Living with Lyme

By on October 17, 2012

coverlead
“You try to make the best of things even though you feel like you are dying while you are living,” Price says. “I look at all these drugs and think: These should be for a 90-year-old, not for me.” – STACEY DANA PRICE – courtesy

Jackson Hole, Wyo.-Stacey Dana Price doesn’t know how long she’s been living with Lyme. She remembers a tick embedding itself in the back of her neck when she was three years old. An uninformed doctor burned it out. Price was never the same.Every doctor in the state of Wyoming will tell the 45-year-old Jackson woman she did not get Lyme disease from that tick. At least the ones Price went to did. They told her she could have rheumatoid arthritis, multiple sclerosis, ALS (Lou Gehrig’s disease), Parkinson’s, Lupus, mono, fibromyalgia, chronic fatigue syndrome, or a dozen other frightening ailments. At first, no one suspected the wormlike bacterium called a spirochete that was slowly killing her from the inside out.The causative agent in Lyme disease is Borrelia burgdorferi (Bb). It is a corkscrew-shaped genus of bacteria transmitted by some members of the Ixodes class of ticks. The spirochete couldn’t be a more efficient destructive force if it was manufactured as a means of biological warfare, which some believe it was. It systematically drills through tissue to get at any part of the body: muscle, organs, anything. When it’s not eating away at its host, Bb hides from the immune system’s soldiers – white blood cells (leukocytes) – inside a biofilm, making it nearly impossible to eradicate in some cases and often hard to detect in blood tests.Further, recent genome evidence (Luft, et al) suggests Lyme spirochetes have developed the ability to sump pump out first-line antibiotics like doxycycline, thereby protecting themselves from manmade antibacterial compounds engineered to kill it. Noted veterinary scientist Stephen Barthold, DVM, PhD, found Bb spirochetes to be the ultimate survivalists, suspending their replication to confound conventional antibiotics designed to target bacteria cells as they divide. Still other research suggests Bb spirochetes might activate long-vanquished viruses in the body like Epstein-Barr, chickenpox or mononucleosis – awaking them to arise and begin attacking their host again.

Before they are clinically diagnosed, patients with the burgdorferi bug running through their body experience a suite of symptoms, leading to tests and treatments for dozens of misdiagnosed ailments. The “great imitator,” as it’s known, may have duped the medical profession for as long as thousands of years.

The face of Lyme

As a young girl, Price confesses she was tomboy. When she wasn’t lugging irrigation pipe or bucking hay on the family ranch in Star Valley, she was playing sports – volleyball, fast-pitch softball, track. “I was this tough girl,” Price says. “I won the President’s Award for the most pull-ups when I was a kid.” But even then, Price was vexed by mysterious rashes, earaches and sinus infections.And when she got sick with the cold or flu, she was down for weeks or months. Her immune system was never quite up to the task.

Still, Price fought through pain and illness to live a normal life. She ran her own cleaning business in Jackson for 19 years and was an active volunteer in the community. But by the time she married her husband Troy in 1998, she was afraid to leave the house. Frequent illnesses produced anxiety which finally bloomed into full-blown agoraphobia.

Like a lot of Lyme disease patients who don’t realize what’s causing their symptoms until they’re diagnosed, Price thought her problems were psychological. Maybe the worry of getting sick made her sick, she thought. But nothing accounted for the pain: the classic joint ache described by so many Lyme disease sufferers.

“I would try to go to work. I have always pushed through pain. I never went to see doctors. I was tough,” Price says. Her husband said he’d never known his wife to even take so much as an Advil when he first met her. “I feel I am pretty tolerant to pain but this felt like bone-on-bone grinding. It was beyond anything I’ve ever experienced.”

By 2008, Price couldn’t take it anymore. Something was seriously wrong. She sought out doctors who sent her to personal trainers, chiropractors and gynecologists. “We kept looking for that physical,” she says. “They tried every kind of pain medication on me. Nothing touched it. Nothing.”

Conventional medicine had no answer. Price went to an alternative practitioner in Rexburg, Idaho – Dr. Destin Thayne, BEP. A BioEnergetic scan returned a result from left field: Lyme disease. Stacey and Troy had no idea what Lyme was. They vaguely recalled it was a tick disease from back East.

