posted
Remember that Amy Tan (Joy Luck Club author) had a very interesting ordeal with her Lyme Disease, too.
Posts: 331 | From virginia | Registered: Nov 2005
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posted
HEY i THINK THATS FANTASTIC....And absolutly it helps that people with influence have spoken out about the disease....
but why cant your catch be YOUR STORY- YOUR BATTLE with this dreadful disease...the common person, and how devistating the disease is and the lack of knowledge in the medical field and the stress on YOU physically, financailly, emotionally, psychologically, and socially.....I think that is what would make a good story....
Good luck and good job!
Posts: 83 | From Northern Illinois | Registered: Feb 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I would use your story and mention Daryl Hall and Amy Tan at the end of the story.
Good job getting their attention.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Someone said Rossie Odonnels daughter has it. Tommy Hilfigers kids have it. Something about Chevy Chase..I can't quite rememember...There was a US Senetor who is still alive who was very sick with it.
And I heard the Cambells Chicken soup guy has it pretty bad..I don't know who this is but supposadly there were commercials with the man holding the can and virtually everyone(except me..lol) know who he is..
I know my answer is vague but I hope it helps...
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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What I alwasy thought would be a good topic is the original group of kids bitten in Lyme ct.. to visit them and see if they have residual symptoms still and retest them for lyme. I know one of the people was just told that they have ms after years of having lingering symptoms..
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
First of all...thanks for taking the initiative!
I would play up the "hidden epidemic" angle, and give examples of all the people who have and are suffering from lyme. Maybe mention that an award-winning director is working on a documentary on the lyme epidemic (sorry if I am not giving appropriate credit to the film). Unfortunately they seem to like to play up the "sexy," sensational angle to stories, and if they think that this is something that actually might affect their viewers, it might be more attractive. Let us know, and good luck!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
Let her know how poor the CDC standards/errors are and that most Doctors take that as writen in stone.
Posts: 9 | From Lisbon Falls, Maine | Registered: Jan 2006
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posted
WildCondor's story is amazing, too. She has it written up really well on her website.
Maybe the medical controversy/insurance problems would be a good angle.
This is great news!!! I keep wishing a Lyme story would show up on the TV show "House" but the writers better get a good technical advisor from Lymenet!!
Posts: 353 | From Florida boonies | Registered: Nov 2005
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-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
I think mentioning about the Lyme Literati might be a good idea. The Lyme Disease Association has several videos that you can direct them to. One in particular is somewhat lengthy, but 3 authors speak about their experiences and the problems with lyme disease.
Seems to me that this group would be a good catch for someone in the media to interview on a show.
[ 08. February 2006, 03:22 PM: Message edited by: tequeslady ]
Posts: 856 | From Texas | Registered: Jan 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Maybe mention the problems with testing (and that commonly used tests were NOT devised for diagnosing or excluding a Lyme diagnosis, but for demographic purposes).
Also, two standards of care (short term abx vs. long-term). Relapses after short-course antibiotics - persistent Lyme.
Ignorance among medical community at large and misinformation.
There is also Meg Cabot (author, who has Lyme).
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
You could mention how Dr.Steere stole credit for Polly Murray's works. And how the only research done since the western fence lizard discovery by Robert Lane in 1998 (lizard blood killed lyme in tick) was an 18 yr. old, Chelsea Grigery from Mi. on a science fair project who also made a discovery. I e-mailed Robert Blake with questions and he replied that he knew of no other research on these lizards just last Tuesday.
Posts: 290 | From ohio | Registered: Dec 2005
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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posted
Lymied...thanks for posting that link. I couldn't find it in the old posts. I cry every time I see it.
I can't imagine that anyone would watch that short clip and not be moved enough to ask more questions, and see that there is much more to the story.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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bettyg
Unregistered
posted
CONGRATS for going for it & getting a response! We know you'll do a good job regardless. I too say go with YOUR story; that's why you contacted them. You've been given great advice for other examples.
Also another hard thing is being APPROVED for SSDI, SS disability insurance benefits! Took me 5 yrs. & it wasn't based on lyme, fibro, CFS; it was for severe depression & anxiety after a 5 yr. battle.
quote:Originally posted by daniella: Someone said Rossie Odonnels daughter has it. Tommy Hilfigers kids have it. Something about Chevy Chase..I can't quite rememember...There was a US Senetor who is still alive who was very sick with it. daniella
Daniella, The US SEN. you mentioned is IOWA'S BERKLEY BERDEL. If you need more info about him, to contact Troutscout or Kathy Cuddeback, found on IOWA SUPPORT GROUP PAGE...check for emails. I can't remember Kathy's nickname here.
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I'm going to post a story that was once here on Lymenet but I can't seem to find any longer.
I can't even tell you who wrote it but it has gotten to me every time I read it. It is very well done. I hope whoever wrote it will not be offended that I'm reposting it. I'm doing it because it is just THAT good.
Begin Story
It's raining again.
As I look out of my kitchen window at the soggy leaf-covered street, my 10-year-old gray-chinned Labrador sits beside me, tattered tennis ball in his mouth, tail wagging.
"Is it time yet, can we go outside and play?" It's been a long time since we played those doggy games, I throw the ball, he brings it back, and on and on.
But ever optimistic, he doesn't forget. He doesn't forget there were better times when I got out of bed, didn't stagger around the house like a beer-filled college freshman at his first fraternity party.
He remembers and I am grateful. I don't.
I am 60 years old and I have Lyme disease.
It's been five years since a small pin-sized tick decided to dine on my upper thigh. He came uninvited to this dinner party and left quietly.
I never even saw him, but he left his calling card, a big red rash. No bull's eye, just a rash, hot to the touch, odd-shaped but no big deal in my spectrum of physical symptoms that make the heart beat with fear.
Just a spider, I thought. Nothing to worry about.
Little did I know.
There were small symptoms at first, a bit of a stiff neck, a strange bout of conjunctivitis that glued my eyes shut in the morning, but then there was that new cream I had tried in the never-ending vigil to foil Mother Nature in her attempt to turn my face into my mother's.
An allergic reaction, I rationalized.
Nothing to worry about.
For 55 years I had run around like a house on fire. Divorce, starting over in my 40s, raising three children on my own, even taking on three jobs at once to pay the bills, did not slow me down.
Depressed, of course, tired, never.
Slowly, the fire was sputtering, I noticed. Tired all the time, longing for naps, but then I was no spring chicken after all and people lose energy as they age, don't they?
