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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.

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

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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.

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Tj1
GrumpyCat
Dancermom
Purplebutterfly

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Specific doctor or hospital names in a positive context are welcome.
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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.

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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

tjb076 posted a blog post

Great Explanation of What its like for non-Lymies?

Hi there everyone:Hope you are all getting at least a bit better each day.I am trying to find a post someone copied to this forum several months ago.It was the best explanation of lyme for someone who 'doesn't get it' I had ever seen. Unfortunately,…See More
Thursday

Moderator
dancermom left a comment for chula
"Welcome, chula, to this supportive community. Feel free to post a discussion to introduce yourself or ask questions. Best wishes!"
Feb 24
chula is now a member of Lyme Disease Support Network - Online Support Group
Feb 24
Limesucks replied to mdh111688's discussion Residential Psychiatric Treatment & Lyme Disease
"Hi Megan: Sorry to hear of your Psychiatric issues :(  What do you suffer from? Julie "
Feb 21
mdh111688 posted a discussion

Residential Psychiatric Treatment & Lyme Disease

Hi Guys,So, I have been having a lot of Neurologic & Psychiatric issues due to the Lyme, Bartonella, and Babesia (bad genetics sure don't help) and am needing to do residential psychiatric treatment somewhere that hopefully has experience…See More
Feb 20

Moderator
GrumpyCat replied to Foggy's discussion New member who is suffering physically and thus emotionally
"Hi, Foggy. Just reading your very interesting discussion and we wondering how your appt with the ID doc went?"
Feb 20

Moderator
GrumpyCat replied to Purplebutterfly's discussion Hello
"Welcome! It's good to see you here, Butterfly! "
Feb 20

Moderator
GrumpyCat and Purplebutterfly are now friends
Feb 20

Moderator
Purplebutterfly replied to tj1's discussion Lyme Spirochete Cysts and "bursting them"
"Thank You tj. "
Feb 19

Moderator
tj1's 3 discussions were featured
Feb 19

Moderator
tj1 posted discussions
Feb 19

Moderator
dancermom replied to tj1's discussion Lyme Spirochete Cysts and "bursting them"
"Thanks for this clarification, tj. It is important information."
Feb 19

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Blog Posts

Great Explanation of What its like for non-Lymies?

Posted by tjb076 on February 27, 2015 at 6:58am 0 Comments

Hi there everyone:

Hope you are all getting at least a bit better each day.

I am trying to find a post someone copied to this forum several months ago.

It was the best explanation of lyme for someone who 'doesn't get…

Continue

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