Here comes the science

Lyme disease takes its name for Lyme, Conn., where a mysterious cluster of juvenile rheumatoid-arthritis cases ravaged the community in mid-1970s. Dr. Allen Steere, then a resident at Yale University, examined the phenomena and suspected an arthropod vector of some kind. By 1981, entomologist Willy Burgdorfer had isolated the pathogen in the digestive system of a common deer tick. Ground zero was a patient named Polly Murray. The world was hip to an old foe.

Ötzi, the 5,000-year-old “iceman” discovered in a receding glacier in the Alps, had Lyme disease. Genome analysis of the natural mummy concluded that he had one of the 17 strains of Lyme-causing Bb currently sequenced by Dr. Steven Schutzer, an immunologist at the University of Medicine and Dentistry of New Jersey. Benjamin Luft, M.D., chief of the Division of Infectious Diseases at SUNY Stony Brook, believes hundreds of strains of the Lyme disease spirochete exist worldwide, reducing serologic tests for its antibodies no better than a coin flip. False positives and false negatives continue to plague initial screenings like ELISA (enzyme-linked immunosorbent assay) and the Western blot.

Discovering Lyme was the easy part. Getting the medical world to agree on what it is, what it isn’t, and how to treat it, has so far been daunting.

For starters, a great majority in the medical professional do not believe in chronic Lyme disease. They take their cue from the Infectious Diseases Society of America (IDSA), the medical association that dictates treatment protocol. According to the IDSA and many leading experts like Yale School of Medicine professor Dr. Eugene Shapiro, Lyme disease is fairly easily treated: three to four weeks of an antibiotic like oral amoxicillin or doxycycline and it’s eradicated.

A measurable resistance in the academic medical community soon followed. Schisms over treatment protocol developed. A growing minority of practitioners are now turning to open-ended courses of antibiotic therapy to fight persistent symptoms associated with Lyme disease. So-called “Lyme Literate” doctors (LLMDs) buck IDSA and the Centers for Disease Control and Prevention (CDC) recommendations by keeping patients on an aggressive schedule of antibiotics for years.

Other alternative therapies like acupuncture, infrared saunas, and scores of supplements are also often prescribed. LLMDs who do not practice in protected states like Connecticut, California and Washington risk losing their license for acknowledging the 10 to 20 percent of Lyme sufferers who do not respond to the treatment guidelines recommended by the IDSA.

“If I had MS there would be no problem, but this has a lot of weirdness that goes with it,” Price says. “You never know how they are going to come after your doctor. You learn that you have to protect them.”

Price does not want the name of her doctors in Seattle divulged in this story for fear they will be outcast by the medical community at-large.

Conspiracy theories abound

The Lyme issue is mired in controversy and conspiracy theories. Are corrupt insurance companies calling the shots, as some suspect? The CDC states Lyme is a vectorborne illness contracted only through the bite of an infected tick. Even though Bb has been found to live in blood stored for donation – and the Red Cross will not accept blood from Lyme disease patients – the CDC says a person-to-person transmission has never been documented.

Anecdotally, it seems nearly everyone knows someone who has Lyme disease. Price says she knows 20 people in Jackson living with Lyme. Yet state health department PIO Kim Deti says there is no evidence Wyoming ticks are carrying Bb. “The state feels quite confident that people diagnosed with Lyme disease in Wyoming acquired it from outside the state,” she says. Deti explained Wyoming’s wood ticks and dog ticks might carry Rocky Mountain spotted fever, Colorado tick fever, or maybe some Tularemia, but none have tested positive for the Lyme disease spirochete.

“If you print this article you will have probably 50 doctors in Jackson who will say Lyme disease does not exist here. They’ve not been schooled,” Price says. “This town needs to wake up. Lyme disease is here, and I think it’s been here for a long time. It’s an epidemic.”

Suzanne Morlock’s husband Glenn Messersmith was one of three Lyme disease cases confirmed by the state in 2009. Morlock admits it’s entirely possible the avid outdoorsman, who spent 13 years on Search and Rescue, could have been bitten by a tick outside of Wyoming – either way, Messersmith’s symptoms have cost him his job and keep him all but homebound these days. “It has totally transformed our lives, no joke,” Morlock says. “We have been to 18 doctors including the Mayo Clinic. The medical costs over the last decade are in excess of $300,000.”

