Joe
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bettyg
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breaking this up for neuros like me to comprehend & read ... bettyg
June 10, 2009
Daily Dose: Lyme Controversy
Wd_blogicon-health-barbara
Most people who get Lyme disease (transmitted by ticks) take a course of antibiotics and move on with their lives. But others seem to experience ``chronic'' Lyme disease, which can last their whole lives.
These people report problems ranging from dizziness and memory loss to severe fatigue, nerve damage and paranoia. The question: Is chronic Lyme disease real?
For now, it seems to depend on whom you ask. Most mainstream medical organizations say that there isn't enough evidence to support it, and that sufferers are either imagining their symptoms or developing other problems that are unrelated to Lyme. But there are some doctors and plenty of patients who believe this condition is very real and very serious.
A new documentary, Under Your Skin, addresses this controversy and explains why chronic Lyme disease just might be the next epidemic.
It's being released at the IFC Center in New York City on June 19th, and afterwards will be screened at different venues around the country.
Posted by WomansDay.com Editors on June 10, 2009 at 01:00 PM in Daily Dose | Permalink
Comments
Is it real?
4 members of my family have chronic Lyme. My sister and mom spent 18 months at a clinic- far away from home- my sister has a 5 year old she left behind. They were on IV antibiotics 7 days a week, and could hardly do anything besides go to the clinic and sleep.
My sister has had Lyme, Batonella & Babesioses since she was young- and it is destroying her life.
It's a joke that people question it's existence- they usually don't when someone they love gets sick with it.
My sister almost died- and doctors misdiagnosed her too -made her feel like she was insane.
more people need to be aware of this- to take precautions...
IDSA needs to change the guidelines so that people can get proper treatment and insurance companies will stop balking at the necessary costs- it's cheaper to treat it throughly at the onset rather than wait until it's migrated throughout the body and through every system.
THAT's what I can't believe is real!
Please write about it- to educate people, to generate more dialogue- to hopefully create some change in policies. Posted by: Allison | June 11, 2009 at 12:11 AM
Hi, saw you were speaking about Lyme via my twitter account. I saw the movie and it is worth the watching.
Some people have gone through so much with these pesky ticks. I feel for your reader that have encountered Tick Diseases.
Enjoy...Dawn Ginese, RN, TSN Posted by: Dawn Ginese, The Singing Nurse | June 10, 2009 at 11:08 PM
Myself and my three children have lyme. We travel hundreds of miles from home to get treatment for our children. Even the best chidrens hospitals refuse to help.
It is very scary that chronic lyme disease isn't recongnized in our country. Without treatment I believe I would not be here.
I am only in my 30's and hate to even think what my life will be like in another 30 years, and especially what the future holds for my children.
Thank you so much for considering putting an article in Womans Day. God Bless! Posted by: mother of 3 | June 10, 2009 at 11:05 PM
I have chronic lyme and so does my twin sister. We are both 50 and we've probably had it most of our lives. I've been in treatment for over three years and my sister for two. We are both slowly improving but it's a long tough battle.
I was a very successful sales executive before I had to quit work permanently a couple years ago. I hope to go back to work but right now I'm too sick.
We need more research for better testing, better treatment and a CURE. Too many people are suffering (most without a proper diagnosis) - especially the children.
Lyme awareness has been improving but we have a long way to go. Posted by: mary hopkins | June 10, 2009 at 10:56 PM
At a time in my life where I should be chasing after my 5 year old little girl and 1 year old son, I juggle the choice of do I to sit and play or go back to bed.
For 10 years I was told I had Lupus - then they said no sorry think it's MS. Now 25 years after my tick bite I go to a LLMD and realize I have and have had chronic Lyme. Is it real??
Come over my house and visit with me and my family. It's real. It's scary. It's a challenge on a good day.
Answers will come someday and less and less people will have to go through what I and others have had to endure our whole lives - the unknown. Posted by: M Wright | June 10, 2009 at 10:53 PM
It's been 40 yrs of Lyme for me. Reinfected years later, again. Diagnosis didn't come until I was nearly dead, and that was only a year ago. I was one of the fortunate ones--I found a real doctor.
Treatment now going on a year is so difficult, and symptoms are as bad or worse during treatment.
Pain, arthritis, neurological deficits, cognitive skills gone, decades of no sleep, falling down for no reason in the street (nearly getting run over), multiple concussions, desperate fatigue--you cannot imagine the fatigue, because there is no word in the English language to describe Lyme fatigue.
It's like chemo every day of your life. I had what felt like the flu half of every year.
