My Experience

3 Responses to My Experience

  1. My heart goes out to you, Lisa! I, too, am a sufferer of late stage [chronic] Lyme. Your words referring to being the “healthiest, unhealthy person”, really hit home for me! Sure, on the outside, I may look “fine” (as bystanders have stated!); however, on the inside, the neurological and physical pain I endure on a daily basis is nearly unbearable at times…. I was just reading on another site, about how Lyme “may spread from a mother to her fetus”; having had unexplainable ill health all my life, and going from one doctor to another since childhood with one misdiagnosis after another, the best possible, seemingly accurate diagnosis from the first doctor to send blood work to the IGNEX lab, is that I was born with this life-altering disease! (My mother has had it for years.)

    I was finally properly diagnosed 8 years ago, at age 26. After 6 long years of intense, roller-coaster antibiotic treatment to no avail, here I sit merely managing my symptoms, which entails the encounter of a new symptomatic illness every year or so. (Or, dare I say, more accurately put: my recurring, persistent symptoms equate to formal symptomatic diagnostics. ?) Sigh…. Fibromyalgia, Chronic Fatigue, Restless Leg Syndrome, IBS, Interstitial Cystitis, Chronic Migraine (20 years and counting!), Musculoskeletal Disorder, Anxiety, Depression, TMJ, Gluten intolerance, Arthritis, Hypothyroidism, Delayed Sleep Phase Syndrome, ADD, [both food and environmental] Allergies, Asthma, and recurrent sinus infections/ear infections.

    Like

    • Lisa, how old is your son? I have just recently been researching Ozone therapy myself. No direct experience with it. I’d say to be cautious, as I don’t believe it’s approved by the FDA (forgive me if I’m misspeaking here; going off memory, which as you know, isn’t always reliable!!!); ozone, technically is a poisonous gas…. As always, as Lyme sufferers, we need to weigh the pros and cons of every possible scenario. Sometimes what others view as a “negative” approach, may be what our body needs to eradicate the spirochete!

      My son has several sleeping disorders, including delayed sleep phase syndrome, sleep apnea, night terrors, night sweats, sleep walking and sleep talking (obviously all equating to difficulty falling asleep and staying asleep). His sleep study indicated his brain spends longer lengths of time in the REM stage of sleep, nearly double what is typical during a normal 90 minute sleep cycle. He has allergies, asthma, chronic cough, recurring sinus infections and ear infections, increased thirst especially at night, frail / curvy nails (God forbid if clean or trim his nails, let alone even touch them!), and he’s very, very intolerant to loud noises. (I will never forget one of his worst panic attacks, when my sister took him potty and the toilet automatically flushed! To this day, he HATES public restrooms because of the loud flushing and automatic hand dryers!) Digestive issues include, but are not limited to, diarrhea, bloating and gas, and constant sweet cravings (literally, all he wants to eat is any form of bread or anything with sugar! Ugh.) And, although I don’t mind you asking, truthfully, I’m nervous about sharing so much personal information about us. 😦 Nonetheless, I’m to the point where I can use any type of support and ANY helpful information is a blessing to me! There are a few other neurological things going on, suggestions of dyslexia, transposition, and myoclonus (body jerking and crying out “my legs hurt!”, which reminds me of my restless leg). Over the past year, we’ve been working with his pediatrician and an behavioral counselor, and have a formal diagnosis for ADHD (which I am PRAYING is linked to the sleep apnea/ not getting appropriate sleep, and NOT the possibility of him having Lyme). He is so easily distracted, NEVER sits still in his seat at school, and has mood swings like a teenage girl!!! I digress…..

      Upon reading your [lengthy] symptoms list, I realize I left out many of mine, some of which I inadvertently didn’t realize were, in fact, Lyme related! Such as certain fabric irritating my skin (even a shirt I’ve been wearing a couple hours, can all of a sudden feel heavy and irritating to my skin!) chemical / scent sensitivities, and, many, many others that I’d take up way too much of your time to list! Realistically, I have experienced at about 75% of the symptoms at one time or another, 1/2 of them being constant, daily symptoms! Given the heart palpitations and heaviness I feel in my chest, you’d think more of the doctors I’ve seen lately would take more time to try to treat me.

      Lastly, do you have endometriosis? I had a laparoscopic surgery for endometriosis in March of 2002, in which my the surgeon used electrocautery procedure to laser the infected tissue. Over the years, I have had surges of pain, sometimes lasting months on end….. May I ask where you receive treatment for your Lyme? And, if your doctor is reluctant to link all of your symptoms to Lyme, as this is my largest battle living in a small town in Michigan? Thank you kindly for your time. Finding this blog, at this exact stage of my life, may in fact be the beacon that links me to other Lyme sufferers and positively impacts my life! At least, that is my hope….

      Like

  2. Furthermore, I have a six year old son, whose medical issues are mounting by the month. When I think of how I may have contracted it from my mother, my heart sinks at the thought of my son having possibly contracted it from me. Lyme disease, as you know, passes the blood brain barrier, and when you have it from birth, it takes its toll on you neurologically. “When the Lyme infection occurs in the womb, a new set of variables and complexities are introduced to the scene which further broaden the potential neurological effects of Lyme disease.” (quote take directly via:
    http://lymebook.com/lyme-disease-mental-illness-schizophrenia-bipolar-ocd )

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s