#ilads

938 posts

TOP POSTS

Bravery is not a trait we are born with but a strength we develop through hard times.
Lyme Disease Awareness ---> Spread the Word

#ILADS #lymedisease

Thank you @aubreys.lyme.journey for my new #lymedisease bumper sticker! I can't wait to slap this baby next to my @lymewarriorus decal! 💚 #ilads

Pierwszy raz odbierałem leki z apteki w kartonie :) #lyme
#lymedisease
#borelioza
#swagtv
#ilads

MAY IS LYME DISEASE AWARENESS month. PREVENTION is the 🔑 !!!
Deer ticks are the size of a poppyseed. Empower yourself with prevention information at LymeDiseaseAssociation.org...ILADS.0rg...MA Dept. of Health #lymediseaseawareness #LDA #ILADS #TickChecks#keepfamilyandpetssafe

Since Chronic Lyme Disease doesn't exist, some doctors will use creative diagnostic codes in order to try to get insurance companies to cover treatments for their patients. #StopTheMadness #LymeIsReal

Driving back home from #ILADS 2016 conference in Philadelphia. Great conference, great location.

NatCapLyme's Legal Counsel Gregg Skall, NatCapLyme's Legislative Counsel Susan Green and #Lyme advocate extraordinaire Karen Vanderhoof-Forschner at the 17th Annual #ILADS Conference.

I simply love them...😍😁
#camdengirls
#prettygirls
#ilads
#ican't

So...In honor of Lyme Disease Awareness Month, I seem to have relapsed into a full blown nasty Lyme situation. I've been off the grid, allowing myself the time to listen to my body and chill. It's been a month of prioritizing my obligations and focusing on doing everything possible to strengthen my immune system. This is the 5th time I've undergone treatment for Lyme over the last 8 years. It's completely changed my life. I'm so thankful for the support I have from my friends and family and for my amazing Lyme Doc, Dr. Daniel Cameron. All I can think about are the thousands of people suffering without support and without the financial means to obtain proper treatment. At least where I live it's impossible to find a Lyme Literate MD that takes insurance. We must find a way to change the diagnostic paradigm, educate more of the medical community, fund studies and get the NIH and CDC on board. It is so way beyond heartbreaking. It's literally criminal what's happening. People loose their life savings paying for treatment.

MOST RECENT

Since Chronic Lyme Disease doesn't exist, some doctors will use creative diagnostic codes in order to try to get insurance companies to cover treatments for their patients. #StopTheMadness #LymeIsReal

So...In honor of Lyme Disease Awareness Month, I seem to have relapsed into a full blown nasty Lyme situation. I've been off the grid, allowing myself the time to listen to my body and chill. It's been a month of prioritizing my obligations and focusing on doing everything possible to strengthen my immune system. This is the 5th time I've undergone treatment for Lyme over the last 8 years. It's completely changed my life. I'm so thankful for the support I have from my friends and family and for my amazing Lyme Doc, Dr. Daniel Cameron. All I can think about are the thousands of people suffering without support and without the financial means to obtain proper treatment. At least where I live it's impossible to find a Lyme Literate MD that takes insurance. We must find a way to change the diagnostic paradigm, educate more of the medical community, fund studies and get the NIH and CDC on board. It is so way beyond heartbreaking. It's literally criminal what's happening. People loose their life savings paying for treatment.

Day 26 Lyme Disease Awareness Month
What is this talk of an LLMD? How do I get one?? I've been asked a number of times privately or in person over the last month how to get tested and who to go to? Yes you can go to your primary care doctor or sure you can go to an infectious disease doctor... but if you really think you might have Lyme disease and or you got bit by a tick and you're past a small window of needing just a 2 month supply of antibiotics.. then you need to see a Lyme literate doctor!! but how do you find one who knows what they are doing and will get you tested correctly and evaluated right… if you don't know someone seeing a doctor near you that you trust is to reach out to the International Lyme and Associated Diseases Society (ILADS) to get a Lyme-literate Doctor referral, and is probably the best place to start. Go to their website www.ilads.org , email them at contact@ilads.org or call them at 301-263-1080 (they are on EST). #lymediseaseawareness #fightlyme #lymedontkillmyvibe #lymedisease #msids #co-infections #staystrong #findacureforlymedisease #takeabiteoutoflyme #mysterytumors #itsnotjustticks #tickssuck #thisisntformeitsforyou
#ILADS #LLMD

