Diagnosing and Treating Lyme Disease
http://thedianerehmshow.org/shows/2012-02-29/diagnosing-and-treating-lyme-disease
The CDC estimates there are about 30.000 cases of Lyme disease in the U.S. These figures don’t include many who believe they have Lyme disease even though signs of infection don’t show up on lab tests. In addition, among many with evidence of exposure, there’s no proof that the bacteria associated with Lyme disease is actually the cause of their health problems - especially when these problems have been long term. Among doctors debate has been vicious. Some say chronic Lyme is real and is major health issue. Others argue these claims are not supported by the research. Careers have been ruined. Contradictory and misinformation is everywhere, and patients, many with truly debilitating conditions, are left in the lurch. Join us to talk about challenges in diagnosing and treating Lyme disease.
Guests
Dr Paul Auwaerter
associate professor of medicine, Johns Hopkins University School of Medicine
and clinical director, division of infectious diseases.
Johns Hopkins Hospital
Dr. Samuel Shor
internist, private practice and associate clinical professor at George Washington University.
Dr. Brian Fallon
professor of clinical psychiatry.
director, Lyme and Tick-Borne Diseases Research Center. and
director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine
Columbia University
Stephen Barthold
professor,department of pathology, microbiology and immunology
Center of Comparative Medicine at the School of Veterinary Medicine, University of California, Davis
Program Highlights
Questions as to whether chronic Lyme disease exists, how to test for it, and how to treat it are dividing doctors and confounding patients. Diane's guests discuss why diagnosing and treating the disease remains so challenging and controversial.
Best Treatment Practices
Doses of specific antibiotics are recommended for both early-stage Lyme disease and for patients who may be experiencing some neurological problems or arthritis, like knee swelling, Dr. Auwaerter said. But as for the question about whether or not it's possible to have so-called "chronic" Lyme disease, Auwaerter said that carefully performed studies have shown no evidence that bacteria seems to persist in people with ongoing complaints after being treated for Lyme disease.
A Different View On Chronic Lyme Disease
Dr. Shor believes that there's "no scientific basis" for concluding that 30 days of treatment in all patients with Lyme disease is going to be adequate to cure the disease. Dr. Barthold has found in his veterinary practice and research that the bacteria that causes Lyme disease is very
good at persisting in an animal's body for that animal's entire lifespan. It's possible, Dr. Barthold said, that this could be the same pattern for the disease in humans.
What Happens With "Chronic" Lyme Disease?
"The infection is persistent, the disease is not," Dr. Barthold said. "And what's curious about Lyme disease is in the early phase of the infection you have arthritis and inflammation of the heart and other manifestations in animals as you see in humans. And then the immune response, particularly antibody, comes in and clears a large number of the bacteria from tissues leaving behind persisting organisms that are sequestered away in connective tissue," he said.
Difficulties In Diagnosis And Treatment
Dr. Fallon said that it's certainly possible for some patients to have Lyme disease but to not test positive for it. Dr. Shor agrees that the available testing is "insensitive." "And we have managed care which pushes physicians to see very complex patients in short periods of time and insurance companies that are loathe to pay any more than they have to," Dr. Shor said.
You can read the full transcript here.
Comments
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Thank you for taking on such a contraversal issue such as Chronic Lyme Disease. I was just recently diagnosed with Chronic Lyme and my story is very much like everyone else's. The bottom line is, we all present with the same or similar symptoms and nothing is covered by insurance. My OOP costs are going to leave me homeless if someone doesn't fight these insurance companies. After 4 months of treatments, I feel that my foggyness is worse and I relate it to fighting the bacteria and it is the toxic effect as the bacteria are being killed off. More physicians need to listen to their patients since my case could have been cured with a month of Doxy early on in the 80's. But now, I am looking very long term and only hope that my disease can be managed. Shame on the infectious disease physicians who feed bad information to the FDA for a treatment that is only short term and is only benefical to insurance companies. I do question who's side they are on. I thought all physicians took an oath to treat the sick. I do live in America and not a third world country!
