NEWS: You can submit Lyme testimony to Sen. Blumenthal
Via the following web link, you can tell your Lyme story and have it entered into the Congressional Record.
Several individuals affected by Lyme disease told their stories at Sen. Richard Blumenthal’s Lyme hearing last month in Connecticut. But they represent only a fraction of those who have been impacted.
Now, Sen. Blumenthal has set up a web page where all individuals with a story to tell about tick-borne illness can share it for the Committee. The official record of the hearing will remain open until Thursday, September 13th.
Click here to submit your testimony.
I have suffered for years before I was diagnoised. My doctors told my kids I needed to be locked away I was crazy. My kids believed them and wanted nothing to do with me because I refused to be medicated and walked out of the mental hospital. My husband is disabled and I am his caregiver. We have gone through over a hundred thousand $$ on lyme treatment it goes on and on. we will both be turning 70 now and we are alone. Everyone has turned their back on us because they think I made it all up for attention.
56 yrs old. I showed Lyme symptoms as a child and by age 35 I was bedridden and completely disabled. I then lived in a tent for the four years i fought for disability. In my 20’s and early 30’s, i earned as much as $100,000 /yr and had to declare bankruptcy due to (lack of) medical care. No longer able to work or even function, Diagnosed in my late 40’s, i still receive NO CARE or TREATMENT. What’s wrong with this picture?
I am 55 yr old woman; mother of 3. Lyme for 18 yrs. Finally dx in July! I knew I was physically ill…THOUSANDS & THOUSANDS of $ spent; countless drs. Husband became abusive “because” of my “spending”; said I am “crazy”. Although still married, he left 5 yrs ago. I have ins; but cannot afford treatment; unable to work. I have been a strong, independent woman my entire life. In all the yrs of being ill, I took care of my children and their needs completely…not sure how I did it other than strong mind/spirit. My husband & drs have been incredulous. Lyme, lack of knowledgeable drs, timely, and appropriate treatment has left me in the position of begging for help. Actually there are phases of pro-actively seeking treatment, begging, and giving up. There needs to be accountability for the degradation imposed upon lyme patients. Please help us. I am willing to speak on behalf of lyme pts.
I am from NH and when I was five I had a high fever mono, scarlet fever etc.. I was misdiagnosed and Lyme disease took over my body totally disabling me by age 40. I cant even begin to tell you how painful and the amount of suffering this disease causes. It makes you crawl on your hands and knees and wish you were dead. I have many symptoms and other related diagnosis ranging from Migraine to MS. Please help those who suffer from Lyme no one should have to live like this and not get any help it is inhumane.
My grandmother fought to stay on antibiotics in the 80’s.. She knew what was wrong with her, yet.. She was only given 30 days of antibiotics and died having suffered through unbelievable physical pain and eventually developed bipolar disorder. At present, atleast 4 of my immediate family members are suffering from Lyme disease. My father underwent brain surgery to remove lyme type tumor from his pituatary gland and has suffered through two detatched retinas. My aunt wad forced to retire at 40 because lyme caused severe memory loss and migrating joint pain. I have a brother who has been incarcerated for over half of his adult life who has recently been diagnosed with psychizophrenia which appears to be Lyme induced. This disease needs to be forefront on your agenda, its victums are innocent, the cost to individuals and society in general is astronomical. We are all at risk and we are in desparate need of your help in combating this disease quickly!
I am a 56 year old woman who is has Lymes. My life is been changing more and more each day that goes by. I use to be a very active women that worked two jobs. I loved my work but with my illness and the law allowing my postions to be filled due to the fact that I can not function well you can see what happen. Also I was being treated with IV Meds and that was taken away after two months because of the protocal, I have no money, can not afford the food that a lymes pt requires to eat, and days I can not get out of bed, And Congress says the is not a progrom Please we need Help big time.
I hope that the folks testifying above have also told Sen. Blumenthal their stories. You are all warriors to make it through this travesty visited upon us all. The latest news here, where I live, in San Francisco – someone got a tick bite in a dog bar in the Mission district – where dogs are allowed to come inside a business. Someone I talked to said if folks were really serious about this, an ordinance would have to be passed not allowing dogs inside business establishments anymore. No one knows this situation with the infected ticks is going on – I feel like the emergency sirens need to be put on. As for myself, I went 25 years undiagnosed, in a lot of pain, going to 3 area repetitive strain injury groups, because that was the only guess that made any sense to me regarding my ongoing neck and shoulders symptoms. A nurse 3000 miles away, in an online health chat site, finally told me. I had never heard of Lyme even though I had gone to a couple hundred health providers asking what could be going wrong. No one knew the symptoms of Lyme disease or co-infections. It’s time for these rampantly spreading, painful and expensive illnesses to be taken seriously by the medical field, and it’s time to tell the public so everyone can participate in making protective plans for us, pets and the environment. We need real planning, so that more of us and our pets don’t keep getting these devastating illnesses.