More vitamins, more treadmill time would fix it. Nothing to worry about.
In 2001, I took on a new job, which required a long commute, adding up to 14-hour days. Slowly over a period of a year, my fire went stone-cold dead.
The next year was a struggle beyond description and a strange new symptom appeared. I was dizzy.
I bounced off walls, furniture, and even friends, as we walked down the street to lunch.
Weekends were spent in bed.
My lower back and shoulder hurt all the time, one leg dragged a bit when I walked. My eyes weren't working properly, lots of big black floaters and lights that flashed at odd times.
Exhaustion did not begin to describe how I felt. I couldn't work, I couldn't think.
Something was wrong for sure, something to worry about.
I began with a GP, who did bloodwork, all normal, and listened patiently to my array of symptoms. Generalized anxiety disorder, she proclaimed and sent me to a shrink.
Of course, that's what it is, said he. Antidepressants will solve your problem. They didn't.
I continued to bounce like a boat at sea in a hurricane. Getting out of bed to take a shower became a feat in itself.
Next came the ear, nose and throat doc, who said, after much testing, I had TMJ.
Next on the list was a neurologist who, after many tests, said I had small spikes in my EEG. Take this medication and it will fix it. It didn't.
I went on to allergists, orthopods and chiropractors, who passed various judgments on my condition.
I got to know my local emergency docs well after severe vertigo caused my bed to drop underneath me in the middle of the night. Cat scans, EKGs turned up nothing.
I was scared. I had lost my mind, I was sure. After all, I came from a typical southern family where too many of my relatives had married too many of my relatives.
Was I on my way to being the eccentric old lady who roamed the neighborhood in a chenille bathrobe carrying an open umbrella when it wasn't raining?
One more try. I went to a holistic doctor, who tested me in new and various ways, which involved a lot of spitting into little tubes. Whatever, I needed help.
Chronic fatigue syndrome, said he. Take these supplements. They helped. The chronic fatigue that is; the eternal bouncing vertigo went on unabated.
I felt like a human car wreck.
After six weeks, my holistic doc said he was going to test me for Lyme disease. Bingo! A big fat positive. Eighteen months of hell and at last an answer I thought.
No chenille bathrobe for me!
Little did I know.
The complexities of testing, diagnosing, and even treating this disease are beyond human comprehension.
The head whirls as it tries to understand Western Blots and various combinations of drugs that might or might not help. Some tests are accurate, others are not. Some labs do it right, others don't.
Even finding a doctor to treat Lyme properly often requires long car rides and plane trips to far-away locations in other states.
The disease won't kill you, they say, but, so far, my experience tells me the cure just might.
I look out of my kitchen window at the rain this morning, remembering the person I used to be, not perfect, actually no where close, but in the game, always in the game, until a tiny pin-sized tick came for dinner.
It's time to take my pills; a new journey has begun.
End Story
I really wish I knew who wrote this. I think it's one of the best explanations of what we go through. It makes me cry every time I read it.
Maybe you can try writing something similar without actually plagiarizing this story.
Or, if the person that wrote it would come forward and allow it to be used...
Hope this helps,
Corgilla
P.S. If anyone thinks that my posting this is a no-no, let me know and I'll delete it.
posted
Thanks for sharing that story Corgilla - hope the person that wrote it comes back and identifies themselves...
Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
Maybe share too the attack our LLMDs are under.
I would be really careful though and make sure Diane Sawyer will correctly represent your situation and other lymies.
60 minutes did a show on the physician in SC and then brought lyme disease into the picture and made lyme sound like a trash can diagnosis...it was really bad.
I believe Diane would represent the real story...she seems like a good apple.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
That's great! I agree with the people who said the most important thing is to tell your story.
I've definately had much trouble writing my story out and I'm not even sure if I've ever written it entirely. For me, the biggest problem is writing it in a way that doesn't come out seeming emotionally distant, like a timeline of everything that went wrong for me, ( instead of my story as a person ). This a strategy which, for me, has been helpful with that (not sure if it would work for some other people or if I am just weird):
What worked for me, was to imagine that I was writing to a friend, or could be a relative, who I was especially close to but hadn't talked to in a long time --- Whether it's just imagining I'm writing to them or actually writing the first draft to them specifically. Then you can always go through and edit out the places that specifically reference that person as the reader of your letter, or that reference that you were writing to one person if you like, while preserving the main heart of what you wrote to them.
I don't know if that would work for you, or if you or anyone else even need that kind of approach, maybe I'm just strange.
Also, thinking just of what has worked for me, ... I like to write my story straight out- and not worry about where & when to refer to the political or medical landscape that helped create different parts of the story. Then you can always go back and edit in those particular references & points which you think are important in places where your story naturally "brings them out"; if that approach works for you.
Well, that's just what has been helpful to me; nowadays I'm not a very good writer (with the possible exception of when I'm really emotional). So maybe most of everybody here could tell their story in a personal and emotional way without needing to use a technique like that. Best of luck to you!
Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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posted
Would call Dr. Fallon at Columbia, tell him you want to make the most compelling case for Diane. I spoke this morning with his assistant (about something else) and she said that Lyme disease is everywhere and they are bombarded with people being misdiagnosed from all over the country. She is afraid that the docs don't want to touch lyme for fear of retribution.
Columbia struggles right now to be heard. They will be opening their doors--the first LYme disease clinic -- in April 2006!!! Let's give them a voice too....
-------------------- We are spiritual beings on a human journey...
posted
Poor House, Way to go! Don't forget Rebecca Wells and the Ya-Ya's! Posts: 460 | From Illinois | Registered: Aug 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Tell her about Columbia opening their doors--that's the news hook, one they always need. They film the show now and air it in the spring when Columbia opens their doors.
They interview Fallon and others.
Don't send them to open eye as they might 'steal' that very good work. Steal as in stealing good ideas and stealing their thunder.
Mention Daryl Hall--there was just an article out on how scared he was by the ordeal. Send them the URL to Rebecca Wells' website as she just posted, at end of January, how sick she still is and now her hubby and best friend have it .Remind them that her book ya ya sold 8 million copies and the movie was a big deal too.
Use news hook: columbia opening; and celebrities. Your own story--is not enough--they could find that anywhere. There are a million stories in the naked city so to speak. They want news. Maybe they will go to Rebecca Wells' home and film her and hubby. Show the wheelchair she was in. Etc.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
I agree. I think more is needed than just one personal story.
