lyme_disease - Profile (original) (raw)
Welcome to 
lyme_disease! We are a community focusing on education and support for those suffering from Lyme Disease, a multi-systematic bacterial infection caused by the bacteria Borrelia burgdorferi -- and/or its co-infections (i.e. ~ Ehrlichia, Bartonella, Rocky Mountain Spotted Fever, Mycoplasma, Babesia, STARI, Tularemia, Tick Paralysis, etc..).
Tick-Borne Infections (TBIs) are often called the "Great Imitators" because the diseases can mimic hundreds of other conditions, making a diagnosis very difficult. Some people go for months, even years, before a diagnosis is made. Some see over 30 doctors in-state, out, and sometimes out of their own country to seek an answer to what is going on with their health. The truth about Lyme disease and its co-infections is just starting to break loose in North America.
The bacteria of Lyme disease, a "Spirochete," is related to Syphilis ~ it is often called "stealth bacteria" because it can cover itself in a cyst, it can leave the blood stream, burrowing into tissues because it does not like oxygenated places.. in some forms the bacteria has no cell wall, making itself resistant to normal antibiotics. This and much more makes testing for Lyme, and treating it, a nightmare.
The longer the infection is left untreated -- the more difficult it is to treat, and especially live with. It can develop into a chronic condition ~ affecting the nervous system, brain, heart, joints and much more; Lyme is a multisystemic disease. Basically, given enough time the bacteria will go anywhere and everywhere it can, affecting numerous bodily systems.
The greatest help we've ever found, after years of living with Lyme disease and Co-Infections ourselves, is to talk with others who cope with the same troubles.
Anyone is welcome to join, even those who think they may have a Tick-Borne Infection but are not sure. Friends, family and caregivers of those who have Lyme are more than welcome to join -- if the interest comes up enough we may make a Lyme Caregiver Support Group. If you're interested in this, please contact 
willo.
It would be really nice if everyone would post an introduction so we can get to know you. Please remember to post all personal information under an entry locked to the group (when making a post to the group, make the 'security level' friends only).
We have very little in the way of rules, but we do ask that you:
1. Do not post doctors' names on this group, please see this entry for more details (must be member to view post)
2. Absolutely no soliciting of any kind
3. Respect everyone's choices of treatment - no flaming will be tolerated
4. Respect everyone's privacy; please do not share any personal posts without getting permission from the author
You can use the following as a starter to tell us about yourself --
Name?
Location? (country, region, or nearby city if you feel comfortable enough)
Age?
Do you need to be connected with a Lyme Literate Doctor (LLMD)?
Is Lyme a diagnosis or diathesis (diathesis = suspicion)?
Do you have any co-infections?
Was it a clinical diagnosis or a serological diagnosis?
If diagnosis, when?
What symptoms do you have?
Where (country/state/province/region) do you suspect the infection is from?
How long did it take to get a diagnosis since you were infected?
Did you have any blood work or other testing done to back up your diagnosis?
(if yes, which tests were performed and what were the results?)
Are you undergoing any current treatment?
(if yes, please describe)
How do you feel today?
What interests you outside of Lyme?
For Caregivers:
Name? Location?
Relation to person with Lyme disease? Age of patient? How long have you been their caregiver? Do you live with your patient or do you provide part-time care?
What particular difficulties/stresses do you face and how do you deal with them? How do you take care of your self so you can be your best in caring for someone else?
Have you researched Lyme & Co-Infections for your own edification? Has the person you care for done their own research?
What interests you outside of caregiving?
Disclaimer:
The materials and information in this community are intended to provide general information for its members. At no time is information on this board meant to be used to diagnose any medical conditions -- nor is it meant to sell, or endorse, any specific kinds of products, treatments, or services. Please consult your physician on specific medical questions; do not use the information given in this community as a substitute for a professional consultation.
All information on this board is provided without warranty of any kind. We do not warrant or guarantee the recommendations made in this community regarding the results in terms of accuracy, reliability, or otherwise. The administrators of this community shall not be held liable for any damages incurred as a result of statements made from within this board. This is a non profit, self-help, support and discussion group.
Further, the administration takes no responsibility for any lyme_disease member breaking the LiveJournal Terms of Service. This is including, but not limited to, posting, emailing, or otherwise transmitting any content that is unlawful, threatening, abusive, defamatory, obscene, libelous, or invasive of another's privacy.
***This is a safe space for those, of all walks of life, who need support with Lyme. This group welcomes people of all ethnicities, all religions or faiths, all sexualities and all lifestyles. Some members post very personal and intimate entries here, so please respect what you read -- do not flame another member nor use any hateful speech (homophobia, racism, sexism, ableism, etc..).
The Maintainers have the tools, and the full right, to ban a person from posting and/or commenting.. or to remove them from the community entirely if they do not follow common courtesy.
If anyone has any problems/concerns, or if you would like to discuss anything in private, feel free to message the maintainers privately. (This can be easily done by hovering your mouse over our LJ identities (below) and clicking on the link to send us a message.)
Any questions and/or comments are most welcome here. We look forward to getting to know you!