posted
I started a thread on the Doctors (TV show) forum about Lyme Disease (on February 2, 2009 - Top Five Health Scares: Are You at Risk? → Lyme Disease is epidemic).
Now they are asking for our stories!!!
As they're asking for our suggestions as well, maybe we could mention certain doctors we'd love to see on the show, etc..
So, I'm hoping with our feedback they'll do a whole show on Lyme!
I think you all may have to join the community first before this link works.
posted
Awesome!...Too funny, I was just watching it yesterday and said to my mom "I should write in about Lyme disease." This is great, I'm so excited. Going to write in now.
Ann
-------------------- If you keep doing nothing...nothing changes!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi,
Good job allie!!!
I sent them this email tonight...
As a Registered Nurse and a sufferer of Lyme disease, I can tell you that the public and the medical community in general is not aware of the epidemic of borrelia burgdorferi infection (lyme disease).
There are very few physicians who are properly educated about Lyme disease.
For that very reason, I was given a fibromyalgia diagnosis for 21 years. I always knew that the cause of my illness was likely an infectious one.
It was only through my own research and determination that I was finally diagnosed with Lyme disease after 21 years. Now that is what I call CHRONIC LYME!!
My case is not unique. Many Dr's will tell you that first you will see a bullseye rash and then the patient will be treated with a few weeks of antibiotics and be cured!
I never had a bullseye rash and I don't remember a tick bite. 50% of people do not remember either one.
When I had the first sign of being sick....a flu-like illness in the late summer/early fall , I was told I had a virus.
Later when I developed muscle pain, fatigue and insomnia, I was told I had fibromyalgia, for which the cause is unknown. Patients given that label can expect nothing further, since Dr's will not search for the cause of an illness where the cause is "unknown".
Most physicians cannot see the big picture. I personally know at least 8 other people whom I believe are also infected with Borrelia burgdorferi, the bacterial spirochete that causes Lyme disease.
Some of the diagnoses commonly given to patients when they are really suffering from a Borrelia burgdorferi infection are: MS, fibromyalgia, chronic fatigue syndrome, Parkinson's disease, ALS, Rheumatoid arthritis, autism, ADHD, Alszheimer's, bipolar disorder and other psychiatric disorders, and others. Lyme has been called the "New Great Imitator".
First, many people who are bitten by a tick are never diagnosed with Lyme right away and never given any antibiotics.
Second, the patients who are given a few weeks of antibiotics are declared cured. Later when they develop neuromuscular and other systemic symptoms, they are told that their symptoms are unrelated to Lyme.
Third, these same patients grow sicker and sicker and are forced to go from Dr to Dr looking for someone with enough knowledge to help them. Usually they do not get the help they need. People die from Lyme disease because it is not recognized, diagnosed or properly treated.
Patients who continue to have symptoms are told by Dr's who are unable to recognize the Borrelia infection, that "it is all in their head" and they need a psychiatrist.
Fourth, testing for Lyme is poor and usually very innacurate.
Almost all Dr's think that if a Lyme screen/lyme titer is negative, a patient does not have lyme. The truth is that a lyme titer/screen misses at least 50% of cases of lyme disease.
If a Dr orders a western blot for lyme, most likely the lab will not test for all bands, which is a necessity. They swear by results that are inadequate and flawed.
Also, most labs, when developing their testing criteria, only included a few species of borrelia bacteria.
Therefore, when those labs run western blots, they will miss many cases of lyme that are caused by strains of Borrelia that are not included in that labs testing methods.
Igenex lab in CA is a reference lab specializing in testing for lyme and other tick borne illnesses. Igenex tests for and reports all bands on a western blot. They included many species of Borrelia bacteria when developing their testing methods.
There is an absolute medical travesty happening right here in our country...only no one wants to notice or admit it.
We search for years for help, and then when we finally get a correct diagnosis from a Lyme Literate physician, we have to pay out of pocket for our medical care, even when we have insurance.
Insurance companies will not recognize that chronic lyme exits because they do not want to pay for thousands and thousands of very ill people's care. They completely side with the IDSA Dr's who also work for insurance co's and drug co's.
If we want any hope of recovery, we have no choice but to pay for our care out of pocket.
Can you ever imagine this happening to cancer patients or AIDS patients?
The IDSA says that chronic lyme does not exist. That is absolutely ridiculous.
Ask the tens of thousands of chronic lyme patients and the ILADS physicians who are the real experts, if chronic lyme exists. The answer is an absolute YES!!! We require long term treatment to have a chance of recovering after so many years.
It is ludicrious to think that a bacterial illness that was undiagnosed for years or very undertreated cannot be chronic.
To complicate our illness, many patients with Borrelia infection also are infected with one or more other tick-borne illnesses that the same tick transmitted.
Bartonella, babesia, ehrlichia and anaplasma are some common tick-borne illnesses.
Physicians cannot even recognize a Borrelia infection, let alone these complicating illnesses.
I suggest you log onto Oprah's message board and look at the topic "Under Our Skin" which is a documentary movie released last year about Lyme disease and look at the over 1200 horror stories from Lyme disease sufferers. Here is the link:
You need an expert lyme physician who is a member of ILADS(a Lyme literate MD) and at least one chronic lyme patient on your show to tell the real truth. A patient who had only short term antibiotics and later had many symptoms after being declared cured, a patient who was misdiagnosed for years, and a patient who recovered with long term treatment, would be good guests.
My LLMD told me today that if we would lump together all the patients who have connective tissue diseases, fibromyalgia, CFS, lupus, MS, alzheimer's, parkinson's etc...and gave them all treatment with antibiotics, he thinks that 50% of them would get better.
