Welcome Members!

Welcome to Lyme Disease Support Network Patients Community!

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Lyme disease, or Lyme borreliosis,is an emerging infectious disease caused by at least three species of bacteria belonging to the genus Borrelia. Borrelia burgdorferi sensu stricto is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii cause most European cases.

Lyme disease is the most common tick-borne disease in the Northern Hemisphere. Borrelia is transmitted to humans by the bite of infected ticks belonging to a few species of the genus Ixodes (“hard ticks”). Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema migrans (EM). Left untreated, later symptoms may involve the joints, heart, and central nervous system.

Many celebrities with Lyme Disease deal with the daily challenges of the disease as well.

You can learn more about Lyme Disease at Wikipedia.org.

This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But Lyme Disease Support Network is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.

Read More…

How is Ben’s Friends Different from Social Media and Other Support Sites?

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

 

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

 

Latest Discussions

  • Heads up! Happening soon
    by ModSupport on September 21, 2021

    Heads up! Happening soon … One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of https://forum.lymediseasesupportnetwork.org/ and there you’ll be … in a completely different place! Well, not completely different: the page on which you’ll find yourself will be the new landing page for this community. From there, you will simply have to click on […]

  • New Here struggling with third round of treatment
    by rstns on September 14, 2021

    Hi my name is Ruth & I have been battling various rounds of Lymes on and off for over 10 years. I used to work with the medical community integrative & alternative so am very aware of the variety of treatments. I made an account mostly just because I needed to not feel alone with this third round of treatment. I am struggling physically & emotionally & using all my tools. But I […]

  • Screen names – Ben’s Friends values your privacy
    by ModSupport on July 21, 2021

    Some of you may have noticed that your screen name now appears different. If you had your full name as your screen name, I changed it in order to better protect your privacy. If the shortened name is not to your liking, please private message me by clicking on the ModSupport icon and let me know what you would rather your name be, and I’ll change it. Sharon from ModSupport @trust_level_0 […]

  • How is a Ben’s Friends Community Different from Social Media and other Support Sites?
    by Bens_Friends on July 14, 2021

    Are you wondering how a Ben’s Friends community is different from social media and other support sites? The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and you and your struggles as a patient. We’re not interested in knowing your name or where you live. We won’t even allow you to use your real name when you register for one of our […]

  • Has anyone tried the LYME LASER? Is it a scam?
    by SUE14 on April 8, 2021

    Hi does anyone know anything about https://lymelaser.com/ . My SIL is interested in trying this. It doesn’t really make any sense to me. I am wondering if it is a scam? 2 posts – 2 participants Read full topic

  • BIG Covid Vaccine Questions
    by Bens_Friends on March 15, 2021

    New members arrive at Ben’s Friends with lots of questions, as well as a need for social support. That’s why we’re here. But these days the really big questions on peoples’ minds are about Covid vaccines. The advice we give here is friend-to-friend. It’s not evidence-based medical advice, even if many of us see ourselves as local experts in our own conditions. Opinions and advice about […]

  • Come to a Free Webinar!
    by Bens_Friends on March 8, 2021

    You’re invited to a free Webinar on March 10th Even though we don’t have a community for people whose lives have been impacted by Short Bowel Syndrome, we’re delighted that our Ben’s Friends Rare Diseases club at University of Toronto has invited us to join them at this event. Special guest at the Webinar will be Swapna Kakani, who is a vibrant and dynamic speaker. Swapna speaks not only […]

  • Come to a Free Webinar!
    by Bens_Friends on March 8, 2021

    You’re invited to a free Webinar on March 10th Even though we don’t have a community for people whose lives have been impacted by Short Bowel Syndrome, we’re delighted that our Ben’s Friends Rare Diseases club at University of Toronto has invited us to join them at this event. Special guest at the Webinar will be Swapna Kakani, who is a vibrant and dynamic speaker. Swapna speaks not only […]

  • Fwd: Ben’s has an APP for that!
    by Bens_Friends on January 28, 2021

    @trust_level_0 1 post – 1 participant Read full topic

  • Share your glimmer of light!
    by Bens_Friends on December 31, 2020

    Trying to forget 2020? Oh yes, same here. But DON’T forget that there were some good things that happened to us this year too! Let’s put our heads together and come up with a list of small but good things to make us smile as 2020 passes – thank goodness – into history. What was your small but good thing this year? Do tell! It will do everyone good to see some points of light! Sharon from […]