Lyme Disease Support Group

Replied By: lymehope on Apr 15, 2012, 7:07AM

Dr. Phil,

Another devastating aspect of Lyme is how it affects children in school.

Because there is such a lack of awareness in the medical community, there is also a lack of understanding and awareness amongst educators in our school systems.

I had to BATTLE our school district to get the accommodations needed for my daughters, which is the last thing I needed to be doing when trying to deal with all of the other challenges that come along with Chronic Lyme.

One of my daughters was a straight “A” student when she began high school. By the middle of her sophomore year, when I finally got the school district to understand she had severe cognitive decline.

When the school psychologist tested her, her IQ was in the 50’s or 60’s! Thank God some of that has moderated, with long-term treatment (4 years) but, she still has great difficulty—and is now in special ed.

Here are some sites I found helpful with regards to educating children with Lyme.

http://www.lymefamilies.com/wp-content/uploads/2009/07/ How_Lyme_Affects_Learning.pdf

http://www.anapsid.org/cnd/diffdx/rissenberg.html

http://www.lymediseaseassociation.org/index.php? option=com_content&view=article&id=231:rhode-island-school-nurses-association&catid=12:lyme-in-the-schools-&Itemid=147

http://www.ilads.org/files/ publications_pediatric_school_psych.pdf

http://www.mentalhealthandillness.com/Articles/ LymeDiseaseAndCognitiveImpairments.htm

http://www.lymediseaseassociation.org/index.php? option=com_content&view=article&id=530:controlled-study-of-cognitive-deficits&catid=12:lyme-in-the-schools-&Itemid=147

http://www.n-e-t-s.org/Shea-Leventhal%20Role%20of% 20Neuropsych%20Testing%20LD.pdf

Lyme affects every aspect of a person’s life—then add on to it, being a young child or a teenager—a WHOLE other dimension is added.

Thank you for doing a segment on Lyme.

But, I plead with you to follow up by doing more shows revealing the devastating effects of it—and how those seeking treatment, and support are often being turned away—It is a medical and societal travesty.

by poster, LYMEHOPE

Post edited by: Bettyg, at: 04/16/2012 02:19 AM

Replied By: lonestarlyme on Apr 15, 2012, 7:10AM - In reply to pmervine

Thank you Phyllis for your all you're ongoing efforts. I am very grateful for it.

Yes, unfortunately it's true. The CDC has already taken sides; the WRONG side and it's not our side.

Eleanor

************

CDC has already taken sides.

By: pmervine on Apr 15, 2012, 12:19AM

In the uncensored clip of discussion after the show, Dr. Phil suggests that the Centers for Disease Control (CDC) take a strong stand to solve the problems of Lyme.

He is apparently unaware that they already have decided to endorse the guidelines of the Infectious Diseases Society of America even though government agencies are not supposed to take sides.

They have refused to give equal time to the other standard of care from International Lyme and Associated Diseases Society (ILADS.org).

Gary Wormser, lead IDSA guidelines author, is a top recipient of CDC funding, having received $300K last year.

As most Lyme patients know, the IDSA guidelines restrict treatment to 2 to 4 weeks of antibiotics, regardless of whether the patient recovers.

As often happens, they either are not well by the time their antibiotics run out or they relapse soon thereafter.

Dr. Auwaerter, who appeared on the show as the IDSA's spokesperson, is one of the authors of the IDSA guidelines.

The IDSA belief is that even if long-term treatment helps patients, because long-term treatment doesn't always CURE people, it should not be given to anyone.

IDSA does not believe in giving patients a choice.

What if we treated patients with cancer that way?

IDSA recommends an ELISA test that misses at least half the cases for screening.

Experts from Johns Hopkins have said it is not sensitive enough for a screening test (99% is desirable).

The World Health Organization recently condemned a similarly insensitive TB test as "unethical." When are they going to condemn the ELISA?

The result is as Dr Phil said. The insurance companies make out like bandits.

They can deny care to the most ill, most expensive patients (except in Rhode Island, the only state that has managed to pass a law requiring that insurance companies provide coverage for whatever treatment the doctor orders).

What Dr Phil didn't say is that the true costs of job loss, bankrkuptcy, disability, healthcare, special accommodations etc. are then passed on to the taxpayer.

This doesn't even count human pain and suffering.

The people who stand to gain financially should not be the ones calling the shots.

Phyllis Mervine

LymeDisease.org

Support and information for people with Lyme

Replied By: pmervine on Apr 14, 2012, 11:47PM

If you are looking for support and information about Lyme disease, please join other patients and caregivers in your online state group.

Find yours by going to

http://health.groups.yahoo.com/group/statenamelyme.

Phyllis Mervine

LymeDisease.org

Thank you Dr Phil and Dr Dr. Chitra Bhakta

Replied By: lisahilton on Apr 14, 2012, 10:06PM

I'm sure you are catching a lot of slack for doing a show on Lyme Disease Dr Phil, and I'm sure Dr Bhakta is putting her license at risk for admitting she treats with long term antibiotics.

