The lyme community needs to voice to the Dr. Phil Show both thanks for addressing this issue as well as making our presence known through comments in order to show that YES, this was well worth their time to do a show on Lyme disease. The need for subsequent focus on this issue is likely to be based on the response they have from the public.
EVERYBODY, please go comment! Thank him and explain what has happened to you. Make the need for help known. Get your friends and family members to comment as well. THIS IS YOUR CHANCE.
There are ONLY 16 comments on the show as of right now.
-------------------- No action, no change. Limited action, limited change. Lots of action - Change occurs. - Catherine Pulsifer
When you jump for joy, beware that no one moves the ground from beneath your feet. - Stanislaw Lec Posts: 28 | From Earth | Registered: Apr 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I have read that Brooke says the taping went well, but still, how do we know how to voice a reply until we can see the segment? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
For right now, up until the point of the show, I think it's important to simply tell your story. Make the number of people that have this disease known.
-------------------- No action, no change. Limited action, limited change. Lots of action - Change occurs. - Catherine Pulsifer
When you jump for joy, beware that no one moves the ground from beneath your feet. - Stanislaw Lec Posts: 28 | From Earth | Registered: Apr 2012
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i am so nervous that this episode is going to do more harm than good.
i can already here people start asking me about MY blood test results and start to question me..
Posts: 442 | From usa | Registered: Oct 2010
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Here is what I commented on the Dr. Phil website. I also emailed. He needs to know that there are masses of people out there suffering from this disease, and that we need his help. This is the foot in the door, and that's how it starts.
"Dr. Phil, Thank you so much for doing a show on Chronic Lyme Disease. This illness doesn't have to be chronic at all. It should instead be called underdiagnosed, misdiagnosed, improperly treated, and improperly researched Lyme Disease. I have never known such a horror as living with Late Stage Lyme Disease. This disease has literally been politicized beyond recognition at the expense of patients, who are bound by insurance who won't pay and doctors who are miseducated and not properly educated on how to recognize the disease by it's 120+ symptoms. Most only come to know about what Lyme Disease can do to you because they find themselves living with it. By discovering one scary symptom after another, and living through your own desperate search to find out what is wrong, confronting your own mortality, and a horrific experience of suffering no individual should ever have to live, you eventually find out that the cause is Lyme Disease. This path has been a long and winding nightmare I cannot wake up from, but some day I hope to get well as I refuse to die at the hands of this bacterial monster. Life is too precious to die before I've finished college, married, had children, or lived the milestones one should be able to live in life. So MANY people in America live with this disease. Most do not hear from us or see us because we are too ill to leave our houses, and many of us suffer/or pass away with misdiagnosis' of ALS, MS, Early Onset Parkinson's, Fibromyalgia, Inappropriate Sinus Tachycardia, Postural Orthostatic Tachycardia, Anxiety Disorder, Depression, Lupus, or the worst misdiagnosis of them all, the belief that our suffering is Psychosomatic or a Psychogenic Conversion Disorder. The Lyme Disease patient suffers in two ways, physically, as well as mentally. Our bodies are torn down and made to feel like a living hell, while we are simultaneously made to feel that what we feel is not real, that there is no explanation, that we are less than human. A dog can adequately diagnosed with Lyme Disease as well as treated due to the quick diagnosis, but humans find themselves with no answers, a great deal of suffering, and with many, abandonment by their physicians who cannot make the proper diagnosis of Lyme Disease. Many doctors and the public are simply unaware that such an illness exists where symptoms rotate in a weekly to 6 week cycle, in which rotating symptoms is a NORMAL presentation of the disease due to the 6 week life cycle of the bacteria which causes Lyme Disease. Lyme Disease is something everyone should know about, as no one is safe from contracting it, and they are no safer from a misdiagnosis or no diagnosis at all which can be followed by years of profound suffering with permanent damage left to the body or death. Lyme Disease is so much more common than we are aware.
Long term treatment works. There is no study EVER published showing that 1 month of IV antibiotics is sufficient as is recommended by the treatment guildelines. No person would put themselves through the rigors of treating Lyme Disease with long term antibiotics if it did not help, if it wasn't the only hope of getting well again and getting their life back. And it does work.
