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.

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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

Tarawoman posted a status
"Kia Ora, thanks it is nice to be involved with you all."
yesterday
Tarawoman and dancermom are now friends
yesterday

Moderator
dancermom left a comment for Tarawoman
"Welcome, Tarawoman, and thank you for volunteering."
yesterday

Moderator
GrumpyCat left a comment for Angelic
"Welcome! So glad you found us. :-)"
yesterday

Moderator
dancermom left a comment for Angelic
"Welcome, Angelic, to this supportive community. Feel free to open a discussion to introduce yourself or ask questions. Best wishes!"
Monday
Angelic is now a member of Lyme Disease Support Network - Online Support Group
Monday

Moderator
GrumpyCat replied to Allergic's discussion ELECTRIC SENSITIVITY CAUSING YOUR SYMPTOMS?
"Steven Magee makes his living on electromagnetic sensitivity. The more they find and publicize, the more money he makes. You can post as many of these unverified studies and sites as you wish, just as I can find a number of sites with publicationa…"
Sunday

Moderator
tj1 replied to Allergic's discussion ELECTRIC SENSITIVITY CAUSING YOUR SYMPTOMS?
"I'm thinking if computers and wi-fi are a problem., maybe you should avoid them or cut back on the number of sites you are posting on.........."
Sunday

Moderator
GrumpyCat replied to Allergic's discussion ELECTRIC SENSITIVITY CAUSING YOUR SYMPTOMS?
"There are a number of sources on this topic of electromagnetic sensitivity. Most sources are completely unverifiable. I can find little information on Steven Magee, the author mentioned above. However, I was able to find a few articles that…"
Sunday

Moderator
tj1 replied to Chris's discussion Does any of these symptoms seem to lymes
"The Igenex test is western blot done exactly the same way, with the same methodology. They do additional bands which are not recognized as being Lyme specific. I hestitate to point out that your Doctor is probably correct and your understanding of…"
May 1
Chris replied to Chris's discussion Does any of these symptoms seem to lymes
"Hi Robb thanks for taking time to reply I have read some stuff regarding ignex can I still have test done there even tho am in Scotland I checked to see if they had lab here which they don't I have had the ELISA test which came back negitive I…"
May 1
Robb conner replied to Chris's discussion Does any of these symptoms seem to lymes
"Chris if you can get a blood test from igenex the test at Dr's office won't b very a curate maybe 50/50 that's part of the problem ,they know the western blot is bs but here in the states that's the first test good luck I have…"
May 1

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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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