Welcome

Welcome! You're not alone.

If your family has been affected by Lyme Disease, or Post-treatment Lyme Disease Syndrome consider the Lyme Disease Support Network your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Lyme Disease Support Network is a patient-to-patient support for people with Lyme Disease.

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Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.

Tj1
GrumpyCat
Dancermom
Purplebutterfly

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, please.
  9. We welcome people of any faith and no faith, but we ask that you not evangelize or attempt to impose your belief system on other members.
  10. Check your politics at the door, please.

Thanks for your cooperation.

Clinical Trials

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What is Lyme Disease and Post-treatment Lyme Disease Syndrome?

Many of you have come here searching for answers. You made have read things on the internet or heard stories from friends about lyme, Igenex, western blot, ILADS, IDSA, and “lyme literate” doctors. We hope to demystify some of this for you, knowing that it can be quite difficult to sort out the hype from solid, authoritative information. We have no agenda other than to offer information and support to patients who are affected or have been affected with lyme disease. We recognize that some of you are very ill. We cannot and do not offer cures or magic bullets for chronic illnesses associated with lyme disease. Chances are that those of you who were infected with Lyme and experiencing chronic symptoms may have Post-treatment Lyme Disease Syndrome. The symptoms you experience may be alleviated somewhat by treatment, but damage to the immune system that you may have already experienced may not be reversible. Therefore, it is more a question of learning to cope with your "new normal". Chasing after illusive cures does not assist with this process.

To keep this a safe and responsible patient community, we ask that you observe this guideline:

Describe, not Prescribe.

What this means is while that you are welcome to share your own experience with treatments, you are not welcome to suggest a course of action to others. This is a virtual format, and we cannot know enough about a patient’s condition to either diagnose someone (“yes, you have lyme”) or recommend a course of treatment. And, of course, both of these are things that only MDs should do, not acquaintances on the Internet.

Additionally, we are prohibiting the use of the words “lyme literate doctor” on this community. These words have attained a sort of magical potency among internet support groups. However, the term “lyme literate doctor” is not what it sounds like. In many cases, the “doctor” is not an MD. And, furthermore, what is designated as “lyme literate” quite often turns out to be “lyme ignorant” and willfully blind to scientific evidence. Abandoning science for unproven, mythical theories of disease has detrimental consequences for patients. Think, for example, of the anti-vaccine movement, and the resulting recent outbreak of measles at Disneyland. Science matters for your health. Therefore, this community is unapologetically science-based and evidence-based. 

Lyme disease, or Lyme borreliosis, is an infectious disease caused by species of bacteria belonging to the genus Borrelia.

Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection.

MOBILE APP AND E-BOOK AVAILABLE!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Be inspired by the helpful tips and amazing stories of patients with rare diseases.  Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity


Moderator
dancermom posted a discussion

NIH Clinical study to help with lyme research

This might be a good one to look into if you would like to be part of the research effort for Lyme disease:…See More
yesterday

Moderator
dancermom replied to yabby02's discussion which labs for testing??
Friday

Moderator
dancermom replied to yabby02's discussion which labs for testing??
Friday

Moderator
tj1 replied to yabby02's discussion which labs for testing??
"Thats because the Igenex test aren't worth the paper they are printed on"
Thursday
yabby02 posted a discussion

which labs for testing??

I recently asked my doctor about getting tested for Lymes ... originally I was told they were going to use Igenex because they had a lot of trouble with the lab they previously used. I thought great; everything I've read says that Igenex is the best…See More
Wednesday

Moderator
Scott Orn left a comment for yabby02
"Big welcome Yabby02! One tip, if you have specific questions it's best to start a New Discussion and ask away. that makes it easier for others to find and respond to your questions."
Wednesday
Profile Iconcraigmowry and yabby02 joined Lyme Disease Support Network - Online Support Group
Tuesday
Auburnm added a discussion to the group MIndfulness and Relaxation
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3 Ways to Weather the Internal Storm of Chronic Pain and Not Let it Define You

3 Ways to Weather the Internal Storm of Chronic Pain and Not Let it Define YouFebruary 13, 2015 by See More
Tuesday
Auburnm added 14 discussions to the group MIndfulness and Relaxation
Mar 23
Auburnm posted a group
Thumbnail

MIndfulness and Relaxation

A group created to focus on the mind-body connection. Learn / discuss ways to relieve stress / pain such as simple meditation exercises, visualization, muscle relaxation, deep breathing.See More
Mar 23

Moderator
dancermom left a comment for 3musketeers
"Welcome, 3musketeers, to this supportive community. Feel free to open a discussion to introduce yourself or ask questions. Best wishes!"
Mar 23
Profile Icon3musketeers, Auburnm and Chickabe129 joined Lyme Disease Support Network - Online Support Group
Mar 23

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Blog Posts

Local Fundraiser for Ben's Friends

Posted by Scott Orn on March 22, 2015 at 11:29pm 0 Comments

I wanted to share some good news from a local fundraiser we did last night in San Francisco. Some friends of mine wanted to support Ben's Friends so they held a "bar night get together for Ben's Friends."

It was a big success as we…

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