Lyme Disease Film Sheds Light On Debate - Health News Story - W...
Join the discussion below, or Read more at NBC 4 Washington, DC.
#1 Jun 16, 2008
Wow, this is a personal issue for me since I was diagnosed with Lyme's in July, 2003. For months I ran fevers in excess of 103, could barely walk at times, and FINALLY, a year later after succumbing to Bell's Palsy (an unfortunate side-effect of Lymes), a doctor finally diagnosed me correctly. For months, two different HMO doctors told me that I was suffering from some auto-immune deficiency, what they blame everything on when they don't know. Lymes is nothing to play with, I am very lucky that I came out of it as well as I did. Get educated about this people.
#2 Jun 16, 2008
Don't believe what the CDC says about Lyme disease!!! Find a Lyme Literate MD and get tested through Igenex Lab in CA.
#3 Jun 16, 2008
Scary another unreported disease.
Nice job msn nbc 4 wrc for the story line about Washington area Lyme Disease.
#4 Jun 16, 2008
I had gone over 2 years undiagnosed and had seen over a dozen different doctors that had no idea what was wrong with me and told me I would have to live with this. No one could figure out why my extremities were numb and I was having trouble walking or moving.
Recently they have found that I have Lymes by testing for antibodies (Western blot test is only 25% effective) and they also found two other coinfections carried by ticks. My liver and kidneys have significant problems, my heart developed such a significant issue that I recently had to have a cardiac procedure and I regularly have rashes and low grade fevers.
It's unbelievable what one insect can do to the body. Lyme's specialists cannot take insurance because their treatment does not meet the guidelines so you end up spending thousands. It's also very difficult to get in to see these specialists - they are so busy that they are booked out for months - sometimes out to a year. Thank goodness I have finally found a doctor that has taken the time to help me. I was so frustrated and afraid that I was going to die from this.
#5 Jun 16, 2008
I am a self proclaimed "Lyme Bore" -- I bore everyone around me with dire warnings and information about tick borne diseases because of my now 16-year old daughter's nightmarish experiences. Even today, with as much publicity about Lyme as there has been, you can go to your doctor in Loudoun County (an endemic area) with a documented tick attachment and be told to "wait until you have symptoms" before he or she will prescribe three weeks of oral antibiotics. Regrettably, most of these physicians have learned nothing about Lyme beyond medical school, where they were erroneously taught that Lyme is no big deal. Tell that to my daughter, who went undiagnosed for five years and who has lost four years of her childhood since then, homebound and in pain. This disease has also cost our family more than $500,000 in lost wages while I have been homebound with my daughter.
#6 Jun 16, 2008
I'm so happy that NBC 4 did this report. My husband was a happy, healthy, active person until 6 months ago when he started with many unexplained symptoms. He saw a slew of doctors and had an unbelievable amount of tests done, but no doctor could tell him what was wrong.
He tested negative for lyme, but we still believed he had it. I happen to take an antibiotic for acne that is also used to treat lyme, so we tried him on it. After one week, he was 90% better. We now are seeing a lyme literate doctor to treat him.
My husband is one of the lucky ones. No one should have to go through the years of pain and suffering that so many go through. The CDC and doctors need to step up to the plate and recognize that lyme disease, including chronic lyme, is real and that there is much more to learn about it.
#7 Jun 16, 2008
Thank you for this informative article. Most people don't understand this disease, including members of the medical community. We definately need more Lyme Awareness
#8 Jun 16, 2008
This is a very scary disease. I first started complaining to my primary (and not an HMO either) about nuerological issues, fatigue, major mood swings, and pain......her great response was that it was motherhood and that I should see a counselor.
Several doctors and about a year later (back and fourth between traditional medicine and alternative/complementary medicine) I am finally on the mend.(or as one doctor puts it..I'm just in "remission" and it you are never really cured from this........
#9 Jun 16, 2008
My Grandson was in Children's Hospital last year with Lyme Disease. Aching joints and the rash. Parents can't stress enough to check your kids for ticks. If you live in a wooded area, make sure the kids wear long pants and shirts. Can't say enough for Childrens Hospital, they were right on the money.
Since: Jun 08
#10 Jun 16, 2008
Thank you for interviewing the Platas family about tick borne diseases and announcing the documentary at Silverdocs. My son and I removed our latched ticks in the winter of 2005. Within 5 weeks, I was not able to go up and down the stairs because of hurt knees, I could not remember what I had just read, I was tired all day, and I had horrible shin pain. Although I was 54, I had never been ill with more than a cold or the occasional flu.
My 19 year old son only missed a day or two of school each school year.
