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Old 01-04-2015, 02:57 PM
Location: NJ/SC
4,286 posts, read 13,397,236 times
Reputation: 2593


Just searched on CD the word "Lyme" because I was curious if others have been talking about it. Found out there are lots of threads and conversations but unfortunately more incorrect info...

One person said something like - if the CDC said its not a threat in the south then its the truth. Well hate to burst anyone's bubble but the CDC puts out a lot of incorrect info..but I understand people want to believe and trust them or someone. I also understand unless going through something a person wouldn't have learned the CDC puts out wrong guidelines on many things. Only mentioning this because it saddens me people believe everything they are told and then end up suffering because of it.

Another person made a comment to me in a thread - if I cant find good dr care in my area then just go to another area. I'm truly happy to hear people are completely unaware of the fact that is not possible for everyone. This means they are not in a terrible situation in a state where no one can treat them for an illness. Or that they have spent thousands already and its very expensive to go to another state. Or that some drs dont treat out of state patients. Or that when you are bedridden you cant even shower most of the time let alone go to another state. I can go on but mentioning this because please dont make assumptions and judgments about people. Of course most people do, especially to strangers on the internet but please if you know someone with chronic illness, they need your help and support.

I belong to many support groups for health problems I have and the number one issue is lack of support by family and friends. I am lucky, I do have some great friends. Not really family but friends have been there during an illness that has taken everything from me.

If anyone suspects they have Lyme or coinfections, please seek a Lyme Literate dr before you waste precious time and money on a bunch that are clueless. Most people with Lyme are misdiagnosed. I got so upset last August because in one week 3 people close to me found out they were misdiagnosed and all ended up with Lyme. They have been through hell ever since but it made me start an awareness campaign called Be Kind for Lyme. Its on all social media. I am not in good shape but I still always offer help where I can. Anyone diagnosed with Lyme or thinks they may have it and wants more info...you can Google the campaign and ask questions there. Also, there are several web sites lymedisease.org and ilads are good ones. I have no affiliation other than having Lyme but they are good resources. If your primary care dr sends you to a ID dr, thats Infectious Disease, then more than likely they will misdiagnose you. I've seen it literally hundreds of times.
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