I am young. I suffer with the unfortunate and preventable illness of Late Stage Lyme Disease. My life is so unfinished and yet I wonder every day if I will live to experience finishing college, a marriage, or even being able to step back into the normal world as a healthy individual. I have been housebound for the last 10 months straight except for doctor's visits. I'm scared to go to sleep at night because I never know if I will wake up in the morning. I've contemplated writing letters to those I love because I simply do not know if this will kill me before the antibiotics start to win the battle. I have faced all of this while seeing over 72 doctors who didn't know what was wrong with me, while trapped in my house sicker than I ever could have imagined, while living a nightmare that didn't have to be. It's like dying while you're still on earth. Somehow, the world keeps turning, and everything about your life becomes this stagnant, backwards, slipping and falling while everyone else and their lives keep going. We hang on for dear life not because we are brave or extraordinarily courageous, but because we have to, because we didn't get to choose what tore us down and tried to kill us, because aside from suicide, you don't get to choose how or when you die, You don't get to choose what ailment affects you, OR what treatment cures it. I can tell you this...I would much rather be healthy, living, loving, and experiencing normal life right now than fighting Lyme Disease.
Dr. Phil, Lyme Disease patients are the patients nobody sees. We are invisibly evaporating from life. It's a club I didn't want to be in, and I'll keep my friends when I'm done with it but I certainly want out of this club. I want to be a member of a new club, the one called Lyme Disease Survivor.
I have yet to see the show, as it airs tomorrow, but I thank you for giving us a voice, for bringing knowledge of the existence of Lyme Disease to the homes of many across America as they need to know for their own sake how to recognize the illness. Lyme Disease is an illness I would have difficulty wishing on my worst enemy. We are suffering so greatly, and WE NEED YOUR HELP. We so desperately need your help.
How can you help? + Through segments like this show. Followup segments on Stephanie's progress (expect it to be 3 years of antibiotics before she is completely cured...this seems to be the common trend with patients.)
+ Help us tell our stories as well as voice proper knowledge of Lyme Disease through the media. Connections with Newspapers, tv shows, commercials, billboards, nationwide advertising on how to recognize the illness, etc. would be tremendously helpful.
+ Help us educate the public through grass-roots efforts.
+ Help us gain funding (through organizations such as Turn The Corner (turnthecorner.org) and CALDA (lymedisease.org) for research. Proper research on formulating a new antibioitic for the treatment of Lyme Disease and adjunct medications that would more efficiently kill the bacteria in the body and pass the blood brain barrier, as well go towards the development of adjunct medications with the ability to lessen the effect the dead bacteria have on the brain (counteract the release of neurotoxins from the Lyme bacteria) would be the key to getting people well. This could in turn save the US a LOT of money in health related expenses.
+ Help us spread awareness and gain moral support for patients through the development of organizations that support us morally and emotionally. The amount of moral support for Lyme Disease patients is nearly in the negative. Cancer patients, diabetes patients, alzheimers patients, and many other illnesses receive community support and encouragement. Lyme Disease patients almost always receive very little support, and it is not uncommon to receive no support, no knowledge of the illness, and many times the backs of people who are supposed to support and encourage them. Many patients are often faced with people saying "but you don't look sick." Imagine fighting a battle like cancer with the same lack of support. Lyme Disease patients suffer with no support every day, and our battle is profoundly difficult. Organizations, 5k runs, walks, rally's, lyme green ribbons on products, etc. would be extremely helpful in letting Lyme Disease patients know "it's ok, we have your back, you can do this."
Lastly, I would like to point out that suicide is the leading cause of death in Lyme Disease patients. This is due to a feeling of living with an uncured disease and the very long and taxing road (both physically, emotionally, and financially) that you must walk down to get well. It does not have to be like this!!!! We need the support and the research so we can get well, and live life as it was innately meant to be lived, for all individuals, not just for those who were unlucky enough to get Lyme Disease.
Below I have included a video of Christa Vanderham, who suffered with Lyme Disease. She got well with long term antibiotics. This is the suffering endured by many, invisibly, within their houses. THIS is why we so desperately need your help. http://www.youtube.com/watch?v=5bYdFoqQw18
* Note, I am not Christa Vanderham, but she is one patient who has been brave enough to tell her story, brave enough to reveal the realities of Lyme Disease.
-----
You may email me at " " if I can help in any way to spread awareness and subsequently get help for those suffering from Lyme Disease. I may be very ill with Lyme Disease, but I am one of the most determined individuals. I refuse to be anything less. I want action, so no one has to suffer as I and many others have, and still are. We need your help Dr. Phil!"
