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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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
July 12th, 2010 at 11:24 pm
my dad is a chiropractor and he often amazes me how he could treat my sprains.-’.
November 12th, 2010 at 10:28 am
Good morning, you have a superb writing here! I’m assuredly going to bookmark you! Thank you for your sharing. I love to read all.
November 14th, 2010 at 10:05 pm
It will be 2 years of this disease in Jan for me. I got bit got the rash and everything but since I never heard of ticks I thought it was a spider bite or mosquito bite so I paid it no mind. Until the symptoms started of course. Unfortunately for me it went straight to my heart and then head. I am on antibiotics now going on a year and anti-anxity pills because it stops my body shakes…My brain is not the same (I cant be certain now what I am typing is what I think I am), my body is contsantly twitching, my heart is constantly spasms, and I am in pain constantly. BUT HEY…I am still here…I can smile in that fact everyday and I will continue to do so..no matter what this disease puts me through.SO all of you out there fighting the fight against this disease,,,don’t quit!
November 8th, 2011 at 9:11 pm
I got bit by a tick Sept 5, 2011 while doing a photo shoot with my son. It got me on my inner leg in the crease where your underware is only about 2inches down on the leg. I found it 4 days later, and had my husband remove it. Cause it was small, he couldn’t hardly grip it, must of sqeezed to hard on it before taking it out, the dr said it bit into my main artery in my leg, i never got the rash, but i did get a big 6in wide bruise about 1inch up and down. Still have it to this day, I got sick, started having stiff neck and severe migraines, had them for about a month, went to dr, and she said it was lymes disease, gave me a weeks worth of anitbiotics and said if i don’t get better to let her know. At the current moment i’ve been unemployed since July and my husband is disabled waiting on disablity to kick in, so i can’t afford to go to dr. I got some what better, but soon muscle aches kicked in severe joint pain, and head aches again, and tiredness, then i got tremors. Not all the time, but on my bad days i get them to the point i can’t write or hold a cup. I’ve started taking vitamins and herbs. Cats claw and another herbal mix with all the good things to boost my immune system. for the first time in 2 months i got to go outside and play with my grandkids. It felt great, then Oct 17th I got strep. Took me 1 day to catch it, and 2wks to get it undercontrol, still have infection in my nose that flares up from time to time. My blood pressure is way out of control since the strep. Always high. Taking double the dose of bp meds. I pray and pray that I will survive this. I’m afraid that i might not. I have eye twitches all the time in my right eye. I’ve always had some slight issues with my lower back in pain, now its always in pain. I can’t sleep, and in fear that this stuff can be transfered sexually to my husband. I’m gonna join a gym next week and do some swimming and some excersizes, oh yes and the past 2 wks has been constant full body sweat. Not alot, just like your starting to sweat when you get hot, and then stay that way all the time. Hoping that i can beat this, and to all out there, stay strong and be healthy. God bless.
November 10th, 2011 at 11:20 am
Sharon -
I am so, so sorry! The correct dose of antibiotics at the beginning would have taken care of everything, now, you are in a “chronic” condition and need a knowledgeable Lyme-literate doctor who is willing to treat you aggressively.. The good news is that researchers are coming closer to reliable diagnosis and treatment – just ignore the medical debate that is driven by egos and ignorance, and take charge of your own medical care. Don’t give up. And please use condoms with your husband. Not everyone agrees but spirochetes are found in all the fluids of our body including urine and semen and syphilis, Lyme’s cousin was certainly spread that way. Better safe than sorry. Remember that you are not alone.
Blessings,
Jenna
November 21st, 2011 at 7:34 pm
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