My Lyme Literate Medical Doctor diagnosed me with congenital Lyme after having severe symptoms for over 45 years which caused much damage to most systems in my body. My brother also was born with Lyme disease. My doctor diagnosed me CLINICALLY, as I tested negative for Lyme at first. It was necessary to treat me with antibiotics for SIX MONTHS before I tested highly positive for Lyme. I have been on various combinations of antibiotics for over 5 years, and I still have major symptoms and major Herxheimer reactions. Also, my CD57 test results remain at 3, after all these years of treatment. My LLMD told me that after so many years of infection, it would be highly unlikely that we could ever eliminate every single spirochete from every location into which it has "burrowed", especially since I have Lyme damage in my eyes, where there is very limited blood flow into the vitreous and aqueous humor of the eye, in order to get antibiotic to the area.
My father was infected with Lyme during WWII, where he was on PT Boats in the South Pacific. At that time, and to the present day, the Lyme spirochetes have been and are being weaponized, (as admitted by the U.S. gov't http://www.indymedia.org.uk/en/2005/11/328067.html), thus making Lyme even more difficult to treat and eliminate.
I am VERY grateful to you, Diane, for having the fortitude to discuss this very controversial topic on your program. I know that my Lyme disease, going undiagnosed for over 45 years, most certainly is a CHRONIC infection which has caused great damage systemically. It has been diagnosed, over the years, as everything from chronic fatigue to fibromyalgia, to lupus, to multiple sclerosis, to psychiatric disorders, and on and on........... My LLMD told me the best I can hope for is to decrease the severity of the symptoms and the frequency of the flare ups, and thus far, it appears that he has been "right on"!
Limeric
Diane, one more thing I wanted to add. You had a caller ask about chemo's effects on Lyme. Your guests didn't know about that, but when I was first diagnosed and searching the lyme boards daily I did come across people who had lyme, developed cancer, had chemo, and were not bothered by lyme again. Just like your caller's friend, those people are out there.
One very common transmission vector for humans to contract Lyme disease is through their pet. Dog gets bit by an infected tick, dog becomes a carrier, dog licks owner, owner contracts the pathogen via their mucous membranes. This is why I do not allow my dogs to lick my face, and I always wash my hands after playing with the dogs, before touching my eyes, mouth, nose, etc.
There could be a behaviour factor here. For those pet owners that allow their dogs to lick their face, and do not wash their hands after exposure to their pet's saliva, they may be at higher risk than other "less affectionate" pet owners.
One thing is certain, Lyme disease pathogen stays with you for life, even though the flu-like symptoms may come and go over the course of your life.
I am with PANDORA, a patient advocacy organization for those with chronic Lyme and chronic fatigue syndrome. I am surprised none of your guests mentioned last year's NIH-funded study that showed post-treatment Lyme patients have abnormal spinal fluid proteins. This study also showed CFS patients have other abnormal spinal fluid proteins. For these post treatment Lyme patients with neurological symptoms, something is biologically abnormal in the brain and is chronic.
The press release from PLoS, the journal that published the study: http://www.eurekalert.org/pub_releases/2011-02/plos-sfp021811.php
This study was reported in the press, including CBS Evening News, as saying it shows CFS is a real physiological disease with objective biomarkers. It was also reported that this shows CFS and chronic Lyme are two different illnesses, with the hope that a future blood test for these different proteins will prove to be a reliable diagnostic test for both.
Another view is that CFS patients have many chronic infections: herpes viruses, enteroviruses, parvoviruses, etc. Possibly, the post-lyme patients actually have the immune system dysfunction of CFS, which allows infections of all sorts to flourish, just so happens theirs is Lyme. So the problem is not the Lyme, but the immune system dysfunction that does not keep the infections in check. Or, the immune system problem is autoimmune, just different proteins based on the infection that was the trigger. If the spinal fluid of those who had the symptoms but had previous parvovirus infections were separated from the group, might their spinal fluid proteins be different from those whose previous infection was something else? The goal here would then be to treat the infection (Lyme, viruses, whatever) but also find out what is wrong with the immune system that is making it chronic or is causing chronic inflammation (as in autoimmune) and fix that.