-------------------- No action, no change. Limited action, limited change. Lots of action - Change occurs. - Catherine Pulsifer
When you jump for joy, beware that no one moves the ground from beneath your feet. - Stanislaw Lec Posts: 28 | From Earth | Registered: Apr 2012
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posted
I am in awe wintertree. You summed it up perfectly...quite knowledgeable for only having posted 3 times
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
wintertree, that was one AMAZING letter to Dr. Phil. Thank you so much for summing it up so articulately the way you did. You seemed to cover so many needed bases to help make him understand what the Lyme community is experiencing.
I also sent him a 3 page letter telling him my long story and pointing out to him what the barriers are for diagnosis and proper treatment. I worked hard to compose it and also sent a revised version (without mention of Dr. Phil) to my state senators and representative so they will better understand this horrible illness and why we need their support.
If you haven't already, I would recommend sending a revised version of your letter to your state senators and representative to encourage them to support the following bill:
RE: H.R. 2557 SUMMARY AS OF 7/15/11 : Requires the Secretary of Health and Human Services (HHS) to establish the Tick-Borne Diseases Advisory Committee to advise the Secretary and the Assistant Secretary for Health regarding the manner in which they can:
(1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;
(2) identify opportunities to coordinate efforts with other federal agencies and private organizations addressing such diseases;
(3) ensure interagency coordination and communication with constituency groups;
(4) ensure that a broad spectrum of scientific viewpoints is represented in public health policy decisions and that information disseminated to the public and physicians is balanced; and
(5) advise relevant federal agencies on priorities related to Lyme and tick-borne diseases.
I saw the clip on You Tube of part of today's show and I am very hopeful that Dr. Phil is going to be an advocate for us. This show could be the turning point for changing the guidelines. I am so excited about this.
Posts: 2386 | From New England | Registered: Aug 2011
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-------------------- No action, no change. Limited action, limited change. Lots of action - Change occurs. - Catherine Pulsifer
When you jump for joy, beware that no one moves the ground from beneath your feet. - Stanislaw Lec Posts: 28 | From Earth | Registered: Apr 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
wow-there's way more than 16 comments now-aftr the show!!!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
743 to be exact, and counting. This is our chance guys. Be heard.
-------------------- No action, no change. Limited action, limited change. Lots of action - Change occurs. - Catherine Pulsifer
When you jump for joy, beware that no one moves the ground from beneath your feet. - Stanislaw Lec Posts: 28 | From Earth | Registered: Apr 2012
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Way to go, wintertree - beautifully written!
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
My input... Time is now if you want to speak up fellow lymies. This is a worst time for an epidemic to happen with the economy and country being in the gutter. It's time to stop this bacteria from spreading, speaking up makes a difference!
By the way anyone find full video yet of show on the web, if so pm me, only caught last 5 mins. Had a friend who DVR'd it, he kind of lives far away though.
"Surprised no one connected the dots with Stephanie's seizures/tics to the girls in New York with the tics, one girl in New York finally got a diagnosis of Lyme Disease, here's the article.. Last I heard of the other girls, they were improving on antibiotics. This mystery was all over the TV, people, doctors and scientists were dumbfounded. Now that one girl has found a diagnosis wouldn't you think it be'd aired on TV?
Also, if Dr. Phil does another show on Lyme disease, you should talk about the ones who have lost their lives. Like Lyme people who have committed suicicide and also killed by the bacteria. For instance Bruce Springsteen's band member Bill Chinnock committed suicicide because of Lyme, most don't understand how debilitating the bacteria is.
I live in Grosse Pointe Michigan and I have either gotten bitten by a tic fishing at Kent Lake in Milford or Stony Creek Lake in Rochester. And no I wasn't even fishing from shore line, I was fishing on a boat and still caught it. Yes Lyme disease exists in Michigan, even though most MDs and infectious disease doctors say it doesn't. I have four members of my family who have also caught Lyme. I went through hell just like everyone else getting a diagnosis, I had to make my own diagnosis through the Internet from a Canadian website Canlyme.com Mainly because they give more of the true symptoms of the disease rather than CDC's rather vague symptoms.