Lyme alarmists often espouse the disease to be one the fastest-growing infectious diseases in the country, if not the world. The official CDC tally shows 96 percent of the cases to originate from 13 states bunched in known Lyme hotspots in the Northeast and upper Midwest where Lyme-positive ticks have been found on as many as 40 percent of the deer living in those regions. The annual numbers hover right around 25,000 cases since 2002.

Unreported or unresolved cases attributed to Lyme disease could push the true numbers higher. Feeding the Lyme literate movement is a 2008 documentary called “Under Our Skin,” and a nation of unresolved sufferers with available high-speed Wifi. Believers say they are on the brink of a breakthrough. Shapiro and other skeptics of long-term Lyme sufferers say the best treatment is a surgical one: an “Internet-ectomy.”

“I think it’s become somewhat of an Internet phenomenon,” says local doctor David Shlim, who says he has seen the controversial movie. Shlim, who is also president of the International Society of Travel Medicine, practiced for years in Katmandu before moving to Jackson nearly two years ago. He has seen only two patients with verified Lyme disease – both contracted it back East.

“One has to be a little bit cautious,” Shlim warns. “People don’t feel well. People want to attribute their chronic suffering to something and are real grateful when someone can pinpoint anything with a diagnosis. There is a market for people who want to be told they have something. The story is not really buying into all that’s on the Web but trying to get to the root of what is causing these people’s chronic suffering and being cautious about feeding into the conspiracy theory.”

Price says she cried when she first saw the documentary. “Not for me but for the people who are still not diagnosed,” she says.

The hype and increased awareness about Lyme disease does seem to coincide with the proliferation of Internet use. But are self-diagnosing patients simply getting educated – sometimes faster than general practitioners – or are they vulnerable suckers to every quack with a URL address?

Many chronic Lyme sufferers whose blood tests come back clean are told their symptoms are all in their head and referred for psychiatric evaluations. Pain is relative and subjective. The vague, collage of symptoms associated with Lyme and co-infections like Babesia, Bartonella, and other tick-borne bacteria including Anaplasma and Ehrlichia, are not overt enough for modern medicine. But patients who were once told they were faking it or imagining things are receiving vindication from an unlikely source: veterinarians.

“Vets are more up-to-date on this than regular doctors,” says Price. “They have plenty of cases and none of the stigma. And their patients don’t know how to ‘fake it.’ I think the Lyme community is hoping the veterinary doctors will find the cure.”

Local vet Ernie Patterson has diagnosed dogs with Lyme disease. Not a lot; maybe three a year, he says. He looks for recurring lameness and swelling, a low-grade fever, and other clinical evidence. Lyme is pretty far down the “suspect list” when he is diagnosing a dog, but if the animal responds poorly to primary protocol and he knows it has a history linking it with Lyme-infested regions of the U.S., he is more likely to test for it.

“It is controversial and I don’t think we understand everything about the organism or how it works,” Patterson admits, “but I’m not aware of this area being a Lyme endemic area. I have not seen [Lyme] in a local dog that was born and raised here, and had always stayed in the valley. The only dogs I’ve treated have come from, or travelled to, known Lyme-infested areas or, in the case of shelter dogs, had a gap in their history that could not be accounted for.”

Nebulous symptoms cause doubt,produce anxiety

Price may have doubted herself for a while. “Why would I get sick for so long and then rebound?” she would ask herself. “And I know I used to look better than I do now,” she says. “People say ‘that’s just age’ but I don’t think so.” Was it just a nagging case of the flu that caused her to forget how to shift gears in her truck, or how to spell the word “of?” Some Lyme patients report “brain fog” so bad they had to call their spouse and asked to be picked up because they couldn’t remember how to get home from a few blocks away.

Price became certain of her sanity when the seizures began in November 2009. This was no psychosomatic episode. Her husband Troy saw her lock up and go down on the bike path near her home. “That was the first time I’d seen anything like that; it freaked me out,” he says.

“It wasn’t the first one,” Price came clean. “I had been having those but I just wasn’t telling anybody because, I don’t know, it was just one more thing. It wasn’t until they started getting really bad.”

Price says her convulsions are often triggered by stress, fatigue, or a particular frequency of sound. They are tonic-clonic seizures leaving her aware of her surroundings but unable to do anything but tremor.

