Share your Story, I'm all ears

Hi, my name's Rick, I'm 33 and was recently diagnosed with Lyme. I began having all sorts of crazy symptoms July 2014, but they might have started 6 months earlier. Last July-present symptoms: numbness in soles of feet, gastro intestinal issues, heartburn, acid reflux, urinary problems, bladder issues, popping ears,heart pains, heart arrythmias, extreme heart palpitations, irregular heart rate variations, lack of oxygen as though I forgot to breathe, neck pains, back pains, stabbing pains in muscles that come and go out of nowhere, shoulder pain, loss of strength in left forearm and arm for 6 weeks, sore throat that disappears, HEADACHES, food allergies (can no longer eat gluten), anxiety attacks, depression, anxiety, extreme fatigue, extreme sleepiness, apathy, soreness, stiffness, stuffy ears, tinnitus, pain in ears, shooting pains in ears, jaw pain, neck pain at base of skull, pain in eyes and behind eyes, visual disturbances, can't focus on images, objects undulate, floaters, light sensitivity, sound sensitivity, mood swings, irritable, can sleep for days, insomnia at times, night sweats, extreme brain fog, difficulty reading, MEMORY issues always, difficulty multitasking, forget words, feel like falling, dizziness when standing (often), white mucus for 10 months straight prior to this my mucus was typical color, runny nose and I'm not sick, stuffy nose that comes and goes with trigger, sometimes can't/don't have energy to even talk or get up, weird headaches that come and go for 2 min.,30 min., 8 hours, pressure in frontal lobe often, feels like I'm in a dream state, sometimes as though I'm stoned, I blank out and stare off in lala land, can't focus on people talking to me, trouble at stores looking at everything like I can't focus, seems as though symptoms migrate to different parts of body, feel like I'm going crazy sometimes, then I feel normal, never know what I'm going to get next everyday is something new, feels like something has taken over my body, etc., etc.
Then I'm normal for some time back to my normal self, there is no pattern to my symptoms.
Seen over 15 doctors at least 6 of them specialists. Finally, I requested Lyme test and blood results came back positive. Here I am, met LLMD and currently on Week 1 of treatment.
Thanks for reading, I'd like to hear your story.

Post Edited (Onetime416) : 7/19/2015 3:52:40 AM (GMT-6)

Hi Rick- welcome to our community!

That's a lot of symptoms you're dealing with. I'm glad you have a LLMD treating you.
I will come back later and tell my story...but first I wanted to welcome you here. I hope you find this forum to be a great group of caring, knowledgeable people.

When you have a moment, please take a look at the thread at the top of the page titled: "New to Lyme?...Start Here!" It's full of good information - symptom lists, detox methods, information on probiotics, and much more.

Because you've started treatment - pay attention to the detox methods in that thread. It is crucial to employ several detox methods while treating lyme and co infections. The detox is necessary to help flush out the toxins that are created when the bacteria dies...thus alleviating some of the herx symptoms.

Keep coming back to read, ask questions, vent etc.

My story: (Some details change everytime I tell it because i realize after I've written it that I've forgotten some of the timeline)

April, 2013 - left shoulder blade - tingling, soreness. By end of work week still not better. Wake up on Friday night with excruciating pain up my neck to the back of my head and my left arm is limp and my index finger is numb. Go to ER - give me pain killers. Am pretty much flat on my back for two months.
I drop from 138 lbs to 124 lbs in a few weeks time.

May, 2013, start having anxiety while trying to fall asleep, have a sensation of a lump in my throat.
Go back to work part-time in Aug, 2013, and symptoms explode. I start having bouts of anxiety and depression, crying my eyes out.

Within two months, I have nervous system vibrations, muscle twitches all over my body, numbness and soreness left jaw/cheek area, joint pain, muscle pain, and now the upper left side (original problem) has developed nerve pain. Symptoms continue to stack up - my legs get weak, I have tremors, I'm choking on my spit, and I have sudden onset sleep apnea. I am waking every two hours in a panic, gasping for air. I have short term memory problems, I get overwhelmed easily, balance issues, and throbbing in my head when I stand up. I have a sore, swollen lymph node - left clavicle area.
My skin changes - and I lose the fat on the back of my hands and around my eyes.
From Aug, 2013 to May 2014 - I see three GP's, two Endocrinologists, a Neurologist, a Physiatrist, an ENT Dr. four physiotherapists, a chiropractor and a TCM Dr.
I have two xrays, one CT, 2 MRI's, a tube with a camera in my nose down my throat , a barium swallow xray, and a bunch of lab work, and do a home sleep test and try out a Cpap machine. (it doesn't help)

Nothing was found to explain my symptoms.

In July, 2014, I do the Igenex WB test - and test positive. Started treatment.

If i check my notes, I will realize i've left some symptoms out....but you get the picture! It's not pretty.

I have had some improvement - have 'lost' some symptoms. My sleep apnea appears to be gone...no more gasping and panicking int he middle of the night - every couple hours.
I do wake up, but it's uneventful and I fall back asleep.
No more tremors.
My left arm is stronger.
My legs are stronger.
Muscle pains gone.
I don't get overwhelmed anymore, no more anxiety, don't cry on a daily basis anymore.
No more tailbone pain (forgot that in my initial list)

I still have a lot of symptoms...and sometimes I 'feel' like I'm no better - because a few of my worst ones are still with me...but when I look at it on paper, I realize that I've improved.

My worst ones: Nerve pain - left shoulder blade, left arm/hand/fingers; vibrations in my body; heat dysregulation (forgot to mention that in my original post)

I have only treated lyme with antibiotics - but it is suspected I have bartonella...and unfortunately my LLND hasn't prescribed bart meds yet...I think I should have started them back in February - either I would be feeling better now....or I would know that I need to treat something else...

Hopefully next month, I will get Rifampin to add to my minocycline...and see if I knock off a few more symptoms...