Lyme disease symptoms, diagnosis, and treatment

  1. You have chosen to ignore posts from BostonDotCom. Show BostonDotCom's posts

    Lyme disease symptoms, diagnosis, and treatment

    Have you suffered from the symptoms of Lyme disease? Were you diagnosed with the disease? How long did it take before you were tested by a doctor? Or do your symptoms remain undiagnosed and untreated? Share your experiences here.

     
  2. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    Before I answer that, keep in mind that ticks do not fly.  They do not bite and disappear.  You have to brush up against something (like a fern) that has a tick on it and it has to be transferred to you.  Then, it crawls around for about 3 days before chomping down.  So, if you are vigilent about checking in the shower for ticks, chances are very, very, very good that you'll SEE and REMOVE the tick BEFORE it bites.  And, even if you don't, it stays attached and gets fatter and fatter over the next three days.  It itches a little and looks like a big skin tag.  If you miss it then, you just aren't paying ANY attention.  And, if you catch it then and go to the doctor to have it removed, you get one doxycilan (sp?) antibiotic PER DAY it was attached (guessed by when you were in the woods/outside and probably acquired it).  No big deal, you don't get Lyme.  It gets a lot of coverage because "if it bleeds it leads," but the fact is, it's pretty hard to get bitten by a tick (and if you do to not notice before it falls off) IF you are looking for them.

    That being said, yes, I got bitten such that the tick was not readily visible in the mirror, and I was ignorant of all I wrote about above.  My first sign of Lyme was the traditional bulls eye rash (only appears in about 60% of cases so do not ignore all the above information and count on that to "save" you), and it was taken care of by one whole 2 week round of antiobiotics.  That was that.  Now, I know what to look for and the feeding habits of ticks so I have no fear of it happening, again.  I did get bitten, again, on my back, but I noticed it before it fell off, had a doc remove it, and took 2 pills.  Nothing happened.

     
  3. You have chosen to ignore posts from bamboobob. Show bamboobob's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    That Kargiver is so right on nothing else needs to be said.

     
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    Re: Lyme disease symptoms, diagnosis, and treatment

    I discovered an egorged tick on my chest in June of 2003.  I thought it was a wood tick and pulled it off.  Several weeks later I started feeling fatigued and the soles of my feet were sore.  I thought the fatigue might have been sleep apnea so I got treated for that, but the fatigue continued.  In the spring of 2004 I got a strong fever, followed by muscle burning and achy joints.  I then enbarked on a 16 month nightmare of increasing symptoms and seeing doctor after doctor until I was finally diagnosed with chronic Lyme disease in June of 2005.  Over the next 3 years I had two 5-6 month treatments of IV antibiotics and a 5 month course of weekly intermuscular antibiotic injections.  I've improved a great deal, but I still have headaches, achy joints, short term memory loss, lack of stamina, shooting pains, numbness and tingling, muscle twitching, and hot flashes.  The symptoms are randomly intermittent and not as severe as they were before the antibiotic treatments, but I doubt I will ever be pain free.  

    We need to find better screening tests and we need more research on potential treatments or a possible cure.  The antibiotic treatments are extremely expensive and the insurance companies don't want to pay for treatment.  I'm afraid we won't see any progress on fighting Lyme disease until we have a national healthcare system that's focused soley on caring for people and not profits.

     
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    Re: Lyme disease symptoms, diagnosis, and treatment

    In the spring of 2012, after the mildest winter since '89, armies of deer ticks emerged from the woods. I take my kids hiking to allow my wife to regain her sanity and this is how we were at risk. We soon began inspecting each other for ticks and discovered some we carefully removed. However, I did find one pretty full with my blood and ripped it off. In July my joints starting aching and my back gave out. I was walking with a cane, sleeping on the floor and wearing a weight-lifting belt. I starting seeing a chiropractor and feared my life was in for big changes. I never got a bull's eye rash or any other indicator. Then my wife starting having neck spasms and I never believe in coincidence. So we were all tested and I was the only one found positive. I completed a regime of antibiotics and felt better soon. The conclusion of the medicine was marked by a bout of diarrhea like none other. I have had multiple blood tests since and my doctor says that I have no traces left in my blood, but sometimes I feel a clank in my knee.

