Do You Know Anyone with "Chronic" Lyme Disease?

Updated on June 17, 2013
Y.G. asks from Fort Lauderdale, FL
6 answers

After 3 longggggg years of being misdiagnosed, I was finally diagnosed 2 weeks ago with Chronic Lyme Disease. Just wanting to hear other people's stories :)
Chronic Lyme is NOTHING like acute Lyme (that's where you see the tick, get a bullseye and get on meds for a month, then your done with it).... Mine went undiagnosed for 3 years.
I was on an IV for 30 days, now I'm on supplements and antibiotics for a year. UGH!
I'm just happy to be finally diagnosed...Even though I know I have a LONG road ahead of me!
I have the neuro lyme. So it affects my brain and nerves, boo!
Doctors have thought: MS, Neuropathy, Meniere's Disease, Lupus, Epstein Barr, Anxiety, etc etc etc etc etc
It's SUCH a controversial disease to have!

What can I do next?

  • Add yourAnswer own comment
  • Ask your own question Add Question
  • Join the Mamapedia community Mamapedia
  • as inappropriate
  • this with your friends

So What Happened?

Thanks Everyone! The best part (besides getting diagnosed) is feeling validated!!!!! For SO long, I think doctors didn't know what to do with me. Some probably thought it was in my head or I just wanted attention (after tests kept coming back negative). I was definitely my own advocate. With this controversial disease, you HAVE to be!

Under Our Skin is a GREAT documentary about Chronic Lyme Disease.

Elana-It's been a long, frustrating, scary road. As I'm sure you remember. Yes, I'm seeing a LLMD in Jacksonville (4.5 hours away from me). There's only 3 good LLMD's in florida that treat "chronic" Lyme... I did the IV for a month, now I've been on my supplements/antibiotics for 2 weeks. Everyone said to allow 6 months until you see the light again...
I went from working out 5-6x's per week, SUPER active to being a hermit.

More Answers



answers from Denver on

My daughter went 4 years before being diagnosed with three forms of Lyme co-infectants. In those 4 years they thought she was having mild seizures, maybe a brain tumor, a psychiatric disease, thought she was making it all up, thought I was making it all up, had a rare tropical infection, maybe was on drugs, you name it. Most doctors recognized that she was truly ill and tried their best to help. A couple were ready to have me arrested for drugging her or lying to doctors.

Finally a Lyme specialist diagnosed it. It took a year and some of the strangest meds ever, but her psychiatric and rage symptoms were resolved.

She is still ill, but at least the most worrisome symptoms are gone. She had Babesia, Bartonella and Boriella.

Have you joined Lymenet? It's a good site. And make sure you learn the difference between ILADS and IDSA. You will need to be very familiar with those terms. They are both professional organizations comprised of physicians, researchers, etc., but hold very different opinions. ILADS (International Lyme and Associated Diseases Society) presumes there is chronic Lyme and it is within that group that you will find doctors that treat long-term and support the diagnoses of other symptoms besides the rash and a brief flu-like illness. IDSA (Infectious Disease Society of America) supports the idea that Lyme is a short-lived illness with no other complications or symptoms and does not support long-term antibiotic therapy. It is a contentious war and if you see a Lyme specialist or other doctor, you want to have done your research and know which organization he or she belongs to or supports.

We've been dealing with this for almost 8 years. Feel free to ask anything.

4 moms found this helpful


answers from New York on

yes - supposedly I have it but have very few symptoms. I went on oral antibiotics and they started to turn my teeth brown so I stopped and never started again. Too much hassel and I'm ok for now. Doctor thinks I have a very strong immune system. I'm thinking when my kids are older and I have more time to deal, I will address it again. But I know someone who was treated via antibiotics and feels 100% better. It is controversial and confusing. I've gone to 3 specialists and they all say I have it yet my regular doctor says no. Very confusing. But I've read a lot and you should feel much better! It's tough though. Not sure everyone totally recovers. Some people in my doctor's office looked pretty badly off. But my friend is much much better!

3 moms found this helpful


answers from San Francisco on

Congratulations on finally being diagnosed! That must feel great.

Wikipedia has a pretty good article on Lyme disease.

Scroll down to Chronic Lyme disease and post-Lyme syndrome.

Good luck.

3 moms found this helpful


answers from Boston on

My mom is going through this process now. She has felt unwell for 25 years despite being an RN and a health nut. We were raised on no sugar or artificial sweeteners, whole grain, natural peanut butter, carob instead of chocolate, organic foods, extra vitamin C, fish oil etc. Her medicine cabinet looks like a health food store, she subsribes to all kinds of newsletters and is really up on everything to do with nutrition and health. So for her to be unwell is really ironic, but she'd probably be much worse off if she weren't as into this as she is.

Anyway...she was diagnosed with chronic fatigue syndrome and fibromyalgia 15+ years ago and she thought that the trigger was a case of chemical pneumonia that she got after some flooring was installed in our house. A simple cold can wipe her out for several days and she has to plan activities carefully - for example, she went grocery shopping on Friday, was going out to dinner Saturday and we had a family event all day yesterday, so she decided to not go shoe shopping Saturday morning because that would have exhausted her, and she's resting today. Her thinking is very fuzzy and her short-term memory is non-existant. She trails off in mid-sentence and has to write everything down. She's 70 now but has been like this since her mid-40s (menopause and having 5 teenagers didn't help either).

Anyway...she goes to a holistic dentist who swears she has chronic Lyme. She doesn't want to go on long-term antibiotics but will if that's what it will take to finally be well. She is researching "Lyme friendly" doctors here because it is hard to find someone who believes that chronic Lyme disease is real, even where we live, which is like the epicenter of Lyme disease.

A friend and I were talking this morning about chronic Lyme, which she thinks she has, and she is seeing a doctor today to hopefully get some answers. For her the main symptoms are short-term memory loss, joint pain and fatigue.

Did insurance cover your IV antibiotics? What are you taking for supplements? Are you feeling better yet? I sincerely hope that your diagnosis is correct and that the treatment is effective. These weird immune diseases are so hard to sort out, and those affected tend to not have the energy to advocate for themselves very well. So frustrating! Best of luck to you!

3 moms found this helpful


answers from Washington DC on


CONGRATULATIONS on being diagnosed!! I bet it's a relief! Now what are they going to do for you?

I have a parent at my youngest son's school that it took her FIVE years and one visit to a psych ward to get her diagnosed. One doctor couldn't find anything wrong so he thought she was crazy!

best of luck to you!!!

2 moms found this helpful


answers from Seattle on

I'm so, so sorry to hear that you were undiagnosed for so long. Did you have a tick bite that became infected and you dismissed?

Hon, the only person I know, and knew well, was a guy I worked with, and he also went a few years undiagnosed, and he passed away. I know that is not what you want to hear, so perhaps the treatments are more successful now. That was about 20 years ago.

1 mom found this helpful
For Updates and Special Promotions
Follow Us

Related Questions