Due to 10+ illiterate Lyme doctors I've been out of work for 2 years, still after four months of antibiotic treatment by a Lyme literate doctor I still have fibromyalgia/arthritis in my hands, next to my other two disabling symtoms. This is what happens because of ignorance of Doctors and greed by health insurance companies, all it takes is a year for the bacteria to invade your joints and presto you are disabled. Been praying that my hands heal and I can go back to work as a webmaster! I'm now being treated by 1 of 2 Lyme literate doctors in Michigan, after a waiting list of four months. I'm still dumbfounded that the emergency rooms over in Michigan don't test for Lymes, I went to 8 or so emergency rooms and they did nothing for me. I guess it wouldn't matter anyways because the standard Lyme disease Eliza test is inaccurate. I had to send my bloodwork to Igenex California to come up positive, after a false-negative with the Eliza.
I think it's time to wake up, too many people suffering!!!
I hope those ignorant Doctors are enjoying their mansions on Lakeshore in Grosse Pointe!!!"
Posts: 267 | From MI | Registered: Oct 2011
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
logged in and left my 2 cents.. what was the treatment option other then antibiotics ? NONE..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
A lot of people with neuro issues might struggle with the registration process for DrPhil site. I did. I finally got registered, typed a summary of my story, thanks, asked for another show, then all of my post was lost when my laptop suddenly rebooted itself:/ Will try again tomorrow. Too exhausted from it now, but the show was a great start.
No disrespect intended to the patient who was a model, but I think they should have chosen a better representative. My relatives watched the show. What they said was her story didn't make sense to them with it showing her writhing around in the bed, saying it happened everyday, and then sitting on the show all made up looking what they felt was pretty normal:/ For them it was such a significant contradiction that it confused them.
It was apparent to me that she was struggling and visibly experiencing some seizure like movements during the show, but they didn't see that at all:/
The redemption came in what Dr Phil, DrB, Brooke, and DrPhil's staff person with Lyme said. Thank God for that.
They obviously had a time constraint issue, but if the DrPhil comment blog blows up enough with comments from all of us, he will see there is a need and interest in it for another show.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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quote:Originally posted by payne: logged in and left my 2 cents.. what was the treatment option other then antibiotics ? NONE..
Right! Like what did that prick Doctor Paul Auwaerter do with his patients after the standard for 2-4 week antibiotic protocol? that's what they should asked. Most likely he gave them some pain meds, turned them away and pointed them to specialty doctors for each symptom.
I don't know how some of these doctors can live with themselves. These aren't stupid people, yeah docs can be arrogant and ignorant but I can guarantee that many of them know they are lying through their teeth!
They just don't want the responsibility of Lyme patients plain and simple.
Posts: 267 | From MI | Registered: Oct 2011
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quote:Originally posted by jam338: They obviously had a time constraint issue, but if the DrPhil comment blog blows up enough with comments from all of us, he will see there is a need and interest in it for another show.
Exactly, 1000+ comments from lymies all over the country.
I highly recommend leaving the state you live in.
I think were getting to the point where the media can't keep turning a blind eye towards us lymies!
Bullsh!t updates about warnings of Lyme disease on the news aren't enough anymore, especially since most people don't know how debilitating the symptoms are.
People need to see with their own eyes the effects and be able to debate about it!!!!
Posts: 267 | From MI | Registered: Oct 2011
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< LymeFamily >>>>>,
TxCoord just posted on one of the sites about the show... I've had LD and Co's since I was a young teen.
All the usuals from the Duckters, 'Oh You have CFIDS, EBV, Fibromyalgia, suspected MS'... and so on.
We found out what it really was in 2006. So glad they did this show!
Jus'Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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But I disagree with what a lot of people have posted about her, both here and on the Dr. Phil Show comments.
This young lady is the perfect example of "but you don't look sick" Isn't this what so many of us are battling every day?
She bared her soul and let TV crews film her during her worst moments, and by anyone's account she looked like hell.
She didn't look "sick" on the show. If you were a beautiful young woman and a former model appearing on TV, wouldn't you want to look your best, sick or not? I sure as hell would!
It's so difficult to be that young and so sick. For her to maintain some sense of her previous self while still trying to look good is no doubt important to her.
Someone actually commented on the Dr. Phil site that she was wearing high heels and criticized her for it. REALLY? I noticed her shoes, and they were NOT high heels by any stretch. And if they were, so what?
