Long Haul Lyme Disease Risk Found: Even in Early Treated Patients | Johns Hopkins Rheumatology
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- Опубліковано 24 лют 2022
- John Aucott, MD, Director of the Johns Hopkins Medicine Lyme Disease Research Center,
discusses his team’s peer-reviewed study that finds a significant risk of functionally impairing
persistent symptoms after early diagnosis and treatment of acute Lyme disease.
Risk of post-treatment Lyme disease in patients with ideally-treated early Lyme disease:
A prospective cohort study.
Published in the International Journal of Infectious Diseases, January 2022
www.ijidonline.com/article/S1... - Наука та технологія
They’re just letting us suffer. We deserve justice for our loss of quality of life. We deserve treatment that works and support from insurance companies.
be care ful who you listen to they all think they are going to get money for this YES we deserve justice!
I literally said justice today about this. TRUTH!!!!
Get rid of insurance companies and government healthcare, let the free market make affordable and incentive driven cures
Absolutely
Ketosis works. Why? Because of the mitochondrial dysfunction caused by lyme disease. Your mitochondria can no longer properly use glucose as fuel, but ketones still work.
Why won't the CDC update they're guidelines for treatment so Lyme patients treatment is covered by insurance? Hope Johns Hopkins can help influence this.
Insurance doesn't pay the doctor enough. Similar to psychiatrists to rarely take insurance. A complete exam for Lyme disease takes 1.5 hours so that's why most Lyme doctors don't accept insurance. You get what you pay for. Even the testing, through IGENEX and DNA connections aren't covered by insurance. The lab tests that regular doctors offer are crap. I saw a doctor in Austin Texas who is a member of ILADS, the governing body for tick borne illnesses. I recovered with 1 year of antibiotics. This situation with the cdc has been going on a long time (25+ years). John's hopkins won't have any influence over the CDC. They never have and never will.
You can get a PCR test for COVID for free but for Lyme disease, not even your health insurance will cover it. You MUST pay out of pocket and it's not cheap.
Otherwise, you can get the super crappy ELISA, which misses SO many positive cases of Lyme and from there you can get the Western Blot, which is all rife with issues.
Lyme patients deserve better.
this illness are from weqponized ticks .
@@UTClassof I had Lyme for over 50 years before I knew I had it. I had over 5-7 years of IV ABX with all the supporting treatment. It saved my life and let me have a huge amount of my life back. I was VERY fortunate. It's been over 15 years since my last treatment and the Lyme is coming back. I get IVIG and it helps, but nothing like the daily IV ABX.
I have always been fit, healthy and athletic. I had a good life. 4 years ago, I woke up in devastating pain throughout my body and had a whole host of tests done. Turns out it was lyme disease. I am 49 now and living the most miserable life I've never imagined. I did antibiotic treatment for over a year.
I can't move well most days, and I feel it's just a matter of time before it takes my life. I have a list of symptoms. I changed my diet to organic and I supplement as well, but I get minimal relief.
God bless everyone suffering. 🙏
🙏
Google japanese knotweed and lyme
Try glutathione it’s life changing, it has to be IV or suppositories or coffee enemas. Artemisinin and making sure your detox pathways are open (lymphatic system) and pooping daily will be life changers. Magnesium is a must too. Good luck 💚
you're not alone in that. pisses me off too that no one believes you when you say you've done all this. They automatically fault you for not healing yourself. Like, clearly you did it wrong. People suck.
Lyme ruined more than a decade of my life, and while I mostly recovered I'm so thankful you're doing this work for others and are recognizing it's REAL. THANK YOU!!!
How did you recover?
I would love to know as well. Thank you!
@@rangerdoc1029 the only method is a protocol of antibiotics
My Lyme went into remission after 4 years of battling it. I did 3CCs of umbilical stem cells and numerous sessions of ozone therapy. Insurance paid ZERO, of course. This was after being on a pic line administering antibiotics for six weeks and then taking innumerable antibiotics for several years. After being UBER careful during Covid, I caught it in June. By July, Lyme was back. Have done 2 CCs of stem cells and 1 ozone treatment…9 more to come. Little to no progress so far. We’ve spent $11,000 since this second bout.
How did you recover ? Please tell
I found the bullseye rash where I'd been bitten a few weeks earlier in the Summer of 2021. My medical practice told me it's a no-brainer and gave me a month of antibiotics and then left it there because they were convinced it was cured.
