A Personal Experience With Lyme Disease
This post was sent to me from a courageous woman with two children - not afraid to speak out. I think we all share in her frustration!
“This Lyme is a very dangerous disease and so many people do not understand it. You will get different and possibly inadequate treatment that can ruin your life.
My experience with Lyme:
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Two of my clients were diagnosed incorrectly with Multiple Sclerosis and placed on medication associated with this disease only to find out they had Lyme.
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My acupuncturist had a Lyme induced heart attack - called heart block. A fairly uncommon symptom.
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My chiropractor’s son got bitten in the winter and was told he could not possibly have Lyme because it was winter time and ticks aren’t active. (Deer ticks are active in any temperature above freezing. ) He was not correctly diagnosed until the disease became chronic and is no longer the active healthy child he used to be.
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My friend’s son became paralyzed on one side of his face, “Bell’s Palsy”. Fortunately it was quickly diagnosed as Lyme and he is fine today.
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My daughter was told she could not have Lyme because the tick was on her less than 24 hours. This is not true. The possibility of transmission is lessened but it is still possible- especially when the tick is removed incorrectly sending the bacteria directly into the body.
I understand the risks and had her placed on amoxicillin (the most effective antibiotic for treatment of Lyme in children.) Even on the antibiotics she still got the EM bulls-eye rash, fever, bone and muscle pain, severe headache. She cried for 2 days, could not get out of bed and did not eat. After the rash subsided the skin broke down and became an open lesion.
She is on the mend and is her wild and crazy self again. She is not out of the woods yet - she will be on antibiotics for 28 days and I will still have to monitor her. The spirochetes are a tough bugger to kill.
Please comment on Roberta’s story. Do you have a story to tell?
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Thanks for visiting again - Please comment on the posts you read - everyone is interested in what you have to say.
January 1st, 2009 at 11:57 pm
I’m encouraged by these stories. It took 8+ years to get my diagnosis, I had no idea I had lyme. I’ve been on treatment for 7 months (oral antibiotics, and just recently bicillin shots) and I haven’t seen an improvement, if anything I feel worse. I think since my lyme went untreated for sooooo long that my saving grace will be IV treatment, which I believe I’ll be starting in a few months if I’m not showing any dramatic improvement. We’ve been treating my 3 co-infections for most of the 7 months and only recently started the lyme treatment with the shots. Even though I grew up in Northern California(Santa Cruz mountains) and ticks were seen as just a part of life there, it never occurred to me that I might have lyme till a friend and my local doctor finally said let’s test and just see, what did we have to lose? I’d been tested for everything else under the sun, RA, MS, lupus, mastocytosis, etc…and finally in January ‘07 a rheumatoid doctor said I had fibromalgia, which I summarily rejected because I see it as the garbage can of diagnosis, the doctors don’t know but put a label on what they don’t know. I walked out of her office disgusted and beaten down…a month and a half later I finally had my answer. The last time I remember taking a tick off one of our dogs was nearly 8 years ago when we lived in Singapore, but who knows when I got it? I do know that in the last 8+ years I’ve been fighting something I just didn’t know if it was an autoimmune disease or not. Many trips to the hospitals, many miffed doctors, many blood work results that were confusing, but no answers, no one wanted to look closely enough. I truly think a few of my doctors(especially the infectious disease specialist I saw the whole summer of 2006, had an idea what was wrong but chose to look the other way. Don’t ask me why. She literally looked for the most obscure illnesses and even did bone marrow testing, yet couldn’t see past the end of her nose.
It’s a epidemic and I wonder if I’ll ever know satisfaction and be acknowledged in my lifetime that doctors knew what was wrong but didn’t want to test me.
Thank you for your website, if gives me hope.
January 2nd, 2009 at 4:25 pm
I have a similar story to you, and it is this precious understanding that holds me together so that I can keep up the website and blog…I appreciate your comments so much as I am sure the other readers do too. Be careful to not rely on the IV too much - it may be a wonder drug for you but you may need a year treatment and insurance only covers one month! I can tell you that everyone tells the same tale of feeling worse before you start to feel better. If you have had Lyme for 8 years, you will take awhile to notice any improvement. But you will beat this eventually - just stay at it and don’t give up hope!
Blessings,
Jenna