#aboutlyme

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)

“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...”

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

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.

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]

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)