A year later, things didn't feel right. Soon after I started getting badly ill far more often than I should. I was experiencing terrible depression and anxiety. I was in pain. I was fainting. My heart was going haywire. I constantly felt hungover. I had no energy. I could barely sleep. I lost 24lbs of muscle. Any kind of food was painful to my stomach. I couldn't think straight.
I went to my doctor in early 2023 and told them to test for Lyme antibodies. They said it wasn't Lyme but they'd humour me.
Guess who was right?
I've been going through the same stuff for about twenty years. Where did you go to get help. I'm having an episode right now.
Take Disulfiram ...
@@johnvanrossum8024 I said I constantly feel hungover, I'm not actually hungover from drinking.
@@terryhunter2526 they're not really helping or taking me seriously. I'm getting a bunch of supplements from the Internet and trying them out.
Antabuse kills Borrelia ..@@matthew4712
I've been bitten by a tick 3 weeks ago. It took one week to get serious symptoms. I went to doctors and they told me it was 'impossible' to appear this early, that it takes several weeks or months. Thankfully, the second doctor accepted to give me antibiotics because I had erythema migrans. I took antibiotics for 2 weeks, got a blood test for Lyme disease only, the result was negative.
Now after one week without antibiotics, everything is coming back and worse. Doctors aren't available. I have to wait more, as if the wait wasn't long enough.
We can find all the information on internet but the doctors and hospitals aren't even aware of what to do and don't even look at this info that's already been gathered for them.
This is driving me mad, I can't imagine how hard it is for the people who have been suffering for months, years or decades. Be strong and spread the awareness!
Find a doctor that will give you doxy. Do not wait.
You need THC. Lots of it. Multiple times daily. I’m on year 7, have the body of a fitness model, and do construction work every day. I still have episodes of feeling like I’m dying, but my life is mostly normal now. Before THC, I missed at least 3 months of work per year.
I don't' think you got treated soon enough Nor for long enough. and even if you had,20-30 percent of us still end up with debilitating life alterations if not the complete inability to even work or function. I'm so sorry for what you're going through. I hope it gets easier for you.
How can u work with thc and with lyme?
I’ve been through it all. So, I’m almost 59, diagnosed in my 30’s, always tested for Lyme’s always, until a doc, he has it, he is my 1st hero. The 2nd doctor, I trust, helped me also. Others, they’ll never understand it. RA, diagnosed at 19-20yrs. Old. MS, 30’s I think, fibromyalgia, right when it came out. Why was this always so ignored? Plus, I absolutely understand, ones will never understand. I have 2 actually, it’s all good. I’m still here.
How are you now
I find the more active I am, the more inflammation occurs.
Same here. It's like I can't over do it
Chronic Lyme exists. I got hit in July of 2022 and have been going downhill fast since then. 3 weeks of feeling fine, a week of being crippled, until finally January 20th 2023. From that point until today (03/02/2023) I have been in a persisting flare, this time bringing on severe chest pains, kidney pain, severe back pain, loss of sensation, Reynaud's, and unbelievable amounts of fatigue landing me in the hospital a month ago. I can barely stand and walk at times, and because of it all, I am now out of work seeking medical help, treatment and recovery.
Honestly, I think the initial infection triggered an autoimmune response. The symptoms ongoing are incredibly similar to that of Lupus (SLE) and multiple myeloma.
This disease has absolutely destroyed me and my life.
ME too. Please look into glutathione therapy (Gerson institute/coffee enemas, IV’s, glutathione suppositories), medical medium protocols, keeping your detox pathways open and making sure you poop every day. Artemisinin or sweet wormwood is great too. Best wishes 💚
I am the same as you. Our stories sound similar. I am so depressed and over it. Have you found treatment and if so where and with who?.
ive had lymes for 18 years and still being miss diagnoised ! stop telling people to get treated early because they wont treat you!
It's true. It's super difficult to get proper treatment early on. After a visit to the Brooklyn Botanic Garden, I found a tick feeding on my head. I immediately went to two separate doctors. Both falsely told me that Lyme disease is rare and difficult to contract and one tested me right away but it was too early to test, since I'd just found the tick and hadn't had a chance to develop antibodies. That test came back negative. I had all kinds of strange symptoms but believed I was negative for Lyme disease.
