Documentary "Under My Skin" looks at chronic Lyme Disease

The ISDA has agreed to take another look at its guidelines simply because Atty. General Blumenthal of CT has filed a civil investigative demand to look into if there are any actions being done wrongly in the guidelines of treating lyme disease. Currently there are many doctors throughout the country who are being treated as the witches from Salem for listening to their patients and trying to help them. When the insurance companies, the ISDA, and all the other forces keeping treatment at arm's length finally come to terms with the reality of this disease, then maybe patients will finally be able to get back on the road to health. And the doctors who have courageously stepped out on thelimb for their patients will be looked at with the respect they deserve.

http://www.lymecryme.com

http://www.donttickmeoff.info

Arm yourself with the data, your going to need it.

My son suffered 5 months from "cronic lyme" disease being misdiagnosed and until a doctor in Mt. Kisco took his case. He was totally debilitated... couldn't even get out of bed and missed a semester of school. He had the 12 week course of daily antibiotic IV's and is now getting back to his normal 15 year old self. 5 months is not a long time compared to some of the people we met who have been suffering for years trying many other treatments.

I hope some day the doctor's open their minds and check the egos and work together to listen to each other and look for solutions cooperatively. The data is there... the time isn't.

I think that Chronick Lyme Disease, is simply the so called CFS (Chronic Fatigue Syndrome). When you have CFS you have an impaired immune system, an impaired endocrine system and an impaired nerve system. That is why an infection, either by EBV, CMV or Lyme remains active, because your T activated linfocites are low, your NK are low and you are not able to fight infections, and that is why they remain active so long...
Research should focus on all the links that there are in these illness, the name you give it is the least important thing, the underlying cause is what matters in order to find treatment and cure!

Do you want to know how to spell chronic? There you go. You may be right Lyme dz. could be miss dx in some. But there are many diseases that can cause chronic fatigue. Actually almost every disease process example: depression.

I have had two diagnosis of Lyme with usual oral then IV antibiotics. A positive test for Lyme one month after a negative,(without a new tick bite), caused the dr. to day "That cannot be". Well, it can.
I'd like to know if anyone developed Trigeminal neuralgia after Lyme disease like I have.

I was raise in Lyme Ct. where the Lyme diease got it's name. When I was 12 I came down with the diease. I was treated with asprin for the pain and antibiotics to get rid of the ring looking rash. Over the years I have been tested 3 times twice I tested positive and one was negative. I get flair ups in the winter hips and knees mostly. Sometimes a stiff painful neck. I guess my case is mild in comparison. Most of the time I take Alieve. It is the only thing that truly has helped me. Sometimes I think the medicines that are prescribed cause more side effects then the diease. The diease has to be looked into more that is for sure. It can be painful and yes exhausting at times. What I find though is that it doesn't last. It just flairs up on occasion.
I think the best solution is if you are outside tick proof yourself. Check for ticks when you come in doors. Protect your pets with Frontline or something. If you get the diease. Don't panic. See your doctor. Eventually, there will be a cure.

Thank you for airing this important subject. The CDC has a very restrictive criteria for tracking Lyme disease, knowing that only about 1/10 of actual cases will be identified by this method. Insurance companies, research scientists and some clinicians have used these narrow criteria to exclude thousands of people from a correct diagnosis and prompt and adequate treatment. Thousands suffer. The guidelines of the Infectious Diseases Society of America, key to promulgating such restrictive definitions, are under review after being investigated by the CT Attorney General for antitrust, ethics violations and conflicts of interest on the part of the guidelines authors. Federal legislation that will bring more and better research to this disease is currently being blocked in Congress. We need the help of public outcry to move these bills (S1479 and HR3427) forward, now.

Well Dr. Blaser, what you say should happen is well and good, but what the patient really gets is, "You don't have Lyme...since we don't have it here. It must be something else. You'd better see a psychiatrist." "something else." In my journey with chronic Lyme I've seen three psychiatrists and they each concluded that the cause of my psychological and neuro symptoms was organic and not psychological or due to stress. I've been to over 30 doctors and most of them are ignorant of even Lyme basics. The Lyme experts are only expert at saying its "something else." The insurance companies love it since they don't have to pay. No diagnosis means no treatment needed and bunches of dollars are saved. This squabbling is all about money really. But it is good to see that the pendulum is beginning to swing and soon this nonsense of no diagnosis/no treatment will be in the past. Its AIDS all over again.

I have asked this question my times to many people, doctors, etc over the last few weeks maybe you guys can help. I tested for Lyme's in March it was negative then I re-tested per the doc in June and it was positive but the doctor says I don't have it.....how can that be possible?

I had the classic bulls-eye on my thigh 3 summers ago. I was treated with antibiotics but I have never been the same since. I take 2 750 mg of Nabumetome, an anti-inflammatory,
every day. With this and stretching exercises, I can function -- mostly. I am positive I have still have Lyme but I test negative. God knows what all this Nabumetome is doing to my stomach and liver but without it, I can barely get out of bed and even the bottoms of my feet hurt.

help wrote:

I have asked this question my times to many people, doctors, etc over the last few weeks maybe you guys can help. I tested for Lyme's in March it was negative then I re-tested per the doc in June and it was positive but the doctor says I don't have it.....how can that be possible?

The test can be false negative/positive so it "proves" nothing. There is no definitive test for Lyme and that is the problem.

Everyone looking for more information on Lyme disease should go to www.lymediseaseassociation.org , www.ilads.org , www.lymenet.org , and www.turnthecorner.org , www.lymeinfo.net . All are excellent websites that can lead you to comprehensive treatment and the latest research and political developments. Also, everyone should read "Cure Unknown" by Pam Weintraub. Excellent, excellent book.