There are many, many people in the US who have only been diagnosed with individual symptoms such as migraines, trigeminal neuralgia, chronic sinus infections, irritable bladder, bell's palsy, arthralgia, insomnia, etc who are exhibiting symptoms of lyme disease and other tick-borne illnesses.
They are being overlooked and will never get well because the cause of their illness is never recognized.
The public and the entire medical community needs a huge amount of education about lyme disease and other tick-borne illnesses.
Please do a show on lyme and other tick borne illnesses. There are thousands and thousands suffering. Many of those people do not even know they have Lyme disease. Please help us.
Sincerely,
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
i just sent them this, and when it posted, it was like oprah's board and put all these computer programming codes in there!!
i posted again asking moderators/webmaster if i did something wrong to cause this, and to please let me know. *******************
I've had chronic lyme for 39 years, 34.5 yrs. MISDIAGNOSED by 40-50 drs!
Neuro lyme has really effected me, and daily activities are a struggle.
Yes, we'd love to see one entire show be devote to lyme disease and CO-INFECTIONS meaning that darn tick had other illnesses in it too: bartonella, babsiosa, erlichia, rocky mountain spotted, fever, & many more!
I'd like to see these show ideas:
1. Have NJ HOUSE REP FRANK PALLONE, chair of health sub-committee on who has been holding our TICK-BORNE disease bills in congress for years now out of the over 10 years it's been there!
I'd like to see the 2 lyme bill introducers of our lyme bills present: H Rep Chris Smith and Senator Chris Dodd, Conn. to discuss WHY we can't get our lyme bill SCHEDULED to be on their agenda.
Then they can hash our the lyme war that we chronic lyme/co-infection patients have been put in the middle of while to fight to LIVE!
FYI, Pallone's medical lobbyist contributed almost $500,000 to his campaign fund.
Who is he going to listen too; the people giving him $$ or us, who pay OUT OF POCKET for our appts., treatments, labs, and all other expenses including going OUT OF STATE to see LYME LITERATE MDS, llmds, who treat with the ILADS, Intl. Lyme Associated Disease Society lyme guidelines
vs. IDSA, Infectious Disease Society of America's 06 lyme guidelines that have screwed us lyme patients.
IDSA's guideline panel EXCLUDED OUR LLMDS in the decision making process of updating lyme guidelines.
All the ways our LLMDS treat us they found wrong, and do NOT treat them this way or not.
CDC then went along with IDSA's guidelines and the health insurance cos. got involved and REFUSE TO REIMBURSE US FOR OUR EXPENSES like they do cancer, HIV, and aids patients!!
Huge discrimination there.
I don't know what your word limit is, so will close on this one hoping it will post!
Thank you for your consideration of EDUCATION USA and INTERNATIONALLY!
All 50 states have lyme disease and a link for 1980-2008 can be found here:
posted
i sent them another note today; they also explainedwhy i was getting TEXT FORMATTING CODES in my posts on drs. and OPRAH'S LYME SHOW ...
i was cutting/pasting from MS word to there..NO NO! ***************************************
they said to use NOTEPAD; then cut/paste from there and NO FORMATTING CODES will come along for the ride! very helpful moderator there!
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bettyg
Unregistered
posted
UPDATE ... here is WHY THEY ARE ASKING FOR QUESTIONS!!
03/13/2009 21:45
Canuck Lime Green Ribbon Posts: 1038 Group Leader
On The Marc Media Update:
UNDER OUR SKIN, the documentary that investigates the untold truth of Lyme disease, will be featured on The Doctors, a nationally syndicated show, taped in LA. *************************
They are asking for people to submit questions about Lyme disease for their panel of doctors to talk about on the show. ------------------------
They also want to hear your stories.
Please ask them to do an entire show, not just a segment on UNDER OUR SKIN and the seriousness of Lyme disease.
If you have not seen the show - check your local listings.
It's syndicated so it is on different times and different channels depending on where you live.
Please spread the word and ask people to write in.
The taping is next week so there is not much time. ***************************************
1. Why with all the patents/grant $$ you've gotten, have you NOT come up with a 100% accurate lyme test for patients? UNACCEPTABLE. 2. Also some of your clinical studies have gone on for 10-20 years; no results from what I remember awhile back when I studied them. UNACCEPTABLE. 3. Where did you come up with the screwy 3 wks. MAX antibiotics where some of the IDSA drs. have stated it was NOT ENOUGH to cure? 4. Now many of you are promoting the ONE PILL, YOU WILL BE CURED ANTIBIOTICS! Some of our lyme members have told us this on the lyme boards; disgusting!
TO ALL THE DRS:
1. Do you treat lyme disease or the CO-INFECTIONS 1st? 2. ALL CO-INFECTIONS or just 1 at a time? 3. I can not grasp why ALL DRS. can't work together on this and get lyme disease and co-infections under control. There are many brilliant minds out there, but they are working against each other in my humble opinion. 4. WHO IS IT HURTING THE MOST? US WITH LYME/CO-INFECTIONS!
What will it eventually take for the insurance companies to give us the SAME RESPECT and REIMBURSE US FOR REASONABLE EXPENSES as they do all cancer, aids, and HIV patients?
That's the thing we hate the most!! 100% out of pocket where majority of lyme patients have lost EVERYTHING due to the high costs of treating lyme because INFECTIOUS DRS. did not treat us LONG ENOUGH on antibiotics for months and up to years vs. their 3 wks. MAXIMUM!! UNACCEPTABLE.
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