It took more than year for my symptoms to get so bad that I became bedridden. I was then told that I had fibromyalgia and chronic fatigue syndrome. It was another six months before I was finally diagnosed with Lyme disease and a slew of co-infections, including anaplasmosis and babesiosis. I was three years before I was able to return to work. Because I didn't know that they pathogens could take a person down the way they did me, I never pursued disability. I just watched my savings dwindle as I paid out of pocket for treatment after treatment.
A single tick bite can utterly destroy your life.
I am so sad. One tick bite almost took my life, severe acute babesiosis, now I am dealing with lyme. I can not even think straight, can't spell, can barely type this, and I have to work !
Try sweet wormwood for the babesiosis, it’s a Chinese herb and very affordable it really helped me. Also glutathione was a life saver. First I did IV’s and now I do coffee enemas and glutathione suppositories, I cant do without it as it helps detox the body. Best of luck to you 💚
Don't help when the CDC refuses to admit it
Exactly. Especially with disability insurance you are entitled to with your employer. Its all about money. They dont care. Thank God for some doctors who actually care we just dont have enough of them
I've had Lyme disease for 37 years. It took 27 years to finally get diagnosed. Lyme attacked my jaw joint and mandible. I've had 3 major jaw surgeries one was a total jaw joint replacement and mandible. I still suffer from horrible pain and fatigue. The doctors ignore my symptoms and do nothing to help my pain and other symptoms.
@deborahkish5411 This sounds awful. I'm really sorry. I believe my girlfriend always has long term lyme disease. How did you finally get diagnosed?
Persistent infection is a cash cow for hospital systems - they never want that to be found out as a cause.
There are patients that still have live Lyme disease bacteria in them. There are animal studies that show persistent Bacteria dispute weeks of antibiotics.
Dr Aucott, Thank you for your excellent work and for your bravery in taking on a subject matter that many in the medical community thought was all in the patient's head.
Thank You Dr. Aucott...please continue your research and good luck to all members of your team...There are many of us out there counting on you and your success.
Ok, So What is being done about that ? People are suffering horribly 😢
Thank you. I'm 4 years in and had a traumatic life event around the time of infection.
Same here. 4 years ago while dealing with so much stress
@@nancylicho3538 I hope you are on the path to healing now.
@@Trendsetic Still trying different specialists. I won't give up
🙏
Dr. Aucott, I'm curious if this study will look for prevalence of other tick infections? In published literature, there are reports that treatment failures are higher among patients with additional tick infections.
Just recently I found a news paper article in which 5 people were talking about their health battle with lyme and while some didn't test positive for lyme, ALL OF THEM tested positive for Batonellosis. At this point I am almost loosing all faith into the medical community. I mean there are even studies saying that co-infections need to be ruled out as well and that those on their own can be just as disasterous as lyme disease. In fact, many people with self reported lyme disease might never have had lyme disease but one or more of those co-infections. Yet, studies are more than lacking when it comes to adressing the possibility of a persistent co-infection causing the symptoms.
And with long covid, there are almost no studies in terms of EBV, Bartonella, Toxoplasma and co. Even though the studies on acute covid do show that beeing seropositive for Toxoplasma gondii for instance does pose a high risk factor for getting a severe course of the disease.
When patients get Ivermectin which also is highly effective against toxoplasma, more so than the standard treatment, then doctors will respond with a surprised pikachu face...
And some doctors use Ivermectin for Bartonella as well. And I have not read into EBV and Ivermectin. So assuming that Ivermectin would not be efficient against Covid itself, it might still kill off co-infections or improve dysbiosis by killing off bacteria Covid had propagated (like all Eiknella or Veillonella which, like all dental pathosymbionts, have not gained enough attention by mainstream medicine...) Yet, doctors won't treat Long haulers basically saying they first want to understand every little detail about the etiology... This is insane as by doing nothing, they also do not take the chance to learn about the disease's etiology as they could use tretment outcome data to make conlcusions about the etiology.
I had a tick bite in 2003. It was on me for over 36 hours. Had a swollen goofball sized bite that I found when I got home and showered.
I live in eastern Washington, and picked the thick up on coast of oregon.
Doctor would not prescribe antibiotics and my doctor now denies it could be why I'm sick but I've been sick for nearly 20 years.