I want to thank you, Mary Beth, for sharing your story about lyme and the importance of vigilance and early detection. I too was concerned about a strange insect bite on my leg and went to a doctor who took a look at it and said “don’t worry about it”. That was when I lived on Long Island about 15 years ago. And I didn’t worry about it until numerous symtoms accossiated with lyme began to cause serious problems in my life. I later (about 2008) read an article of a man in my community was written up in a local paper as having serious problems of getting diagnosed and treated for lyme disease. That’s when I started reading everything I could about lyme. I discovered that the rash I had asked my doctor about was the telling EM (erythran mygrans) rash that indicates tick borne infection tranmissal. This is the most insidious part of the disease – doctors who are too cowardly to even recomend the possibility of lyme infection. I’m now on social security disability because of debilitating chronic fatigue, and a powerful pain killer to relieve the maddening systemic pain that I have without it. The worst part is that I can’t get properly tested through medicare or treated for what I sincerely believe is lyme disease. The costs of private labs and treatment clinics is only for the one percent. Thanks for your time and continue to investigate the incredible malfeasance of politicians, doctors and insurance companies who are charged with this resposibility and failing miserably.
I was tick bit in the Northeast, 6/95, at age 41. By 6/1/96 my formerly-excellent health had collapsed. I’ve since then been totally disabled.
By God’s grace in 1999 I was diagnosed by a Lyme-literate physician but my neuroborreiosis was well-advanced, and despite aggressive therapy I could only partially recover. I no longer battle severe and at times life threatening paresis. But I may be disabled for the rest of my earthly life.
Despite its potential severity, Lyme is shunned by most doctors, insurers and politicians. The sicker you are, the more you are shunned in this medical neighborhood where rabbit holes lead to Bermuda triangles in diagnostic twilight zones beyond Rod-Sterling-bizzare.
But the stranger-than-fiction scenario is all too real, despite what you may have heard from the Ministers of Truth at the IDSA, HHS, & FDA.
But hey, its fall and an election year! Lucy holds the football for Charlie Brown, recently back from the chiropractor’s, and racing forward!
I would like to belive that this time, Charlie will kick the ball. But I can’t.
Never had a bulls eye rash from a tick bite I never knew I got.
I was getting really sick over the next three years. No doctor or I could put it together for Lyme’s desease. TMJ, facial rashes, facial twitching, eye infections, ear and sinus infections, gum deasease, dizzyness, joint ache travelling all over the body, low grade fever, memory loss, speach problems like studdering. After 3 years and having spent my life savings on doctors I finally found one doctor that understood the desease, tested me properly and started to treat me accordingly. Not by the CDC guidlines may I add. If I would have been, I would not have been alive today.
All other doctors found nothing wrong with me and wanted to presicribe me anti depressants. I was depressed. When no one believes you are sick and you feel like you are dying. My life was shattered and I was ready to jump of a bridge when I found my current doctor. She is determined to get me back to health, no matter what CDC says. She saved my life. Three years later I am not cured but much better, back to work and can function in a daily routine. Lyme tests done by LabCorp and Quest Diagnostics does not test enough bands of Lyme to determine if you have the desease or not. Especially after a long period of time and also after having Mono. I was tested 5 times with negative results, yet a few bands showed high numbers of Lyme. Considering I had never been exposed to a tick I was stunned I had ANY signs of Borelia/Lyme in me.
This desease needs to be taken seriously. Family and friends die around us being misdiagnosed. I have already helped two people in this world find help for their years of untreatable symptoms and misery by sharing my story. I will continue to carry this quest to save lives and educate the public.
DEET everyone.
Ellie
I forgot to mention I live in Northern Virginia.
This area is infested with ticks no matter where I go.
I have never seen so many ticks anywhere.
Public parks, school yards, sides of the road and in the woods.
I have children that play sports and do activities that require them to lay down in the grass occationally. Not once have they been able to stand up and not had a tick crawl on them.
The health problems that will stem from the tick bites and lack of education of the general public will take over the medical system eventually. Please let the schools help educate the children so they can tell their parents of the dangers.
I am 58 years old, and am CDC positive for Lyme Disease. I think I have had it all my life, yet I did not receive a diagnosis until I was 56. I almost died in the mid-90’s when my respiratory system completely shut down and I wound up in a medically induced coma, paralyzed, and on complete life support due to mycoplasma pneumonia, which is a co-infection of Lyme. Had I died the death certificate would have said pneumonia, not Lyme. But Lyme was/is the root cause. My husband also has Lyme, and I suspect my 30 year old son inherited it from me when I was pregnant. We are both disabled now with no hope of receiving adequate treatment due to the CDC guidelines and the lack of mainstream medical professional training. I don’t have just a long list of symptoms, I have a long list of diagnosis, all of which can be directly linked to Lyme. How many people have to suffer before action is taken to lift the threat to doctors who treat us and the guidelines redefined?