    This disease can become serious, most cases are undiscovered and remains mostly a mystery.

    I wish much luck to those stricken and hope that we keep sharing this vital information.

     
  6. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    Ripping off a tick is HOW you get Lyme.  You must remove the bacteria laden head which is very difficult to remove in its entirety because it is buried in your skin while it feeds.  DO NOT RIP THEM OFF, GO TO THE DOCTOR and have it removed - you have to go anyway to get the 1 - 3 antibiotic pills for the days it was attached, anyway.

    ETA:  Thanks, bamboobob. :)

     
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    Re: Lyme disease symptoms, diagnosis, and treatment

    edit/ article reposted below 7/15/2013

     

     

     
  8. You have chosen to ignore posts from learnedthehardway. Show learnedthehardway's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    A lot of the symptoms of tick borne illnesses mimic what people consider aging ie.  Achiness, cognitive problems, no energy, anxiety, depression. People don't demand help for something that they think must be an unavoidable. My mom was lucky enough to get strep throat and the antibiotics miraculously cured her "arthritis" her doctor had ignored a tick bite that had had no bullseye rash.  Luckily strep is recognized as a real illnes by the medical community so she got cared for.  The only solution is a war on ticks as they carry so many diseases. There is no way to be safe from them if you enjoy the outdoors or associate with other people and dogs who do. We will have victims for decades to come if we do not address this public health threat with the seriousness it deserves.  

     
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    Re: Lyme disease symptoms, diagnosis, and treatment

    I once caught Lyme disease after jogging in a wooded area south of Boston. I was lucky enough to have the classic "bullseye" rash located on my leg, but many people can get bit on less revealing places.

     

    Lyme disease was something that beforehand I thought as having the flu or similar illness; however, the sweating, nausea, and headache were worse than any common cold or flu that I had ever had.

     

    The diagnosis was made by my family physician, but upon my visit another physician within the medical group  who sometimes examined me believed I had contracted an inner skin (dermis) infection called Cellulitis. Luckily, both ailments are treated with the same antibiotics (Doxycycline). The diagnosis of Lyme disease is apparently sometimes obscure.

     

    If you suspect that you or a love one has Lyme disease please seek treatment as the antibiotics are very effective in this case, and permanent damage can be caused by long-term harboring of the bacteria (Borreila Burgdorferi) that may enter the Central Nervous System. Trust Me!!

     

     
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    Re: Lyme disease symptoms, diagnosis, and treatment

    My husband was gravely ill for 18 months before he was finally diagnosed with Lyme.  He had gone to 10+ internists and specialists, including specialists at Mass. General without anyone accurately diagnosing him.  There was far less known about Lyme disease then, but he was lucky to finally find a doctor who recognized his myriad symptoms and connected the dots.  A blood test confirmed Lyme, as well as co-infections which often come with Lyme exposure (babesiosis and mycoplasma, in his case).

    It took a couple of years of treatment for my husband to show improvement.  He did conventional antibiotics initially, including IV Rocephin.  But certain symptoms lingered and had to be tackled one at a time, including nerve damage in his hands, migraine headaches, migrating pains and fatigue.

    For anyone who has been diagnosed with Lyme, but is having trouble recovering, the turnaround for my husband was following the herbal protocol from the book, "Healing Lyme", by Stephen Harrod Buhner.  It took a few years, but my husband has regained his good health as a result of this protocol, as well as dietary and liifestyle changes.  

    Best wishes to anyone who is living with Lyme.  There are still so many myths and misconceptions (including many of the comments on this article).  There is a strong online community of Lyme sufferers.  Don't rely only on conventional medical advice---although it has its place, it is still lacking when it comes to treating Lyme.

     
  11. You have chosen to ignore posts from NYTimesSucks. Show NYTimesSucks's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    Lifeisamystery

    I can see you know more about Lyme than many of the so called "experts", including those at MGH.

    Congrats to you and your husband for your perseverance.

    Best

     

    In response to lifeisamystery's comment:

    My husband was gravely ill for 18 months before he was finally diagnosed with Lyme.  He had gone to 10+ internists and specialists, including specialists at Mass. General without anyone accurately diagnosing him.  There was far less known about Lyme disease then, but he was lucky to finally find a doctor who recognized his myriad symptoms and connected the dots.  A blood test confirmed Lyme, as well as co-infections which often come with Lyme exposure (babesiosis and mycoplasma, in his case).

