posted
We need your support for Bill SB596! Lyme Disease is "America's New Threat" being the fastest growing Infectious Disease in our Country today; claiming victims and devastating families emotionally and financially everyday in Maryland.
We are here, fighting for recognition and support, due to the following, but of course not limited to:
1. Gross misinterpretation of CDC guidelines & testing protocol by most Physicians & Insurance companies; 2. Inadequate testing being provided (if at all); 3. Inadequate treatment being provided, by most Physicians, due to the above 4. Lyme Literate Physicians being harassed by Medical License Boards for long-term antibiotic treatment, which have proven to be beneficial and save lives;
It should be considered criminal for a physician to order & acknowledge a test with results known to have a >70% false-negative result (ELISA) as a protocol/method of "ruling out" a debilitating & deadly disease. And so my Lyme Disease story begins. Because numerous Physicians in Maryland failed to recognize my many Lyme Symptoms, for the past 5 yrs, and failed to provide me adequate testing, and failed to provide adequate treatment, I am no longer able to function in society as a productive citizen. I'm 40 yrs. old and have owned and operated a successful Landscaping business for the past 15 yrs., however, effective Jan. '05 I am unable to work and was forced to close my business.
1. Visiting 7 Dr.'s over the last 4 yrs., in Maryland, ranging from a Dental specialist, Internist, ENT, Gastroentologist, and Neurologist(s) not one of them acknowledged my current, or past, history of having Lyme Disease symptoms; not one of them ordered a Western Blot test; not one of them ordered testing for other known tick-born co-infections (i.e., Babesia, Erlichiosis, Bartonella etc.); only 2 out of the 7 ordered the standard ELISA Lyme Titer, which is now evident to be the cause of my demise. Not even 1, out of the 7 Dr.'s, ordered further testing over and above the standard ELISA test.
2. My Lyme Disease has gone undiagnosed and untreated for 5 yrs. due to the negligence of our medical community, and as a direct result of CDC's misinterpreted guidelines & treatment protocol. As a result, my Lyme Disease progressed to a level that has affected my ability to walk and talk as I used to, my overall strength has diminished to the degree of nearly needing a wheel chair, difficulty with easy tasks as unscrewing the gas cap of my car, climbing stairs nearly impossible unless there's a handrail or I crawl, unable to speak clearly due to slurred speech, etc.
3. I was given a death sentence in July '04, diagnosed with ALS (Lou Gehrig's disease) by a Neuro at GW, with a 2 to 5 yr. life expectancy; the Neuro led me to believe he "ruled everything out", looked me & my wife square in the eye and said, "you do not have lyme disease"; we didn't find out until months later, when I requested copies of all of my lab work & testing, that this Neuro didn't even order any form of Lyme Disease testing before telling me I was going to die.
4. Refusing to quickly accept an ALS death sentence, in early August '04, I found a Lyme Disease specialist in PA. To hell with the ignorant Physicians in Maryland, who refused to acknowledge we live in a Lyme Endemic area, refuse to educate themselves for the well being of the patients they treat, and refused to actually acknowledge my many symptoms, so I went out of state for hope in saving my life.
5. August '04, less than 30 days of my ALS diagnosis, my Lyme Literate Dr., in PA, received comprehensive testing results back clearly indicating multiple Positive results for Lyme Borreliosis, including meeting the CDC criteria (5 or more bands testing positive), as well as borderline positive for Babesia and Erlichiosis. I am on record with CDC for testing Positive for Lyme Disease.
6. 7 mos. now on antibiotic treatment (for all associated tick-born related infections), I cannot say I'm fully recovered yet, but I can definitively say, I'm on my way & feeling better, much to the surprise of my (lame/ignorant) Neuro who expected me to be on a feeding tube and breathing device by now. So many symptoms I had for years are all gone, reversed, thanks to the adequate testing and treatment by a Lyme Literate Physician.
7. The cost to me and my family? Maybe the monthly mortgage payment on some Physician's/Neuro's beach houses would compare. Yes, this disease could Bankrupt most families because Insurance companies are refusing to cover claims for adequate treatment necessary, and will not cover Dr. visits associated with long-term lyme care. Can you put a price on loss of life as you know it? Can you put a price on the inability to earn a living?