That's why I recommended the Lyme Literati. Giving links to some of their stories would give them the ability to see that some very famous people have this disease.
I also think contacting Dr. Fallon is also a wonderful idea.
Posts: 856 | From Texas | Registered: Jan 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Poor House,
First, congratulations on taking the initiative you did. That's great.
Second, as firecop said, I don't think there's anything more compelling than all our individual stories. Probably starting with yours. What goes on in our lives as we struggle to beat this disease and reclaim ourselves is the story nobody seems to know.
People are told Lyme is a simple disease. Period. Nobody realizes that the reality is anything but simple and involves many more lives than anyone ever suspected, some dedicated doctors and many in the medical community who are routinely dismissive.
Somehow, Poor, whatever you wrote intially was compelling enough to get past the first transom. Maybe take a look at Dr. B's guidelines for some statistics to reinforce what you're saying. You can also point the good folks at the network to this board. You don't have to spend much time here to realize somethng very serious is happening.
You might also want to copy and paste Rebecca Wells' story from her site (ya-ya.com). She makes a pretty strong case for the devestation this disease can cause.
Let us know what happens...and again, great job!
Andie
[ 08. February 2006, 11:17 PM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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quote:Originally posted by dontlikeliver: Maybe mention the problems with testing (and that commonly used tests were NOT devised for diagnosing or excluding a Lyme diagnosis, but for demographic purposes).
Also, two standards of care (short term abx vs. long-term). Relapses after short-course antibiotics - persistent Lyme.
Ignorance among medical community at large and misinformation.
There is also Meg Cabot (author, who has Lyme).
DLL
Here's a link to an FDA Public Health Advisory on the use of Lyme disease testing to support a clinical diagnosis. It clearly states the tests are only to be used to support a clinical diagnosis not to be the sole basis of a diagnosis.
I think an important topic with Lyme disease is the antibiotic treatment issue. I noticed that doctors on the other side of the fence frequently quote research that shows long term antibiotic use showed no improvement and thus was unnecessary and dangerous beyond 30-60 days. What we need is to show that there are many patients who relapse after discontinuing long term antibiotic use and then showed improvement when back on them again.
I think it's important to educate them on just how this spirochete operates and evades the immune system and antibiotics...the different forms this spirochete takes to protect itself and the length of its growth cycle which is partly to blame for the need of long term antibiotic use. An LLMD would be perfect to explain all of this.
Diane Sawyer and her group I'm sure are very good investigate reporters, so I think you just need to tell your story and then point them in all the directions they need to go in to start their investigation. This is all very exciting! I hope Ms. Sawyer can do this disease some justice.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
i agree that first you should tell your story because of the human interest.
the following was valleymom's post today over in general support - it was written by tincup (our tincup) sorry this is so long.
Here's one I have given to people.
NEW.. UPDATED MAY 2002 VERSION:
IT IS LYME TIME YOU KNEW by Lucy Barnes
11/98 (updated 2002)
It isn't the years and years that I have been so terribly sick (twelve years and still going), or the endless days in the hospital. It isn't the countless hours confined to bed, or the brain deteriorating as I helplessly watch. It isn't the years of daily physical therapy for the ``get-down-on-your-knees-and-pray-for-it-to-end-pain''. I have even become accustomed to the repeated poking and probing tests, as if this is what the rest of the world spends its days doing.
It isn't the improper diagnosis, endless treatments, or the thousands of dollars spent on medical bills ($250,000.00 and still counting). It isn't the fact that I have lost my job, my home, my income, my dignity, my friends, and the little sanity I had that is so distressing at this point. It isn't even the continual battles with insurance companies, or the never ending parade of doctors who won't listen, or medicines that don't work.
What makes me hurt so much is the fact that after all these years I still see other people suffering from the devastating effects of Lyme disease. It is the sad news that, more often than not, the diagnosis of Lyme disease is being overlooked, or when finally discovered, is being treated improperly. It is the fact that a lifetime of suffering could be avoided, and many lives could be saved if only "they" had known. Well, it is high time "they" all knew. It is time for those responsible for caring for patients to get the updated information, listen, and act aggressively and to treat the disease before more people spend a life time in pain.
I am not a doctor. I have no medical degree, or even an office in which to hang one. I am simply an unlucky individual who was once very active, loved life, loved people, worked and played outdoors, volunteered in the community, traveled, and had the pleasures of raising a family. I knew absolutely NOTHING about Lyme disease when I was first caught in its web (and it appears there were very few that did). I had to learn things the hard way, by doing it, and I don't wish that fate on anyone.
If Lyme disease has left me with anything, it would be a good deal of bitterly acquired "street smarts". Perhaps the "been there, done that" information below will prevent someone you know from getting the disease, or at least make it a minor inconvenience instead of a life time of struggle.
Did you know Lyme disease can mimic, show similar symptoms to, or be confused with... Chronic Fatigue Syndrome, Multiple Sclerosis, Alzheimer's, Parkinson's Disease, Lupus, Lou Gehrigs (ALS) Disease, Guillian-Barre Syndrome, Polymyositis, Hepatitis, Cardiac Disorders, Fibromyalgia, Ringworm, Tullio Phenomenon, Encephalitis, ADD, ADHD, Meningitis, Depression, Panic Disorders, Bell's Palsy, Candidiasis, Chronic Mononucleosis, Hypoglycemia, Scleroderma, Epstein Barr Virus, Heart Disorders, Autoimmune Diseases, Bannwarth's Syndrome, Cancers, Kidney Disease, Raynauds Syndrome, Stress-related Illness, Sleep Disorders, Thyroid problems, Vasculitis, TMJ, Anorexia, Agoraphobia, Cerebrovascular Disorders, Arthritis, Connective Tissue Diseases, Hearing Disorders, Crohn's Disease, Purpura, Pseudotumor, Sjogrens Syndrome, Stroke, and Respiratory Insufficiency. Some people who were diagnosed (misdiagnosed) with the above conditions were found to have Lyme disease. They were later treated with anti-biotic therapy and improved.