“I am coherent. I know what you’re saying to me. I just can’t respond. Maybe we should figure out a code with blinking or something,” Price turns and says to her husband. “But they don’t scare me. There’s nothing my body does that scares me anymore.”

Progress is slow

Research has been spotty and unhurried. Maybe the world’s top “lab coats” believe the CDC when they say only 10 to 20 percent of Lyme disease of patients experience lingering symptoms after completing a recommended course of antibiotic treatment. Symptoms that cannot, the CDC insists, be cured by longer courses of antibiotics, will “generally improve on their own, over time.” Or perhaps little pressure exists to find a cure for an infectious disease with limited contagion due to no known human-to-human cases of transmission.

Some blame the lack of answers on an unintended consequence of the Bayh-Dole Act (1983) which gave universities, small businesses and non-profits intellectual property control of their inventions or medical discoveries. Research findings are so valued today they are jealously guarded, hindering communication and overall advancement in the field of medicine.

Price is optimistic about her current condition. Her latest WBC counts have been alarmingly low, but the seizures and aches are getting better. “I sure hope I get into remission because it sucks to live like this. You lose your friends. Once you are not useful to somebody, they don’t come visit you anymore,” Price says.

One aspect of Lyme disease that seems common to all sufferers is the aloneness they feel in fighting off the constant niggling of sickness. Outwardly, they may appear fine to their friends and co-workers. Inside, their immune system is waging a never-ending war with a microscopic organism delivered by a nymph-stage tick no bigger than the period at the end of this sentence.

Price says, “When I am able to go out, people will say, ‘Oh, you’re cured.’ I think to myself, ‘Yeah, I was able to make it outside of my house today, wow.’ Little do they know I spent days and days in my house going from bed to couch. That’s what I don’t tell people.”

Price is sick. She’s lost a lot of muscle mass. On bad days, one side of her face droops. Her hips ache constantly and her head feels swollen. At any moment, particularly if she overdoes it, her body might succumb to localized tremors, temporary paralyzation or full-on seizures.

“I won third place in the Climb the King contest in 2008. I was doing Bikram yoga, which is really hard. I was really athletic,” recalls Price, “I would clean my whole house before going out and cleaning other peoples’ houses. To lose all of that was really humiliating and sad for me. I am accepting where I’m at now and not worrying about the past and what I was able do. Recently, I loaded the dishwasher all by myself. That’s a big thing for me.”

Price says she will attend her own benefit Saturday night at the Elks Lodge. She has to pick and choose her outings judiciously, and rest up for weeks beforehand. That night, she’ll sedate heavily to calm her brain and wear earplugs to ward off seizure-triggering sounds.

But don’t expect Price to look sick or defeated. She’s not about wallowing. “I don’t have any intention of dying. I’m too rebellious,” she says. “And why be sad? I’m not a sad person.” Some of her Facebook friends have commented on her pictures: “You don’t look sick,” they write. “Honestly, to hell with those people who say that I don’t look sick enough. If they want to see pictures of me in a hospital bed with tubes coming out of me all over; I have those pictures, too, I can show you. But I’m choosing to be positive about this. Sometimes, that’s all I’ve got.”

Reader Comments
Jake, not that we should be surprised or anything, but this is a very well-done story. Answers a lot of questions about Lyme disese while putting an all-too-real human face on the affliction. Also lets us know there are still unanswered ones as well.
Anonyholic II

Great story Jake.
Mary

One of the best written articles on Lyme that I have read. Thank you. It seems Stacey and I have had some of the same Wyoming doctors. Thank goodness for an Internet blogger who set me on the correct path or I would probably still be suffering from “MS”, assuming I would even still be alive. I admire Stacey for going public with this. I’m not ready to do that and therefore really appreciate those that do. While there is no known cure, there is treatment, provided one receives a correct diagnosis.
Lyme in MT

My goodness….this is the BEST article I have EVER read about Lyme. I have had all these “weird” symptoms for so long and have search the internet for answers. Lyme always seems to come up during my search. I too believe that we have this in Wyoming and that the doctors just dont believe. I will be saving this article to my favorites to refer back to. VERY WELL done story with lots of facts Ive never known about
Jeannie

