I'm still new, just getting test results back. And I'm still in the mode of trying to keep everyone informed. But things are changing every day and people are not understanding. I'm withdrawing and am way more comfortable with only my one or two support people but I feel obligated to answer to the others, whose intections are good, but questions and "advice" are just overwhelming and exhausting. How do you deal with people who just don't get it?
Hi Lenabubble, I truly don't have a answer for you. But I can say, many of us with Lyme and or co-infections go thru what you are experiencing. I think you finding this place to talk with people that have what you possibly have is the place to vent. You might also find a lyme support group in your area, where you can hook up with people you can share a cup of coffee with.
I was chewed up and spit out like many others from doctors and told I had this or that. So trying to tell people that were close to me about it, it confused them I think and they backed off. Many of them never came back. They tend to believe we are nuts and trying to get attention.
If you know you have lyme or co-infections it might be good for you to get literature off the internet and let them read what it does to you. There is also the documentary "Under Our Skin" that might help people to understand a little. Basically though, I think no one will truly understand unless they have or are going through it.
I also after eons of years of trying to get people to understand just stopped talking about it. AND I definatley stopped talking to doctors about my illness unless it is the doctor that is treating me. I got to many telling me that it wasn't lyme. But I needed a antidepressant...
You might also look for a counselor that will listen to you. Someone that will just let you vent. They are hard to find, but that might be worth a shot.
Stick around, if you have questions were all here to give our opinions...
What type of test did you have done? Also if it comes back negative that does not mean you don't have lyme or any co-infection. Are you seeing a Lyme Literate Medical Doctor??
Hope you find your answers soon!
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I had a positive lyme test in april but didnt get an actual LLMD until December. He is testing for co-infections and ordered an MRI of my brain. Those tests I should hear results from next week. The result I got back on Friday was for celiac disease.
I did watch Under Our Skin with my best friend who is my primary support. She moved in with me to help me through everything because we're both single. She'a great with adjusting quickly and keeping life normal but accomodating whenever i need it.
The problem I'm running into is with family and other friends, who all mean well but who flood me with questions and concerns and turn it around on me to where i'm trying to make them feel better about the situation. I feel like this time i get to be selfish and not have to answer to the others and coddle them to where they're less worried.
It's exhausting dealing with other people and I wish people would just roll with the punches and accept things for what they are like i'm forced to do.
I just spent the afternoon being told by my aunt that when the dr calls next week and gives me the pills i'll be back to normal and when i tried to explain about herxing i was told that i'm being negative and thinking about the worst and that the worst never really happens. I dont have the energy to explain it and even if i did, she's just going to tell me that i'm wrong. And these are the convos that happen with close family members who are supposed to be my support system.
I dont know how to talk to them about what's going on. I suggested they watch Under Our Skin but was just told that it sounds too depressing...
Hi again Lenabubble!
I think that what you're experiencing is, sadly, quite common! Trust yourself, because YOU know what you are experiencing better than anyone else! I agree with JoJo about finding people that you can trust to vent to, who truly care about you and support you! I also think that sometimes, with some people, less is more. If you feel like you are having to defend your true symptoms to someone, and convince them that what you're experiencing is real (not in your head), that the road to recovery may take awhile, etc. etc., you are probably best to change the subject with those people and consider that they might not be able to understand. This is sad, but is something I'm experiencing as well. Lyme is not well understood by the general public, and I admit that I didn't know beans about it until I got it! Try to forgive those who don't understand, and focus your energy toward your recovery. Lean on those who DO understand and believe you, who are supporting your journey! Remember that everyone's journey thru lyme/coinfections is different, and there isn't just one"right way" to treat it. Do you have a good LLMD now? Has he/she given you a final diagnosis of lyme? Jojo is right that a negative lyme test doesn't necessarily mean you don't have lyme. It is sneaky and elusive stuff. Lyme is most of all a clinical diagnosis! All your symptoms and the history of your illness are just as important, if not moreso, than the lab tests for lyme. I hope you have a good LLMD! Take each day a day at a time. Stay plugged in to a good support system! They will help you get thru the tough times! God Bless lenabubble...:-) Prairiemom
Thank you for your reply! Sorry it took so long for me to get back to you, I started treatment last week and had a very rough initial period. I found a great solution to nausea from the abx though. Himalayan Salt. 1/8 tsp before and after every meal. Makes the pills much more tolerable. I have a great LLMD and finally got all of my results back. I had a positive lyme test in April 2011 and and just got the LLMD in December 2011. I just got my test results back and I have Bartonella and latent Rocky Mountain Spotted Fever. I'm having a ton of neurological issues. It's a surprise every few days...
I feel my circle of supports deteriorating. I'm weeding them out to the ones who actually ask about me and how I'm doing. I don't have the energy to put forth if they don't express that they care. I know that may sound harsh and cold but that's just how I've become. And there are wonderful people around me who actually do care and those are the ones who I am retaining.
Lena, it is a very very tough road. When we have chronic illnesses that no one can see
It has taken me years to let people back into my life. And I still have many walls up. I am very leary of people. I, know how they "can" be.
I do think people get tired of asking us to do things, and we say no, or we are telling them about all the 100 symptoms we have.
Unless they have been though it, they just won't get it.
Many of us lymies, chronic fatigue, people go through this stuff.
It sure is a real eye opener thats for sure. And takes alot of reaching deep insided of us to forgive. We have to try and understand as much as we can that there is just no making others understand.
Glad you got some answers. You are on the road to better health.
Find lyme groups either internet or in person to join. Many of them out there now days.
Sending you good energy and hope today is pain free...