Post # 1
Just wondering if any of yall have been diagnosed with Lyme or Chronic Lyme?
For years now I’ve had tons of unexplainable symptoms and I have kinda just learned how to deal with them because all of my blood work normally comes back normal, other than every once in awhile being low in vitamin D. There’s a girl from my hometown who has recently been diagnosed with Chronic Lyme and is trying to raise funds for her treatments. She’s very adamant about spreading awareness of Lyme disease because she said it was so difficult for her to get a positive test, and that by the time she had a positive diagnosis her Lyme was so advanced that it’s affected her whole body drastically. Reading her story is really sad and I wish I could do more to help her.
Anyways, she’s always posting stories of people she’s met online with Lyme – how they were diagnosed and what their symptoms were that caused them to get checked in the first place. I guess it’s pretty common to be tested for Lyme and get a negative result even if you really do have Lyme? It seems like every person’s story that she’s shared has said they had multiple false negatives before having a positive test (a different type of test I think?).
My doctor had me get tested for Lyme a few years ago, because I had bells palsy and Lyme is one of the biggest known causes of it. My test was negative, but everything she’s shared has made me wonder if all of the symptoms I’ve had for years could actually be Lyme. Earlier today this girl posted a list of symptoms of Lyme, and I have experienced well over half (closer to 2/3) of them at one point or another in the past year to 2 years
I dunno, I’m probably being a hypochondriac, but if there’s a chance this could be the root of all of the health issues I’ve been having, I guess it’s worth looking into. Please share your story if you’ve been diagnosed with Lyme.
Post # 2
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
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
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 # 5
ela0919 : Do you remember if she had any other symptoms other than the body aches and flu like symptoms?
I had a few symptoms before I ended up with Bells Palsy – but that was the first thing that ever made my doctor question Lyme (I didnt even know what Bells was before I had it). Most of the symptoms I’ve had have been more noticeable in the time since I had Bells, which was almost exactly 3 years ago.
I know hardly anything about Lyme, but I’ve been following this girl’s story (I graduated with her brother and they are a very nice family). I was just shocked at how many of the symptoms of Lyme I’ve experienced in the last 3 years.
Post # 6
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 # 7
mrscbb82 : I hope the antibiotics cured your Lyme disease?
The extreme fatigue is one of the biggest things I’ve struggled with over the last few years. I’m always tired, no matter how much sleep I get. I also get constant headaches, occasional blurry vision, joint pain that I never had before, awful anxiety and panic attacks, weird feelings of paranoia that last for days with no explanation, stiff neck and back pain, jaw issues, awful brain fog, and tinnitus..all of which I’ve heard can be Lyme symptoms. I hadn’t given it much though since I had the negative test result a few years ago when I had bells palsy.. but after reading up on it more it has me wondering.
Post # 8
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
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
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.
Post # 11
mrscbb82 : I’m right there with ya on the whole thing with people not believing in Chronic Lyme. I don’t know much about it.. but I do know this girl’s family and I know how much she’s been through in her life… so I know if she wasn’t truly very sick, she would NOT be asking for support from others. She was also in school to be a PA when she got really sick which caused her to have to drop out for the semester and she just talks about how she wants to get better so she can finish her schooling and really help people. I didn’t respond to the pervious persons comment about it, because I don’t want this thread turned into a discussion about if chronic lyme is a real thing. Both of my friends that are in the medical field (MD and PA) seem to be in full support that chronic lyme is a real disease and is under diagnosed and something that the CDC needs to back more than they do. Thanks for sharing your personal story!
MrsCoffeeSnob : Thank you for the tip. I need to get blood work done for insurance in the next month and I’m going to ask the doctor to test me for some additional things this time. I will add that to my list.
skaterbee : One of my best friend’s dads also had lyme for years and years before he had a diagnosis, and I believe they were treating him for RA when they found out it was really Lyme. It almost killed him as it’d gotten to the point of affecting his heart. They said he’d probably had it for 10+ years without knowing it.