In my first post of Living With Lyme, I wrote about how misunderstood Lyme disease is. There is an incredible amount of really bad information about it online. That is why it is crucial to get local support from people who have it or have been treated for it in the past. Even then, you have to be careful. There are people who have been treated after a recent exposure who seemed to have rid themselves of it quickly, so they do not understand why you just can't take a quick round of antibiotics and get over it. I have also come across a few who self-diagnosed, although they have never seen a doctor to get to the bottom of their symptoms.

Luckily, I have enough people I have met who truly understand
what I am going through as well as how symptoms, herxing and treatments vary from person to person; especially depending upon what co-infections the little bugger gave you along with the Lyme. If you are in the Massachusetts area, I have good news regarding getting more education and additional support. Come to the Lyme Disease Conference on March 21st!

In February 2014, the Central Mass Lyme Foundation was founded and just over a year later they are holding the first area conference. I know this is short notice for my fellow New Englanders but if you can make it, please come. Admission the day of is only $10. If you register ahead of time, you can Will Call your tickets for only $7 each.

New England's 1st Lyme Disease Conference!
March 21, 2015
Quinsigamond Community College
Harrington Learning Center
670 West Boylston Street
Worcester, MA 01606
Saturday 9:00 a.m. - 4:00 p.m.
Onsite Registration at 8:30 a.m.

For more information visit http://masslymeconference.com/
 
 
    I thought I was crazy. I noticed, even before I was diagnosed, that on many days I would have great energy in the morning but within ten minutes after getting out of the shower, I felt like I want to crawl back into bed. In fact, that was my first complaint to a doctor when I started having symptoms and it was quickly dismissed. It was in my Lyme treatment research that I came across that it's a known issue to those with Lyme! I wasn't crazy after all!

    I have seen a lot of theories about the causes of this: the heat from the shower, the chemicals in the water, the steam, or possibly the way your skin is palpitated by the shower flow. I am here to tell you that ALL of them are wrong in my experience. I take baths and do not have the same reaction. Hot baths make some of my symptoms better. The steam never bothers me. I have well water that is filtered; and not cheaply, because we found that we had high levels of radon in our water when we moved in. My tub is also jetted and I use the jets most of the time so the skin being palpitated doesn't fit the reasoning. With all of these things being true for my baths as well, the theories don't hold up because I never feel bad after a bath.

    There is one other possibility I would like you all to consider. When you get cold and your blood vessels constrict, this has a detoxing effect. (For more on the benefits of cold showers visit this site) Is it possible that this is why the sudden drop in energy after a shower for us Lymies? We get out and are chilly for a few minutes before we get dressed? I am always so well heated from my baths that I don't get cold when I get out. Maybe the most simple explanation is the most obvious one. Sometime I'll take a space-heater into the bathroom with me to test that theory and will let you all know.
 
 
Here is a great video interview from Michelle Miller from The Central Mass Lyme Foundation.
 
 
After not “feeling well” for several years, I finally found a doctor… a couple actually… that would take me seriously. To make a long story short, I have been diagnosed with Lyme and two co-infections. My exposure was over five years ago when we were living in TN. I never had a bite, the typical rash, or ANY of the “typical” symptoms. In fact, the symptoms that brought me to see one doctor after another were for a different issue and my diagnosis came up because my treatment for my other issue wasn’t working the way it was supposed to. I was fortunate enough to finally find a doctor who, after taking a complete history of my symptoms, ordered a bunch of tests that hadn’t been ordered and knew enough to run the Lyme tests as well.

If you are reading this and have Lyme you know how incredibly isolating it is to have this diagnosis. People think it’s just something you get, take antibiotics for and are done with. I am writing to reinforce how far from the truth that is.

This is all the CDC will admit to:

“Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, applying pesticides, and reducing tick habitat. The ticks that transmit Lyme disease can occasionally transmit other tickborne diseases as well.”

No wonder so many people suffer alone! Not only does the CDC ignore everyone who has it but, like many other things, suggests that it can be diagnosed easily, then treated just as easily. After reading too many stories about people suffering with it, dying from it and committing suicide because of it, I decided that I need to share my story as well.

Back when my father was diagnosed with Leukemia, people understood, at least generally, what that meant. (And even so, my father wasn’t very quick to tell people.) During the times where my father was going through treatment, friends of the family would bring by dinners, offer to drive the kids to their activities, send get well wishes, etc. Between my step-mother and myself, we had it covered, but it was nice to have some help. The stress was tough enough to deal with.

What I will never understand is that a lot of people don’t see Lyme as anything serious, even when someone tells them point blank what is going on with them. People don't want to believe them. It’s unpredictable, often very debilitating and because no one understands what you are going through, it’s isolating. I have spent more days in bed than out over the past five of weeks of starting treatment for it. People that think they get it, can also think that there’s no reason for that sort of reaction to treatment. The truth is, everyone reacts differently and there is no one treatment that works for everyone.

Do you want to know more? Do you know someone who has it and really care enough to understand? Go here for an introduction – The Controversy That is Lyme Disease