Is she supposed to show up in orthopedic shoes with dowdy clothes, dirty hair, rumpled clothes and no make-up to PROVE she's sick?
HELL NO! Good for her that she looked so good on TV!
We don't know if she was on anti-seizure meds during the show. We don't know what went on before or after the show. We don't know if she was carried on or off the set.
To me, she appeared to be a proud young lady who was able to summon up enough self-esteem to show herself at her worst. And at the same time, she was determined to look her best on the show. Kudos to her.
I also think she was desperate to find help. She stated she spent tens of thousands of her savings on treatment. That money must have come from her modeling career as most her age don't have that kind of money to spend. For a young woman to be so independent that she could afford to spend so much on her medical care is mind-boggling. Kudos to her for saving her money and being so independent and self-reliant.
But as we all know, the money eventually runs out. So she's resorted to "whippets" or however it's spelled.
I can't criticize her for that. When you're in pain and have no other options, you do what you have to do to get relief and survive.
Instead of criticizing her for this, I think we should applaud her for exposing part of the reality that is Lyme Disease.
Kudos to Dr. "B" for her willingness to treat Stephanie pro bono.
Dr. "B" is an awesome doc to begin with. I am overwhelmed and grateful to her for bravely standing up for patients by appearing on national TV.
Thanks to Dr. Phil and his producer who is suffering with Lyme, Dr. "B", Stephanie and Brooke.
I look forward to "Part 2"
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
Breaking this up for easier reading by many here -
[QUOTE]Originally posted by wintertree: [qb] I've heard that Dr. B said it went well.
Here is what I commented on the Dr. Phil website. I also emailed. He needs to know that there are masses of people out there suffering from this disease, and that we need his help. This is the foot in the door, and that's how it starts.
"Dr. Phil, Thank you so much for doing a show on Chronic Lyme Disease. This illness doesn't have to be chronic at all.
It should instead be called underdiagnosed, misdiagnosed, improperly treated, and improperly researched Lyme Disease.
I have never known such a horror as living with Late Stage Lyme Disease.
This disease has literally been politicized beyond recognition at the expense of patients, who are bound by insurance who won't pay and doctors who are miseducated and not properly educated on how to recognize the disease by it's 120+ symptoms.
Most only come to know about what Lyme Disease can do to you because they find themselves living with it.
By discovering one scary symptom after another, and living through your own desperate search to find out what is wrong, confronting your own mortality,
and a horrific experience of suffering no individual should ever have to live, you eventually find out that the cause is Lyme Disease.
This path has been a long and winding nightmare I cannot wake up from, but some day I hope to get well as I refuse to die at the hands of this bacterial monster.
Life is too precious to die before I've finished college, married, had children, or lived the milestones one should be able to live in life.
So MANY people in America live with this disease. Most do not hear from us or see us because we are too ill to leave our houses,
and many of us suffer/or pass away with misdiagnosis' of ALS, MS, Early Onset Parkinson's, Fibromyalgia, Inappropriate Sinus Tachycardia,
Postural Orthostatic Tachycardia, Anxiety Disorder, Depression, Lupus, or the worst misdiagnosis of them all, the belief that our suffering is Psychosomatic or a Psychogenic Conversion Disorder.
The Lyme Disease patient suffers in two ways, physically, as well as mentally. Our bodies are torn down and made to feel like a living hell,
while we are simultaneously made to feel that what we feel is not real, that there is no explanation, that we are less than human.
A dog can adequately diagnosed with Lyme Disease as well as treated due to the quick diagnosis, but humans find themselves with no answers, a great deal of suffering, and with many, abandonment by their physicians who cannot make the proper diagnosis of Lyme Disease.
Many doctors and the public are simply unaware that such an illness exists where symptoms rotate in a weekly to 6 week cycle,
in which rotating symptoms is a NORMAL presentation of the disease due to the 6 week life cycle of the bacteria which causes Lyme Disease.
Lyme Disease is something everyone should know about, as no one is safe from contracting it, and they are no safer from a misdiagnosis or no diagnosis at all
which can be followed by years of profound suffering with permanent damage left to the body or death. Lyme Disease is so much more common than we are aware.
Long term treatment works. There is no study EVER published showing that 1 month of IV antibiotics is sufficient as is recommended by the treatment guildelines.
