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Lyme Disease; A Personal Symptom Snapshot and Facts You Want To Know

May 3, 2015

 

May is Lyme disease awareness month and because this disease continues to be obscured by our public health officials (the Infectious Disease Society of America and CDC) and subsequently mainstream medicine, I will be sharing some articles and facts on the subject. Although I prefer to focus and write about healing and balanced health, staying quiet on this subject won't change things. Please share any information with someone you think could benefit from it. 

 

First off, I am sharing a quick story, or snapshot if you will, to give you perspective of a chronic Lyme disease day. I remember this evening from several years ago so well because I didn't think I was that sick. Now that I have regained more balanced health this blows my mind and saddens me.

 

"It's a few days before Christmas and I am lying in bed. The lights are out but the television is on, no sound. I alternate between sleeping and staring at the ceiling. My entire body hurts and I am so weak. I am sweating and have chills at the same time, my temperature is 95.7 degrees. My head and neck hurt so bad that it is hard to be still. I have shortness of breath. My vision is blurry and my left ear is ringing so loud that I liken it to standing next to a police car with the siren on. It's difficult to swallow but I am starving with severe hunger pains. I put my scale away this morning because my 5'6" frame is at an all time low of 95 pounds, while eating 4,000 calories a day. Too disturbing to see the number drop day by day. If I get up to see what my family is up to, hanging onto the wall because I am so lightheaded and weak, I have to go to sleep for an hour to recover from the walk to the other end of the house. Sharp stabbing pains wake me up, taking my breath away. I have tacchycardia too."

 

For me, a chronic Lyme and multiply co-infected patient with several years of on and off treatment under my belt at this point in time, this didn't seem too bad. When my Lyme doctor called me at 8:45 p.m on this night, I calmly explained that I had "taken a bit of a downturn". This was another day, another month, another year. You get used to being so out of balance. And if you saw me out and about a few days later, you probably would have told me I looked great! Quite thin, but otherwise, great! 

 

I am not sharing this because I am angry, illiciting sympathy, or to instill fear. I am sharing this so that when someone you know says they have chronic Lyme and tick-borne infections, you know that the occasional ache and pain along with some fatigue is not what they are dealing with. I am sharing this so you know that when you head out for a hike it is important to put tick-repellant on and do a tick check when you return. And when you find an embedded tick on yourself its cause for alarm. Not panic but certainly in the category of finding a suspicious mole or an unusual breast symptom; you don't ignore it. Could you imagine going in for a mammogram for suspicious breast symptoms and getting a negative result to find out that the results were only 30% accurate as they are for Lyme disease testing? Of course not! But this is how it continues to go. 

 

Other reasons I want you to be informed and aware:

 

The CDC estimates there are close to 6,000 new cases of Lyme each week. This is likely much higher.

There are over 100 strains of Borrelia, the Lyme bacterium, in the United States. Currently there are tests for only a few of these strains.

Fewer than 50% of Lyme patients recall a tick bite or get a bullseye rash.

40% of Lyme patients end up with long term health issues.

Lyme symptoms can easily and are often mistaken for other illnesses.

With early and proper treatment the more likely a full resolution of symptoms.

The Infectious Disease Society feels that only 2-4 weeks of antibiotic therapy is necessary to cure Lyme disease.

ILADS, the International Lyme and Associated Disease Society, feels that individualized treatment is necessary, often involving longer treatment times.

Other infections, or co-infections, can be transmitted from a single tick bite. These include Bartonella, Babesia, Ehrlichia, Powassan virus, Tularemia, Q-Fever, Tick paralysis, and Rocky Mountain Spotted Fever. Co-infections complicate the symptom picture and often require different therapies.

 

So....

 

Be aware and educated for yourself, your family, and friends. Until the Infectious Disease Society and the CDC acknowledge the severity of Lyme disease and co-infections and change the treatment guidelines accordingly, the stigma that Lyme disease is easily treated and cured, will exist amongst mainstream medicine. 

 

Leaving it here for now. 

 

Amy

 

Resources: www.ilads.org, www.lymedisease.org

 

 

 

 

 

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