Thank You Diane for telling the story of Lyme. We all follow the real research as the CDC/IDSA like to stick to the old research that protects their profits of all things immunological. Because to admit the truth they would be accused of commiting crimes against humanity. Because the organisms are now not only able to share their stealth abilities with our genes and other organisms genes but with agrobacterium's now as well...If they intend to give man a chance in the 1 in 38 now being denied treatment in Autism, and all the other syndromes of unknown origin...What the CDC/IDSA actually deny the truth for is for billions of dollars of profits for things like drugs to treat all the symptoms of the syndromes, and the lies of vaccine that offers no protection what so ever in the huge masses that are actually infected. The world can no longer wait to treat the truth, because soon all our males with either have their Autism, their Alzheimers and their syndromes with another 20 yrs. of denial we will raise someone else's flag as was believed the results as intended all along...History shows us man's griveous decisions can effect whole generations without a care, such as what we saw in blankets contaminated with smallpox, and vaccines contaminated with SV and CMV's. We must not ignore the truth of the failures of MSM to give us a test for prion synergy in the blood since AIDS/MadCow/Lyme was discovered and subsequent implementation of the NVICP to protect profits. The time is now to stop this global collapse of man for profits.
Thank you so much for featuring Lyme Disease on your show! It brought tears to my eyes to hear this, as this disease is so controversial and the patients are often misunderstood, misdiagnosed and misrepresented. I was diagnosed in May of 2011, along with my two children, ages 5 and 1. My husband was diagnosed a few months later. It has been a struggle to find doctors who are knowedgeable (or even believe in) chronic or congenital Lyme. Please do a follow up feature on this disease and tackle Congenital Lyme, the controversy surrounding this disease, the other ways you can contract it (it's not just ticks...you can get Lyme and co-infections from mosquitoes, fleas, flies, spiders, etc.) and so much more. This is a complex disease and people are dying from it. We need research, more Lyme-literate doctors, insurance companies that will cover much-needed treatment and...respect! Please, please, please continue to educate the public about this horrible disease. More and more people are diagnosed each day, but there are so many more who are suffering and don't know why. Thank you again!
Melissa
www.inthelymefight.blogspot.com
I was diagnosed in August, although I've most likely had Lyme disease for years. Was previously treated in 2007 with 3-4 weeks of Doxycylcine.
Thank you so much for bringing light to this dreadful disease.
Please consider taking the time to sign the petition from LymeDisease.org for removing outdated Lyme disease guidelines from the NCG http://www.lymedisease.org/petitionscript/index.php
Thank you for covering this topic. This travesty has to end. I have two children with Lyme Disease -- and one whose suffered not only debilitating pain, severe cognitive issues and a loss of his childhood as he knew it but he has first hand experience in the injustice that's going on in the medical community. We cross state lines for coverage and his aggressive antibiotic treatment (over $3000 per month) is out of pocket because insurance companies do not have to pay because of the IDSA guidelines that are in place.
My son was misdiagnosed for years because of the guidelines... when we thought he was getting the best medical care possible, we had no idea how tainted the system is. He has already lost a year of school, sports and well-being but we're confident in his treatment.
Much thanks,
Alice in Ma.
Thank you so much for this excellent discussion on Lyme disease. There is such a need for this controversy to be aired on National Media in all the countries affected.
As you heard the current IDSA guidelines have serious flaws over testing, diagnosis and treatment. Sadly those few doctors involved in writing these guidelines based more on opinion than hard science have not only influenced treatment of Lyme Disease in the USA but sadly their influence is World wide. Even though they refuse to consider research from Europe in their guidelines because of several different species of Borrelia in Europe nevertheless all Guidelines in Europe essentially follow these restricted IDSA Guidelines.
Here where I live in the UK there are a growing number of cases of Lyme Disease but sadly our Health Protection Agency say the IDSA Guidelines are Authoritative.
I was fortunate in having a General Practitioner who suspected Lyme Disease because my symptoms of Arthritis and muscle weakness improved on a chance course of antibiotics. Four years earlier I had attended surgery with bites, rashes, summer flu' and migrating arthralgias before a chronic condition caused me to be retired early on ill health grounds.
As my symptoms deteriorated I was diagnosed with Fibromyalgia, ME/CFS, Musculo skeletal disease Polymyalgia Rheumatica ( for which I was put on steroids 20 months). I saw 5 doctors and 3 Rheumatologists.
