground where both sides are very biased (I’m definitely biased because I feel AWFUL all the time and it feels like the world doesn’t believe me/want me to get better).

I’ll just leave this here [X]

Also, Lyme arthritis is a thing [X]

[heatherwitch]

If y’all want to learn more about Lyme Disease without doing hours of research and verifying sources, I’d highly recommend Lymestats.org! 

They also have sources to back everything up if you do want to read more. Of course, sources can have differing opinions but if nothing else, it gives you some starting points to form your personal opinions based on critical thinking on the matter!

[heatherwitch]

Hi! So, I’m a 15 year old witch with type one diabetes . I really appreciate that you spread unknown information about diseases through your posts(as far as I’ve seen)! I was wondering, if it’s ok, if i could ask how one would know if they had a case of Lyme disease like you? I have a constant headache that sometimes turns into migraines, frequent stomach aches, random joint pain and fatigue like you described in your Lyme story. I’m kinda scared that i have it, considering my bad immune system.

Hi! I do my best, I certainly talk about Lyme more because I have experience with it, but I try to share other posts about chronic illnesses :)

First of all, this is the story anon is referring to.

This post has a LOT of info about Lyme symptoms and the testing methods used to diagnose Lyme.

This site has some bite-sized stats about Lyme

These all have fairly accurate info on Lyme (there’s still a lot of unknowns so take everything with a grain of salt):

lymedisease.org

canlyme.com

envita.com

healthline’s page on it

NIH’s (chronic) lyme disease page

I also like these Lyme-specific Podcasts (I’m sure there’s more but I listen to those and some general chronic illness ones so I haven’t had time to explore!):

Lyme Ninja Radio

Living with Lyme

I’d recommend seeing someone who can at least run the two-tier test and check for some co-infections. Those are all blood tests. Lyme literate doctors can also be helpful, but may be expensive so start with the blood tests. (More info in the bolded link)

Lyme is considered “The Great Imitator” and can mimic/present as a lot of other diseases and illnesses. Because of that, it can be hard to be sure with symptoms, especially ones that can apply to many illnesses - especially the ones you mentioned. Sadly those are all pretty common in a LOT of illnesses. Kind of like a symptoms starter pack so-to-speak. (Again, more info in the bolded link with a more thorough symptoms list). It’s good to rule out the bigger, bad things but don’t forget to consider simpler explanations too! Luckily not everything is chronic :)

[lymeprincess]

[Image of woman at airport security, with a pile of medications in front of her. The security guard says “... Lyme disease huh?”] (Source)