    It took a couple of years of treatment for my husband to show improvement.  He did conventional antibiotics initially, including IV Rocephin.  But certain symptoms lingered and had to be tackled one at a time, including nerve damage in his hands, migraine headaches, migrating pains and fatigue.

    For anyone who has been diagnosed with Lyme, but is having trouble recovering, the turnaround for my husband was following the herbal protocol from the book, "Healing Lyme", by Stephen Harrod Buhner.  It took a few years, but my husband has regained his good health as a result of this protocol, as well as dietary and liifestyle changes.  

    Best wishes to anyone who is living with Lyme.  There are still so many myths and misconceptions (including many of the comments on this article).  There is a strong online community of Lyme sufferers.  Don't rely only on conventional medical advice---although it has its place, it is still lacking when it comes to treating Lyme.




     
  12. You have chosen to ignore posts from toomanyticks. Show toomanyticks's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    Bitten on a camping trip.  No bullseye rash.  Just a small red mark.  Did not see the tick, so didn't realize what had happened. Swollen knee a month later, and rare burning sensations in one place on skin.  Nothing else for a long time.  Finally, moving arthritis, headaches, heart arrhythmia, stabbing sensations, eye problems, numbness, hot and cold skin sensations, brain not working right, seizures, tinnitus, etc, etc.

    I did not get any treatment for almost three years after the bite.  By then it is entrenched.  Although I checked with several doctors at the early stage, they came up with nothing.  One suggested a diuretic for the knee swelling.  After that I gave up on doctors.  It was not until the roof fell on me much later, that I realized it was all connected.  Maybe if I had persisted with seeing doctors early.....? But probably what would have happened is that I would have followed in the footsteps of so many other lyme patients who consulted dozens of doctors and still not been correctly diagnosed and treated.


    Turned out the tick also gave me babesiosis.


    Terrible years have followed, with problems finding doctors, staying ahead of the symptoms, insurance issues.  It is the late stage untreated people who have bad outcomes mostly and some can never stop treatment or the symptoms become worse.  Wilth treatment you can function and be independent, possibly even work.  Without treatment, your life is not worth living.


    I am so disheartened and stunned that in an age when organs can be transplanted and other miracles, an infectious disease is being so willfully mishandled by the medical establishment.  There needs to be some housecleaning at the NIH and CDC, which has enforced this travesty.  It is not so much that some incompetent people find jobs there, it is the management that permits this to continue and to hurt so many.  This is a public health disaster.

     
  13. You have chosen to ignore posts from Mary Jane. Show Mary Jane's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    Sometime in the late 80's or early 90's my company had a summer outing at the Crane Estate on the North Shore of Boston. They had a bucolic herd of deer that strolled across the manicured lawn. It was a beautiful July day and since many of us were city dwellers we relished removing our shoes and frollicking in the grass.

     About a week later I was working in Amsterdam and developed an illness with high fever and a small rash (not a bull's eye). I was taken to a local hospital and treated although the medical staff were not sure what disease I had they speculated that it might be flu or toxic shock. After returning to Back Bay I noticed that I had joint pain but having family history of arthiritus I ignored it until it was dibilitating and went to Mass General Rumatology. I was diagnosed with Fibromyalgia so I tried to exercise, eat properly and take painkillers when necessary.

    Fast forward to 2007 when I relocated to CT for work and moved to Mystick/Stonington. Sometime in the early spring of 2009 I got a severe fever and "flu like" symptoms. At a clinic I was thought to have "swine flu" and blood tests were sent to CDC. Ten later I developed a rash on my stomach and returned to the clinic where I was (finally) diagnosed with Lyme. Passed the "western blot" test with flying colors. I was perscribed the usual 2 week dose of antibiotics. Since I was feeling rotten I asked several friends for a MD referral. I was amazed to find out that most everyone I met had experience with Lyme Disease. I found a wonderful doctor who had cured herself from Lyme and I began treatment with her.