This is the best Lyme article I have seen. I have suffered with Lyme for 40 years – way before the internet so those who say it’s an internet phenomenon are totally wrong! There are too many like myself. I had misdiagnosis after misdiagnosis, nothing helped me as they were treating the wrong diseases and often those treatments left me much worse off. Once I got in with an amazing LLMD and on long term IV antibiotics, I went into a glorious 7 year remission. But Lyme spirochetes are stealthy, they hide in that encysted form when you are in remission and come out when your body is weakened. I came out of remission due to a major surgery shortly followed by several less major ones – and have had a much harder time getting into remission this time around. Stacey has an amazing outlook! It is very difficult, yet oh so important, to stay positive through this. But not only are we very sick, at times very near death, we also tend to loose all of the people we thought were friends and many have family abandon them. Thank you so much for such a well written article.
Diane

This was a very informative Lyme article. I too have Lyme; suffering for 5 1/2 yrs. Thanks to a wonderful LLMD in Washington, D.C. I am so much better. However, I continue taking 4 different kinds of antibiotics on a monthly protocol in addition to herbals for Lyme along w/ numerous different vitamins & supplements. Hopefully, 1 day I will realize my hip/back, shoulder, legs, hand don’t ache anymore & will finally be able to sleep w/o medication, etc & etc. I too was once a very energetic vibrant person, but the lethal spirochete took me down w/ a vengence! I try to stay positive especially on the few “good” days! I pray that someone will soon find a cure/vaccine …. something to eradicate this vicious bacteria that can so easily attack one’s body.
Brenda

The former comment submitted by Brenda from Virginia.
Brenda

So let me ask a question. If you had a person call the newspaper and tell you they were a vampire, that 50 doctors and experts had told them they were not a vampire, but they still insisted they were a vampire, would you publish a report stating as fact that they were a vampire?? This person is obviously suffering, but has ignored the medical evidence and opinions of dozens of thoughtful and well educated experts and has formed a conspiracy theory that you have accepted as fact. Hmmm. Doesn’t seem like sound investigative journalism to me.
Skeptic

Seems we have an IDSA blog troll in our midst…
Lyme in MT

@skeptic: If I had a person call the newspaper claiming to be a vampire I would alert my editor to “stop the presses” as they used to say. It would be a blockbuster story and an Internet sensation. If this is your way of beating around the bush and slying intimating you yourself are a vampire, or a werewolf, or anything scary like that (especially around Halloween) PLEASE, and I’m begging you, call me immediately! And dont forget photos. Oh, and by the way, dont even try to claim you are a zombie. We’ve already got a couple of those on staff.
jake

Wonderful and informational article. I suffer from lyme as well but was partially cured with standard treatment and as time goes on have been getting well. Still frightened that this may be a never ending battle and even my non-lyme literate docs are encouraging longer periods of antibiotics. @ skeptic…the only ones suffering from the controversies of lyme are the patients who can’t get a proper diagnosis and effective treatment. What works for one doesn’t work for all. Continued research, better diagnostics, and more effective treatment are necessary! For any other skeptics…ticks are easy to come by and lyme is every where…perhaps controversies could be easily disproved by willfully giving people lyme just to measure how well a 3 week course of antibiotics really works…any volunteers?
lymenurseNC

You are a courageous woman to share this story. If the United States would take the lead in researching this disease and the other awful tick borne illnesses that people contract, lives could be restored, childhoods could continue, and the world would be a much better place.
karen

Thank you for this article. My son has Lyme and PANS (PANDAS) as well. It’s real, it’s devastating and it will continue to destroy lives until the country decides that it must do something about it.
Lisa Kilion

My 22 yr old daughter was diagnosed 11 months ago with Lyme and actually tested positive western blot. She has been experiencing the usual symptoms since age of 10. I took her to various types of doctors because the symptoms were so varied. Of course all blood tests, X-rays, ct scans and mris came back normal or showed nothing. Of course there is no Lyme in Texas just like there isn’t Lyme in Wyoming. She is on multiple long term antibiotics and after six months we are seeing the light at the end of the tunnel. It’s been disgusting to see how the CDC and UDSA have their heads up their _____. And deny all of this evidence. It’s bad enough that the people are suffering with Lyme and their families are doing everything in their power to get them well so they can have normal life. And we all end up victimized by the medical community that we are supposed to trust to follow their hypocratic oath TO DO NO HARM.
Brenda maxwell