He became anorexia-like (lost 10 pounds within 5 weeks), had a twitching eye, swollen glands, low grade fevers and insomnia.
Tick borne disease is complex and nuanced and takes on different manifestations.
We need more news stories like yours to shed light on the nuance and complexity of these stealth pathogens.
#11 Jun 16, 2008
Just in case anyone needs a good resource, Dr. Shor (of Internal Medicine of Northern Virginia) in Reston is a great resource with the treatment of LYME......
#12 Jun 16, 2008
A message to Cindy;
Here on the West Coast we are cursed with Kaiser. I know from my experience and that of many others, they simply do not diagnose late or chronic Lyme because of potential expense.
That aside, I underwent 11 cardiac catheter procedures in a little more than 12 months when my cardiologist was trying to find the source of my arrythymias. No luck. He meant well but was hindered by Kaiser's Lyme guideline that only acknowledged one specific cardiac symptom for Lyme disease. This symptom, AV block, only occurs in early Lyme according to medical studies. I had undiagnosed Lyme disease for 6 years.
I figured if I didn't find out what was wrong, I wasn't going to live. It took me minimal research and I paid for a Western Blot to be done at Igenex. It turned out CDC positive and Kaiser still would not diagnose. But when I figured out Lyme was my problem, I started ordering meds from Mexico until I was able to change health plans and see a specialist (a 10 hour drive).
The antibiotic that helped me the most was tinidazole. In a few weeks, the arrythymias cleared up. Perhaps it can help you as well.
#13 Jun 16, 2008
My heart goes out to the PLATAS family on the loss of their dear daughter, Amber!
To all of you in the area, I highly recommend your going to see UNDER OUR SKIN chronic lyme documentary.
I've had chronic lyme disease for 38.5 years; 34 years MISDIAGNOSED by 40-50 doctors/specialists!
I was later to learn there are 300 OTHER illnesses that mimic lyme disease!! 300 !!
Since reporting began in 1980 we have increased from 120 cases a year to over 20,000 cases per year, nationwide. These figures represent ONLY the reported cases.
According to the CDC, for a more accurate figure multiple the numbers by 10. That will provide you with the CDC 10-fold assessment totals and will show what they believe to be closer to the actual number of cases occurring.
And note: 75-90 percent of people with Lyme are being missed using the current standard tests, according to Hopkins and ILADS studies.
These people have little chance of ever being counted, much less diagnosed and/or treated properly, which can result in hundreds of thousands developing late stage Lyme and possibly becoming disabled or worse in the next few years.
To see your states figures....
Betty note: I tried printing out the chart, but it goes SIDEWAYS, and tried printing in pages 1, 2, 3; it kept printing page 1 only!
So just a warning if others try to do this; use your PRINT REVIEW FIRST which I did, and indicated DIFFERENT pages, but still got page 1 only! I gave up after 8 tries! uffda :)
Our Lyme disease bills have been in Congress 10.5 years going nowhere!!
Now, the IDSA, Infectious Disease Society of America aka infectious doctors are using all their power of their 8,000 membership to STOP US from finally getting our 2 lyme bills on the SENATE and HOUSE REP AGENDAS for a hearing!!!
S 1708 and HR 741 will establish a tick-borne advisory committee for research and up to $100,000,000 divided into 5 years to pay for this.
Why can't we with Chronic Lyme deserve the SAME treatment as: cancer, HIV/AIDS, and all patients!!
WHY should all our expenses be paid OUT OF POCKET where many of my lyme friends have lost everything and now HOMELESS??
Betty G in Iowa
#14 Jun 17, 2008
This is why we are being missed in the CDC count. The standard test is the 41+ year old ELISA, which Allen Steere spun into a arthritis of the knee at the 2nd Serogicial Conference on Lyme Disease in 1994 at Dearborn Michigan.
Go to this site and be enlightened.
Read for yourself.
#15 Jun 17, 2008
I have been fighting with Dr's and insurance companies for the past year for my daughter. No one wants to admit that this disease is a problem. After one year of treatments she is finally starting to improve. Thankfully our school district worked with us so that she could keep up with her classes and graduate with her classmates. Unfortunately her G.P.A. suffered and she was never well enough to sit for the S.A.T.'s I am thankful for the few dr's out there that are working to find successful treatments. Unfortunately they are out of network, so the reimbursement to us is nothing - 10%. We have paid roughly $7,000 out of pocket and this continues to add up, as she is taking many supplements. I have friends that have a lot more medical costs than that, as their entire family is plagued with this disease. Our Government needs to get on board to help these many many victims of this disease.