    As I was being treated the pain/illness that had plagued me for years (fibromyalgia) started to disappear. I have been continually treated since spring 2009 and in December 2012 I was told to stop my medications. I was thrilled to have a cure. About 4 weeks ago my sypmtoms started to return and so I am back to more blood tests and drugs. My doctor has told me that since I had  "tick born bacteria" in my system for so many years perhaps the bacteria is now living at the "cellular level".

    This is truely a strange disorder and there is a lot of false information being given to the public. I try to stay off sites that promote radical thoughts although I can understand people's anger. Today a good friend texted me that a Live Chat would occur. I had one question for Dr. Mather regarding the possibility of ticks being on birds...and he answered in the affirmative. I find this fact frightening as I thought I was safe living in the city with a postage stamp yard...so I will begin treatment for the possible presence of ticks from rodents and birds.

    I like to joke to myself that if it were not for the 2nd tick bite I would be complaining about fibro myalgia and thinking that my memory lapses are Alzheimer's (my Mother suffered from this for 10 years before her death). Please pardon me for any mispelled words as I can't seem to find Spell Check...this is my brain on Lyme.

     

     

     
  14. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    A good reminder to check yourself every day in the shower for ticks.  Ticks don't bite a new host right away; you have 2 - 3 days to find them IF you are looking.  And, a tick that is removed before it has a chance to bite is a tick that doesn't give you Lyme.

    oh, and you can't squish them to death; you have to flush them or grind them between two rocks.

    there is no reason anyone looking for ticks should ever get Lyme; you just have far too much time to get them off you before they bite.  And, if you do miss it and find it feeding, do NOT grab and pull it out!  That forces the infected blood back out its mouth into YOU.  Go to the doctor and have him remove it.  Get one pill per day it is assumed to have been attached (up to 3).

    given this, if you're paying attention that will cover a large percentage of people's experiences with ticks.  But, if you're doing all that checking every day and you still manage to not see one hanging there getting fat for 3 days and it falls off before you notice, I suppose you would have a problem.  But, if you're paying attention it's really hard to miss.

    I got Lyme because like Mary Jane, I was a city girl who had no idea what to look for or that I should even be looking for something.  Otherwise, it never would have happened.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~

    Discretion is the better part of valor.
     
  15. You have chosen to ignore posts from GoneToTheDogs39. Show GoneToTheDogs39's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    In response to RockinRobin39's comment:

     

    How to Remove a Tick on a Human   By Alicia Bodine, eHow Contributor

    Ticks can attach themselves to animals or humans. Once they do, they begin drawing blood. When a tick is found, it should be removed immediately. The longer it is allowed to stay and draw blood, the higher the person's chances are of contracting a tick-borne illness. It is important to remove the tick correctly so that it doesn't have a chance to regurgitate its saliva.

     1 Hold a piece of paper next to the tick if it has not attached itself yet. Guide the tick onto the piece of paper and use it to transport the tick to an ashtray. Slide the tick off into the ashtray and use a match to burn the tick. 

    2 Purchase a Sawyer tick plier. These pliers will do a better job of removing the tick's head than a set of tweezers. If you don't have a set of pliers, you can use the tweezers. 

    3 Grab the tick as close to your skin as you can with the pliers or tweezers. 

    4 Pull the pliers or tweezers straight up and be careful that you don't turn them in any other direction. 

    5 Examine the skin to make sure all of the tick came out. If the head is still in the skin, you will need to use the pliers or tweezers again to get it out. 

     6 Rub an antiseptic over the area where the tick had attached itself. You can purchase an antiseptic at your local pharmacy.  

    PS:  Call your dr regarding the need for prophylactic antibiotics,  if you can, save the tick and ask to have it tested. It may be benign, not all are carriers. 

     Avatar from "The Artwork of Catherine Darling Hostetter" 

     

     

     
  16. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    One false move, aka a tick body squish, and potentially poisoned blood gets regurgitated into your blood stream.  Just a heads up that these instructions, while correct, take practice, and you probably don't want to practice on yourself.  Most doctors require you to be seen, anyway, before they dispense the number of antibiotics you'll need.
    ~~~~~~~~~~~~~~~~~~~~~~~~~~

    Discretion is the better part of valor.
     