Thank You Stacey, a very well written article. I hope everyone reads it. I have had lyme since 2005, and am very lucky to have gone to a good lyme doc., and now I have few symptoms, but I still have it. One particular doc in Jackson insisted we didn’t have lyme around here. I am living proof that he and the rest that claim that, are only doing a big dis – service to their patients. I had not been out of Teton County for years. There are good lyme literate docs out there, you have to get out of this state to find them. Even though my treatment was very difficult to go through, 2 years of antibiotics has saved my life. Sceptics can go suck eggs!
Kim, Wilson Wy

Regardless of whether or not there is Lyme in Wyoming, the fact is, people travel! We believe I picked up Lyme 43 years ago on vacation to New Jersey. I even recall the bull’s eye rash. My symptoms hit s crescendo while I was living in Wyoming. For any doctor to say “we don’t have Lyme here therefore it can’t be Lyme” is ignorant and worse, unthinking. The ignorant can be taught, but there isn’t a thing we can do with someone unwilling or incapable of thinking.
Lyme in MT

Stacey, thanks for having the guts to come out with your story. I’ve been finally diagnosed in 2005 (from an awesome courageous local Jackson doc) after 20 years of seeing a multitude of docs getting no diagnosis other than, like you, names of things they do not know the cause of (MS, fibromyalgia, depression, anxiety, arthritis, tendonitis, migraines etc.). I have been treated with both modern western medicine and alternative medicine and after 5 years am still struggling. Without the diagnosis and treatments I would probably be in a wheelchair by now. Thankfully I have health insurance but in spite it costs me at least $10K a year out of pocket. Thank you for helping to educate Jacksonites – they need to know to protect themselves and their loved ones. See you Saturday. A note to the skeptics, god forbid you get Lyme! Anonymous
Anonymous

Congratulations on an informative and mostly accurate article — a situation rare in the world of Lyme. I hope Stacey’s story helps bring awareness to the gatekeepers of diagnosis and treatment so that others can be diagnosed soon enough to get effective treatment. The longer before treatment, the less likely one is to be fully cured. BUT Person to person transmission has been documented and validated by research. Pregnant women can transmit Lyme disease (and at least one of the possible co-infections, Babesia, which is similar to malaria) to their unborn child or to the baby via breast-feeding after birth. Sexual transmission of Lyme is also validated, so theoretically Stacey could have been infected by her husband. Finally, the concept that the internet is causing all this focus on Lyme disease is looking at the issue backwards. All these people are too sick to have a life due to poor diagnosis and treatment of Lyme disease. The internet allows easier communication among these people but does not create an epidemic. Saying this is an ignorant, demeaning behavior that adds pain atop an already painful condition. Insurance companies thank you for spreading that nonsense. Lyme patients will rant about it because we don’t want others to suffer. We rant online because we can’t get out in person due to our disease.
Rosala

Can we put a tick on the vampire? From a Tertiary Neurologic Lyme Disease patient suffering 13 years, it will cure your skeptisism.
Lorraine, Kentucky

I am 46 and got my tick bite in Utah at the age of 8. Utah is a state that has NO Lyme Literate Doctors. Furthermore, I lived in Canada my entire life til age 31 and was never diagnosed. Like Stacey I was ill most of my life with random changing symptoms and in pain all of the time. Luckily I moved to VA and was properly diagnosed a couple of years ago. Me and my children are in treatment. It can be transmitted in-utero and definitely through breast milk. My children did not have any tick bites and have tested positive for tick borne illnesses and have had symptoms since birth.
kate richards

The reporter took her Lyme diagnosis at face value, based on a quack practitioner’s “BioEnergetic Scan”. Has anyone ever verified her diagnosis? The practitioner has no credentials other than “BioEnergetic Practitioner” and his web site specifically states that “he does not diagnose diseases”. His clinic offers other services such as chelation, infrared sauna, and ionic footbath – seems a bit fishy. The BioEnergetic Scan has never been shown to be an accurate way to diagnose Lyme disease. If this practitioner’s scan is so accurate and groundbreaking at diagnosing Lyme disease, where is the evidence? And if it’s so good, why isn’t it more widely available? I feel bad for this woman. She seems to be sick and suffering from some medical condition, but “Doctor” Thayne has obviously pulled a fast one on her. I’m sure he’s still making lots of money off her and countless others.
Voice of Reason

