Lyme Aware

Category Archives: Lydia’s Two Cents

Lyme Lives Matter!

lyme lives hereMy first thought when I saw the headlines of how Yolanda was given the ultimatum not to speak of Lyme disease in the Real Housewives of Beverly Hills was sadness and then anger.  Eventually, it was understanding.

Since back in 2002 when my life was brought to a complete halt from Lyme disease, I have seen many Lyme sufferers come and go from the spotlight so to speak.  Many weren’t celebrities; they were just the average Joe or Jane.  They wanted to raise awareness so that others wouldn’t fall into the same fate. However, it’s difficult to live with a chronic illness! Whether it is chronic Lyme disease, diabetes or heart disease. But, I truly feel that those with chronic illnesses such as Lyme disease have a much more difficult time. We don’t get the support, recognition or understanding like those with diabetes or heart disease.  It’s almost as bad as those that have mental illnesses such as depression.  We’re treated like lepers, and many of our friends and family don’t want to hear about it anymore.  Not only do we struggle with a disease that supposedly doesn’t exist, but we deal with being able to live with it and survive without being able to speak out so that others know that it’s no picnic. 

Yes, in the beginning, some of our family and friends get the support because they can see that we are really struggling.  But, with time, that support ceases and some disappear while others begin to wonder if you really are sick and it’s not all in your head. Or, they question if you really are suffering from chronic Lyme disease or some other illness.  Eventually, you are left to decide whether you want to continue speaking about it or continue with life as best as you can. 

For some of us, those of us that have been luckily enough to get healthy enough to work, we have to ultimately decide whether working and sustaining a long-term job is more important than raising awareness and offering support and understanding to those that continue to struggle and remain ill because they are dealing with chronic Lyme disease all alone.  It’s a very difficult position to be in. You want to help those that are too ill to speak up; but, yet, you want to live as normal a life as possible.  It a double-edged sword. 

At the same time, you are struggling with your inner conscience on that aspect; you are seething with anger because again and again you see someone silenced because the public doesn’t want to see the good, bad AND the ugly or controversial. Over and over again, chronic Lyme disease warriors and survivors are slapped in the face with the “it doesn’t exist” and “it’s all in your head” or, “it’s just a ploy for attention.”

“In the fullness of time, the mainstream handling of Chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.” – Dr. Kenneth Liegner

I’m getting very tired of waiting for the day that those that deal with chronic Lyme disease will get the same recognition as those with AIDS.  (AIDS was very real and so is chronic Lyme Disease.) They, too, once were shamed, ridiculed and ignored while many of those that were ill continued to die.  I’m tired of seeing Lyme warrior after warrior dying knowing that they were thought of as crazy and ridiculous. Discarded by society feeling as if they didn’t matter!  

 

Sidenote:  I am so very happy to hear that Yolanda is publishing a book on her battle with Lyme disease! The forces that were just worried about ratings didn’t stop her completely.

Nordic Needle, Perhaps You Should Read This

Nordic Needle, Perhaps You Should Read This

WorldWideProtestToday, I received an email sharing the Nordic Needle’s newsletter. In it there was a blurb covering Lyme Disease Awareness month and included a BlogSpot. I thought that was great, the word is getting out, then I saw where the donations were going—none other than the American Lyme Disease Foundation (ALDF). I was overcome with such an overwhelming sense of sadness.   I shared this bit of information with my fans on our Facebook page. A comment was made as follows: “

“Is it possible that Nordic Needle doesn’t understand that ALDF is not an organization they should be supporting? The name sounds legit enough. Perhaps Nordic Needle Lymie customers could enlighten them and suggest lymedisease.org or ILADS as an alternative”

To that I say, perhaps, we should share our insights or thoughts to them. As you are aware, many, unless they have been personally affected by the chronic form of Lyme Disease, have no clue as to the whole “Lyme Wars” controversy.  Perhaps, it is time for them to read LYMEPOLICYWONK: Bogus Grassroots Groups – Who’s Who and What’s What with the American Lyme Disease Foundation (ALDF).  

“If I hadn’t experienced the chronic form of Lyme Disease for almost a decade of my life, I would probably come to believe that it is not possible. However, after finally feeling 110% for a few years, I realize that it does indeed exist.” ~ Lydia

Please share your comments, so that I may share and tweet this and bring it to their attention.

My Plea to the Katie Couric Show

thumbnailCAJHSDRAMy Plea to the Katie Couric Show

I’d like to thank Katie for at least responding to a few of the Lyme Disease comments, which were many, to the “What was your Worst Health Scare!”

I sincerely hope that her show does do a show on Lyme Disease.

It is highly controversial” medical” issue and a mystery to many of the doctors that are not well informed on this disease.   It is “controversial-aspect” that I feel is the reason that many shows like the Katie Couric Show will not cover this subject. I have met many, thousands, of great people that continue to suffer daily with persistent Lyme symptoms. They are the strongest individuals I know including the young children that have had to “grow up” quickly at the fate of Lyme. Oh, how they have matured in such a short period of time! I try to showcase all of those affected by Lyme or trying to speak for those that are too weak to speak on my site, but I know I miss many because the numbers continue to grow.