Did you know Lyme disease can have a wide range of symptoms, which can go dormant (sometimes for years), can migrate, return, disappear, or change day by day? Symptoms can be aggravated by stress, medications, weather, and other outside influences. Symptoms may tend to worsen on a four week peaking cycle. SOME of the symptoms that may be found in those with Lyme disease include:
Flu-like symptoms, headaches (mild to severe), recurring low grade fevers or fevers up to 104.5 degrees. Usually in the first few weeks of Lyme disease fevers tend to be higher. (Patients with Lyme disease tend to have a "normal temperature" below 98.6 degrees, therefore, a slight rise in temperature may be all that is noted.) Often patients exhibit fatigue (mild to extreme), joint pain (with or without swelling), muscle pain, connective tissue pain, recurring sore throat (sometimes only on one side of the throat), swollen glands (come and go), varying shades of red on ear lobes and pinna, malar rash, cold hands and feet in a warm environment, weakness, lightheadedness, eczema and psoriasis, painful or itching skin, flushing, night or day sweats, inordinate amounts of sweating, anhydrosis (inability to sweat), or dermatitis (acrodermatitis chronica).
There may be a rash, but it isn't noticed or it may not appear in all cases (reports state approximately 50% may not get the rash). The rash may be basically circular with outward spreading, however, many other varieties are seen. The rash may be singular or multiple, at the site of a bug bite, or in another location, warm to touch, or slightly raised with distinct borders. In dark skinned individuals the rash may appear to be a bruise. It is often confused with ring worm.
Numbness, sleep disturbances, vertigo, hearing loss, feelings of being off-balance, unexplained weight gain or loss, and feeling "infected" are also problems associated with Lyme disease. Symptoms may develop that include: panic attacks, anxiety, depression, mild to severe cognitive difficulties, mood swings, coma, seizures, dementia, mania, biploar disorders, vivid nightmares, stammering speech, confusion, memory loss (short or long term), "brain fog", vibrating feeling in head, topographical disorientation, and environmental agnosia. Some patients have problems with numbers and sequencing, disorganization of thoughts, rambling on in great detail while talking, frequent errors in word selection or pronunciation, changes in personality, short attention span, Tourette manifestations, OCD (obsessive compulsive disorder), raging emotions, and cranial nerve palsies. Some patients explain symptoms as feeling apart from everything, feeling unattached, robot-like, not doing their own thinking, feeling like looking through a veil, feeling withdrawn, or feeling like they are swaying side to side.
Patients have reported bladder disfunction (neurogenic bladder with either hesitancy, frequency, loss of bladder awareness, urinary retention, incontinence or symptoms of UTI, and chronic pyelonephritis). Intersitial cystitis, irregular or severe menstrual cycles with decreased or increased bleeding, early menopause, a new onset of P.M.S. symptoms, or disturbed estrogen and progesterone levels are documented in many cases.
Other problems include altered pregnancy outcomes, severe symptoms during pregnancy, abdominal bloating, irritable bowel syndrome, abdominal pain and cramping (may appear to be ulcers), loss of sex drive, testicular or pelvic pain, breast pain, and fibrocystic breast disease.
Diarrhea (which can come and go or last for months with no explanation), constipation (which can be severe enough to cause blockage), irritable bowel syndrome, spastic colon, nausea, stomach acid reflux, gastritis, abdominal myositis, and indigestion are some of the gasto-intestinal disorders reported. In addition, patients demonstrate a higher occurrence of various types of cysts (liver, breast, bone, ovary, jaw, skin, pineal gland, brain, and kidney).
Some Lyme patients are diagnosed by their eye care professionals and have been documented as suffering from one or more of the following disorders: conjunctivitis, ocular myalgias, keratitis, episcleritis, optic neuritis, pars planitis, uveitis, iritis, transient or permanent blindness, iritis, photophobia, temporal arteritis, vitritis, Horner's syndrome, ocular myasthenia gravis, and Argyll-Robertson pupil. Often eye problems require a changing of prescription glasses more often than normal.
Heart-related problems are associated with Lyme disease and can include: mitral valve prolapse, irregular heart beat, myocarditis, pericarditis, enlarged heart, inflammation of muscle or membrane, shortness of breath, strokes, and chest pain. Twitching of facial muscles, Bell's palsy, tingling of the nose, cheek or face are reported. In addition, there may be chest pain or soreness, enlarged spleen, liver function disorders, tremors, extreme sensitivity to being touched or bumped, burning sensations, stiff neck, meningitis, and encephalitis.
Patients may experience continual or recurring infections (sinus, kidney and urinary tract are most common). Patients can suffer from a weakened immune system, the development of new allergies, recurring upper respiratory tract infections (causing, or worsening of pre-existing sinusitis, asthma, bronchitis, otitis, mastoiditis), and allergic or chemical hypersensitivity's.
Other noted problems include: T.M.J., difficulty swallowing or chewing, tooth grinding, arthritis (in small joints of fingers and larger, weight bearing joints), Osgood-Schlatter's Syndrome (water on the knee), bone pain, gout-like pain in toes, muscle spasms to the point of dislocating joints and tearing muscle tissue, leg and hip pain, "drawing up" of arms, "growing pains" in children, tendonitis, heel pain, carpal tunnel syndrome, and paravertebral lumbosacral muscle strain/spasm.
Some patients tend to suffer from a monthly "flare-up" of symptoms as the spirochetes reproduce and/or die off. This is called an intensification reaction or a Herxheimer and can be confused with an allergic reaction to medication.
*** Important: Having one or more of these symptoms does NOT necessarily indicate a Lyme disease diagnosis. This is simply a list of symptoms that have been documented by various physicians in areas where Lyme disease is running rampant, and results of years of research studies on patients who are confirmed to be infected with the Lyme disease spirochetes.***
Outdated information continues to circulate concerning Lyme disease and ticks. Please take note of the following research findings and keep informed of new information as it becomes available.
1. Ticks may not be seen, but they are there. Ticks can live six months without feeding and can withstand all but the most severe cold temperatures. They can hatch a brood of over 2,000 babies that are so tiny they can barely be seen with the naked eye.
2. The American Dog Tick, the Lonestar Tick, and the Deer Tick, are just a few of at least 9 different species of ticks that carry the Lyme Disease spirochete. It is also found in at least 6 species of mosquitoes, 13 species of mites, 15 species of flies, 2 species of fleas, and numerous wild and domestic mammals including rabbits, rodents, and birds. Once transmitted to humans, the spirochete (over 300 DIFFERENT strains have been identified to date) causes damage to it's host by spreading to various parts of the body. Other insects and modes of transmission are currently being researched. At this time, Lyme disease is not considered to be sexually transmitted, only because there has not been a ``documented case''. It may be wise to take precautions until the studies are completed. The spirochetes that cause Lyme Disease have been found in breast milk, the uterus, semen, urine, blood, the cervix, tears, brain, and other body fluids and tissues.
