Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I know, this question probably gets asked an awful lot on here. Im curious how everyone here was diagnosed. Did you recall a tick bite? Did you have the classic rash? Even if you could just post a link on here for me to read your story, I would so appreciate it.
I dont recall a tick bite as an adult. I only remember waking up one morning and having tingling in my arms and legs. A couple days later my skin was burning from head to toe. Slowly over time my muscles began to ache, joint pain, anxiety, depression and on and on. Couldn't get a diagnosis for anything. This was over 5 years ago.
3 years into it, it went into remission on its own. Has that ever happened to anyone here???? Then a few months after having my 3rd baby, it all came back. I was diagnosed by an LLMD this past April thru Igenx labs. Im still scared to death, still question the diagnosis, etc. Meds arent helping a whole lot yet. Life just plain bites sometimes!!! They want to put me on the birth control ring to stabilize hormones and Im scared to even do that cuz I dont know if it will help at all.
I feel so alone with this disease around here (except for this group of course!!!!) My friends dont totally understand. My hubby is incredible, but he doesnt fully have Lyme (he's being treated anyway). I feel to hopeless sometimes.
Thanks guys. I know putting your stories on here is exhausting but it really helps me to understand what others are going through. I should mention that I did have a bad tick bite as a young kid-was healthy as a kid though.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
My son was 14 and playing football on his freshman team last Oct. 04 when he started to develop leg pain. No rash, don't recall a tick bite, etc. At first we thought it was related to football.
Shortly after we get a call from school that he's complaining of chest pain and dizziness. So began our odyssey. It took about two months to finally find an LLMD who began treatment. By Jan. 05 he was either using a "walker" or a wheelchair.
Our LLMD has treated lymies for 15 years and said it was probably the worst case of acute lyme he had ever seen. Almost immediate CNS involvement. Before diagnosis, I searched frantically for answers to his ailment, he was deteriorating, pain increasing.
I contacted the WI. lyme support group. The lady called me and explained about test unreliability, how everyone gets on the doctor merry-go-round with no answers in sight. I gave her the blood test results, spinal tap, MRI's right over the phone [she's a pharmacist]. She stated that he almost assuredly had lyme, and gave me the name of an LLMD in our neck of the woods.
Here was a stranger, talking to me for the first time, running contrary to all the other diagnosis's we had received. West Nile, Epstein-Barr, an "aversion to school", on and on it went. The conviction in her voice, the knowledge of her words, convinced me to at least try the LLMD she recommended.
She was right, and the 15 other "experts" we saw previously were wrong.
She saved my child's life.
Unfortunately, she is too ill to even reply to e-mail herself today. I did get the opportunity to thank her before she became so incapacitated.
God bless Jeanette, we'll never forget you.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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lyme_suz
Unregistered
posted
Hi,
I had bite, but small non-bulls eye rash. Starting having low immunity I thought.
Diagnosed 5yrs later. Could not get positive ELISA or Western Blot, but my kids did test positive and I had many same symptoms.
Excellant LLMD who has lyme and babs herself diagnosed on symptoms aplenty.
Lyme manifests itself so differently from individual to individual...
Take heart, there are excellant treatments and with some time you will get sorted out. Often, we are improving, but can't tell at the time. Not to minimize your worries, it's all so stressful.
posted
I've had chronic daily headache for over 25 years. Back in the 80's I had several neurological tests and gave up trying to find an answer. About 5 years ago, I started getting numbness and tingling, eye problems... Saw 2 new neuros, had every test in the world. Ruled out MS, among other things.
2 years ago I was told I had fibromyalgia. When my daughter was diagnosed with Lyme earlier this year, she suggested I see her Doc. I did, I did not have a positive Western Blot, but he diagnosed me with Lyme clinically. Last week, my hubby also was diagnosed with Lyme.
I believe I got it from my hubby, who spends a lot of time in the woods and comes home with bites all the time. As to how my daughter got it - who knows. She and her family do a lot of camping - perhaps she was bitten on one of those trips. Our only hope is that she didn't have it 5 years ago when she was carrying her son!