  17. You have chosen to ignore posts from GoneToTheDogs39. Show GoneToTheDogs39's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    Most drs will offer an antibiotic protocol if you tell them you've been bitten by a tick, or they may want to do the blood test or just monitor you for symptoms, depending on your medical history and other factors .

    Save the tick and take it to your dr for testing (an empty pill container will work nicely) not all ticks carry Lyme, however there are other tick borne illnesses.

    It will give you peace of mind if you find out it's benign.

    I have removed a few ticks off myself and pets over the years.  Not lately, because I am more careful to avoid exposure and I take precautions. 

    PS: Of course ticks can be on birds and rodents, all wildlife.

    But ticks mostly love tall grass, leaf litter, brush, woods and shade.

    Ticks do not like well mowed lawns or bright sunlight.

    I have heard good things about Dr. Sam Donta, nationally recognized expert on Lyme disease.    Cape Cod Hospital, Falmouth Hospital

    Google him if you are interested.

     

     
  18. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    It's possible but not easy to do it yourself, easier with practice, like anything else.  But, if you're alone and the tick is under your shoulder blade or anywhere else you don't have a great view of and easy access to with your dominant hand you have to get help, you cannot just do the best you can because that's a surefire way to get sick.
    ~~~~~~~~~~~~~~~~~~~~~~~~~~

    Discretion is the better part of valor.
     
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    Re: Lyme disease symptoms, diagnosis, and treatment

    Recent New York Times article

    When Lyme Disease Lasts and Lasts    By JANE E. BRODY     July 8, 2013

    351 Comments 

     Chronic Lyme disease is a highly controversial catch-all term for a host of long-lasting symptoms that may or may not stem from prior infection with the bacterium that causes acute Lyme disease. Often misdiagnosed and mistreated, chronic Lyme disease leaves thousands of people physically and mentally debilitated and without a medically established recourse.

    Mary Rasenberger, 51, a New York lawyer, experienced “a series of ailments going back 10 years.” She was finally given a diagnosis of chronic Lyme disease last summer after having been told that she had multiple sclerosis.

    Her long-term symptoms were “aching joints, headaches and indescribable fatigue” that made her miserable and unable to exercise. In the last few years, two additional symptoms developed: neuropathy in her limbs and face, and vision problems. In an interview, she said she “woke up every day feeling sick”; if she became overheated, she felt as if she had the flu.

    Yet a test for Lyme disease came back negative. Desperate, she finally consulted a Lyme “specialist,” one of a number of doctors who treat patients with symptoms like Ms. Rasenberger’s with long-term antibiotics, despite the fact that such a regimen has shown no significant or lasting benefit in controlled clinical trials. These trials involved randomly assigning patients to the antibiotic Rocephin (often administered intravenously) or a placebo, with neither patients nor those evaluating their symptoms aware of who got what.

    Still, after several months on antibiotics Ms. Rasenberger, like many similar patients, said she felt “completely healthy for the first time in years.” Each time she tries to stop the medication, her debilitating symptoms return.

    Reports like Ms. Rasenberger’s are hardly unusual, and experts now realize that some people who get Lyme disease go on to develop a chronic illness even if their initial infection was promptly diagnosed and correctly treated. Approximately 10 percent to 15 percent of people who are treated for medically documented Lyme disease develop persistent or recurrent symptoms of fatigue, musculoskeletal pain and cognitive complaints.

    The condition is known as post-treatment Lyme disease syndrome, or PTLDS. “It is a real disorder, although nobody really knows what’s happening,” Dr. John N. Aucott, an infectious disease specialist in Lutherville, Md., said in an interview.

    “A lot of patients have been told they’re not really sick, just tired or depressed,” he added. “But this is not normal fatigue, and it’s not caused by depression” — although depression certainly can result from the patient’s seriously diminished quality of life.

    Antibiotic therapy for PTLDS is based on disputed reports that these patients may harbor hidden reservoirs of the spirochete causing Lyme disease, Borrelia burgdorferi, long after their initial treatment. But researchers who have studied the therapy have found it of little or no benefit, and many say the regimen is fraught with hazards that could be even worse than the illness.