3. Ticks and other insects can transmit more that one disease at a time (up to 20 different diseases have been noted in scientific literature). Be aware of the early symptoms of other tick-borne diseases, such as Rocky Mountain Spotted Fever, which can mimic severe flu-like symptoms in its early stages, and can be deadly. Keep in mind, handling a tick, or a tick crawling across your skin can transmit RMSF. Co-infections with several strains of Babesia, Bartonella (Quintana and Henselae), and Ehrilichiosis are being discovered in people diagnosed with Lyme disease and they can be deadly and/or become chronic infections. Treatment for these diseases is not always the same as for Lyme. Suspect and test for co-infections for those who do not improve on regular treatment. Often, the lower the titer readings for these diseases, the longer the infection. Low or borderline readings do not indicate a lesser infection. The symptoms of the co-infections do not always present as ``typical'' for that particular disease when found in Lyme patients.
4. To remove a tick from your body, DO NOT use gasoline, Vaseline, or try warming his butt with a match. When you upset the tick he will spit fluids into your system. To remove the little critter, grab him gently with tweezers, as close to the skin as possible, and pull him out the same way he entered. Clean the site with rubbing alcohol to help prevent secondary infections. It is NOT true that a tick must be attached for a long length of time before someone can be infected. Infection can occur within a few hours. Proper removal is essential.
5. To dispose of the tick, DO NOT burn him and allow his body fluids to become airborne. DO NOT flush him down the toilet. The tick can live under water for a long time, and may crawl back out of the septic system into the grass. Put the critter in a half-full bottle of rubbing alcohol with a tight lid. Be sure to mark the bottle clearly with a magic marker stating there are ticks inside, and keep it out of the reach of children.
6. Use of insect repellents on your skin isn't always enough. For those who need regular protection, the use of the clothing treatment, Permanone, is very effective. It can be purchased in a spray can (approx. $5.00) in your local sporting goods department store. Locally it is sold as REPEL PERMANONE. It is good for two weeks of protection and treated clothing can be washed and worn again within the two weeks. It is HIGHLY recommended for treating shoes, boots, backpacks, and outdoor clothing. It has NO scent and therefore good to use by hunters. Ticks, chiggers, and other insects crawling across properly treated clothing will die. Be aware, it must ONLY be applied to clothing, NOT to your skin. It can also be sprayed on screens, furniture, and around buildings. Follow instructions on the label or check with the manufacturer for additional uses. For treating your yard or other outdoor areas, a product called SEVIN (concentrated liquid or dust) can be applied. Follow the directions carefully. This product seems to have the least odor and is recommended for killing ticks and other insects.
7. A special note to hunters... Check yourselves, your clothing and your dogs before going home. If you are lucky enough to bag a deer or other wildlife, wrap it in a treated sheet as soon as possible, or properly hang the deer over an old sheet that has been liberally treated with Permanone. As the deer cools, ticks will drop off. As they drop and fall onto the treated material, they will die instead of taking up residence in your yard, which could expose your family, your pets, and others, to danger. Deer meat or meat from other wild animals should be cooked thoroughly before eating. When butchering or handling raw meat, disposable gloves should be worn.
8. If a medical professional tells you that one, two, or even three weeks of antibiotics are all that are needed to cure the later stages of Lyme disease, RUN, don't walk, to another facility. According to an overwhelming number of medical research papers and experienced sources, the duration of treatment is as important as the choice of antibiotic. For example, Dr. Joseph Burrascano, Jr., MD, from New York, a leading expert in the field who treats thousands of Lyme infected individuals states, "the longer one is infected before adequate treatment is begun, the longer the treatment course will have to be." He also explains, "As antibiotics kill organisms only in their growth phase, therapy is designed to bracket at least one entire four-week generation cycle. Hence, the minimum treatment course is six weeks: late disseminated infections may have to be treated for many months to be controlled." Dr. Burrascano reports, "to prevent relapses, treatment has to be continued until all signs of active infection have cleared... average duration of successful therapy of advanced cases is four months in males, and six months in hormonally active females."
9. Relying ONLY on the blood or urine tests for Lyme disease is NOT recommended. The current tests have been found to be inaccurate as a sure indicator that Lyme disease is present. False negatives are common and the standard ELISA tests that are normally performed miss MANY cases of Lyme Disease. See www.igenex.com for reliable tests. Conns Current Therapy, 1997, has published liberal guidelines for the diagnosis and treatment of Lyme disease. Doctors need to review that information, then listen carefully to their patients and diagnose clinically by the signs and symptoms presenting. * Update... Please see Dr. Joseph Burrascano's ``Advanced Topic's in Lyme Disease'' which can be found at the following Internet site: http://library.lymenet.org/domino/file.nsf
10. If you are bitten by a tick while on the job, insist that an accident report be filed immediately and seek treatment! Each time and every time. Do not wait until you have symptoms! The companies providing insurance have found many reasons why they should not be responsible for treating Lyme disease, and not filing a report on time is a legal issue they may try to use to deny benefits. The cost of medication often used for treating chronic Lyme disease can be up to $2,000.00 per day. If four months of treatment are ordered, the medication alone could run approximately $240,000.00. You do not need to be arguing with insurance companies, hiring attorneys, and delaying treatments until a court can make a decision because you didn't take a few minutes to file a report. Keep a copy of all of your medical records and receipts as they are generated.
11. Be aware that neurotoxins produced by spirochetes may be causing symptoms in people who have Lyme and other illnesses. Ask your doctor to perform the VCS eye test and if the results are positive for neurotoxins, seek treatment by a knowledgeable doctor. More information concerning neurotoxins can be found in the book called, Desperation Medicine, by Dr. Ritchie Shoemaker. www.chronicneurotoxins.com
12. Be sure to find a LLMD (Lyme Literate MD) to properly diagnose and treat you. Only the best will do. Please help promote Lyme Disease Awareness. You may save someone from experiencing a life time of struggle by recognizing the disease in the earliest stages.
[This message has been edited by Tincup (edited 22 May 2002).]
I just got off the phone with Diane's assistant. SHE CALLED ME!!!
She loved the angle of the multitude of children affected, wrong diagnoses being made, uninformed docs and little known Bowen test info that is definitive. I told her insurance won't cover me even though Bowen showed I have lyme.