Neurological symptoms;
Tinnitus,
cloudy vision,
aches in joints, primary right side of body,
Dead nerves in leg,
chronic fatigue,
trouble concentrating,
Violent persistent Migraines with vomiting.
Now I'm getting painful nodules forming in belly fat. Thyroid problems
My doctor recently tested for antibodies and came up negative. Tells me to see a psychologist.
Unbelievable I dont know what to do. This has affected every part of my life. I'm married with 7 children and struggling to live and provide.
Jim.. The test for antibodies was negative either bc of false negative or bc the body stops producing antibodies when the infection is severe and ongoing.
You need a new doctor and a PCR test! I nearly died of Lyme bc of doctors like yours.
@@microtyger thanks for the reply and advice. I'll look into the pcr test.
@@microtyger I'd love to hear more about your story. What kind of symptoms were you struggling with? How did you find a decent doctor?
Hey Jim, what helped turn mine around is the following: glutathione either IV, suppositories or coffee enemas (Gerson therapy) artemisinin/sweet wormwood, medical medium protocols, and keeping my detox pathways open. Making sure you’re pooping every single day is very necessary as well. I have made at least a 60-70% recovery with those things listed above. Wishing you the very best 💚
Thank You So Much for the Video!
Still no long term treatments, now that it’s proven it exists create a protocol.
I was bitten by ticks when I was a child, over 60 years ago. I was not diagnosed nor treated for Lyme. It was not until 2005 that I was told I have Lyme infection.
I wasn't treated for decades because doctors were too ignorant, meaning not stupid but uninformed, to figure out what I had-all they could come up with was Epstein-Barr. Finally a lyme literate doctor in this state diagnosed me along with igenex testing, and I have multiple Co infections, both IGG and IGM. After being treated with three simultaneous antibiotics for 6 months I overcame four of my previous positive four bands. I then ignored the next six embedded tick bites (re-exposure - as my backyard looks like a zoo that I have contact with on a daily basis) and as you can well imagine I had severe joint pains, two even requiring an MRI and x-rays. Also brain issues and my neurologist assured me after testing that it was not Alzheimer's or lewy body. I did not receive treatment at all for prior 6 embedded ticks, most still in jars and rubbing alcohol-therefore that cannot be considered post treatment Lyme disease syndrome. My last two embedded ticks I asked my lyme physician for treatment and I'm now taking 400 mg of doxy a day, length of treatment to be determined, and already after 1 month my brain is much clearer. Thank you doctor for bringing this information to the misinformed and/or ignorant physicians that are practicing that have no clue about the current updated facts regarding Lyme disease-with your credibility perhaps they will begin to investigate more on their own, as something needs to be done for the multitude of people suffering from this epidemic - now with covid perhaps it'll get more attention!
Thank you for the work you do. I'm so disappointed by everthing thats out there, false information on what is clearly an epidemic issue that I think is far worse than anything covid has currently created. The death toll for Lyme is staggering but it's all listed as different misdiagnoses. I just appreciate this video so much and even though I don't believe there is any hope for my generation, it might help the next and that's something amazing.
Finally! Validation!
Thank you for this study!!!
Great work. Are you all focusing on those of us who were not diagnosed for years or decades? We don’t have a disease, we have an infection that overwhelmed our system and tucked itself away to constantly cause us symptoms. My experience is that this takes months or years of antibiotics, herbs, and bio film busters to get it under control.
so if doctors know what it is and what it does, why do they never want to do a Lyme test, or treat you for Lyme even after they diagnose you wit it?
Money! Simple as that 😢
Thank you
How can pls have more videos about lupus? Highly appreciated.
Dr. Aucott, I am wondering if cellulitis gets confused with Lyme disease. My husband has all the symptoms of Lyme- the rash, headache, extreme sweats and fatigue, and our local physician practice is still looking for a bulls-eye (which I am now convinced is an urban legend because of the infrequency). How do you combat this backward thinking? They are treating him for cellulitis.
Wait! Experts acknowledging long haul Lyme?! This is big news right? Good for lymies?
What’s up with the constant music. People come here to hear facts and latest info from John Hopkins. NOT to listen to music that’s incredibly distracting, and if you are wearing headphones, the sudden increase in volume makes the person have to instantly rip them off, otherwise hearing damage could occur
This is great news for us suffering we know it is real. Now how do we find the doctors that want to help us and not tell us what we have is not real? We all cant afford private clinics and going to other countries for treatment. Our healthcare in the U.S is horrible and many doctors should not be practicing.