We need more labs to diagnose this problem as there is only one in the country that has 100% results. Thank you NBC4 for doing this segment to raise awareness of this disease!!!!
#16 Jun 17, 2008
It took years to correctly diagnose my Lyme Disease, and in the process I have suffered heart damage, permanent nerve damage resulting in only 50% function of my lungs. I have severe swelling in my legs, cognitive symptoms, unrelenting fatigue and vertigo and a large scarring tumor in my liver.
Doctor after doctor belittled my condition, although I had fevers daily for years, swollen lymph nodes, the classic bulls-eye rash (was misdiagnosed). Too bad physicians are not taught to be cautious regarding lyme disease - too many people suffer permanent damage due to their ignorance. Not only do I pay the permanet price, but so does my small son who constantly worries about if his Mom is going to make it.
Thank you for nbc4.com for shedding more light on this serious epidemic. My gratitude to you, Kat
San José, Costa Rica
#17 Jun 17, 2008
Thank you for this article!
Indeed, Lyme disease is the fastest-growing infectious disease in the United States, but information about chronic Lyme is being suppressed and denied by the ISDA, Infectious Disease Society of America. Perhaps the ISDA doesn't want to be held accountable for the thousands, perhaps millions, of misdiagnosed cases of chronic Lyme disease; perhaps there is some other agenda, but the fact remains: those with chronic Lyme know that they remain infected, even after they have been treated with a standard course of antibiotics. Perhaps people should be asking, "Why should thousands, or millions, of chronic Lyme sufferers purport to still be ill with the infection, if what they are really suffering from, is post-Lyme syndrome? Have so many people really been brainwashed into believing that they are infected, when they are not? Are millions of people really that stupid?" Or perhaps the real answer lies in the fact that, when traditional testing methods have failed to produce accurate results and patients' physicians fail to provide adequate treatment, these patients then get tested by one of the ONLY two labs in the United States that provide accurate results (Central Florida Research and IgeneX), and find that indeed, the bacteria are still present. Perhaps they then find Lyme-literate physicians who are willing to help them, and subsequently improve after months, or years, of antibiotic treatment. As a chronic Lyme disease sufferer, I am one of these people. An infectious disease specialist and many other physicians, some of who told me that my illness was "all in my head" prompted me to do my own research and seek healing on my own and through Lyme-literate health care practitioners. I have subsequently experienced tremendous improvement in my symptoms as a result of treating my Lyme disease--but it has taken years for me to heal; not weeks, not months- but years, as is usually the case with most chronic Lyme disease sufferers.
Awareness of the truth about this disease is of paramount importance, as most Lyme disease patients and Lyme-literate physicians believe it to be an epidemic in the United States. Even the CDC, with its flawed data, admits that the number of reported cases per year (around 20,000) is probably underrepresented by a factor of at least ten. So there are more like 200,000 new cases every year. But as long as the ISDA continues to actively suppress the truth about Lyme disease, I imagine that thousands, perhaps millions more, will have to become sick before adequate diagnosis and treatment are given. What a shame.
Please keep seeking the truth behind this disease. The well-being of millions; indeed, of our entire nation, may depend upon it.
Thank you again for your article on Lyme disease and for reporting on this documentary!
Author, "The Lyme Disease Survival Guide: Physical, Lifestyle and Emotional Strategies for Healing."
#18 Jun 17, 2008
My son is 22 and was told he had a mild form of lime disease. He took antibiotics for 2 weeks. He is very upset because some doctors are saying he does'nt have lime disease but he said he has tingling in his face his fingers his arm and his wrist and neck feels stiff. Please help us in figuring this out. He cannot get in to see any specialist until mid July.
#19 Jun 17, 2008
First: make sure that specialist is Lyme Literate and open minded.
Second: Keep a daily record of symptoms, including the tingling, headaches, stomach problems, fatigue & naps taken, irritability, depression, anxiety, panic, cognitive symptoms -- anything and everything, no matter how minor or unrelated it may seem to you or to him.
Third: If you haven't already, buy Pamela Weintraub's book Cure Unknown, by St. Martin's Press.
Fourth: Go to the Silverdocs link on this website and see if you can get tickets to Under Our Skin for Monday, June 23rd. There will be a panel of lyme literate doctors at that screening.
Fifth: Good luck. By chance,were you at the Lyme Mom's lunch meeting yesterday at Neisha Thai in Tyson's Corner? If you want to, please contact me at [email protected]
#20 Jun 17, 2008
See if your primary will also test your son for a Babesia (a secondary infection you get from a tick bite)...if he's positive they should presribe meds to tide you over until you can see the specialists
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