Join the discussion below, or Read more at NBC 4 Washington, DC.
#21 Jun 17, 2008
Thank you for taking the time and being brave enough to confront this. There are countless voiceless victims out there being told there is nothing wrong with them, as their bodies deteriorate by the hour. This is a very important message that needs to get out.
#22 Jun 17, 2008
Thank you so much for reporting on Lyme disease and the upcoming documentary "Under Our Skin". It broke my heart watching Amber's mother talk about her daughter in "Under Our Skin", and it touches me even more deeply now that I have seen pictures of Amber, a sweet young girl with her life ahead of her, whose life was tragically cut short because the medical system failed her.
Lyme disease is the fastest growing infectious vector-borne disease in the United states, and it is a major problem both nationally and internationally.
Though there were 21,000 cases of Lyme reported to the Centers for Disease control in 2006, the Centers for Disease control--along with many Lyme disease experts, and state epidemiologists--have stated that they believe only ONE out of every 10 Lyme cases are reported--Which makes the amount of cases skyrocket up to 210,000+!
-That is more than the cases of AIDS, West Nile Virus and Avian Flu--COMBINED!-
Many of those cases will go untreated & will suffer from Chronic Lyme Disease, a painful, persistent Chronic infection with no known cure. Some unknowingly will pass the disease onto their unborn children. Many will lose their livelihoods, and others will sadly lose their lives like Amber Platas.
Lyme disease is like a ticking bomb waiting to go off, it would be great to see follow ups on this issue in the months and years to come--Lyme disease is here to stay, and the more people are aware, the less chance they will have of suffering a tragic death from a treatable disease like Amber.
#23 Jun 18, 2008
Thank you thank you for bringing attention to this story. Please keep up the attention on this issue. I have suffered from chronic Lyme for many, many years now and I can't believe doctors are STILL saying that there is no such thing. There oh so clearly is.
With me, the infection is obvious, every time I start antibiotics, my knee swells up, and every time they tap into the knee and drain it, they can find spirochetal DNA by PCR and they can culture live spirochetes. Now, if that doesn't qualifiy for a persisting infection, I don't know what does.
And no, I am not getting reinfected. Since getting sick, I live in the city, never go near grass, and this knee phenomenon has happened in the dead of winter. It's time for the Lyme denial to stop, and for these doctors to just admit that chronic Lyme exists, and what doesn't exist is the cure. We'd all be better off.
#24 Jun 21, 2008
Saw the film in Silver Spring this week - very well done. Well researched, comprehensive, emotional and in the end, hopeful. See a trailer at underourskin.com .
#25 Jun 23, 2008
I want to clarify a point made in the article and touched on by a previous poster.
The number of cases REPORTED to the CDC every year is around 20,000+. This is not the number of cases DIAGNOSED, it is only the number of cases that meet a very restrictive set of criteria for reporting, and which are actually reported to the CDC.
The CDC - not patient groups, the CDC itself - acknowledges the restrictive nature of the surveillance criteria and estimates the number of actual cases diagnosed every year is between 6 and 12 times the number of cases REPORTED - which means the actual number of cases diagnosed in this country every year is about 120,00 to a quarter million.
The number of cases MISDIAGNOSED or missed is UNKNOWN. Given the acrimonious climate described in the film, the overall number is probably significant, possibly in the millions.
I hope this clarifies the first paragraph of the article, which was a bit misleading per the number of cases reported versus diagnosed versus missed.
#26 Jul 23, 2008
I have been diagnosed with ms as well as lyme. Lots of problems and I dont know which to blame. My daughter had a seizure in april which prompted Mris. A lesion appeared on the left side of her brain. A second mri taken 3 weeks later showed a new lesion on the right side. They are looking at possible ms and or lyme. can lyme present this way. My daughter is a marathon rummer, 28 years old, with no presenting symptoms. I live in Pa but my daughter lives in DC Any thoughts thank you so much
#27 Sep 8, 2008
I am from Alexandria, VA and I'd like to know from anyone if you know of a good Lyme's Disease Specialist that is close by or in Washington, DC
Please reply to me at [email protected]
#28 Sep 16, 2008
Hello, I am so sorry to read about your daughter, I she's doing well now. I was also diagnosed with Lyme 2 weeks ago, probably had it 4 to 5yrs. Do you have a local Dr. you saw that treated your daughter? If so could you please e-mail me @ [email protected]
#29 Oct 6, 2008
I too believe I have contracrdd LYME, but as of yet my story mimics many of those here as none of the doctors I have seen seems to agree, and my test for it have been negative. I'm wondering if you ever received info on a doctor that would care to share? I have a name of one in Gaithersburgh, a DR.Alan Vinitsky, but have not actually visited him. Unfortunately he doesn't participate in my insurance (Aetna)... Any help here is appreciated and certainly call the above doctor yourself if you are still searching... I just cannot give you a first hand referral. Good Luck.
#30 Dec 1, 2008
I highly recommend the interviews on the Lyme disease research database. They interview both people that have beat Lyme and experts that treat it worldwide. You have to take a Integral approach to beating Lyme, it is rare that just any one approach like anti-biotics will do it because of the unique nature of the bug and the complexity of its co-infections.
A good place to start- http://www.lyme-disease-research-database.com...
#31 Dec 2, 2008
I was bitten in Feb. 78. Cure is molybdenum. It takes about 30 minutes. Copper is the cause. Too much copper. Beer, pipes, jewelry anything copper lowers Moly B. Lyme feeds on arginine. ex. coffee and meat. Take lysine to lower arginine. Google all things copper but don't believe EVERYTHING you read. Make up your own mind. Make print outs don't bother storing in Bookmarks. You will figure the whole thing out. We are experts on research. You will learn a bunch. God bless you. It is OVER.
#32 Jun 19, 2009
Thanks everyone who posted! I have Lyme's but had to fight for a test, despite having pulled 6 ticks off my body in 6 months Jan/June and at least one before that in Nov. 08. I know 2 at least were deer ticks, 2 were nymphs of some kind and 2 were dog ticks.
I had severe neck pains begining in April.(3 wks after tick bite). Then I had aches all over my body, fatiuge and mental fog.
I have 4 indoor out door cats, and share 2 large dogs with my BF plus kayak and garden alot. Plus I live in Loudoun Co. This makes me "High Risk". Yet I could not get tested!! They told me it was something else.
I am convinced I may also have Babeosis because I am anemic and have a low WBC too boot with fever. But they won't entertain that idea or test for it because my liver and kideny functions on the CBC were normal.
I am currently seeking out a Lymn's specialist - and I will get someone on board that actually knows how to treat this. My primary care has no idea - and the health care HMOs are useless too.
You should not have to lie to get a test if you have a High Risk profile, and are pulling ticks off your body!(and now I have developed a severe reaction to tick bites of all types - intense intense itching and failure of bite site
to heal properly. Lucky I guess, because when a tick bites me now, no matter how small I really feel it right away!)
At any rate for all the Lyme's sufferers in the No Va. MD area, our library is having a Lyme's symposium:
Lyme Disease Awareness Symposium
Saturday, Jul. 25, 9:00 AM - 12:00 PM
Panel presentation and discussion with experts including physicians, a veterinarian, a Loudoun County Health Department representative and a patient advocate. Topics will include awareness, prevention, symptoms, diagnosis, medical treatments, alternative treatments, support groups, research, and resources.
A "Before Hours" program.
Recommended for adults. 9:00 AM - 12:00 PM.
#33 Mar 18, 2010
Who was your doctor please? i need help for Lymes I am at [email protected]
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