But thank you for bringing this to the forefront. It has been a long road for us Lymies who have been out there for years trying to get a show done about Lyme Disease.

I can't even begin to explain the feelings seeing it on tv after all the lyme walks, protests, lyme awareness blogs and websties..mailing and letter campaigns to drs....that all of us sick with Lyme have been doing for years now.

Thank you so much for taking Kathy seriousy. You don't know what this means to thousands of us who were at home watching.

I made this video for you.

http://www.youtube.com/watch?v=rwfUhV7D0IM

4.44 minutes

Maybe it's silly, I don't know but I had sooo much emotion after the show I had to let it out somehow. I hope you know how much this show meant to so many of us.

Post edited by: Bettyg, at: 04/16/2012 02:37 AM

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 contact me 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!

Post edited by: Bettyg, at: 04/16/2012 03:02 AM

By: tracywill9 on Apr 12, 2012, 10:44PM

Living in Connecticut, my husband and I were successful, upper middle class professionals before a tiny tick took us down.

In our early forties, we both became completely disabled by Chronic Lyme Disease.

We went from being hard working, successful people who took our children on tropical vacations every year, exercised regularly, and were active in our community, to two parents who can no longer work and spend most of the day in bed hooked up to IV infusions, or going to doctor appointments.

We take more medications than you can count, instead of traveling on exotic vacations every year we worry about how we will make our mortgage payment and when we'll be able to buy food next, and worst of all, our kids both got sick, too.

Living on 26 wooded acres in Connecticut, it's almost a given.

Our beautiful "retreat" from the daily grind of the working world had become the place where our enemies attacked and disabled us. The beautiful deer we loved to watch in our yard were the carriers of the ticks.

Your show is critically important, because Lyme Disease is the ONE disease everyone in America is at risk for, no matter where you live or what you do. Anyone can get it.

Everyone needs to know how to recognize the signs and how to protect themselves and their children, and most of all, how to advocate and navigate the medical system.

Thank you, Dr. Phil. This is the most important medical issue facing America today...it's an epidemic and no one is immune from it.

: aperture on Apr 13, 2012, 9:44AM

First, I must say that of all of the Lyme sufferers out there, why was it necessary to highlight one who uses "whip-its' to numb the pain?

This is not typical for any Lyme patient and can cause serious neurological damage. Obviously, using 98 whip-its a day is dangerous and can lead to death.

_

People all over this country are struggling, going bankrupt trying to get treatment for a disease that is being overlooked by the medical establishment.

I was successful and intelligent. In 2002, I graduated summa cum laude from the University of KY. I worked in Social Services for the State of KY for several years...until I became disabled.

Lyme Disease has taken everything from me: my health, my ability to work, my husband's health and tried to take my son's health.

Lyme disease does its damage then it's only in hindsight that you realize what was going on.I

n 2006 I started having extreme fatigue for no reason.

I was exhausted. The Drs said I was fine, my labs were normal...that I was just depressed. I knew I wasn't depressed.

However, I started believing the Drs and thinking I must be truly crazy.

By 2007 I was on Social Security Disability and the Dr wanted me to have ECT due to "hypersedation" due to my "depression". Thankfully, I refused.

Unknowingly, my body was fighting off chronic, low grade infection for years.

If the fevers didn't start, I would have gone on thinking it was all in my head for the rest of my life.

In March 2011, I started having daily fevers for no known reason. Very weak, sensitive to light/sound.

Even started OT for sensory integration at 37 yrs old!

Also started vision therapy...not realizing that these were all symptoms of chronic infection affecting my Central Nervous System.

3/30/11 Dr removed Gallbladder to see if that was cause of fevers..did not help. Sent to Infectious Disease Dr. He ran many tests. Could not figure out what was wrong.

6/11 felt like going to collapse, so weak. Infectious Disease Dr tested for tick-borne illnesses. Came back positive for Ehrlichia.

Went on Doxycycline for 2 weeks. Felt worse, then had a great 2 months. Was able to function and go to gym 3 x/week.

The night I was diagnosed with Ehrlichia, "Under Our Skin" was on PBS. I thought nothing of it and kept it in the back of my mind.

By Sept, slowly daily fevers returned. Went back to the Infectious Disease Dr in Oct. He didn't know what was wrong and wanted me to see a Rheumatologist. I watched "Under Our Skin" again and saw the girl with twitches and neurological symptoms from Lyme. I then thought maybe Lyme had something to do with my suffering.

I tried to get an appt to see a Lyme Literate Medical Dr in Nov, but all had at least a 5 month waiting list.

One night, I was really struggling, my temp was high, my shoulders and neck hurt and the brain fog was so horrible, I felt like my brain was literally slowly slipping away. I prayed to God to please help me.

The next morning, I emailed a Lyme Dr and she got me in the next week. I went to her as a shot in the dark.

Turns out my body has been fighting infection probably for several years. The fatigue and exhaustion that other Dr's said was "Depression" was actually my body fighting off Lyme and other infections.