Thanks to my GP reading ILADS Guidelines and treating me on long term antibiotics I am now recovered and have no debility , no arthritis, no pain and no muscle weakness. Sadly though most doctors here follow the IDSA guidelines and patients have to seek help privately in order to get appropriate treatment.
It is the worst medical disgrace of all time.
Nena - change doctors. It's appalling a physician would say that. Go to http://www.ilads.org/contact/contact_ilads.html and request a list of Lyme Literate Dr's in your area.
“chronic Lyme disease“. There really isn’t any such thing. (And more operationally, there is no evidence treating people so labeled with antibiotics improves their health.)
http://www.sciencebasedmedicine.org/index.php/fake-diseases-false-compas...
Don't be fooled by support groups, patient testimonials, and Lyme associations with conflicts of interest. These award winning, evidence-based medicine websites contain some of the most credible information and discussions available on the Internet.
US Centers for Disease Control
Sense About Science
White Coat Underground
Respectful Insolence on Science Blogs
Microbiologist Relative Risk
Lyme Disease Patient Discussion forum (for all countries)
What's The Harm
I contracted Lyme disease from a deer tick bite over a decade ago, was repeatedly misdiagnosed and denied treatment, and as a result am now profoundly and permanently disabled at the age of 43.
What happened to me happens every day in this country and will continue to happen, in large part due to outdated, misleading, and outright false information that continues to be propagated by organizations such as the IDSA.
These guidelines are routinely used by physicians to diagnose and treat Lyme, with many patients--such as myself--being refused treatment and/or under treated, leading to chronic and persistent and often highly debilitating illness. These guidelines are the reason why I, along with many others, must travel an hour or more from our homes to find a physician willing to treat us, and pay many thousands of dollars annually out of pocket for our care.
These same guidelines are used by insurance companies to deny coverage to patients and to sanction physicians who treat Lyme aggressively.
New studies have been released since the IDSA treatment guidelines were last revised in 2006, and yet the IDSA continues to cling to its outdated, inaccurate, and harmful guidelines. These guidelines continue to propagate--to physicians, insurance companies, members of the press, and the general public--the false and potentially quite harmful notion (among others) that Lyme is "hard to get and easy to treat", and limited to very small portions of the U.S.
Please support me and other Lyme patients, present AND future, by signing this petition, and ask everyone you know to sign it also. PLEASE.
http://www.lymedisease.org/petitionscript/index.php
Thanks for doing this show. I was diagnosed with Lyme in October and was treated for the CDC recommended 28 days. At the end of my treatment I was in an active flair up and was sent to a specialist. I was told I didn't need anymore antibiotics and progressively got worse. I had numerous neurological symptoms vertigo, dizziness, I had an irregular gait and increased difficulty walking, etc. I had to go to numerous doctors before finding help. My blood work was coming back normal and my 2nd Lyme test came back negative. I was finally put on 6 weeks of IV antibiotics. My gait has returned to normal and had a great decrease in overall symptoms. I was out of work for 2 months and now am strong enough to work. I am now on a regimen of oral antibiotics. I can't believe how many stories I have heard about simillar experiences . Thanks again!!!
In 10/1975 I had "flu" with fever and body aches. The flu improved but the muscle and joint pain did not. In 2/1976 my husband and I took the ferry to Nantucket. Stapled to the pillars of the ferry were copies of a Public Health bulletin from the state of Connecticut, notifying that there was an unidentified illness appearing in children on the Conn. coast. Some of the symptoms were fever, fatigue, joint and muscle pain, heart irregularities and others. I took a copy of the flyer to my Dr. He looked at me - I can still remember where he was standing and how he looked - and said, "Why do you women always look for the most exotic explanation?" However, he never reached a diagnosis and recommended a psychiatrist. I was so traumatized that I never mentioned the word "Lyme" again. For the next 14 or so years I went from Dr. to Dr. These were the responses, in order (I can also remember where each of us was standing when these words were said); "You are not the doctor here. It is my job to make the diagnosis." "Go home and flush your amitriptyline down the toilet. It's worthless." (I was perscribed 50mg. of ami. at bedtime to help me sleep. I am still taking it today, and it is still helping.) "There is nothing wrong with you." "Look at these (blood test) results (while waving them in my face.) They are perfect. If I got results back everyday like this I would be a happy man!" "You mean to tell me I am the seventh doctor you have gone to? What do you think you're doing?" "My dear, tell me, are you active in your community? Do you go to church?"