8. It is yet another tragedy, and appalling, that an Insurance company can determine a patient's course of treatment and override your treating physicians' recommendations.
Is it not enough to read the facts about the similarities between the Lyme bacterium (spirochete) & the Syphilis spirochete? Every professional related to the medical field, as well as the political arena, should be ashamed of themselves for the inadequacies of research & medical treatment provided for this disease. If money truly is the root of all evil, it is apparent there is more money in research (even if misplaced), than there is for a cure, which makes way for evil to prevail. It is blatantly obvious our technology has the means to treat and help people with Lyme Disease, and it's just as obvious they are turning their backs on those suffering.
If the only way to make a difference to change Policy is to have each and every one of YOU, and/or a loved one, infected with Lyme Disease, then I wish it upon all of you. If you fail to acknowledge the devastating, life-altering and sometimes deadly effects of untreated lyme disease, then I imagine you would have no reservations about being injected with the Lyme bacteria/vaccine - that was pulled by FDA. I dare you.
If you believe Lou Gehrig died from ALS, a person that vacationed in Lyme, CT regularly, then you need to read more. If you believe DNA to be sufficient legal evidence to impose the death penalty on a person, then you should recognize DNA as an accurate measure of testing for Lyme Disease and associated tick born infections. Educate yourself before having an opinion.
Sincerely, Another Lyme Disease victim in Howard County, MD Posts: 94 | From Maryland, USA | Registered: Jan 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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YES!
Needless to say I am close to total exhaustion right now.. but this letter had me bouncing up and down in my chair.. and smiling.
Of course I know the folks at the hearing who know me will be holding their breaths waiting to see if I will GO FOR IT.. or if I can keep my "cool" long enough to make a "politically correct" point.
KNOWING your letter is in their face might.. and I said MIGHT... make it possible for me to "be nice".
Very well said and just PERFECT!
THANK YOU up there in Howard County!!!
See me clapping my hands and singing YA-HOO!
And most of all..
I hope you feel better soon.
------------------ If you get the choice to sit it out or dance...
If nothing else, we made you smile and perhaps others as well! We live 40 min. from Annap. we'll be there 3/10, and 3/11 if necessary. What's going on 3/11, do you know?
My wife and I were hoping to hear from you. Your posts, as many do, help give us the strength to be heard and to keep up the good fight!
Thank YOU!
Posts: 94 | From Maryland, USA | Registered: Jan 2005
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ALSLYME, WOW, what a powerful email you just wrote above! It really touched my heart.
A Des Moines Register newspaper columnist was recently diagnosed with ALS. His wife was in town last weekend. I left an email I'd typed up with info on LYME disease western blot igm & igg blood tests plus some other ALS/LYME web sites for them to check out. I wanted to make sure he'd been tested.
Glad you WILL be able to go; are YOU speaking also? Would be powerful to hear you personally.
For us late-stage lymies, could you help us all out? Could you edit your 1st post and make shorter paragraphs of 6-8 lines of text?
With our severe brain fog, we just can't comprehend things and concentrate.
We don't want to miss out on important stuff, and the chance to contribute where we can.
Thanks for sharing your most informative letter above. If this ALS dx man from Des Moines contacts me, I'm going to show your web site post for this post so perhaps the 2 of you can start an off line private messages.
Betty G., Iowa
Posts: 1 | From US | Registered: Aug 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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Good to hear you all will be there!
As for the second hearing... whew...
We are trying to get some of the speakers to stay in Annapolis.. or return... but it is VERY hard to do with folks so sick.
I think the second hearing may be more low key.
Yes.. we would like to have a LD task force... which is what that bill does.. and it will help for the future needs.. but it wouldn't provide IMMEDIATE help for folks like the first one... cause it talks about making plans.. and we wouldn't report back our findings for a year or so.
We need it.. for sure. But not sure it is the one that will get us some relief now.
I think that bill is a punch them in the nose after the fact.. and make them listen.. and make them BEE-HAVE... kinda thing.
Yes.. and I am suppose to sound "good" when speaking there? HA!
Looking forward to meeting you all there. I will be the one in the back corner crying...
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