She asked me to send a short synopsis of the key issues. ACH!! {edited to add, right now I feel I'm not just representing myself, but all of you to be heard}.
I need hard facts in bullet point. No long stories, even my own. Facts/statistics.......I believe we have to emphasize the kid angle along with general population figures and the direction geographically this is going.
I also told her of the celebrity link and the quick film link.
You all have to help me with the bullet points!!!! Posts: 867 | From PA | Registered: Jan 2006
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One bullet point you could use is John's Hopkins latest article about the inaccuracy of the blood tests...someone posted it here just last month.
If and when I think of more I will help you...
Oh, then also the fact that everyone feels this is an issue only in New England...
How about the Lab 257 book - fact this could be an epidemic spread by bacterial studies - might be too much information but would be an interesting attention getter...
Take care and good luck with the bullet points.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
Maybe you could let her know that Darryl Hall just appeared on TV and Amy Tan has spoken out and suggest she contact them as well.
I'm not suggesting your story isn't worth telling because it certainly is, just thinking you could get some connections going between the media and the celebrities!
Posts: 441 | From USA | Registered: Jul 2004
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I didn't stick to bullet points because I'm verbose even on a good day.
Let the edits and additions fly!!!!!!
Kristen,
Thanks so much for contacting me and letting me know you received my email inquiry.
The story I referred to is bigger than just me as a professional woman with 23 years business experience. I was a VP of Business Development for a global company until January of this year. I say "was" because the company let me go in early January '06. While being a top producer, my health made them nervous and it was easier to let me go than see if I got "better".
THE GREAT MIMIC But this information is not just about me. This story is also about hundreds of thousands of Americans who are suffering a life altering, debilitating illness and there are many more at risk in America today... and tomorrow. They don't know it or realize the true devastation this disease causes and how easy it is to contract -- we are talking financial, physical, personal, psychological and social devastation happening every day. And, contrary to popular information, lyme disease is NOT easily cured by simple antibiotics for a few weeks' duration. Again, I need to reiterate, this is life altering and I am living proof.
As in my case, Lyme Disease is frequently mistakenly diagnosed throughout the medical community and covered up by insurance companies who hinder folks getting the treatment they need. I found out that I have Lyme disease 6 weeks ago after suffering from (what I was told erroneously by multiple doctors and specialists) CFS and Fibromyalgia for 14 years. With the aid of a very sharp female doctor (who I found after firing my previous physican) I have something in common with a number of well-know celebrities, including:
Rocker-- Darryl Hall Florida State quarterback --Wyatt Sexson Author --Amy Tan (Joy Luck Club) Author Rebecca Wells --(Devine Secrets of the Ya-Ya Sisterhood) Actress Mary McDonnell Producer --Brooke Landau for E! TV's "Hollywood True Story" and an on-air personality at ESPN Archery champion --Mel Clarke Author --Meg Cabot (Princess Diaries)
Some of their struggles, in their own words are found at the following links:
THE CHILD FACTOR: One of the biggest concerns Americans should be alerted to is the large number of children and the elderly with lyme who are being misdiagnosed! Many kids are losing cognitive and physical abilities. Some are dropped into the bucket and treated as "special ed" kids or not being treated at all! It's tragic. I know of many entire families are suffering from lyme disease (parents and children in the household). Of course, this raises the question...............is lyme contagious? Can it be passed invitro in the unborn etc...or is it an epidemic in the pretty suburban or rural neighborhoods from a multitude of ticks attacking individual bodies?? Also, is it just ticks we should fear? What about mosquitoes, fleas, gnats and bedbugs? It does raise a scary question of how easy this epidemic might turn into a pandemic in the months and weeks to come without attention.
THE FACE OF LYME: The best way to see what the face of lyme sufferers really looks like, I'd like to share a link to a new documentary being made by award winning cinematographers (see link below and click on VIEW SAMPLE). While I am not one of the people in the video, I could be easily as my story is similar. I hope by sharing this the documentary info that it doesn't upstage it's impact and marketability if ABC decides to run an earlier story on the "real lyme" issue. Perhaps the producers would cooperate with ABC and grant an interview? I'm sure they have done a lot of the legwork and documentation on this epidemic and could share this with your producers as a preview to their work for distribution.
COLUMBIA OPENS ITS DOORS If you are looking for a medical edge, it was recommended to me that your team contact Dr. Fallon at Columbia. I've heard that he not only has a handle on the lyme disease crisis, but also recognizes that Lyme disease is everywhere in the US. His group is being bombarded with people being misdiagnosed from all over the country.......for such diseases as CFS, Fibromyalgia, MS, ALS, Osteoarthritis, lupis, etc...when they actually have Lyme disease. Frightening, isn't it?
Columbia recognizes that docs don't want to touch lyme for fear of retribution from AMA and insurance companies and still Columbia struggles right now to be heard. They will be opening their doors--the first Lyme disease clinic -- in April 2006!!!
INSURANCE CRISIS Don't even get me started on insurance companies......many horror stories to share. As I mentioned, I myself was diagnosed 6 weeks ago as having chronic lyme after being inaccurately diagnosed with Chronic Fatigue Syndrome (CFS) for 14 years. Icing on the cake? My insurance company will not pay for my IV antibiotic treatment and I lost my job for no good reason except that I had to take FMLA leave for 3 months when my body crashed in 2005.
What else can I provide to you for discussion?
Posts: 867 | From PA | Registered: Jan 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I think that sounds great!!! Im sure others will be along to comment....but it looks good to me.
Congrats on getting there attention.........this is the time for us to gain some momentum. Daryl Hall was on TV today....lets keep it going.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
You did a terrific job. Congrats.
Posts: 2276 | From united states | Registered: Jun 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
really nice job with this!
Posts: 2549 | From never never land | Registered: May 2005
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posted
Tothepoorhouse, You go!!! This is such fantastic news!!!
You'll do great bullets don't worry.....
KEEP US POSTED!!!!!!!!!!!!!!!
Hugs,
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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In his first TV interview since his diagnosis, Daryl Hall, half of the legendary musical duo, Hall and Oates, breaks his silence on his battle with lyme disease.
Hall says he was on tour last July with former bandmate, John Oates, when the symptoms first hit him.
He tells, Inside Edition, "I was in the middle of a song and it just felt like a complete core body shutdown. Its like somebody just turned the switch. I felt like I was going to faint, throw up, fall downeverything all at once."