Thank you @aubreys.lyme.journey for my new #lymedisease bumper sticker! I can't wait to slap this baby next to my @lymewarriorus decal! 💚 #ilads

#señales en la 7 Conferencia Europea de ILADS. 19-20 mayo 2017. Un #sacacorchos junto a una #lima sobre el programa del curso donde dice #borrelia . Ahí queda eso. Muy al hilo de la #campaña de #concienciación sobre esta limitante enfermedad y principalmente por sus #pacientes
#muerdeunalimaporellyme #takeabiteoutofalyme #lymedisease #incapacitating #borreliosis #ilads #campaign #publicawareness ness #patients #lyme #spirochete #spirochetes #espiroquetas #espiroqueta #corkscrew #signs

#LymePowerOfUs IT TAKES ALL OF US TO CHANGE THE FACE OF LYME DISEASE! Here are some Lyme stats from ILADS:

FASTEST GROWING:
ACCORDING TO THE CDC, LYME DISEASE IS THE FASTEST GROWING VECTOR-BORNE, INFECTIOUS DISEASE IN THE UNITED STATES.

25x:
THE NUMBER OF CASES REPORTED ANNUALLY HAS INCREASED NEARLY 25-FOLD SINCE NATIONAL SURVEILLANCE BEGAN IN 1982.

300:
THERE ARE 5 SUBSPECIES OF BORRELIA BURGDORFERI, OVER 100 STRAINS IN THE US, AND 300 STRAINS WORLDWIDE
This diversity is thought to contribute to its ability to evade the immune system and antibiotic therapy, leading to chronic infection

300,000:
CDC reports: Lyme disease infects 300,000 people a year. 10 times more Americans than previously reported.
This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States,” says Dr. Paul Mead, chief of epidemiology and surveillance for CDC’s Lyme disease program.

CDC ESTIMATE CASES PER MONTH:
25,000

CDC ESTIMATE CASES PER WEEK:
5,770

CDC ESTIMATE CASES PER DAY:
822

CDC ESTIMATE CASES PER HOUR:
34

NO ACCURATE TESTS:
THERE ARE NO TESTS AVAILABLE TO PROVE THAT THE ORGANISM IS ERADICATED OR THAT THE PATIENT IS CURED.

50%:
FEWER THAN 50% OF PATIENTS WITH LYME DISEASE RECALL A TICK BITE.

FEWER THAN 50% OF PATIENTS WITH LYME DISEASE RECALL ANY RASH.

UP TO FIFTY PERCENT OF TICKS IN LYME-ENDEMIC AREAS ARE INFECTED.
The onset of Lyme disease symptoms can be easily mistaken for other illnesses. Once symptoms are more evident the disease may have already entered the central nervous system, and could be hard to cure.

35%:
THE ELISA SCREENING TEST IS UNRELIABLE.
The common Elisa test you receive at your doctor's office misses 35% of culture proven Lyme disease. Some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results.

40%:
40% OF LYME PATIENTS END UP WITH LONG TERM HEALTH PROBLEMS.
The average patient sees 5 doctors over nearly 2 years before being diagnosed.

SHORT TREATMENT COURSES HAVE RESULTED IN UPWARDS OF A 40% RELAPSE RATE, ESPECIALLY IF TREATMENT IS DELAYED.

Katherine Brookhouse, LDUK member attended the ILADS conference for us in Paris. We're sure you'll recognise some of these Doctors & Researchers who were speaking at the conference! Thanks Katherine for letting us use this fab photo 💚
#lymedoctors
#sharedknowledgeispower
#lymeresearch
#ilads
#lymedisease
#lymediseaseuk

#lymedisease fact: Many people suffer permanent damage from tick borne illnesses leaving them persistent sometimes very debilitating symptoms. Getting treated right away with the right antibiotics for the right length of time (2 months) is vital to prevent chronic (late stage) Lyme disease /co-infections! Get informed and get protected!
#lyme #pennsylvaniaepidemic #pa #mayislymeawarenessmonth #lymeawarenessmonth #lymedisease #lymediseasechallenge #takeabiteoutoflyme #takeabiteoutoflymedisease #ilads

There was an article in the New York Times in Jan. entitled 'What To Do About A Physician Who May Be A Quack.' A Lyme-literate scientist wrote: "There is a family-practice physician in our community who is diagnosing Lyme disease in many of my friends and acquaintances (and their families). The doctor attended an Ivy League college and a well-respected medical school, but she has no specialized training in Lyme disease. What is perplexing to me is that most every patient she sees comes back with a diagnosis of a Lyme-related “condition.” Most of her treatments are not covered by insurance, because they have no basis in evidence, and cost her patients $30,000 a year or more. Moreover, the test she uses for “diagnosis” has never been validated and is not used in New Jersey or New York; all her samples have to be shipped to a lab out of state.