Finally I was referred to a European-trained rheumatologist (they have been aware of and have been treating Lyme much longer than here.) He asked if no one had ever tested me for Lyme. I said no. By this time I was partially disabled. Treatment relieved the firey burning in my knees, hips, elbows and wrists but the rest of the pain remains.
Thank you, Diane, for calling attention to this widespread and devastating illness. I was ill for 15 years, maybe longer, before I finally got the correct diagnosis from a doctor who also had had Lyme Disease. What your show failed to address was the research by Dr. William Harvey showing that the bacteria are also sexually transmitted and as has been previously commented, show up in utero and in the placenta. My husband tested positive for the disease though never had any symptoms and was bacteria free after six weeks of antibiotics. I was treated with Clafarin by IV every 12 hours for six weeks, seemed to be free and much healthier and then had another flare up which was quickly cured by oral antibiotic in six weeks. This is an agressive, persistent bacteria which requires long term antibiotics which insurance companies are reluctant to pay. Please have an additional program on the other aspects of this illness and the reluctance of doctors to diagnose it and insurance to treat it.
I'm curious about the statement (just below the picture of a tick on the web page for the show):
Patients who believe they suffer long-term problems from Lyme disease are claiming victory over a national doctors group. The Infectious Diseases Society of America has agreed to review its guidelines". Where does this information come from? It wasn't discussed during the show.
Thank you, DIane Rehm for covering this "controversy." On the behalf of my friend who has lived with this dibilitating disease, I thank you. It has been devastating for the person stricken, their families, their children and loved ones, to have been fighting this up hill battle for recognition and treatment for so long.
If you want THE TRUTH, please read this document: The Devastation of Lives and Lies: Those with Lyme disease and related chronic infections respond to the Infectious Diseases Society of America's (IDSA's) request for comments.
It was created and is being distributed by actual Lyme disease sufferers in response to the IDSA's stance. We just hand-delivered it to Congress last week. Thank you.
http://www.fileden.com/files/2012/2/27/3271113/IDSA%20Comments%20Documen...
I would love to see the reference to what was stated in your comment regarding deer ticks and lyme disease in Texas. This is what I do know. Most of the doctors (and there is alot that I have visited over the past 3 years state "There is no lyme disease in Texas". What does that say for the sick patients who go to these same doctors seeking advice and help for a barage of different symptons. The doctors will not look at lyme disease. Also, the state of Texas has on their web site that the bacteria can be transmitted through ticks, fleas and possibly other biting insects. I spoke to Eric Fonken the head entomologist at the state of Texas who told me in the 1990's the fleas were tested from 10 counties and deemed to harbor the bacteria. When I approached the CDC about this they denied having any knowledge of this. I am not trying to be nasty or point the finger. I am determined to get the information to the people and get lyme in the news locally in the state of Texas to give the citizens of our state the information to protect themeselves.
You never hear any local media sources talking about lyme disease. The only time you hear about it is when a doctor tells you might just be the victim of a very stealth bacteria.
I am sorry I missed your reference to this information. Would you mind repeating where you found this? I read some of your reference web site informations.
In 1992, I was infected with Lyme as a forestry worker in Utah. I was awarded workers comp. for the infection for 2 years. Little did I know the infection would plague me for the next 20 years. I was told the rash was a spider bite and misdiagnosed for over 6 months being told things like "did you have a fight with your boyfriend?". After 2 years of antibiotics from a Lyme Literate Doctor in Mount Kisco, NY -I recovered well enough to attend and become a practicing veterinarian. Out of nowhere, I became quite ill again with headaches, stiff necks, joint pain and cognitive problems. I went to a doctor who told me " to get married and take a vacation and maybe your headaches will go away". Then and came across Dr. Fallon and others at Columbia. I was found infected with Lyme again as well as trench fever, Bartonella quintana and Babesia microti. I've been treated on and off ever since and had some good years and some not so great times.