    Risks include the development of an antibiotic-resistant infection, intractable diarrhea, kidney or liver damage and, as happened to a 30-year-old woman treated with an antibiotic through a catheter, death from a systemic infection called sepsis.

    People with PTLDS are not hypochondriacs seeking attention or sluggards wanting to avoid work or chores, Dr. Aucott said, though they may benefit from psychotherapy that helps them cope better with their symptoms.

    “These are high-functioning people — couch potatoes don’t get Lyme disease,” he said. “They are not crazy, and the doctors who treat them are not evil. These are desperate people trying to get better, and well-intentioned doctors who are trying to help them.”

    But until the causes of PTLDS are discerned, it will be difficult for researchers to find effective therapies. Among the possible causes of the syndrome are prolonged post-infection fatigue and an autoimmune reaction to the infecting organism, according to a recent book by Dr. Adriana Marques of the National Institute of Allergy and Infectious Diseases.

    As for why some people with PTLDS seem to benefit from intensive antibiotic therapy, at least temporarily, Dr. Aucott suggested a few theories. The antibiotics may have an anti-inflammatory effect that relieves pain and swelling. Alternatively, patients may have a low-level, persistent infection that is temporarily suppressed by antibiotics — but not killed by them. Or it may be that some PTLDS patients experience a placebo effect, improving because they believe the treatment will help and because someone is finally taking their symptoms seriously.

    Complicating the picture is the fact that some people with PTLDS symptoms apparently never had Lyme disease in the first place, Dr. Marques said in an interview. There are other infectious organisms — Epstein-Barr virus, for example — that can produce similar symptoms and may be the real culprits.

    But experts cannot rule out Lyme spirochete as a cause, either. Many, if not most, people who are infected with it never know they have been bitten by the tiny deer tick that spreads the bacterium from animals to people. They may never develop or notice the red rash that can result. Even when a rash occurs, only one in five is the characteristic bull’s-eye associated with Lyme disease. Most are solid red and round or oval.

    Such people may never receive treatment for the infection in its early stages and end up weeks, months, even years later with the kinds of symptoms that have plagued Ms. Rasenberger. Symptoms may develop gradually, as they did in my dog, which had minimal effects from a Lyme-carrying tick until nine months later, when he collapsed, unable to eat or drink on his own.

    Both Dr. Aucott and Dr. Marques said more research is desperately needed if people are to get the help they need. “This is a huge disease that’s only going to get bigger, yet it receives only a tiny fraction of the N.I.H. budget,” Dr. Aucott said, referring to the National Institutes of Health.

    Given the uncertainties about chronic Lyme disease, prevention is more important than ever. Avoid walking through brush and high grass. When hiking in the woods, camping, gardening or mowing the lawn, wear long, light-colored clothing and tuck pant legs into tightfitting socks. Spray exposed skin with a 20-percent DEET insect repellent and clothing with permethrin. Remove clothes before coming back indoors, and wash and dry them separately.

    Shower as soon as possible after being outdoors, using a washcloth or loofah, and check your body carefully, especially in skin folds, for attached ticks. They should be carefully removed with a tweezer without crushing them by pulling gently and steadily near the mouth. Then apply an antiseptic to the site.

     
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    New Tick-Borne Illness Discovered

     

    Published: Jul 1, 2013 | Updated: Jul 2, 2013    http://www.medpagetoday.com/search/?q=lyme

    By Charlene Laino, Senior Writer, Gupta Guide

    Reviewed by  Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, BSN, RN, Nurse Planner Take Posttest Action Points
    • Researchers have discovered a new tick-borne illness, caused by Borrelia miyamotoi, whose symptoms are similar to that of Lyme disease and other tick-borne illnesses, but that does not respond to conventional doxycycline in the same way.
    • Patients with the new illness, due to Borrelia miyamotoi, presented much like the others, with patients complaining of acute febrile illness, with myalgia, headache, neutropenia, thrombocytopenia, and elevated hepatic aminotransferase levels.

    Researchers have discovered a new tick-borne illness whose symptoms are similar to that of Lyme disease and other tick-borne illnesses but that does not respond to conventional doxycycline in the same way, researchers reported online in the Annals of Internal Medicine.