Job loss, financial ruin, inability to care for my own daily life, ... life never got off the ground, and now I face old age with nothing and nobody. to help.
Insurance, Social Security, medical care (except for me, I got lucky in finding a doctor), housing--these are not available for Lyme patients. We lose it all, alone and unbelieved.
Dr. Willy Burgdorfer says it best in his interview now on the Under Our Skin Website. Doctors have done nothing for 30 years, put out a bad (medically bad) vaccine which had to be pulled for the damage it did, and the country is in deep trouble--scientists know how bad this thing is, but they're not talking.
We are in a real crisis here. It's not that Lyme is Chronic or not.
It's that Lyme is caused by a virulent, persistent and clever bacteria that does not get eradicated by the current protocol which is determined by the Infectious Diseases Society of America. They have lied or misled the entire country, and the CDC and NIH let them.
Everyone: go to the NIH's own Website for the Neurological Institute--see what they say about researching Borrelia.
Lyme disease is real. Babesia a coinfection is real--and the closest thing to Malaria we know. It persists, per recent scientific studies, in our blood supply nationwide.
The entire American public better wake up. This is AIDS, Cancer, Parkinsons, MS, Lupus, Fibromyalgia, Chronic Fatigue, Epstein Barr, Arthritis and more all rolled into one.
It's not a "tick bite," it's a serious, lifetime, crippling disease that hurts, denies you life.
Unless you one of the very lucky people to get help, you might as well quit your job, buy a bathrobe, and find a good tent--you won't be able to afford a home anymore.
This is not subjective, not open for debate. It is verifiable, it is known, and it is being suppressed.
Spirochetes like syphilis, protozoans like Malaria, bacteria like Tularemia or Rocky Mountain Fever--these are the organisms that cause Lyme.
But as Willy Burgdorfer worked in a bioweapons lab, we should all take note of what he says. Take a very, very, very good look at what is happening. Posted by: Lymed | June 10, 2009 at 10:02 PM
I felt like the wind was knocked out of me when the doctor I had been taking my family to for almost 10 years told me--"all your girls need is some counseling". They had both been ill for several months.
They had positive Lyme tests and had been treated with 3 weeks of abx. But, they were still very sick, but the doctor wouldn't believe me. The doctor would not treat them any further--because he didn't really think they were sick.
(Before Lyme, they were both VERY active Honor Students--but Lyme has robbed them physically and cognitively)
I have since found an LLMD that has been treating the girls. After a year of treatment, there has been progress. But, if one of them is off medication--they relapse quickly.
There is no doubt in my mind that chronic Lyme exists! Posted by: concerned mom | June 10, 2009 at 09:55 PM
The sad thing is that most doctors who are unbelievers have never done any of their own research, but have based their conclusions on their perceived lack of empirical evidence.
The height of ignorance is a person who says something isn't so just because, to them, it hasn't been proven yet.
I think these critics would like the people in the world with incurable diseases to disappear. But they won't, and their sickness won't - so don't try to discredit others work when you aren't willing to help in the effort yourself. Posted by: David | June 10, 2009 at 09:49 PM
There is no question in my mind that chronic Lyme disease exists. Our neighbor is in a wheelchair because of it and one of my friends can't work because of chronic Lyme. It is very real, indeed. Posted by: Liz arkoff | June 10, 2009 at 09:47 PM
the only controversy is why there is any controversy. there is plenty of scientific research that proves it exists.
we are all grateful to andy abrahams wilson for giving those of us, unseen until now, a voice with this brilliant documentary. chronic lyme is everywhere.
many are suffering and in desperate need of medical assistance - and then there are the insurance companies who won't cover treatment. this mess needs to be cleaned up. Posted by: lynn | June 10, 2009 at 09:41 PM
My story with Lyme really started in 1994 when my oldest daughter was biten in a state park and contracted the disease.
It took 5 years and many doctors to finally get one to treat without a positive WB or Elisa. She did however have a bulls eye that disappeared before a doctor saw it.
She had been treated on and off until the birth of my granddaughter, and then she crashed hard.
Through out the last 10-12 years I was having medical problems that would just magically appear.
Things like a murmur and MVP,panic attacks, dizziness.I was diagnosed with MS, Fibromyalgia, osteoarthritis, bursitis, restless leg. I had to have a neuroma surgically removed in my foot and knee surgery. A week before the surgery I tested positive for Lyme after several negative test.
The doctor didnt expect I would be positive. I asked at my last appointment to be tested for co-infection and he agreed to do it but again he didnt think I would test positive. I did in fact test positive for two different strains of Bartonella.
