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Lyme Disease Support Network

About the New Member Check In category


#1

New members, start your experience here. Introduce yourself and share your story. Let us welcome you


#2

Hello, my name is Crytal. I’ve had Lyme disease since 1993. I wasn’t diagnosed for almost a year or more. Then when I finally was diagnosed I wasn’t treated properly and continued to get worse until I saw a Lyme Literate Doctor. After 3 years on IV Antbiotics and several more years on oral antibiotics my symptoms abated. I then had so many other wild health issues that required my attention that I didn’t see my Lyme Doctor for about 9 years. I had severe Osteoarthritis of my Cervical Spine and had a Cervical Spinal Fusion. Then a Rare Bone Anomaly called Eagle Syndrome was detected and I had two more surgeries to remove these Styloid Bones that had fused to my Hyoid bone bilaterally. Fibromyalgia, CFS, Daily Tension Migraines, Tinitis, IBS, diarrhea w/weight loss, Hypothyroidism. After surgery my symptoms just seemed to get worse? I figured the Lyme was probably partialialy to blame? So a visit to my Lyme Doctor who was in agreement started me on oral antibiotics that didn’t work out due to my gut being in such bad shape. Switched to Bicillin injections once a week. I’m just totally worn out mentally and physically. I’m now dealing with TMJ Dysfunfunction and 24/7 acute pain. I’ve tried all kinds of alternative care like Acupuncture, massage, Craniosacral, Physical Therapy, Aromatherapy w/Essential Oils, & Meditation. Anything to get by one day at a time.


#3

Hello, my name is Suzanne and I’m currently trying to determine what type of treatment I will try next. That’s the reason that I’m here. I’m hoping that I can get some input from more experienced Lyme sufferers who have been faced with limited options with limited resources. I was diagnosed clinically with Lyme in February of this year. At first I was excited to actually have a diagnosis for the mysterious fatigue and symptoms that I’d been having for the past 10 years and I even posted it as a life event in Facebook. Yay, I have a diagnosis! Now I can get cured! Since then I have been researching as much as my brain and emotions can handle, and I am feeling very foolish. I’m guessing that most of you can relate to being relieved in finding the reason for your symptoms. Now that I know the facts I am very, very sad, anxious, and angry.

My symptoms are primarily fatigue and not a lot of pain, but I am afraid that that may come with time. I have difficulty concentrating, brain fog, balance issues, stiff neck, anxiety, panic attacks, shortness of breath, chills, night sweats, memory problems, nausea, exercise and alchohol intolerence, swollen brain feeling (like a headache without the pain) weak muscles, heartbeat irregularity, ankle arthritis, occasional bladder sensitivity, hair loss, tingling fingers, and new occasional sharp pains in the left side of my chest.

I tested negative with the Western Blot but had a positive 41 band. I remember a fully engorged tick that I found on my leg about 10 years ago in New Jersey. I used nail polish on it to get it to release and found out recently that that probably caused it to regurgitate under stress.

I’ve been seeing an integrative medicine specialist since February who has managed to balance my hormones and vitamin levels to almost normal ranges. On the other hand, she has also gotten mixed up about the details of my chart and my case on several occasions. The last time I went to her she said “we decided that you don’t have Lyme because of the negative Western Blot, right?” That was the last straw. She originally told me herself that the tests were flawed and might give a false negative. I’m now in search of a new doctor. I got 3 referrals from ILADS that I’m looking into. One of them charges far too much in fees, and another has some negative yelp reviews about being disorganized. The third specializes in autonomic dysfunction and I’m not convinced that he’s the right one, but I’m not sure why. Just a feeling, I guess. I know that there are institutes out there that charge thousands of dollars for treatments and they are not an option.

I’m thinking that I just need to find another integrative physician who is Lyme literate. Does anyone have any advice they can offer?


#4

My husband has been suffering for 4 years. His systems were fatigue and severe vertigo. This quickly progressed to pain everywhere and paroxysmal spasms. We saw4 neurologist. He was diagnosed with under treated pain.Our primary dr ordered a case manager. She really helped out with getting mris approved. We also were fortunate to have home health PT and OT. It turns out that her husband has Lyme disease. She referred us to aLyme disease dr. He has been under treatment with antibiotics, probiotics and detox drops


#5

Hello everyone ive had Lyme DIsease for about 20 Years, I am now a man of 25 years old. I do not have a “Pre Lyme” self to compare myself to as many do. As most of our stories with Lyme are long ones ill try to keep mine short!

“Alright its time to head home” i herd my mom say as i woke from a nap realizing i couldn’t move. While the others packed beach bags I was thrown into a mental battle for control of my body. I was glued to the ground with and unabating hold that left 6 year old me screaming and in tears. It hurt to move(always has after this) and i was in bed for a month or more. Being a child at the time i was eventually bombarded with elders telling me the way i feel is normal and i developed a mindset that everyones body and brain felt like mine. Ten years the crazyness of my symptoms grew more apparent to me but i was afraid, i wasnt able to get thru to any specialist or doctor and feared being misdiagnosed/set to a psychiatric hospital. i had made it to about 17 or 18 when the neurological symptoms landed me with nerve damage on the right side of my body/face and split vision just to name a couple. Im 25 years old now and i have lived my entire life with Lyme Disease.