    In areas where deer ticks are common and Lyme disease, babesiosis, and human granulocytic anaplasmosis (HGA) are prevalent, patients presenting with sudden fever, myalgia, leukopenia, and elevated aminotransferase levels are presumptively diagnosed with HGA, reported Hanumara Chowdri, MD, of Tufts University.

    But New England researchers identified two patients from the northeastern United States who were hospitalized for presumptive HGA and treated with doxycycline -- but both patients failed to respond.

    A lack of response to doxycycline after more than 24 hours prompted further analysis. Borrelia miyamotoi infection was identified in these patients who previously would have been reported to the Department of Public Health as possible HGA cases.

    Patients with the new illness, due to B. miyamotoi, presented much like the others, with patients complaining of acute febrile illness, with myalgia, headache, neutropenia, thrombocytopenia, and elevated hepatic aminotransferase levels.

    "We presumptively diagnosed them as having human granulocytic anaplasmosis," Chowdri told The Gupta Guide. "But since they did not rapidly defervesce with doxycycline treatment -- as would be expected -- and had no laboratory evidence of Anaplasma phagocytophilum infection, we decided to investigate it further."

    The two case reports, each with undifferentiated flu-like illness, were worked up at primary care medical centers in Massachusetts and New Jersey.

    Molecular diagnostic assays detected Borrelia miyamotoi in the peripheral blood of both patients.There was no evidence of infection with other tick-borne pathogens commonly diagnosed in the referral areas.

    "The presence of B. miyamotoi DNA in the peripheral blood and the patients' eventual therapeutic response to doxycycline are consistent with the hypothesis that their illness was due to this newly recognized spirochete. Samples from tick-exposed patients acutely presenting with signs of HGA but who have a delayed response to doxycycline therapy or negative confirmatory test results for HGA should be analyzed carefully for evidence of B.miyamotoi infection, the researchers wrote.

    Sunil Sood, MD, of Northshore LIJ Health in Long Island, NY, told The Gupta Guide that physicians have to think outside the box when treating a patient with a presumptive tick-borne illness that doesn't respond to doxycycline or doesn't respond as quickly as would be expected. The good news, though, is that the patients did eventually respond, just slowly, he said.

    The main limitation of the research right now is there is no test to diagnose the new ailment ahead of time, only after the fact. So until such time as tests are developed, physicians need to be vigilant during differential diagnoses, Sood said.

    Have you encountered any new tick-borne illnesses this season? Share your experience by clicking the Add Your Knowledge link below. -- Sanjay Gupta, MD

    The work was funded by National Institutes of Health and the Evelyn Lilly Lutz Foundation

     
  21. You have chosen to ignore posts from RandyBrook. Show RandyBrook's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    I never had that kind of disease before but i am really interested about it cause i don't know when and where it will be happen to me.

     
  22. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    In response to RandyBrook's comment:

    I never had that kind of disease before but i am really interested about it cause i don't know when and where it will be happen to me.



    It won't ever happen to you if you are careful to look for ticks on yourself after being in tall grass or woods.

     
  23. You have chosen to ignore posts from Rose1953. Show Rose1953's posts

    Re: Lyme disease symptoms, diagnosis, and treatment

    Before 2005, my husband thought of himself as someone who never got sick. He was a long-distance runner. He had health to spare, so he donated a kidney to someone he didn't know. The following year he had a fever with a temperature of 102 for a week. His GP told him he didn't have a fever. She was going on vacation, she said. If he was worried he should go to the ER. He checked his temperature when he got home. It was still 102. He didn't go to the ER.

    So began a 7-year saga of bewildering symptoms that appeared and disappeared, moved around the body, and grew steadily worse over time. Profound fatigue, "brain fog," dizziness and balance problems, double vision, difficulty swallowing, bone-chilling coldness, disrupted sleep patterns, dreaming while awake, memory problems, misjudging distances and walking into door frames, difficulty integrating more than a paragraph when reading, reaching for a word and choosing the wrong one, stabbing pains in the back and sides, an 8-month headache that felt as if his head was being drilled, chest pain, slow heartbeat of 40 per minute, arrythmia, joint pain, and a sense of disconnection known as depersonalization or derealization. He never found a tick--some of which can be nymphs as small as a pinhead--or a bullseye rash.