Thank you for posting this. Unfortunately, I believe this has happened to me as well. At least now I have something to show proof to my doctor who told me that is I keep on antibiotics that eventually it will go away. I have been suffering from the symptoms for years. About a month ago, I believe I was bitten for the third time in my life and was extremely ill for about ten days.
I'm suspecting that Lyme disease may lead to some kind of autoimmune disease we haven't discovered yet. This would explain why the symptoms persists after the initial infection is gone.
Or the treatment doesn't work
How can you be sure that the bacterial infection is gone? There isn't a reliable way to test for the bacteria yet. Like other bacterial infections, a course of antibiotics isn't a sure-fire way to kill it off.
There could be co-infections. Ticks carry all kinds of pathogens. Antibiotics alone may only kill bacteria that are not hiding in biofilms. Lyme bacteria hide. Parasites can’t be eliminated with antibiotics and will need another treatment.
What about co infections? Did they test for them?
After suffering for 10 years, DSF helped me put my Chronic Lyme into remission.
Disulfiram??
@@The_Joy_Of_Jesus Yes! Google it.
Sam, did you use DSF alone or in combo with other meds or herbs?
What does this mean for clinical treatment? Can a patient move more easily through "mainstream" medicine and receive treatment that meaningfully improves quality of life?
I have no idea how long I have had lymes before I was diagnosed.. I never got the rash. I also have a few autoimmune. Even with all the symptoms. I thought it was just my autoimmune diseases.
You can have PTLDS and chronic Lyme at the same time. What is failed to also be mentioned is the fact that confections can do a lot of damage too.; they are hard to treat. Hoping more and more research continues to be done. I think it’s sad that over the years, more money and research has gone to HIV patients than to those suffering with Lyme. Whether the CDC, NIH, and doctors want to admit it, it a VERY political disease.
PTLD is the same thing as chronic Lyme.
Lyme was weaponized by military in gulf war that’s why it’s politicalized they spread it through our country too
Please think twice before you trivialize HIV. Yeah, now you take a pill and your viral load can go undetectable and your T-cells rise. You don't know how many people had to fight for how long to just... not die. Go read a book. Go watch a documentary. Don't piss ignorance all over the Web.
This study began at the same time the vaccines were rolled out?
Q-Fever, AKA Coxiella brunetti. Same story.
The heathcare system needs updating. These doctors are acting as if the antibiotics fixed everything. They dismiss any long-term affects even when you tell them.
My lyme is congential. My mother and sister had Lymes too. I'm trying to get my paperwork together so I can see someone at John Hopkins.
Another video with absolutely no answers. Wonder why we don't trust doctors or big pharma after decades of suffering.
get your self some a few guinea they eat ticks
In the US government kicked him to the curb
Turn up the music so I don’t have to listen to him
It's a cover up like the jab everyone was given in 2021
The doctors I have encountered do not understand the after effects or long term damage Lyme can cause. They also don’t understand that your tests will not come back positive for Lyme when you have either been treated or “had” Lyme years ago. The symptoms or medical issues are the RESULT/DAMAGE caused by Lyme!!
I tested positive for Lyme 15 years ago, had some treatment but have been dealing with significant health issues since them. I went from being a very healthy, physically fit women to being overwrought with pain, neurological issues, terrible joint issues, tachycardia, brain fog, IBS, terrible anxiety (when I don’t feel fearful or “anxious … it’s just there), insomnia…
I’ve been sent to numerous specialists … my bloodwork comes back slightly elevated for numerous things but nothing concrete. At different times i have been diagnosed with early onstage MS(13 yrs ago), Epstein Barr, inflammatory disease, etc
The joint pain and stiffening has made it difficult to move and has literally change my quality of life. I’m only 54 and can’t imagine what I will be like in just a few years.
I have no one near me that can help me or understands what’s going on.
Look into glutathione therapy it’s a life changer.I do coffee enemas, suppositories and IV’s. Also sweet wormwood (artemisinin) a Chinese herb. I still have terrible pain, but so many other symptoms are resolved. Best wishes 💚
also healthy eating is a big one and making sure your detox pathways are open and that you poop every single day. This helps keep the toxins cleared from the body.