Hall and Oates cancelled what was scheduled to be a summer-long tour and, at the urging of his then girlfriend, he got tested for lyme disease, which is caused by a single bite from a tick carried by deer.
Hall says he had mixed feelings about the diagnosis, which can be deadly. "At first, I had relief because I said, okay, now I know that I have something, but then the fear came. The more I read about this, the more I heard about it, the more it scared me," he said.
Lyme disease can cause heart problems, stroke, arthritis, memory loss, blindness and mood swings.
Hall says he decided to go public because he says there are so many misconceptions about the disease and its treatment. "It's really paradoxical and confusing that something as serious as this disease is so misunderstood and underplayed."
He continues, "I hear, you just take a course of antibiotics and its over. It's like you get it and people think it's nothing. That's the crime of the whole situation."
Hall's been taking massive doses of antibiotics for a year and hopes he can beat the disease. Meanwhile, he's teamed up again with John Oates for a new US tour, and will appear on this Thursday's episode of Will & Grace.
Posts: 856 | From Texas | Registered: Jan 2005
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2. "I know of many entire families are suffering from lyme disease (parents and children in the household)" ---> remove the "are"
3. "Can it be passed invitro in the unborn" --> in vitro
4. "I hope by sharing this the documentary info that it doesn't upstage it's impact" --> remove either the "this" or "the"
Posts: 856 | From Texas | Registered: Jan 2005
| IP: Logged |
posted
Well, gee...thanks for the kudos but I really expected more edits! Thanks for the second pair of eyes everyone! ))
I need to add in the info for Bowen......she wanted to know about the test that provides a higher accuracy.
I did write to alert her to the Daryl Hall interview (I didn't see it). She wrote back to thank me and told me she'll look for my message tomorrow.
Anything else?
Posts: 867 | From PA | Registered: Jan 2006
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bettyg
Unregistered
posted
Outstanding 1st draft; very comprehensive & impressive.
Please have shorter paragraphs. I'll show other IN the paragraph you wrote....
quote:Originally posted by tothepoorhouse:
THE GREAT MIMIC - 300 other illnesses mimic lyme disease. ==============================
But this information is not just about me. This story is also about (delete hundreds) thousands of Americans who are suffering a life altering, debilitating illness, and there are many more at risk in America today... and tomorrow.
They don't know it or realize the true devastation this disease causes and how easy it is to contract -- we are talking financial, physical, personal, psychological and social devastation happening every day.
And, contrary to popular information, lyme disease is NOT easily cured by simple antibiotics for a few weeks' duration. Again, I need to reiterate, this is life altering and I am living proof.
As in my case, Lyme disease is frequently mistakenly diagnosed throughout the medical community and covered up by insurance companies who hinder folks getting the treatment they need.
I found out that I have Lyme disease 6 weeks ago after suffering from (what I was told erroneously by multiple doctors and specialists) CFS and Fibromyalgia for 14 years. With the aid of a very sharp female doctor (who I found after firing my previous physican) I have something in common with a number of well-know celebrities, including:
Rocker-- Darryl Hall Florida State quarterback --Wyatt Sexson Author --Amy Tan (Joy Luck Club) Author Rebecca Wells --(Devine Secrets of the Ya-Ya Sisterhood) Actress Mary McDonnell Producer --Brooke Landau for E! TV's "Hollywood True Story" and an on-air personality at ESPN Archery champion --Mel Clarke Author --Meg Cabot (Princess Diaries)
Some of their struggles, in their own words are found at the following links:
One of the biggest concerns Americans should be alerted to is the large number of children and the elderly with lyme who are being misdiagnosed! Many kids are losing cognitive and physical abilities. Some are dropped into the bucket and treated as "special ed" kids or not being treated at all! It's tragic.
I know of many entire families are suffering from lyme disease (parents and children in the household). Of course, this raises these questions
1. Is lyme contagious? 2. Can it be passed invitro in the unborn? 3. Or is it an epidemic in the pretty suburban or rural neighborhoods from a multitude of ticks attacking individual bodies? 4. Also, is it just ticks we should fear? 5. What about mosquitoes, fleas, gnats, and bedbugs?
It does raise a scary question of how easy this epidemic might turn into a pandemic in the months and weeks to come without attention.
THE FACE OF LYME
To see what the faces of lyme sufferers really look like, I'd like to share a link to a new documentary being made by award winning cinematographers
(see link below and click on VIEW SAMPLE). While I am not one of the people in the video, I could be easily as my story is similar.
I hope by sharing this the documentary info that it doesn't upstage it's impact and marketability if ABC decides to run an earlier story on the "real lyme" issue.
Perhaps the producers would cooperate with ABC and grant an interview? I'm sure they have done a lot of the legwork and documentation on this epidemic, and could share this with your producers as a preview to their work for distribution.
If you are looking for a medical edge, it was recommended to me that your team contact Dr. Brian Fallon at Columbia University in New York.
I've heard that he not only has a handle on the lyme disease crisis, but also recognizes that Lyme disease is everywhere in the US. His group is being bombarded with people being misdiagnosed from all over the country.......for such diseases as CFS, Fibromyalgia, MS, ALS, Osteoarthritis, lupis, etc...when they actually have Lyme disease. Frightening, isn't it?
Columbia recognizes that docs don't want to touch lyme for fear of retribution from AMA and insurance companies, and still Columbia struggles right now to be heard. They will be opening their doors--the first Lyme Disease Research Center in the World -- in April 2006!
INSURANCE CRISIS
Don't even get me started on insurance companies......many horror stories to share. As I mentioned, I myself was diagnosed 6 weeks ago as having chronic lyme after being inaccurately diagnosed with Chronic Fatigue Syndrome (CFS) for 14 years.
Icing on the cake? My insurance company will not pay for my IV antibiotic treatment, and I lost my job for no good reason, except that I had to take FMLA, Family Medical Leave Act, leave for 3 months when my body crashed in 2005.
What else can I provide to you for discussion?
I'd mention also about having a western blot igm/igg done at Igenex in California, Bowen labs in Florida, or MD labs in New Jersey. Only these labs tests for ALL strains of lyme and tick-borne co-infections.
By testing positive on the western blot, it is the clinical diagnosis by your PCP who diagnoses us with Lyme disease or 1 of the many co-infections.
This is what I noticed as I read thru your wonderfully written story! You are talented.