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Slate’s Medical Quacker and Conspiracy Theorists

frustratedI had to step back a bit when I read this article, Why Is Romney Campaigning on Medical Quackery? I was quite angry with the callous tone of this article. If it was as easy as she made it sound, my life would have not changed so drastically and I would have never needed to be fed, bathed and clothed by my husband because I could not do it myself. What could have made me so ill, well, of course, the difficult to diagnose and easy to treat Lyme Disease!

Strange is that I had the tick, the bulls eye rash and all of the early symptoms, an easy diagnosis, don’t you think? Well, that was not the case. Despite all the of telltale symptoms, my test for Lyme Disease came back negative! Six weeks later, after being refused to be heard that all my problems began when I found the tick on me, I was consistently told that it was NOT Lyme Disease. Lyme Disease could not get anyone that ill. Yeah right!

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Totally Frustrated & Confused!!! What Treatment Should I Follow?

screamTotally Frustrated & Confused!!! What Treatment Should I Follow?

Just sitting here I realize that I have been so very, very blessed. Last month I was able to get together with all my sisters and see my mother. It wasn’t until I was there doing some of the things that, as I was doing them, I realized I hadn’t been able to do in a decade! It was a great eye opener for me. The things that my family thought was crazy, that I did, I did because I COULD! Fantastic!!!!

In the meantime, unbeknownst to me, I had a few calls at home from a few that were having a very difficult time in their battle with Lyme Disease. Messages that were awaiting for my return home from those that were discouraged if they’d ever get better or feel well. Since my computer had crashed and I had lost my hard drive, I wasn’t able to locate their number to call or return their calls. I felt horrible, then it dawned on me that I could use the support group forums to contact them!

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Release Anger and Bitterness. It Will Help You

frustratedI am sharing this with you because, unfortunately, there are those that have also had bad experiences with doctors as well as many Lyme victims. Through your anger and bitterness you often group those people together as one. During my horrific journey, I was tempted to become one of these people. Thank goodness I was able to work through that and have become stronger. I know it would have been a detriment to my health and my soul to continue to harbor those feelings of anger and bitterness. For those of you in this vicious stage or cycle, I hope you are able to release it and let it go. As with anything, there are people that are good at what they do and there are others that, well, could be better, that is, if they chose to listen and be open in the very dynamic field of medicine.

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Amber Theory: Sound Familiar?

exclamationAmber Theory — Sound familiar?

The facebook page of Under Our Skins couldn’t have expressed my sentiments any better.  I’ll let you be the judge by adding some supporting evidence to this blog.  It will include information by Dr. MacDonald and Dr. Sapi. 

“Based on one patient, IDSA’s Gary Wormser proposes “amber” hypothesis of dead Lyme spirochetes encased in “collagenous matrix” as cause of chronic Lyme arthritis. Is he laying the groundwork to undercut (and eventually claim credit for) the biofilm theory as proposed by UNDER OUR SKIN’s Alan Macdonald and others?” ~ Under Our Skin film

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Lyme Disease Activists, A Threat to Public

exclamationThe Lancet Infectious Diseases, Volume 11, Issue 9, Pages 713 – 719, September 2011, Antiscience and ethical concerns associated with advocacy of Lyme disease summarizes the abstract as follows:

“Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. …” Stating that some “activists” describe Lyme disease as follows:

“Geographically limited tick-borne infection”

As “insidious, ubiquitous, difficult to diagnose, and almost incurable”

And “disease causes mainly non-specific symptoms”

And it can only “be treated … with long-term antibiotics and other unorthodox and unvalidated treatments”

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My Response to “Sen. Blumenthal’s needless Lyme disease act”

capitolThis is the Letter to the Editor at theday.com that I submitted. 

In Sen. Blumenthal’s needless Lyme disease act, July 24, 2011, I noticed the remark about risk-taking. “It’s not as if anyone is in favor of Lyme disease.” If Lyme Disease was so clear cut then why was the panel to review the controversial subject of treatment for this disease “stacked” in favor of the IDSA? If there was nothing to worry about, then would it not make sense to include professionals from both sides of the issue evenly distributed among the panel? The speakers in the IOM process did not include any physicians from the International Lyme and Associated Diseases of which many were very familiar with the key issue-Lyme Disease. They also had published in peer-reviewed journals and conducted clinical research.

Why is it that Dr. Wormser was the only person that was able to address the main issues? Why were there no opposing viewpoints able to be presented?

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Banning. Censoring. What Are They Trying to Hide???

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“PBS blocked the showing of this film in Minnesota”

Not too long ago, I read an article,Long-Term Use of Antibiotic to Treat Acne Not Associated With Increased Bacterial Resistance, Study Finds; itreally bothered me. This article coupled with the fact that May was just a couple weeks away, just made me seethe. Why?

May is Lyme Disease Awareness month.

This is when many of those that are still suffering with Late Stage Lyme Disease and chronic Lyme Disease gather all their strength, energy, family and friends in hopes that they may end what they feel is misinformation regarding chronic Lyme Disease that is being disseminated within the U.S., Canada, and other countries.

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