I want to hear your stories

If anyone wouldn't mind sharing. How and when you got sick how you got diagnosed what your symptoms are. I'd like to hear about your treatment and what worked for you. I'd like to hear about how long it took to start feeling better again and when you knew it was safe to actually start living again. Anything you would like to share with me would be blessing :)

I was bitten in 1984 when I was in my twenties. The symptoms were mild and rotated pretty quickly, so I just thought they were part of growing up. I had irritability, fatigue, joint aches and insomnia.

Come 1990, the fatigue was becoming a problem. I persuaded my doctor to give me 2 weeks of doxycycline. It helped and I did the same again the next year. I never had a positive Lyme test.
I just lived with the symptoms that continued over the years.

ThenI was bitten again in 2007. Things were getting worse, particularly the psychological effects. 2008 I went to the doctor with extreme depression and malaise and the standard Lyme test came back positive and I started treatment. Further testing and treatment revealed I had Ehrlichia and Babesia.

I have been treated with a variety of oral antibiotics and herbal treatments. My doctor believes in a "low and slow" approach that keeps chasing the bacteria out of its hiding places.

In 2010 I briefly went off antibiotics, it looked like I was well. But I got bitten again and my symptoms came back with a vengeance; I probably wasn't fully well when I stopped medication.

I am now 99% well and am trying to get fully well before going off medications.

I've had symptoms for 6 yrs, severe panic attacks, fatigue, weakness, brain fog, memory problems, hair loss. I was told I had anxiety disorder and placed on numerous psych drugs over the years. Later, my diagnosis became CFS.

I just knew my problems were medical! After seeing 13 docs, I finally found a dr who ran the IGenex test. The results showed several bands pos and several IND. I was directed to ILads and found a LLMD and had my first appt 3 weeks ago. I was started on minocycline and malarone. I have my follow up next week and hope to start more meds as I have not improved yet. I haven't herxed yet either.

I never had a tick bite, rash, or fever. I was completely healthy, and woke up one morning 6 yrs ago with the panic attacks. Have been sick since.

Wow utahgirl that describes me i have all the same symptoms as you i feel crazy never felt like this in my life i have been sick since 2011 still cant get a diagnosis just saw a new dr hoping he helps if not on to the next until i find one that cares and helps . Fatigue,depression,foggy headed,anxiety is the worst sytmptom oh and my memory is terrible ,muscle aches,stiff neck and legs feel 90 to young to feel like this god bless i want my life back just venting jennifer

Girlie, I'm in Saskatchewan, I remember talking with someone from Ontario that travelled to NY state for treatment, but can't remember who that was either, haha! My memory is so bad, if I don't write everything down....well, you know how it is!

I may have communicated with you...via email? maybe not...lol

I am from BC, and see a LLND in Richmond (outside of Vancouver) and I may have recommended him...if you could't find someone closer.

How are you doing?

Girlie, I haven't come across too many lymies from Saskatchewan, I wonder why that is?

I have no idea when I was bitten and didn't have a rash that I know of. I started getting very tired about 3 years ago.

In May 2012 I started to collapse all over the place. I went to Emergency several times but no one knew what was going on and they just sent me home. I was fatigued, extremely weak, had migraines, couldn't sleep, and was dizzy.

After that I was sent for many medical tests - for seizures, heart, you name it. I was told I had silent migraines. I was then told I had anxiety. After that I was told it was menopause, and after that I was told it was Chronic Fatigue Syndrome.

Meanwhile my symptoms continued to get worse and I was now experiencing muscle, bone, and joint pain, which I did not have before.

I ended up getting tested by Igenix on the advice of someone else who has LD. My test came back IND. I started treating for Babesia right away as that was my biggest problem according to my doctor.

Several months later I got re-tested and the test came back positive for Lyme, Babesia, Bartonella, and Ehrlichia. about 6 months into treatment (herbal) I started to notice some improvement. After being in treatment for 1 year I am feeling about 40% better. Still a ways to go but things are looking up!

girlie - you live in Canada? I visited there a few months ago and went to that national park...are ticks a problem there?

Well, leapyear - if you listen to the CDC - the ticks with lyme stop at the U.S. border - ridiculous.
Yes, they are a problem - I think they were first in Ontario, and perhaps next in my province of B.C. But I know they are in most, if not all provinces now.

If you listen to the CDC - the ticks with lyme also stop at the Provincial borders.

I live on Vancouver Island, (BC) and when I tell people about lyme disease - they know nothing about it...most of them say the same thing,"Lyme disease - where would you have gotten that???".
Uhh - in my back yard, perhaps?

I saw a map that Health Canada published and Vancouver Island was an "endemic" region for lyme disease....but none of the Dr's are being trained on diagnosing/treating, etc.

Vancouver island is full of forests...and they say when you clear the forests and build houses,and other structures... and kick out the hosts (deer/mice, etc.) the ticks find new hosts.

Leapyear - which park - we have several - Banff National Park in Alberta?

Tick borne diseases are world wide. The birds carry them and I think Canadas biggest problem if the mice?