Adding to my concerns is that some of these patients saw a Lyme-disease expert first and were told that they did not have the disease...I believe that this physician is taking advantage of the varied and sometimes vague symptoms of Lyme disease to make a lot of money off patients." As part of Lyme Disease Awareness month, I think we also have to be aware that since there is no federal acknowledgement of Chronic Lyme, no consensus of standard of care, very few truly Lyme-literate physicians, and thousands of gravely ill people, the situation does open the door for doctors with no scruples to take advantage of people willing to do and pay ANYTHING to get better. How do patients who experience the desperation of chronic illness guard against being taken advantage of? When you so badly want to know what ails you and how to get better, how can you be sure you are in good hands, especially when you aren't functioning at 100% and your powers of discernment may be compromised? Many of our brilliant LLMDs are unfairly labeled as "quacks." How can we distinguish between the good, the bad, and the ugly? #BuyerBeware

I'm so frustrated. I'm supposed to do my part to bring awareness but right now, I'm scared since it's effecting my vision and fatigue is worse than ever. I'm maybe regretting going off antibiotics, but I had started getting weird infections and it was confusing having two doctors with two different opinions. At least now I've had time to heal my gut a bit. I started vitamin infusions which I should've been doing a long time go but treatment is costly and starts to add up. The symptoms that've returned now with my vision being effected, seem MS-like. My arthritis has alleviated, greatly, tho. Yay! You never know with Lyme. The bacteria invades the body wherever it pleases. I'm starting with a new doctor from scratch next week. Something has to change. The specialist I was initially set to see has temporarily stopped taking new patients, and money is now an issue. Our local news recently featured a 19 year old who was suffering chronically, but is believed to be cured by a treatment in Germany that cost $60K. Im so happy for her because she has a whole life ahead of her now.!! If I had that money I'd do it in a flash. I recently found out the house I lived in up until last summer also has a serious mold issue that was covered up before I moved in. God was looking out for me because I almost bought that house and it fell through last minute. I would've never known if the new owner didn't strip the paint from the walls. He is already reselling the place because he doesn't want to pay the money to rid all the mold. I'm learning it takes a long time to expel mold from the body. A few Lyme sufferers have talked to me about how mold worsens symptoms. I was told not to wait for tests and just order cholestryamine or whatever it's called, online.. It is apparently a safe drug used off label to help detox biotoxins. I dont know. I'll wait.. but any other Lymie's on it and has it helped? Thanks. #lyme #lymedisease #mold #biotoxins #lymewarrior #lymeawareness #lymediseaseawarenessmonth #chroniclyme #tickbornediseases #lymedontkillmyvibe #CFS #neurological #health #ILADS

In his Time Magazine article, author Bryan Walsh writes: Since the president took office, key government positions remain unfilled, including a new director for the CDC. The budget the president proposed on in March would have slashed critical funding at the Department of Health and Human Services by $15.1 billion, including deep cuts to the National Institutes of Health, which underwrites more infectious-disease research than any other agency in the world. The budget for the State Department and foreign aid - which power virtual efforts to stop diseases overseas, where they usually originate - was set to be cut by 28%. Although a bipartisan congressional spending deal reached on April 30 blocked many of those cuts, the signals the president has sent are worrying. "It's early days, but if we compare to what we've seen in the past, it raises some alarm bells," says Jeremy Youde, a global health expert at ANU College of Asia and the Pacific.
#GetReady

In lieu of favors we made a donation to the International Lyme & Associated Diseases Educational Foundation. Their vision is for a world where no one is denied appropriate diagnosis & treatment of Lyme disease, where families aren't ruined financially, and where no one lives a life of suffering from chronic Lyme disease.