In dogs, multiple tickborne co-infections are well known to be lethal. I don't understand why this is not taken with the seriousness that it is taken for in our pets! These infections are found in every state and yet I still hear physicians say that it is only found in the northeast and upper midwest. In dogs testing in the first 2 to 4 weeks of infection is know to have a large number of false negatives and we treat regardless of testing based on symptoms. Why don't human beings deserve the same level of care as our dogs? And why are physicians not trained to understand the significance of vectorborne disease? Just because you can't see the little insect, doesn't mean it isn't lurking in your environment waiting to cause you or your loved ones a lifetime of disability or worse.
My daughter suffered for ten months with Lyme symptoms (no bullseye rash though). Since the test came back negative she was refused treatment for Lyme. She was tested for everything else imaginable and then told she was a teen. Get some sleep and stop being dramatic. Have a massage, Reiki, meditate and go to a psychologist. Thankfully the psychologist recommended a doctor who sent my daughter's blood-work to the IGeneX lab in CA. The results were irrefutable - positive. WHY IS THE IGENEX TEST NOT ACCEPTED BY THE CDC OR FDA??!!
She was put on three antibiotics for seven months then switched to bicillian injected intramuscularly. The side affects were too severe and she stopped. After three weeks of taking nothing she is back to where she was before taking antibiotics. Can WENDY-O and DANCE With LYME please tell me what antibiotic were used in your treatments? Has anyone tried non-traditional treatments? Ozonator steam bath? An electrical machine that emits a bacteria-killing frequency? Resveretrol? Chinese herbs?
Desperate Mom
I have had Chronic Lyme Disease for over 10 years, with debilitating neurological and physical symptoms. I have lost my career, my financial stability, my marriage, and parts of my brain. In my search for treatment, one of Dr Auwaerter's colleague diagnosed me as "depressed." The idea that a disease doesn't exist if you have not yet found the "scientific" methods to understand/treat it is very dangerous, as is Dr. Auwaerter's minimizing of what he categorizes as Post Lyme symptoms that have not yet resolved. Due to such ignorance, many people are suffering and going untreated--some dying from the disease, others committing suicide from the despair and depression that ensues--and many doctors who are helping Lyme patients have had their licenses revoked and their livelihoods jeopardized. It is appalling that arbitrary and highly restrictive guidelines are ruining people's lives when other doctors have clear clinical evidence that Chronic Lyme Disease exists and needs to be treated with combinations of long-term antibiotics.
Thank you Diane for covering the various issues on Lyme. This is/was one of those topics that I hoped & suggested would make it to NPR. I, like many others that have commented here have/had Lyme & are now dealing with the co-infections. I tested positive for it back in 2005. My first initial symptoms were extreme fatigue, extreme headache, excessive sweating along with shivering from feeling cold. These symptoms worsened to a high grade fever along with severe joint/back/neck pain. I didn't do much of anything but lie down and try to sleep away the pain in my body. I lost my appetite for solid food for 3-4 days. I was off work for almost 3 weeks. I couldn't function. A good friend of mine became my advocate for getting me to a doctor. We went from doctor to doctor to doctor asking for the blood test for Lyme. I went to over a handful of doctors and most of them told me "it's not Lyme you have. You just have the flu bug that's going around." Some of the doctors got agitated when I persisted in getting tested for Lyme. Eventually I developed a rash, this rash didn't cause discomfort but it covered 70% of my body. It was because of this rash that a doctor saw it for "possibly being Lyme related" so I was finally given the blood test and it was positive. I went through 3 weeks of doxy. I did eventually feel better but I was constantly fatigued and I suffered from joint pain. I had my ok days mixed with bad days when I constantly hurt.I developed short term memory loss, fogging out in mid conversation or mixing up words, occasional chest pains which forced me to the ER one day ( the doctors couldn't find anything wrong with me and told me I was wasting their time).
I will sum this up with, as of 2010 I began treatment for this dis-ease by a specialist/doctor. I've developed a co-infection similar to Addisons dis-ease. On meds, supplements & homeopathy.All I can do is just keep on keeping on....