    So also began a long search for a diagnosis, which took him from a provincial hospital to Mount Auburn Hospital in Cambridge to Mass General Hospital in Boston, moving, we thought, in a direction of greater expertise. Five neurologists, two nephrologists, two cardiologists, one endocrinologist, one infectious disease specialist. Five MRIs, three lumbar punctures, EEGs, batteries of blood tests, a sleep study, neuropsychological testing. No diagnosis. Unless you count a neurologist in a provincial hospital who told him to stop worrying about his symptoms, go outside, and enjoy the fresh air and exercise. Or a neurologist at Mass General who, despite answers to the contrary, kept asking if he was depressed. "I'm not," my husband replied, "but given that I've been ill so long, I ought to be."

    Perhaps the most painful part were the reactions he sometimes got from people around him. "You're fine. You're just old." "It's because you don't use positive thinking." "I don't think your symptoms are real." A man whose main focus for years had been what he could do for others, accusations of imaginary illness attacked his very core.

    Finally, after five years, he found a Lyme-literate doctor. Through a combination of test results and clinical assessment, he was diagnosed with Lyme disease and several coinfections. These work synergistically with the Borellia Burgdorferi spirochete to make Lyme disease symptoms much worse and much harder to treat. And often, the longer treatment is delayed, the more intractable these tick-borne infections become.

    After nearly two years of treatment by oral antibiotics, the cardiac symptoms are better, but not the neurological problems. Like all doctors, Lyme-literate doctors vary in experience and skill. Some are better or worse at dealing with the complexity of late-stage tick-borne illness, when Lyme, coinfections, stealth infections, and nutritional and hormonal problems caused by all of the above pile on top of each other and make it difficult to get well. My husband's changing to a Lyme-literate doctor out of state who has more experience with a bigger range of patients, a broader range of treatments, and a grasp of the complexity of tick-borne infections.

    But we're grateful to all Lyme-literate doctors, of whom there are only a handful in Massachusetts. They risk lawsuits to help the thousands of patients in the chronic Lyme epidemic who've been so shamefully treated by the medical establishment. There are around five thousand cases of Lyme disease in Massachusetts each year. The Mass Dept of Public Health estimates a 5-10-fold under-reporting rate.

    Because of absurd diagnostic criteria, inadequate tests, and the arrogant refusal of doctors in research hospitals to acknowledge the evidence of chronic tick-borne infections, thousands of very sick people are denied insurance coverage for treatment of their Lyme disease and co-infections. Many lose their homes and pawn their wedding rings to pay for their and their family members' treatment. Many can't afford medical treatment at all, and, as much as their illness allows them, experiment with treatments in books and on the web.

    Many end up fighting their debilitating illness alone. And because the very existence of chronic Lyme is denied by the medical establishment, few receive offers of help from friends, neighbors, and family members compared to those who have less contraversial diseases.

    If you have a friend, neighbor, colleague, or family member with chronic Lyme disease, please listen to them. Please see if they need help, but don't like to ask: cutting up vegetables, getting to a doctor's appointment, doing a small house repair. And please find out more about their illness. The best source I know of is this very readable, award-winning blend of science journalism and memoir:

    http://www.amazon.com/Cure-Unknown-Inside-Lyme-Epidemic/dp/0312378130

    Simply by becoming informed, you will make a tear in the fabric of disinformation and the massive injustice it perpetuates.

     

     

     
  24. You have chosen to ignore posts from GoneToTheDogs39. Show GoneToTheDogs39's posts

    Re: Lyme disease symptoms, diagnosis, and treatment


    On Dan Rea WBZ radio 1030AM tonight 8p-12a  9/11/13   

    I think he will be the second guest, 9p?    http://boston.cbslocal.com/#listen-live

    The Truth About Lyme Disease.  Temperatures may be cooling (though not today!) but the risk of Lyme disease is still very real.  Tonight, NightSide brings you Dr. Sam Donta, one of the most well-known and recognized Lyme disease experts in the world.  Tune in to hear him break down fact and fiction, and then call in and join the conversation!

    PS: The podcast will probably be up in a few days, if anyone is interested

     http://boston.cbslocal.com/search/?q=sam+donta

     

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