No person would put themselves through the rigors of treating Lyme Disease with long term antibiotics if it did not help, if it wasn't the only hope of getting well again and getting their life back. And it does work.
I am young. I suffer with the unfortunate and preventable illness of Late Stage Lyme Disease. My life is so unfinished and yet I wonder every day if I will live to
experience finishing college, a marriage, or even being able to step back into the normal world as a healthy individual.
I have been housebound for the last 10 months straight except for doctor's visits. I'm scared to go to sleep at night because I never know if I will wake up in the morning.
I've contemplated writing letters to those I love because I simply do not know if this will kill me before the antibiotics start to win the battle.
I have faced all of this while seeing over 72 doctors who didn't know what was wrong with me, while trapped in my house sicker than I ever could have imagined, while living a nightmare that didn't have to be. It's like dying while you're still on earth.
Somehow, the world keeps turning, and everything about your life becomes this stagnant, backwards, slipping and falling while everyone else and their lives keep going.
We hang on for dear life not because we are brave or extraordinarily courageous, but because we have to, because we didn't get to choose what tore us down and tried to kill us,
because aside from suicide, you don't get to choose how or when you die, You don't get to choose what ailment affects you, OR what treatment cures it.
I can tell you this...I would much rather be healthy, living, loving, and experiencing normal life right now than fighting Lyme Disease.
Dr. Phil, Lyme Disease patients are the patients nobody sees. We are invisibly evaporating from life. It's a club I didn't want to be in, and I'll keep my friends when I'm done with it
but I certainly want out of this club. I want to be a member of a new club, the one called Lyme Disease Survivor.
I have yet to see the show, as it airs tomorrow, but I thank you for giving us a voice, for bringing knowledge of the existence of Lyme Disease
to the homes of many across America as they need to know for their own sake how to recognize the illness.
Lyme Disease is an illness I would have difficulty wishing on my worst enemy. We are suffering so greatly, and WE NEED YOUR HELP. We so desperately need your help.
How can you help? + Through segments like this show. Followup segments on Stephanie's progress
(expect it to be 3 years of antibiotics before she is completely cured...this seems to be the common trend with patients.)
+ Help us tell our stories as well as voice proper knowledge of Lyme Disease through the media.
Connections with Newspapers, tv shows, commercials, billboards, nationwide advertising on how to recognize the illness, etc. would be tremendously helpful.
+ Help us educate the public through grass-roots efforts.
+ Help us gain funding (through organizations such as Turn The Corner (turnthecorner.org) and CALDA (lymedisease.org) for research.
Proper research on formulating a new antibioitic for the treatment of Lyme Disease and adjunct medications that would more efficiently kill the bacteria in the body and pass the blood brain barrier,
as well go towards the development of adjunct medications with the ability to lessen the effect the dead bacteria have on the brain
(counteract the release of neurotoxins from the Lyme bacteria) would be the key to getting people well. This could in turn save the US a LOT of money in health related expenses.
+ Help us spread awareness and gain moral support for patients through the development of organizations that support us morally and emotionally. The amount of moral support for Lyme Disease patients is nearly in the negative.
Cancer patients, diabetes patients, alzheimers patients, and many other illnesses receive community support and encouragement.
Lyme Disease patients almost always receive very little support, and it is not uncommon to receive no support, no knowledge of the illness, and many times the backs of people who are supposed to support and encourage them.
Many patients are often faced with people saying "but you don't look sick." Imagine fighting a battle like cancer with the same lack of support.
Lyme Disease patients suffer with no support every day, and our battle is profoundly difficult.
Organizations, 5k runs, walks, rally's, lyme green ribbons on products, etc. would be extremely helpful in letting Lyme Disease patients know "it's ok, we have your back, you can do this."
Lastly, I would like to point out that suicide is the leading cause of death in Lyme Disease patients.
This is due to a feeling of living with an uncured disease and the very long and taxing road (both physically, emotionally, and financially) that you must walk down to get well.
It does not have to be like this!!!! We need the support and the research so we can get well, and live life as it was innately meant to be lived, for all individuals, not just for those who were unlucky enough to get Lyme Disease.
Below I have included a video of Christa Vanderham, who suffered with Lyme Disease. She got well with long term antibiotics.
* Note, I am not Christa Vanderham, but she is one patient who has been brave enough to tell her story, brave enough to reveal the realities of Lyme Disease.