I have 4 in my family with Lyme.
My oldest just tested positive after 15 years with Lyme and Babesiosis.
My youngest tested positive to Lyme and Bart and my granddaughter tested positive for Lyme and still needs to have co-infections done. She just turned 2 and we suspect that she got it in utero or thru breast milk.
So I have taken up the axe and am doing what I feel is necessary to educate my patients (Im a dental hygienist) and to fight the unfair practices of the political world. So YES I not only believe, I live every day with Chronic Lyme x4 Posted by: Toothfairy | June 10, 2009 at 09:26 PM
I am a 57 year old woman. I had a very busy life as a sales rep and a very involved grandmother of 8. I would travel all week, have kids for the weekend and loved to work in the garden.
After a tick bite I got sick-and sicker 5 drs later I was diagnosed-I have been sick 15 months-spending days not able to get off the couch. I have been lucky that I have supportive husband and was able to quit my job
My niece is also is also sick with lyme.The worst part of this is aloneness and fighting to get treated probably because of misinformative -this is a story that needs to be told Posted by: karen mattison | June 10, 2009 at 09:16 PM
In the summer of 2004 I went on a camping trip with my then husband. In the weeks that followed I got a serious flu, then twitching in my left arm and arthritis. Followed by extreme fatigue and memory loss. I was only 24.
Because I was not diagnosed until I was 27 with Lyme Disease I had progressed to seizures, being confined to a wheelchair and barely being able to remember who I was or how to type a letter. I went on therapy, many antibiotics and then two 8 weeks stints of IV antibiotics.
Fast forward 10 years. I am 39 and have been battling active chronic lyme again for two years, with intense neurological symptoms.
I have had three picc line times and now am having a port put in because my IGM will not resolve and neither will my symptoms.
If I knew my life would have been taken away as I knew it, I would have taken precautions.
Lyme CAN be prevented if the medical community would stop arguing over treatments and get to the business of healing Lyme and preventing the new cases.
Please explore this in Woman's Day, your readership will better people for it. Thank You Posted by: Michelle ZImney | June 10, 2009 at 09:01 PM
My eight year old daughter has Lyme disease and if anyone doubts the reality of it, I strongly urge you to look to the children for the truth. They have no reason to want to be sick.
My daughter barely recognizes her problems as related to the disease. She was misdiagnosed for a year but when a specialist finally ordered the more expensive comprehensive bloodwork, it all came back positive.
She was given 4 weeks of amoxicillin and dropped like a hot potatoe. She was even off the antibiotics for two weeks before all her symptoms were full blown again. Finally we found a doctor that is truly literate in Lyme to treat her and she has made tremendous progress.
He even thought she might be cured but when we took her off the antibiotics she got sick again so we are not there yet. Will we ever be? I'm not sure.
All I know is that in his care she is a well adjusted, straight A student and before his treatment, she was in a constant meltdown and could not remember how to get from point A to point B in a school she had been in for years. Posted by: Nicole Martin | June 10, 2009 at 08:58 PM
My daughter has had lyme disease for over 20 years. We didn't go to the doctor when she had the initial bull eye rash because the disease was new and we didn't know the implications.
A short time later when we told our family doctor he didn't bother giving her antibiotics.
After many years of being incapacitated and trying to finish college and work as a nurse, she is finally diagnosed, but, now she lives with many life long symptoms. It has taken away the quality of both her life and the life of her 5 yr old son.
How can anyone question the existence of Chronic Lyme??? Posted by: Diane Lucas | June 10, 2009 at 08:41 PM
I also have chronic lyme disease. I contracted it in 2006, and I was lucky that it only took a year until diagnosis.
Not one of my doctors suggested testing for lyme, it was a masseuse I went to for back pain who suggested the test. I came back highly positive. The doctors agreed to give me 6 weeks of IV antibiotics because I had neurological involvement.
After the antibiotics were done I was told to wait and see if I developed an auto-immune condition (unlikely) or was cured.
Instead, I tested positive for lyme *again* 6 months later and my symptoms started to get worse. I have been in treatment with a doctor who takes Lyme seriously since then. Posted by: Jennifer Mankoff | June 10, 2009 at 07:59 PM
My Lyme journey began 8 years ago, even before I knew it was Lyme.
It was the Fall of 2001... I did feel tired... I had a lot of irons in the fire.. I thought well when I get done with this or that and have a few days off, I'll regroup.
Well, it just continued to get worse over several months, I was finding it very hard to get out of bed and make it through the day. I finally thought I need to see my doctor... it's hormones.