I also tested positive for Brucella. This can be contracted through drinking unpasteurized milk (which I was exposed to as a child). I started treatment.

I kept thinking that maybe my 2 year old son's sensory symptoms and autism traits may have something to do with my having Lyme.

I was sick throughout my pregnancy. Like the mother on "Under Our Skin" who gave her son Lyme unknowingly during pregnancy, looking back I was not a healthy pregnant mom.

In Dec, I had him checked and sure enough he was positive for Lyme as well. He started on antibiotics and miracles started happening. He now makes eye contact and speaks in conversational sentences.

Prior, he would line up his toys, ignore his preschool classmates and repeat "Thomas and Percy and James" over and over.

Over the years, my husband, has had many health problems.

In 2010, he was diagnosed with Retroperitoneal Fibrosis which is pretty much concrete growing in his belly trying to crowd his organs. He now sees a Urologist at Vanderbilt.

In October 2011, he started having boils on his body and his achilles tendons both tore for no known reason. The ER thought he had MRSA, but the test was negative.

The Oncologist thought he had cancer and scanned his body...all negative. He was scoped from top to bottom, all normal. We had no idea what was going on.

In November, he saw a Rheumatologist at Vanderbilt, she did not know what was happening to him. She said he was "interesting" and sent him home with something similar to Advil.

His Dermatologist tested the skin lesions which now resembled large ulcers on his legs. She could not figure out what was wrong.

She called it Pyoderma Gangrenosum. She put him on Steroids and Cellcept to shut down his immune system.

Each night, I had to stuff the ulcers with saline gauze then tear it out the next morning. This was pure torture for him. He was in such pain that he would sweat and shake for hours afterwards even while on painkillers.

He had seen an Oncologist/Hematologist, a Rheumatologist, Urologist, Dermatologist, Gastroenterologist, Orthopedic Surgeon...and on and on with no answers.

Knowing by now that Lyme can mimic many other diseases and that it can manifest in different ways in different people, I scheduled him to see the Lyme Dr in January.

His Lyme test was extremely positive. He was very sick with infection and the Dr's here had already shut down his immune system thinking it was all auto-immune.

He was put on several antibiotics and weaned off of the steroids and Cellcept. His lesions began to heal.

However, new lesions are now growing on his legs and his achilles have not healed.

He has been on sick leave since 10/21/11.

He has a job a held until 10/21/12 as long as he continues to provide Dr's notes. We are still on a long journey to regain our health.

I kept getting worse and worse with treatment. It turns out that I have a gene that prevents my body from getting rid of toxins and medications, etc.

The Lyme Dr I was seeing put me on a medication that nearly killed me...I got caught in a horrific cytokine storm.

My husband called a Lyme expert in NY who had a 1 year waiting list and begged him to see me. He agreed to see me the next week, but we had no idea how we would get the money.

My family is broke. My relatives on my side of the family are paycheck to paycheck folks.

My husband's family had reached their limit and did not want to even humor the idea of my going to NY for some Lyme Dr.

However, when it came down to life and death, my 80 year old dad who lives in a nursing home emptied his bank account..a whole $400 to help.

My 72 year old mom who still has to work FT to make ends meet did the same.

The absolute worst point in my life came when my husband and I pawned our wedding rings on the way to the airport.

Nothing else matters if you don't have your health.

We had a one way plane ticket and rode Greyhound for 25 hours back (both of us sick with Lyme, me carrying my bag full of supplements and heavy metal test kit the whole way).

However, it was the best decision I ever made. I left there with hope.

I realized that my condition was too complicated for the other Dr to ever get me well.I also realized that my husband needed to get to the NY Dr in order to have a shot at health.

Lyme is considered a disease for the rich. It is being ignored by the medical establishment and most expenses are paid out of pocket.

Therefore, if you have money you have a shot at regaining your health. I refuse to let be the case with my family.

Lyme has taken everything from me, my health, my ability to work, my ability to care for my own children (My son has to go to daycare because I am too weak to care for him), my husband's health and it tried to take my baby's health.

Please, everyone watch "Under Our Skin". It's free on Hulu.

http://www.hulu.com/watch/268761/under-our-skin

Also, if you know a child with Autism or sensory problems, please check out : http://www.lymebook.com/lyme-autism-connection

Many people are walking around with medical problems that Dr's cannot figure out and it's because they have a tick-borne infection. Chronic Fatigue, Fibromyalgia, MS, ALS, the list goes on and on.

Lyme does not just happen in the Northeast and does not just cause swollen knees and a rash. It affected 3 people in my family and we all had different symptoms...none of which would have ever screamed "Lyme.

Stories similar to mine are being repeated over and over throughout our country. People are very sick and are being told they are fine and it's all in their head.

This is a tragedy. This should not be happening the the United States of America.

With any other disease, marathons are run in order to help patients afford treatment. With Lyme Disease, patients are left on their own and cannot even utilize health insurance benefits to get well.