I'M NEW AND I'D LIKE TO SHARE MY STORY, AND COMPARE

Hi everyone, I'm happy that I have finally found a forum that seems to be quite active. I wanted to share my story, and experiences, and compare them with people suffering from the same symptoms and figure out what works and figure out if I TRULY do have chronic lyme by comparing with others.

about 2 summers ago, I started having really bad heart palpitations and while it worried me, I figured it was just the amount of caffeine I drank each day. These palpitations are the worst, they wouldn't just last 5 minutes and go away...these lasted ALL DAY LONG, EVERY SINGLE DAY. I went through a few months of these, and started to get really bad vertigo. It was the first time in my life I had ever had Vertigo. I had a bad tingling behind my eyes, and the whole room was spinning and I couldn't stop it. I had to put my head down and wait it out.

A month or two later I had developed flashing lights in JUST my right eye. To this day, it happens multiple times where there is a flash of light that starts where my eye meets my nose, runs along my top eyelid, and then goes down to the bottom of my field of vision and disappears.

I lost the ability to grip things, and felt as though my muscles have disappeared. I couldn't lift things I used to be able to lift, and also got what feels like shin splints...but only when touched. If you touch or put pressure on certain areas of my upper ankle/shin it hurts like it was badly bruised.

After about a year of suffering with these I decided to finally do something about it.

I went to a local doctor and got fitted with a holter monitor for my palpitations. They told me they were benign pvc's and that i have "anxiety"....I knew they were incorrect.

I let the palpitations go on for another 6 months and literally COULDN'T TAKE IT ANYMORE. I felt like I was going to die from them.

I got blood work and it came back positive for lyme...but in layman's terms it was positive that i was carrying lyme but didn't "CURRENTLY" have lyme...the doctor explained it like this..

If I had the chicken pox when I was 5, I'd still test positive for having it even though the symptoms weren't showing...

So that means I have "had" lyme in the past...the thing is, I was never diagnosed with lyme when I had it sometime in my life.

This doctor put me on antibiotics (like most of the doctors do) for a month, and said that "this medicine will kill anything in a month!"

I felt confident leaving the doctors...but I was in for a rude awakening.

2 weeks on antibiotics and my palpitations went away, I was happy. I continued taking them for the remaining 2 weeks and went to my follow up appointment that was 2 weeks after I stopped taking the antibiotics (6 weeks from when i first started taking them)

My palpitations had returned 3 days after stopping the antibiotics.

I told the doctor this, and she said that she would give me beta blockers so that It slowed my heart rate...

AGAIN, I knew I did not want this, and that it was just masking my real symptoms. I didn't go back to that doctor and let another 6 months go by living with horrible palpitations, body soreness, fatigue, vertigo, dizziness when going up or down any set of stairs...contantly disoriented. =|

I did some research on the ILADS website, and was able to find an LLMD in my area. I just got new bloodwork done and am awaiting the results. My new doctor put me on a month of antibiotics that I am currently on...my palpitations have subsided while on them, although I have noticed an increase in the eye flashes and my body is still sore, and I still get headaches that start in the back of my neck...but I'm trying to work toward a solution.

I appreciate any comments, or tips, or even share your stories with me personally. Talking about it with people who have experienced similar symptoms is really helpful for me.

Thanks for reading

Hi Girlie,

Yeah, they were/are quite scary. They're terrible actually. My new doctor is ACTUALLY Lyme Literate, so I'm on the right path now which is good. He also suggested I take probiotics while on the antibiotics (which my other doctor that suggested beta blockers didn't do) So I'm going through with this while I also wait on my new labs. Instead of just the basic lyme tests, my latest labs are for other various diseases that ticks can carry.

I will definitely check out the "New to Lyme" thread. Thanks for the reply.

Hey dfrasier,
Sorry you're dealing with this. If you tested positive for Lyme through a standard lab with your Primary Physician then you definitely have lyme. I'm happy you found a LLMD.
You'll find a lot of wonderful support and advice here.
Keep us posted.

Thanks so much everyone. Feels nice to know there are people out there teaming up and trying to beat this horrible disease and finding the right Dr's etc. It's nice to have some support.

Girlie, right now I'm taking the usual pprescription of doxycyline...it's 100 me twice per day and I usually take my probiotics at around noon in between pills.

Tonight when i got home from work..i noticed i have this strange lower back pain with pain shooting down the back of both of my thighs...it's a new symptom. ..sort of.

When I first had palpitations I had a sciatica - like problem but it went away. Seems like it's back for the time being.

Again..thanks for the kind words. Means a lot.

-deven-

Deven - The usual dosage for doxy to treat lyme is 200 mg twice per day. 100mg twice a day will not treat it effectively. You said you had a LLMD - maybe the plan is to increase the doxy?

dfrasier88-Your story has a lot of similarities to mine! I had tons of symptoms out of nowhere! My GP was my first stop and ironically I didn't have one since the only Dr I would go to each year was my gyno each year and the dermo because I just didn't really get sick before this. He had no history on me and basically diagnosed me with anxiety-which I knew was NOT the cause of all my crazy symptoms-like you & put me on beta blockers which just made me worse! Finally got a LLMD a year after all my symptoms started and am on abx treatment. Really go and read the "New to Lyme" thread like the others have said it will give you a lot of important information. I wouldn't know half of what I do if it weren't for this forum-it's been a HUGE blessing!

I"m glad you found a LLMD and are getting treatment. This will be more of a marathon than a sprint which is a hard concept for most of us we want a quick fix-I know I do! You are on the right path to get to healing!

I think the current thought on treating lyme- they say take a few different antibiotics that target different aspects of it--including taking an antibiotic ( such as doxycycline) and an antimalarial ( such as plaquenil or malarone) , and I was also put on a third antibiotic ( rifampin).

Also, I think they say to treat for many months- till a few months after the symptoms are gone- so 6 months to a year of treatment.  ( every case is different, some need more or less)