IP: Logged |
posted
I want to wish you the best of luck with this project and your health. I don't know where you are in this process, so I thought I would send along my most recent drama due to having this illness for 20 years.
I had to become a Quadriplegic to find out that I have Lyme Disease AND that I passed it onto my childen?
There are several things I distinctly remember the two days before I became a quadriplegic. I remember feeling too tired and a sadness that was different than my usual melancholy. I walked into my husband's office on that Sunday and told him that something just didn't feel right. I had a sore throat and was more tired than usual, but there was something else, something more that I couldn't quite explain to him, but that something wasn't right. Now, I know that it was the infection in my brain. I can explain the sadness now as a foreboding feeling - something ominous.
I told him that I was going to go to bed early. I was going to try to get a good night sleep and put the oncoming ``cold'' behind me with positive thoughts. I had too much work to do. I didn't have time to get sick. When I woke up Monday morning I didn't feel great, but I didn't feel that much worse either. I never really felt great anymore, so I tried to motivate to get up to my office to start working. I had my helper that morning and she was going to help me do some paperwork since my hand was still in a cast.
Cathy and I worked through the morning and I felt like we accomplished some things. About noon I had a wave of exhaustion suddenly come over me. And although Cathy was my home helper, I remember feeling like I wanted to get to bed and be alone even though I felt something about to happen. The best way for me to describe it was that something very personal was about to happen to me and I didn't know Cathy well enough for her to see me in that state. I sent her home and decided to go lie down to take a nap.
I took off my work clothes and crawled into bed. My head hadn't even hit the pillow when it felt like a bolt of lightening went through my head. I sat up and knew immediately that something was wrong. At first I thought I was having a stroke. From that moment on everything happened so quickly, but almost two years later I can remember it as if it were yesterday. I remember thinking that I needed to remember as much detail as possible...that what was happening would have a profound significance and that in order to tell the story later I would have to remember the details. I was afraid and felt so alone.
As I stood up I felt the presence of a being to my right side. It seemed more male and He was holding me and spoke to me (without speaking) and said, ``just keep breathing - it is your lifeline to God.'' I somehow knew that it was an Angel. I wondered what he meant about breathing. I didn't ``see'' the Angel again, but know that He was there and helped to save my life. Thinking about it today brings tears to my eyes. I had felt so vulnerable, small and frightened, yet He made me feel safer.
I then tried to dial my husband's mobile number. It took me a while to get his number correct and I was starting to get panicky that something was about to happen to me and that I would be alone. I was able to reach him and told him that something was happening to me. I remember thinking how quietly effective he was in those moments when he was trying to reassure me that I would be o.k., but to call the police. I knew that I didn't have a lot of time before I would not be able to dial and speak correctly so I hung up and tried to call the police. It took me several attempts to dial 911. It was difficult for me actually punch the numbers on the phone, but it was difficult for me to know what a nine was and what a one was.
During the call to the police I fell down. My legs couldn't hold me up any longer and my hands had started shaking. The operator told me the fire department was on the way and I begged her to stay on the line with me because I was so scared. I crawled to the front door and tried to turn off the security code. The firefighters almost smashed the door down anyway because I was having difficulty remembering and punching in the four digit code.
When I finally got the door open the firefighters asked me why I couldn't walk and why my hands were shaking. They picked me up and put me in a chair in the living room and started asking me questions. Since my vitals were good and I wasn't speaking right they asked what kind of medications I was on and automatically assumed that it was some kind of an overdose. Although I couldn't speak clearly anymore I do remember being very coherent, although things seemed to be going in slow motion.
While sitting in the chair my feet started to tingle and go nu mb and this sensation started crawling up my legs. When the phone rang I knew that it was either Brad or Misty. I asked the firefighters to get the phone, but they wanted me to hold phone and hit the button. I hated the way that I was treated that day. The police emergency operator must have told them about the suspected overdose because they all treated me as if I was a pathetic, depressed, suburban soccer mom. In all fairness, I'm sure they had seen plenty of them in our community, my vitals were still normal and I was starting to babble. They were resistant to answer my phone and I had to beg them to hit the speaker button. It was my best friend; my husband was concerned enough to call her and told her that something was wrong. I was still able to speak a little and was able to tell her that ``I was in trouble, please come.''
When my friend showed up, she knew me well enough to know that something was very wrong when she saw me. She later told me that I was very white and looked like I was about to die. About the time she arrived I did believe I was going to die. The paralysis had reached my chest and I was trying to tell the firefighters that I would need a breathing tube because it was getting difficult to breath They finally put me on a gurney and wheeled me out to the ambulance. As they were putting me into the ambulance that is when my throat closed up. Everything went black.
Then I saw a golden light, a huge door and felt an enormous magnet pulling my body. I was bathed in the golden light, but I never got too close to it. I didn't feel like it was my time to die yet. I had such overwhelming sadness thinking that I was leaving my husband and the boys. I was able to communicate as the Angel had communicated with me -like a telepathy - that I wasn't ready to leave yet. I told this force that I wasn't done with my work with the children or whatever else I was supposed to do here. I heard the words, LOVE, LEARN AND TEACH over and over while the light and the magnet receded. Suddenly my throat opened back up and I was able to breath again and knew what the Angel had meant when he told me to keep breathing. I began to cry and thank God that he was allowing me to stay.
It took us five more months to find out that this was a another brain infection due to a complication of Lyme Disease....even though the most presigious doctors in Boston told me I had been cured of Lyme in 1985. It has taken me two years and I can walk (partially) and we now continue to focus on the health of our two children who got Lyme in utero.
Posts: 298 | Registered: Nov 2004
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I just got off the phone with Diane's assistant. SHE CALLED ME!!!
She loved the angle of the multitude of children affected, wrong diagnoses being made, uninformed docs and little known Bowen test info that is definitive. I told her insurance won't cover me even though Bowen showed I have lyme.
She asked me to send a short synopsis of the key issues. ACH!! {edited to add, right now I feel I'm not just representing myself, but all of you to be heard}.
I need hard facts in bullet point. No long stories, even my own. Facts/statistics.......I believe we have to emphasize the kid angle along with general population figures and the direction geographically this is going.
I also told her of the celebrity link and the quick film link.
You all have to help me with the bullet points!!!!
posted
To the poor house I would definately forward all of that info that Art doherty just posted two posts ago...
THey are GREAT stories all documented of celebrities..Some of the most intersting stories I have seen this far about lyme.....they could defeinately use that!!!
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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