-----
You may email me at " " if I can help in any way to spread awareness and subsequently get help for those suffering from Lyme Disease.
I may be very ill with Lyme Disease, but I am one of the most determined individuals. I refuse to be anything less.
I want action, so no one has to suffer as I and many others have, and still are. We need your help Dr. Phil!"
**edited name of LLMD**
................................................
Very well said - you are a good writer - keep it up!
Posts: 13116 | From San Francisco | Registered: May 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Over 1,000 comments now
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
You can watch the Dr. Phil segment on Lyme disease here.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Not able to read what others wrote for the most part.
But, I do like the idea of including what state you live in.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
THE REAL PROBLEM DR PHIL DID NOT ADDRESS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Dr. Phil can do a show on it and it REALLY helps but nothing will get better until we stop ignoring the petitions and each do our little part to vocalize how we are being wronged. Too many people w/ lyme stay in hiding and it's hurting all of us.
I understand that we are all sick and hurting and it's even hard to read and register sometimes. But if you get a couple minutes of relief, please fill out a petition or make a quick vid and throw it on youtube.
We are sick as h3ll, have to pay for our own treatment, and get treated like crap. We don't need to hurt ourselves anymore by remaining silent.
Dr. Phil missed a big component, yes. And he is aware that it exists but maybe he doesn't understand people are dying from insurance companies not covering treatment and the collusion that's going on. He may just think we stay sick and that it's tolerable(and livable). I can't count the number of times I tell someone a symptom and they go "oh yeah, I have the same thing". ----No you don't.
you would think fellow lyme suffers would at least understand.
it breaks my heart that even the lyme community is criticizing her.
remember, people kill themselves from the pain this disease brings.
so what is she took whipets.
i'm sure that wasn't her ideal treatment plan.
she had to find a way to get through the pain, and eventually that was all she could afford.
Posts: 442 | From usa | Registered: Oct 2010
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
AlanaSuzanne is a font of common sense. We already SAW how awful she looked in her bed. Besides, nobody goes on Dr. Phil without makeup.
Who knows how she got on the stage? With her walker that someone whisked away? Maybe the point was " but you look good", which so many of us hear. She was obviously trying to hold it together so she wouldn't end up shaking on Dr. Phil's stage. Many Lyme victims will do all they can to hide how awful they really feel.
I've been where she is now, and occasionally still am. I pray Dr. B can help to improve her life significantly.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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quote:Originally posted by lymeladyinNY: AlanaSuzanne is a font of common sense. We already SAW how awful she looked in her bed. Besides, nobody goes on Dr. Phil without makeup.
Who knows how she got on the stage? With her walker that someone whisked away? Maybe the point was " but you look good", which so many of us hear. She was obviously trying to hold it together so she wouldn't end up shaking on Dr. Phil's stage. Many Lyme victims will do all they can to hide how awful they really feel.
I've been where she is now, and occasionally still am. I pray Dr. B can help to improve her life significantly.
- Lymelady [/qb]
- Agree... I always put up a good front .. whether I "should" or not. We have our pride, you know.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Katie, I am sure you can relate to her very much, because of your age. Hugs to you, and I hope you feel better soon.
Lymelady, I don't know if I'm a font of common sense, but thanks for the compliment! "Many Lyme victims will do all they can to hide how awful they really feel." -- so true.
Yes, Lymetoo, people do have their pride!
And I forgot to mention that wintertree wrote one heck of a great letter. Thanks for that wintertree. And thanks to everyone else who wrote to Dr. Phil.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Katie,
I feel for you and all those struck down at so young an age.
I couldn't read all of the above, but my thought was that they have make-up people on those shows.
So, they probably helped Stephanie get herself together.
To me, she looked to be sitting in an awkward way, like she had been postitioned in the chair.
Also looked like she was in pain, or at least very uncomfortable.
Those who have not dealt with this probably wouldn't pick up on the subtle things that we would notice.
I thought she showed amazing courage to put herself out there like that. She knew she would be criticized.
God bless her.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Yeah, she looked like she was in pain, both physically and emotionally.
Dr. Phil's pointed questions in the beginning didn't help, I'm sure. She was likely briefed and knew what to expect, but it still took a heck of a lot of courage to do what she did.
And eventhough she was all made up and looked pretty, it was pretty obvious that she wasn't the same person she was pre-Lyme.
Like Linky said, God bless her.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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