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Hi! New to forum - Had 3 deer tick attachments this summer and although asymptomatic was afraid not to pursue testing. My chiro. is in a lather re: un/misdiagnosed Lyme. More people in his practice this year testing positive than ever. Even had a fellow come to him from Johns Hopkins with diag. of "Autoimmune syndrome." He insisted I skip ELISA - send blood straight to Igenex. IgG and IgM positive by their standard, negative by CDC. Couldn't see my primarty care guy until 3 weeks after test results; by the time I saw him, I had swollen lymph nodes in neck and knee pain. Currently on doxo. for 6 weeks and will re-test after meds. Hope you are feeling well and ready to enjoy Thanksgiving; I'm cooking this year!
Posts: 21 | From PA | Registered: Nov 2005
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I have been sick for over 8 years, been running a fever for the entire time, w/ night sweats, aches and pains beyond comprehension, but it has been in my CNS for a few years now. I live in Cleveland and went to the world renowned Cleveland Clinic and grew tired of fighting w/ doctors.
After my thyroid, adrenal system, and body shut down I was blessed to have a boyfriend and father to help pay for out of pocket clinic treatment for Fibro and Fatigue Center. Those are general diagnosis that only told me that there was a horrible infection and no one can tell me what is wrong. So I persisted and had exstensive blood work and found many infections including an Interdeterminate Western Blot. I also had a negative one but showed positive on the bands that I guess indicated the antibodies. I also have learned that my ethnic back round of American Indian plays a part in the WB being just another tool to diagnose. Too many doctors read the bottom of the test that says you need 5/10 bands positive to have LD. UGH!
However after seeing this dr. and no longer could afford that treatment other doctors in the area see her as a quack and insulted her to my face while discussing what I DO NOT HAVE! So that means I can get no treatment.
So that leaves me going to Indian Health Services since I am an enrolled member of a federally recognized tribe, since I can't get anyone to treat me or admit they don't know a damn thing about Lyme Disease.
Then I am planning on seeing Dr. S in PA that I heard alot of positive things about on this site. But the feds are on his butt, I guess he has had to agree not to see any medicaid patients. So that leaves me in a spot where I will get treated somewhere down the road.
However I think that fact that my 3 year old has to be tested may expeditite the process faster.
I know that I have it, I am so relieved to have found this site. I feel so alone sometimes that no one gets me either. I would not want to be around me all the time either. LOL
If I can be of any help let me know. In the meanwhile I will be making Native chokers to pay for our medical care.
-------------------- Mitakuye Oysain (we are all related) Posts: 34 | From OH | Registered: Nov 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Family freind sent me a email of the Lyme checklist.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Tick bite and bullseye rash in 1996. Went to prominent ID doc and was given 10 days of abx.
I had some flu-like symptoms a monthr or so later, and then things seemed okay.
Then two and a half years ago, my right foot started going numb. I was exhausted all the time, depressed. My thinking blurry. GP tested me for thyroid, diabetes, etc. Symptoms seemed to indicate two different kinds of cancers -- endometrial then bladder. Further tests showed no cancers.
Numbness spread down my right arm. Last Feb, my right knee gave out and the swelling was horrific. I could barely walk.
Went from specialist to specialist, from orthopedic surgeon to endocrinologist -- 12 in all (or was it 13?) I spent thousands and thousands of dollars following everyone's suggestions and taking test after test.
Meanwhile, exhaustion worsened and the swelling increased.
Nobody ever thought to test me for Lyme, despite the fact that this is a Lyme endemic state.
It was my acupuncturist who suggested something systemic, which lead me to this board. From here, I found my LLMD, had tests and was CDC-positive.
That was in June.
I'm getting slowly, steadily, progressively better. Now I'm increasing my workload, instead of the other way around. Feeling hope for the first time in almost 2 years.
As long as I didn't know what I was fighting, I didn't know what to do. In this case, for me, knowledge has been vital.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
repost. Sorry!
Posts: 2549 | From never never land | Registered: May 2005
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