Anyone with Lyme's Disease?

posted 2 years ago in Wellness
Post # 2
1481 posts
Bumble bee
  • Wedding: June 2018

Hi, chronic Lyme disease isn’t a real medical condition. Lyme disease is a bacterial infection that can be diagnosed by the presence of spirochetes or antibodies to them. It is treated with antibiotics. Someone who had Lyme disease can have long term problems from it if it was advanced disease and damaged their heart or other organs, but this is not chronic Lyme disease as the Internet bloggers describe it. I personally believe most people who claim to have chronic Lyme disease more likely have chronic pain syndromes and/or depression or other psychiatric conditions. There are many people who spend tens of thousands of dollars to travel to other countries to have unapproved experimental therapies, but I believe these to be schemes for people to make money off of people who believe they have no other options.

Post # 3
1360 posts
Bumble bee

My husband had lyme disease. It is possible for it to come up negative in tests if it is the early stages of getting it. If you’ve had it for years though, it would show in a test.

Post # 4
551 posts
Busy bee
  • Wedding: May 2015

futuremrss17 :  

I don’t have Lyme, but my mother contracted it two summers ago. She was having severe body aches and flu-like symptoms and bounced multiple times between a local clinic and a hospital. They thought the pain she was having was heart-related and so were testing her for issues related to that. Nothing they prescribed or recommended was helping, so she kept going back. The way she tells it the clinic likely thought she was drug-seeking and weren’t really taking her seriously…until she presented with Bell’s Palsy – at which point one of the doctors put two and two together and realized she had Lyme’s disease (about a month after she first went to the doctor). Who knows what would have happened if she and my dad hadn’t continued to press the doctors when they knew something was wrong.

I don’t think my mom went through any false negatives, so I can’t really help you there, but I mainly wanted to comment to say that sometimes you HAVE to advocate for yourself. Don’t let up on the doctor until they can give you an explanation for what’s happening to you.

Post # 6
40 posts

I got bit by a tick in Colorado (never saw or felt it) and noticed I had the bulls eye rash. Went to urgent care and took doxycycline and cefuroxime for about 6 weeks. While I don’t feel like I have chronic lyme (which I believe exists), I do get the occassional WTF feelings/moments that I never had before (extreme fatigue-like sleep for 15 hours and still feel comepletely exhausted, joint pain, inflammation, blurry vision, etc.) I just take extra vitamins/herbal supplements and try to eat clean and exercise since not even the Lyme test is reliable.

Post # 8
40 posts

futuremrss17 :  brain fog! How could I forget that!!! I still have moments where I’m in a complete haze…could be mid-thought, mid-sentence..

Did the antibiotics cure me? who really knows!? The dosages were so strong I would vomit at first and then my body finally stopped rejecting it. Perhaps they killed the majority of the bacteria but the after effects tell me there’s still something “off” in my body. Before the tick bite, I could run/bike/exercise on a daily basis and since then I need to add rest days in between what are now “hard” workouts to recuperate. I’m 35, not 60…

Another commenter wrote she didn’t believe chronic Lyme exists and I’m going to assume she’s never had Lyme, or if she did, the antibiotics worked well for her. As for me, I’ve read a lot of things and believe that the Lyme bacteria is able to hide and mask itself – whether it’s a small amount left in the body or a lot.

Changing my diet has helped a lot. I try to eat lots of organic veggies/proteins and “try” my best to stay away from junk/processed food. I don’t drink as much alcohol as I used to because I literally cannot stomach it or “hang” like I used to. 1-2 beers or a glass of wine are where I’m at, cannot handle liquor anymore… I take mushroom supplements everyday (Chaga, cordyceps, & reishi) and truly, those have helped a lot. I also make sure to have prebiotics and probiotics. 

Post # 9
472 posts
Helper bee
  • Wedding: October 2017

Have them draw blood for your R-factor and C-reactive protein. My doctor was convinced that I had Lyme, but it ended up being rheumatoid Arthritis. There’s a whole panel of tests they can do for autoimmune disorders. 

Post # 10
44 posts

I got bit by a tick when I was 17, we think at my mom’s wedding, and like two weeks later I had the “Most perfect” bullseye ever, had a fever, my entire body ached. We went to the doctor immediately and they took my blood. It was obvious I had it because of the rash, but my test came back positive. I was on antibiotics for 10 days and everything was fine. Lately, I’m always tired and my body hurts. I’ve always had headaches so that was never a factor of whether I had it or not.

My stepdad was never treated for it and I know he has a lot of joint pain that they thought was RA but his doctors found out through a blood test that he’s had it for years. 

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