I myself was misdiagnosed for decades, enduring a plethora of disabling symptoms - cardiac, arthritic, and neurological. I had always tested negative for Lyme, but it turns out that standard testing misses up to 70 percent of cases. Misdiagnosis results in patients developing the chronic form of this disease, and treatment takes years. People have died from this disease. The so-called “mainstream” medical community’s response to this epidemic has been nothing short of a public health disaster.
Many reading this post have Lyme Disease but don’t know it. Perhaps they have been diagnosed with arthritis, fibromyalgia, chronic fatigue, ringworm, MS, Lou Gehrig’s, cardiac arrhythmia, A-Fib, tendinitis, seizure disorder, migraines, stroke, neuropathy, gout, Parkinson’s. OCD, schizophrenia, bipolar disorder or panic disorder. Lyme can mimic a hundred other diseases, just like syphilis, another spirochete infection. The CDC actually admits there are probably hundreds of thousands of cases
Recently, two individuals I tried to guide to appropriate Lyme treatment DIED, ages 57 and 67. One was diagnosed too late, and treatment could not save her. The other received inadequate treatment from her PCP. Their primary care physicians did not take their complaints seriously, and they basically just watched their patients die.
Even our local hospital and walk-in clinic are woefully ignorant about this disease. When I presented with the secondary rash of chronic Lyme they told me it was ringworm. It was not ringworm, and I even got an apology from the CEO of the hospital. Prior to the rash, I ended up in the ER on several occasions with bizarre symptoms that should have suggested Lyme to them, but the ER docs were clueless.
When the truth finally emerges about the prevalence of this disease and the horrific suffering it causes, it will cause a medical scandal the likes of which this country has never seen.
I currently have 3 (14, 16, 18) sons being treated for Lyme and trust me, before this diagnosis - which meant before I started reading about this - I thought that *perhaps* chronic lyme was a mythical disease just like a lot of other people. People are just being dramatic, they just want attention, they're just MALINGERERS (said with contempt.)
I know better now.
Among their meds are Cefuroxime Axetil, sulfamethoxazole, Minocycline, Ranitidine, coartem. They also take probiotics and Nystatin for when they forget and start in with a yeast infection. Yeah, I know, it's a lot (I have a microbiological background) but I also know that my kids were getting sicker and sicker, even after going to 10 Drs. Once they started the meds, they *slowly* started getting better.
All are showing signs of improvement, debilitating fatigue is gone, skin rashes are either gone or getting better, mental confusion is gone. Some still have joint issues, stomach flares, and the most severe boy still has a rash (diagnosed as psoriasis) that is slowly clearing up (after 6 years of no improvement). Sure they are taking antibiotics but it's a lot better than taking steroids and immunosupressants for the rest of their lives.
AND we are seeing health starting to be returned. Color me a believer in Chronic Lyme.
Insurance companies need to wise up. Having had an undiagnosed Lyme infection for many, many years, I have seen numerous doctors and specialists, had various tests and procedures as well as several surgeries that would likely have not been necessary had the true cause of the problems been known and understood through a correct diagnosis and appropriate treatment. The cost to the insurance companies has easily exceeded $100,000. It seems to me that they would be wise to promote diagnosis and proper treatment as a means of saving money.
I, too, was ridiculed by specialists. One diagnosed my cognitive problems as the result of being beaten by my husband (fat chance that would ever happen). One questioned my knowledge since I had no formal education per se, but had significant influence from a parent who did have several advanced degrees in biology and physiology, asking if my knowledge came from osmosis. I eventually found someone who would listen to me (amazingly, many doctors don't seem to understand that patients might actually be able to help in the diagnosis since it is, after all, their bodies being affected).
In my case, it was my own research and my insistence on being tested that provided the answers to the numerous debilitating symptoms I had endured for decades. Likewise, it was my insistence against the advice of a veterinary specialist that a tick panel be submitted to Michigan State on one of my dogs. The results of the panel showed RMSF, and appropriate treatment saved his life.
I recently wrote a 14 page paper (17 pages if you include references) on this exact debate. I entitled it The "Lyme War": Why the IDSA Lyme Disease Guidelines Require Reform". I would love to get it published, and wish there was someway I could attach it here for others to read. I really dived in to all the research that is out there (from both sides), and presented my argument that Lyme Disease CAN be chronic and the IDSA needs to recognize this.