The next 4 years was a battle....with my health and doctors...new symptoms coming on as time progressed.
I live in Texas...still work (even though there have been days, weeks on end, where it is pure **** making it through the day)...
I started going outside my ins...because I wasn't getting anywhere with the docs on my ins...and I had to be able to work and I had no diagnosis to tell me I couldn't.
It was my flare up in 2007, that made me seek out a doc who specialized in CFS, Fibro and Hormones... She sayes "I really want to test you for Lyme disease."
Well, it would take me 2 years to be able to finagle my finances to get that test (which was positive). My official diagnosis, February 2009.
Now, I have joined one online support group of many, which the one I am on has over 1,000 members, with 100 new ones this month alone. Posted by: Rhetta R | June 10, 2009 at 07:56 PM
I know several people with chronic Lyme disease. My sister has had it for over 20 years. She was tested twice after tick bites and it came back negative. 14 years later it was fianlly detected -- too late.
She was a figure skating coach, now on disability.
She has horrible depression, chronic pain and consequently addicted to Vicidin or oxycontin alternately.
She sleeps 13 to 20 hours a day and has no real life. No, it doesn't exist. I hope they real. Posted by: Deborah Kostedt | June 10, 2009 at 07:22 PM
I was finally diagnosed with Lyme Disease after suffering for 9 years with damaged vision in my right eye, thyroid dysfunction, fatigue, unbelievably horrible insomnia and anxiety.
At first they thought I could have MS because an MRI showed lesions on my brain. Then my Lyme test came back positive.
I have been on antibiotics since January. I also have a co-infection, Bartonella.
Chronic Lyme is very real. I find it unthinkable that some people question that, because so many people are suffering. Chronic Lyme is like the AIDS of this decade. Posted by: Julia Simmons | June 10, 2009 at 07:00 PM
Chronic Lyme Disease does exist. My husband was diagnosed a few months ago after a 2 year battle of seeing several doctors who had no idea what it was.
We went to Infectious disease doctor, Endocrinologist, eye doctor, ENT, MS Neurologist, General Neurologist, and not one of these doctors could pin-point Lyme disease until we saw a Lyme Literate doctor who ran not only blood tests, but Brain specks,mri,cognitive testing, along with a Very positive Lyme result.
My husband is on IV antibiotics. It could be several months to a year before he begins to feel any better because it has gone into his brain....
This disease is real...Sensitive testing is needed by a good Lab such as IGENEX. Posted by: KMR | June 10, 2009 at 06:54 PM
I have lyme and yes it can be chronic. I was diagnosed in 2000 after visits to several doctors and treated with antibiotics for over nine months. It seemed like I was cured.
I went back to work as a Personal Trainer and fitness instr. I was very active. I was into triathloning, pilates, rockclimbing, you name it I would at least give it a try.
In 2007 I was diagnosed with lyme after test came back positive. It has been a living hell. It has taken the life I loved away. I use to sing in a band. I miss that.
I,ve had Doctors in Texas tell me Lyme doesn't exsist here. But when I take my dog to the Vet. he gets checked for Lyme.
I have been dealing with a variety of symptoms since my mid 20's. I am in my 40's now and I'm ready to reclaim my health.
Just need a little help from the medical, political and the insurance community.
My older sister was diagnosed with Breast Cancer. She got right in with the appropriate doctors who set her up for her appropriate treatment. Her doctors gave her the game plan. The insurance company also has a plan for her.
Where is our plan for Chronic Lyme? Posted by: MoBar | June 10, 2009 at 06:27 PM
My husband has chronic neurological Lyme disease with two co-infections. It has totally destroyed his health and our finances. It is very real. Posted by: Sue Michaels | June 10, 2009 at 05:59 PM
I was finally diagnosed with Lyme after ebing ill for three years. By the time I was diagnosed it spread to many tissues in my body.
It effected my heart, brain, CNS, etc. This disease is very real. If you know you got bit and got on antibitoics right away you may be fine.
Yet what about those, like myself, who never knew they were bit and never got a bullseye.
My husband and eldest son had one, yet my youngest son and daughter enver did. We all have Lyme- even though my daughter's was caught quickly it still lingered- along with coinfections of Babesia and Bartonella.
Most Lyme patients are coinfected with these other tick diseases therefore propelling the person's immune system into a chronic sickly state.
As for myself I took a year of antibiotics and a stomach biopsy was done on me- int hat sample they foudn the NDA of Lyme and it had survived- I still had positive blood tests also.