Het is tijd voor een goede richtlijn voor mensen met hardnekkige Lyme! Er zijn nog 20000 handtekeningen nodig om deze ILADS richtlijn onder de aandacht te brengen van de politiek. Link in mijn profiel. Teken jij de petitie via https://iladsvoorlyme.petities.nl #lyme #lymeinfectie #teek #teken #petitie #ilads #lymeawareness #borrelia #handtekening #actie #tweedekamer #politiek

Day 22: 4 Lyme myths
EACH NUMBER IS A MYTH
1. You should wait until you have symptoms to be tested and treated for Lyme after a tick bite
Reality: you should be tested for Lyme and coinfections, test the tick if you had it and kept it (smart idea) and be on minimum 4-6 weeks abx for any tick bite.
2. Powassan virus is new.
Reality: powassan has been around and known by Lyme drs for many years, but the news and media are just sharing about it recently. There's nothing new about it.
3. Ticks need to be attached for 24-48 hours to transmit disease
Reality: A study by the discoverer of Lyme disease bacteria borrelia burgdorferi found 5-10% of ticks have bacteria in their saliva by the time they bite. That may seem like a small percent, but it's out of a HUGE tick population. Therefore, there is no safety window for having a tick on you.
4. Peppermint oil, petroleum jelly, and lighting a match on a tick are good ways to take out ticks out of people or your pets
Reality: this increases the possibility of tick borne diseases to be transferred into the bloodstream. You may have seen the viral peppermint oil video, or the video of someone twisting a tick off of them. all the above methods are extremely careless because when ticks are disturbed their natural reactions to protect themselves is to regurgitate (throw up) before leaving the host. Doing any of the above methods can give you multiple tick borne diseases. To properly remove a tick, get a pair of pointed tweezers and grab as close to the head as you can, and pull straight up. Do not twist the tick or leave any pieces of the tick inside of you. If that happens you need to visit the dr to get them removed. #lymemyths #lymefacts #borreliaburgdorferi #coinfections #powassan #treatimmediately #facts #takeabiteoutoflyme #lymeconnection #neurolyme
There are many more things about Lyme and tick borne diseases that are not well known, like how doctors aren't taught about them in medical school correctly unless they're certified by #ilads ... you don't need a bullseye rash, more than just ticks carry Lyme, it is a worldwide epidemic, and a controversial disease. The typical testing is highly inaccurate.

Thanks goodness for #ilads doctors and open minded researchers who are helping to push for change so that #chronic #lymedisease patients can be believed and treated. This disease is everywhere. Misdiagnosed over and over #wakeuptolyme #invisibleillness #ms #als #parkinsons #alzheimers #depression #anxiety #cfs #me #FIbromyalgia

Here's my #lime heading down the #seine after my weekend at the #ilads conference. Im lucky I'm well enough to do this. Many with #lymedisease cannot lave their bed let alone get out of the house and travel overseas. #lymedisease wrecks lives. And the thing that really makes me angry is we make look ok but that's because we're fighters. #chronic #pain #fatigue #invisibleillness #carer #wakeuptolyme #takeabiteoutoflyme

I took the #lymediseasechallenge today with my best friend that has Lyme! If you haven't heard, May is Lyme disease awareness month and there is a challenge similar to the ALS ice bucket challenge to spread awareness! Take the @lymediseasechallenge by taking a bite out of a lime, posting the facts, tagging 3 friends and donating to ILADEF. I challenge all the warriors that have sent their stories to me and encourage more to participate, message me to share your experience with Lyme! LifeinLymeLight@gmail.com 💚🦋 Please help out, take a bite out of Lyme and share these facts: * Children are at the highest risk of contracting Lyme Disease and are more vulnerable to central nervous system infections.
* Transmission of Lyme Disease and other infections can take place in a matter of minutes, particularly if the tick is not removed properly.
* Lyme Disease has been called “The Great Imitator” and can be mistaken for ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s, autism, and other illnesses.
* Research suggests that Lyme Disease and other infections can be spread from mother to baby during pregnancy.
* Studies show that standard laboratory tests recommended by the CDC to diagnose Lyme Disease miss approximately half of actual cases, leading to misdiagnosis and an infection that is more difficult to treat.
* Over 63% of patients treated for Lyme Disease continue to suffer symptoms that can be debilitating.
* The CDC estimates that there are 329,000 new cases of Lyme Disease each year in the United States. Some experts believe the actual number of new cases could be as high as 1-2 million new cases per year in the US alone.
* Lyme Disease has been reported in every state except Hawaii and has been found on every continent except Antarctica.
* Lyme Disease has 6 times more new cases each year than HIV/AIDS, yet it receives less than 1% of the funding.
* Fewer than 50% of patients with Lyme Disease recall a tick bite or any rash.
* More facts continued... •





#hopemore #wewillfindacure #nevergiveup #bealight #getlymesmart #compassion #savealife #bebrave #beahopespreader #lymecommunity #ILADEF #ILADS

Most Popular Instagram Hashtags