I've been shrugged off by specialists (orthopedists, neurologists, rheumatologists, gastroenterologists) for so long and been told "it is CFS" or "it's in your head" or "you have depression" that I honestly don't know when things started. Thing is, I'm not depressed - and I'd tell them that! I'm frustrated. I'm tired of being tired. But I'm not depressed. So I rejected those diagnoses and only recently have felt the delight of finally having a real diagnosis and a real target. Having been to so many doctors and spent so much money to never feel better leaves me skeptical, but I have my first appointment with an LLMD (for which I have been waiting 2 months now) in 3 days....so I am excited and hold some hope for this!

Best I can tell, about 10 years ago I had some hip and shin problems while running. The hips hurt at night and the shins during running. Ortho told me that I had shin splints, but having played sports for years I knew it was not that. I just kept running and kept hurting....and the hip pain began waking me up at night. MRI's, x-rays, etc all showed "there's no reason for you to have hip pain." So, I just learned to adjust to a lack of energy and sleep. Kept running.

I wish I knew then what I know now. Over the past 10 years my symptoms have progressed and many more have been added: insomnia, anxiety (only at night - prob related to never sleeping), fatigue no matter how much sleep I get, brain fog, trouble word-finding, etc. I have had 3 hernias in my abdomen and a horribly herniated disc in my neck. I had to quit running about 5 years ago due to such severe plantar fasciitis that I was unable to walk around for 10-15 minutes in the mornings. I've had headaches and stiff neck every day for over 2 years. I get random muscle and joint aches, unexplained tooth and jaw pain that comes and goes, tinnitus, ocular migraines (my vision looks like a kaleidoscope) that come and go. I get the pounding chest (but blood pressure is normal) often without exertion. I have quite a few Gi issues that were chalked up as "IBS". I have frequent limb numbness and tingling.

I have no recollection of a tick bite, but my wife has, over the past couple years, begun showing some of these symptoms. As I understand it, though, she could have given it to me or vice versa. We never put this together until we had a friend that recently walked this path where her whole family has Lyme. She recommended Igenex (I have tested negative twice by other labs) and it came back positive. I know that God has gone before and behind me the whole way and that it is not by accident that our friend insisted that I get an Igenex test (because I thought, "I've already been tested for that"). She looked me straight in the face and said, "this is going to sound weird....but you have lyme".

So, there it is. Hopefully beginning in 3 days the story changes to include many victories, lots of symptoms being dissolved, and a story of hope for me, my wife (and potentially my kids too), and for others! I have certainly gained some hope from reading some of your stories of victory and avenues/methods for healing and restoration.

I went upstate to Dutchess county in October 2013 on a hike up Beacon Mt. with my family (have 3 kids who were 3,8,10 at the time.) We all ended up with lyme disease! The story of my kids is long separate from this one, so if you are curious, I will fill you in another time. my husband also tested positive, but with no symptoms.

anyway, a few weeks after the hike, (in November), I had a pimple in my pelvic region - didn't know what the heck it was and didn't make the connection that it was a tick bite at the time, bc there was no rash. Ok, so that same month I had suffered from the worst anxiety of my life as well as insomnia. Thought I was going loco. Then right after Thanksgiving I got a sinus infection. Took augmentin, and it went away. But then I came down with cystitis which lasted 5 weeks. I was going crazy - ran to the urologist, ran to the ObGYN - had ultrasounds, numerous negative urine cultures, the works. now I know that all came from the lyme (not a very common symptom, but it can occur). I then decided to decrease my sugar intake on my own and take some D mannose. That plan was working, until I got a sinus infection again and conjunctivitis. took my favorite augmentin again. 2 days later, it all came back and stronger - I had a complete body ache and my knees were killing me. Went to my primary care - and he diagnosed me with fibromyalgia. I didn't buy that for a second. he prescribed nortriptyline but I didn't take it. I was very suspicious, because I had a lowgrade fever - that was telling me that something was not right. Then ontop of the joint pain, I started getting migrating pains, severe nerve pain, then myalgia, then muscle weakness, and twitches. I got SO sick. I was so nauseous ontop of it all and I lost 6 lbs in one week. then the tingling and numbness started in my fingers and toes and that's when my husband and parents mentioned lyme. I did my research and sure enough every single symptom matched up. So then I went back to look at the calendar, and realized that the pimple was a tick bite, and the cystitis and insomnia and everything was from Lyme. Got the bloodwork done at quest. ELISA was negative. Ran back to the dr - but he didn't believe me. Went to another DR and he diagnosed me with post viral syndrome. I was furious. So on Feb 8th 2014 (about 4 months after the biteI went to a first med clinic, and got the dr to write me an rx for doxycycline (just bc I wanted it to be legit). she didn't order enough, so I helped myself to what I needed until I saw my LLMD (I am a pharmacist). My LLMD clinically diagnosed me with Lyme and Bartonella and I treated with antibiotics and herbals and nutritionals from feb 8the until sept 19. Sept 19th I took my last antibiotic dose and I am only on herbs and nutritionals. I am 95% better. I can go on and on! But this is how it all happened!