There are also a number of other diseases that ticks carry, such as Bartonella, Babesiosis, Ehrlichiosis. People should look into being tested for those as well if they are still having problems.

Just a suggestion but if you are bitten by a tick and you have to pull that tick off of you.....Get a piece of tape and stick the tick to the tape. Bring the tick with you to the doctors and let them examine it. Maybe the tick you were bitten by will have some answers. Maybe the tick you were bitten by doesn't have the diease or maybe it does. At least you would have two diagnosis.

I got lyme last summer. Was sick in a few days. The test said negative and with my research I realized that the test was bs. Since they already sent me home with the antibiotic, I finished the course and it wasn't until a month after the last pill that I felt all the way better again. Now the docs in the area give people one pill and then give them the rest of the rx if the test comes back positive. That is going to lead to many chronic cases I believe--ticks are a huge danger here. I wish they would just throw the test idea away--it's like bleeding that killed our first president. When are they going to figure out they are breaking their oath by using a test that doesn't work?? Do no harm....

If you know you have lyme and rash or not (many people don't get it), go to another doctor until one will give you the antibiotics--it's worth 3 weeks of treatment to avoid problems for the rest of your life.

the problem where I live is finding a doc to believe you then if they do they treat you with 10 days doxy then send you on your way.

Two bills entitled “Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007” are currently waiting for action on the part of Congress. Bill S.1708 was submitted to the Senate by Sen. Christopher Dodd D-CT and 14 cosponsors. Bill H.R. 741 was submitted to the House of Representatives by Rep. Christopher Smith R-NJ and 110 cosponsors.

These bills would:
Establish communication and coordination between publicand private agencies and patient advocacy groups.
Provide for open scientific input when making policy decisions.
Mandate development of new accurate tests.
They also provide for investigation into:
Obtaining accurate counts of infections.
Developing a uniform reporting system.
Educate the public and physicians on diagnosis and treatment.
Evaluate the effects of chronic Lyme disease.

Bill S.1708 is sitting on Sen. Edward Kennedy's desk while bill H.S. 741 is being blocked by Rep. Frank Pallone, and both will die if no action is taken, much as similar bills died from inaction after being submitted to the 109th Congress.

Write these Congressmen to push for equal treatment for LD sufferers.

I was bitten by ticks as a child in the Arkansas Ozarks during our summer family vacations....who knew about Lyme disease in the early 70's much less in Texas?!?!?! I've had ringing in my ears since around the age of 10, non stop, 24/7, 365. I've suffered cognitive problems since junior high and I'm 46 years old now. In my early 20's I was sick with bronchitis, strep throat and the flu quite often. In my mid 20's I began having severe bruxism (tooth grinding/clenching) in addition to debilitating muscle pain. In my late 20's I developed Irritible Bowel Syndrome. In my early 30's I was diagnosed with Fibromyalgia. In 2007 I was diagnosed with Hashimoto's disease and Chronic Active EBV and began experiencing severe panic and anxiety out of the friggin blue...see a pattern here? FINALLY early this year, I was correctly diagnosed with Chronic Late Stage Lyme disease and am now receiving treatment. Only now am I seeing some improvement and some hope at the end of a long dark tunnel that I've been in for many many years. In fact, I've been sick almost my entire adult life.

I would encourage anyone that has been diagnosed with Fibromyalgia, Chronic Fatigue, Parkinson's, Multiple Sclerosis, Lupus (and the list goes on and on) to ge tested for Lyme disease by one of the Lyme sensitive (not your run of the mill Lyme test) labs in the US which is only a handful.

It's amazing that there is no known causitive agent for Multiple Sclerosis, Parkinson's, ALS or Alzheimer's yet millions of people are diagnosed with these diseases every day when in fact a very large majority of them most likely have Lyme disease at varying stages.

My maternal grandfather (grew up in the Ozarks) died of Alzheimer's in 2001 and tracking medical history I would bet he probably died from dementia as a result of untreated Lyme disease. My maternal grandmother (also grew up in the Ozarks) is in a nursing home with what was diagnosed as "Parkinson's" and is more than likely Lyme, doing the math on her medical history over the years, it all adds up to Lyme. My paternal grandmother is also in a nursing home with "Alzheimer's" which is most definitely Lyme disease.

How said it is that the medical community is at such odds over this horrible disease and people have suffered, are suffering and will suffer because of it.

GET TESTED FOR LYME, BETTER SAFE THAN SORRY!

Terri wrote:

I was raise in Lyme Ct. where the Lyme diease got it's name. When I was 12 I came down with the diease. I was treated with asprin for the pain and antibiotics to get rid of the ring looking rash. Over the years I have been tested 3 times twice I tested positive and one was negative. I get flair ups in the winter hips and knees mostly. Sometimes a stiff painful neck. I guess my case is mild in comparison. Most of the time I take Alieve. It is the only thing that truly has helped me. Sometimes I think the medicines that are prescribed cause more side effects then the diease. The diease has to be looked into more that is for sure. It can be painful and yes exhausting at times. What I find though is that it doesn't last. It just flairs up on occasion.
I think the best solution is if you are outside tick proof yourself. Check for ticks when you come in doors. Protect your pets with Frontline or something. If you get the diease. Don't panic. See your doctor. Eventually, there will be a cure.

Terri, each person seems to react differently to Lyme. I have Lyme, so does my husband. Our symptoms are not the same. Mine has gone into my muscles, his has gone into his gut. I was not diagnosed for nine years and become extrem. ill. I know I am not alone. Keep well.