There are hundreds of patients with Lyme and it truly never goes away- as of date there is no CURE for Lyme- so how do people"just get rid of it".
Antibiotics help the lesser cases but in the end many cases that weren't caught in the beginning turn chronic. I still have my Lyme symptoms. I do feel better than I did when first diagnosed but I still have pain and problems in my body.
Babesia still shows up in tests as does the Lyme- so if I have all that with the symptoms- I know I still have it and no one can tell me chronic Lyme doesn't exist.
Science needs to catch up and look at the works of Docs like Joe Burrascano, CHarles Jones, Alan McDonald and realize Lyme does exist and there isn't a cure right now.
The country should not be fighting over whether it's chronic or not because there are many scientific cases and patients that show it is-the country should be fighting for a CURE!
I tell you if I were a reporter I would be all over this story- it truly is outstanding! Posted by: Heidi Healy | June 10, 2009 at 05:55 PM
For every person that has posted here, there are thousands upon thousands who are too sick, too frustrated, too poor .. they need to be taken care of. How can this wonderful nation of ours allow so many people to suffer?
None of the few doctors who "believe in" chronic Lyme will take insurance now, because the insurance companies deny claims, investigate, litigate and in general make the physicians' lives miserable.
Please, PLEASE put this into the main stream - your attention might be the beginning of real Hope for sufferers of this horrific disease. Please. Posted by: L TUrner | June 10, 2009 at 05:36 PM
My family has all been diagnosed with late stage chronic lyme disease since November of 2008---3 generations of us.
We exemplify several means of transmission: tick bites, transmission via the placenta to unborn children, and sexually.
I am 51 years old and totally disabled from a wonderful career. My daughter is 34 and also disabled, and trying to care for 2 of her children who also have this.
My son is 22 and trying to finish up his last semester in college, but isn't looking at a promising career right now...he is looking at fighting this debilitating disease. His fiance contracted this from him and was just diagnosed this past month.
I have been sick all of my life, and misdiagnosed with chronic fatigue syndrome, fibromyalgia, and told by many doctors that I just want to be sick and I should see a psychiatrist. (to this day, my sister still believes that about me!!)
We have very little friend/family support, financial support for our outrageous lyme doctors fees and treatment, and it is literally a crime that the IDSA and the CDC continue to teach our doctors that this is not a real disease, all to profit from the things they are treating...the symptoms such as pain, memory loss, joint problems, heart problems...the list is endless.
We need to get this information into all the magazines, all tv news shows, and everywhere so that everyone can see the epidemic for what it really is.
For every one of us who has FINALLY been properly diagnosed (and too late to get well again), there are 10 more people going from doctor to doctor, never finding out what is making them so sick. Do the math...those numbers are not exaggerated. Posted by: Marianne Snyder | June 10, 2009 at 05:25 PM
� 2009 Hachette Filipacchi Media U.S., Inc.
********************** wow, the stories this post generated in 1 day! great input.
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bettyg
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oops there was another full page of comments too; go read them there ... i just added mine there and recoginized many mdjunction/lymenet members.
Barbara, thank you for writing the above article! We are pleased to see it there.
Yes, UNDER OUR SKIN dvd tells the complete lyme, war controversy story.
It's bad enough to fight to get drs. to treat us, but to enter this unsuspecting war is pure HOG WASH!
I've had chronic lyme for 39.5 years; 34.5 yrs. MISDIAGNOSED BY 40-50 DRS!! UNACCEPTABLE!!
We didn't know that 300 other illnesses MIMIC lyme including thesE: ALS, MS, parkinson's, bell's pulsy, Alzheimer's/dementia, fibromyalgia pain, chronic fatigue, most mental illnesses, & list goes on.
Lyme statistics for 50 states link:
1980 - Jan. 2008 ...all 50 states broken down by years!
She said because of so much interest in this subject they are thinking of devoting a Radio WD program to it.... with in the next 2 weeks....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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ooops... Ps.. thank you for posting this...
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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Update to above original link- Barbara Brody,the article's author, mentions that because of interest in the topic,there is the possibility of a "Radio" show. (I'm thinking Internet-based)
Would be nice if whoever put her in touch with the producers of "Under Our Skin" could arrange to have some of them be interviewed,and maybe even a call-in with patients.
I pretty sure that the media company handling "UOS" is aware of this, but I'll drop them a note with the link anyway.
Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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Yeah,
I really hope she, or whoever moderates the show, does their homework on this. Having the "UOS" people there would be vital.
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jklynd,
Thanks so much for posting this link and thanks to all those who replied.
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