Many of you are already aware that there are people out there that claim to have cures for rare diseases, not just Lyme disease or Post Treatment Lyme Disease Syndrome (aka PTLDS), but many chronic illnesses that are associated with chronic pain and discomfort. We have a lot of really bright people on this board, but there are times when we feel bad that we may fall into despair and be easily susceptible to cons. I am writing because I want each of you to be well informed and think critically about anything that sounds too good to be true or that conflicts with information that you know to be true.
How do you protect yourself from scams? The moderators on this site try very hard to screen each person who applies for membership to our page, however, even with our diligence; people who are intent on taking advantage of us manage to slip through.
Here are some tips to help you protect yourself:
1. Beware of new members that message you privately about alternative treatments for Lyme Disease and PTLDS. These treatments can include special diets, supplements, tests, and are usually alternative treatments. This means that they are not covered by insurance and the cost comes directly out of your pocket.
2. Anyone that guarantees a cure is lying. Even the most skilled surgeons in the world will not guarantee that a procedure will be 100% effective.
3. Never give any personal identifying information to anyone online. This includes demographic information such as name, location, phone numbers, email, names of family members, etc., and of course NEVER provide any account numbers.
4. Always do your research. Look up doctors’ names, check with the state medical board where they practice, verify credentials, and make sure that they are “Board Certified” in their particular field. Another thing that I always do is look up the doc’s name plus a negative. For instance, I will enter “Dr. Barney Fife, complaints, bad, con” into the search bar. If you simply search the doc’s name, all you will find is what the practitioner pays the ISP to provide. Also, look up supplements and diets, find the costs, and also try to search them on reputable medical sites like the NIH or Mayo Clinic.
5. Always be cautious of someone that recommends giving up the treatments that your physician team has prescribed or uses scare tactics to get you to turn away from the program that your docs have prescribed. Predators will use words like toxic, chemicals, death and will give you misinformation about your medications in order to frighten you. Always verify anything that conflicts with what you know to be true.
6. If it sounds too good to be true, it probably is. Use your common sense. Even when you’re in pain or feeling low, be smart and cautious. If you are ever concerned, or have been messaged by a member in a way that makes you suspicious, let us know. We want everyone to have a safe and secure home here at LwLD