Chronic Lyme Disease
Online support
Lyme Net medical board. This is a very nice support group on an activist/resource site. This board gives a lot of emotional support. You don't have to be an activist to use the support boards, all are welcome, including parents and caregivers. The site has a good listing of support groups. This is also good place to get a recommendation for a "Lyme Literate Doctor" (LLMD) and people on that board really care. The group is monitored and all ages. By skimming through the posts you can get a good idea of what people go through. There is a section that lists some of the local support groups & you can ask people here for more in your area. The site has 2 search engines, one for the board and one for the site. http://flash.lymenet.org The site has very some interesting archives.
Here's a wonderful supportive article for newly aware or newly diagnosed chronic lyme patients written by the lymenet poster Minoucat Lyme and everyday life — what changes?
http://www.ilads.org/ The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. (ie; medical professional's Support Group. If you can use this- please check it out.)
Robyn's list is a newsletter sort of thing. You sign up and are sent articles.
sci.med.diseases.lyme. This google support group (if you want to call it that) has excellent archives and a few very knowledgeable people contributing. There are also some neuro-lyme poster children here and the board can be contentious and sometimes it would probably be scarey if all these people were physically in the same room with you. (Go see for yourself!) But it is an excellent archival resource. Lots of abstracts and full text stuff posted which are retrievable through searching. It's not moderated so plan on spending time weeding through the insults, irrelevancies, home recipes for napalm and foul language. Some of it can be funny if you have a very sick sense of humor. There is a search engine at the top of the page- make sure you check "search sci lyme only" . http://groups.google.com/groups?hl=en&lr=&group=sci.med.diseases.lyme
Eurolyme is a yahoo group, you need to ask permission to join the group. Like the name says, it is for Lyme patients in Europe who have even less recognition by the medical industry than most people in the US.
Lyme_Warriors online support group for teenagers
For a full listing of local US and world wide local support groups see lymenet listings; http://www.lymenet.org/SupportGroups/ That is probabley the best place to list or find your group.
Support groups in northern California;
CaliforniaLyme Online support. CALDA orientated. Has helpful lyme people from around California. Moderated open group focused on lyme literacy and general support.
East Bay Lyme Support Group "Meetings are held on the 2nd Wednesday of each month. 7-9 pm at the San Ramon Regional Medical Center in the Blackhawk B. room. Our group practices democracy by having group decision, which means all members own the group and make the decision for the group. "
Marin County Lyme Disease Support Group The Marin County LDSG meets on the 4th (NOT the last) Wednesday of every month, and takes place in the Medical Library at Marin General Hospital, on Sir Francis Drake Blvd. in Greenbrae (which is located between Corte Madera and San Rafael). 7 pm - 9 pm. wheelchair accessible
Mid-Peninsula LDSG South of San Francisco (San Jose Area) emails Karen , Aaron. The MPLDSG meets on the second Tuesday of every month from 6-8 pm in Room D at the El Camino Hospital in Mt. View at 2500 Grant Road. Call 1-800-216-5556 to find out more about the group from the hospital
San Jose NorCaLymers online group. I beleive is open to other northern Ca.
San Francisco LDSG "We finally have a monthly support meeting -- for those who would best be served by meeting in SF. Please call us and we'll gladly share details with you about our venues, as the locations will be variable over the next months. See you there, hopefully! " [Hmmm... seems to be run by the same folks as the Marin group. Contact the Marin group for more info. I don't want to post personal phone #s here]
Santa Cruz County Ca Tick-Borne Disease Support Group Is no longer online it seems. Here is from the SC sentinel newspaper- "SANTA CRUZ LYME DISEASE SUPPORT GROUP: Open meeting for people with Lyme disease or other tick borne infections and those who are interested in learning more about these diseases and how best to support and understand the needs and challenges facing those living with these infections. Meets 7-9 p.m. on the fourth Thursday of the month. Unitarian Universalist Fellowship, 6401 Freedom Blvd., Aptos. Call Sarah at 662-3628. " [Be sure to call as meeting times and places may change. I know they do still have meetings- if this info isn't current, ask around.]
Sierra Foothill Lyme Support, Grass Valley, contact emails; Peg Leonard, Meg Hughes . Monthly meetings.
Sonoma County, Ca support group Online support. Very knowledgable, helpful and friendly. 2 moderators. I don't live in Sonoma co but I'm part of this group and love it.
Individual online support people in northern California;
Humboldt Co. North Coast Lyme Disease Support Group, Jentrie Anders PHD Anthropology . email is on web site.
Southern Humboldt/Northern Mendocino area, me, email caat . I don't have a lot of energy sometimes as you can probley understand, so sometimes may not write back right away.
Lake County Ca; Wilder network world orientated. Ziggy will answer questions, email is on website. Very large website.
Shasta County Lyme Support, Redding, Tiffney Ottoboni, email " Right now we don't have a support group yet. I am working on it. I am a patient and have been acting as a referral source for patients who need Lyme literate Doctors. "
Trinity County Lyme Disease Network, Weaverville, Nancy Brown, email.