Voice of reason…Please. ” has anyone ever verified her diagnosis? ” Although it is none of your business, The Bio scan was done 1yr BEFORE I had 107 tests done from igenex, Labcrop, western blot, elisa and many many more other MEDICAL tests that confirmed I had Lyme Disease…. Before you write , you might want to ask more questions rather than attempt to tear down someone’s practice that you obviously don’t understand. Dr. Destin Thayne did not try to cure me. He in fact sent me in the direction of locating what is called a Lyme Literate Medical Doctor. They Specialize in treating Lyme Disease.Other than being rude and uninformed,what is it that you specialize in ? What are your credentials ?….yes I am THAT girl !
Stacey Price

Such a well written and honest article. I was infected 50 years ago during childhood in NJ. There was no “treatement” at the time. I have spent most of my life thinking the wrong things about myself. In 2003 I had a “lyme Test” and was told by my MD that it was negative. In 2012, I saw a copy of that test, and it was not negative. Through further testing, I am found to be CDC positive for Lyme. I lost at least 10 years of my life that could have been made healthy. Do not believe those who tell you “You are crazy” or “There is no LD here”.
pampe

GREAT article Stacey!! Thank you for bringing more advocacy to this devestating disease affecting hundred of thousands of people worldwide. A very well written and informative article! Being a Lyme sufferrer myself and your good friend I know the struggles you have and are going through. Great job on bringing some light on this issue that’s being ignored by numerous physicians across the world. So happy for you that your fundraiser and this amazing article was a great success!!
Randy Garvin

Thank you Stacey & if I had to sum you up in one word it would be; Courageous!!! Phantom Illness = Borrelia burgdorferi AKA; Lyme Disease + Bartonella + Babesiosis & more. The IDSA and it’s band of misfits have been committing genocide world wide. Doctors need to be trained better. I will tell you anything the IDSA has to say about Lyme Disease & it’s coinfections have been straight out lies, had I listened to them I’d be dead right now!
Dave Mack

Even if we leave the issue as to whether Borrelia is chronic we have so many other CHRONIC co infections that this is pure nonsense from the IDSA. In my next comment I will leave some info on a few of the co infections you can have from a tick bite.
Dolores Claesson

Lymies…I would get all these tests…Western Blot for Borrelia, also test for Borrelia hermsii, and Babesia duncani and microti and Quest can test for duncani, Bartonella henselae and quintana, Brucella, Tularemia, Coxiella burnetti or Q fever, many rickettsias ie Rocky Mountain Spotted Fever, Typhus, Ehrlichia, Anaplasma phagocytophilum, EBV, CMV, all Coxsackie viruses, and now Powassan virus and its cousin Deer Tick Virus, HSV 1 and 2, HHV 1-8 if available. Parvovirus B -19 papillomaviruses, Toxoplasmosis, Chlamydias and Mycoplasmas and get genetic tests for hypercoagulation like Mthfr and Factor V leiden, and test all your IgG subclasses 1-4, and CD 57 and C3a and C4a and CBS mutations and HPU/KPU and mold testing since so many of us have issues with mold. ECP or eoisonophil cationic protein seems to suggest to docs that you have babesia. Also transfer growth factor b-1 and Beta Strep. High CD 57 counts may be associated with Beta Strep. Heavy metals have a part in this and we are low in Secosteroid D or vitamin D and some are low in Potassium and others iron. Many are deficient in all amino acids. Our hormones are a mess and the whole HPA Hypothalmic pituitary axis is the problem. We can have probs with our adrenals and thryoid…we do not convert T4 to T3 and in my case I have high reverse T3 or rT3. We are quite low in testosterone as well. Check out every hormone in your body, amino acids and vitamins and minerals. There are over 100 viruses we can get from a tick and also many parasites. The labs that insurance covers can’t find a parasite when we can see it under the microscope. Quest at Nichols Institute in Valencia California can culture samples and might even be able to distinguish Brucella suis from melitensis or arbortus. We also need an MRI of our brain with and without contrast. Many lymies are showing up with pituitary adenomas and pheomchromocytomas. Make sure that you do not have these. I have spent years trying to figure out what is in us and so far this is what I have seen. Unfortunately when your physician may take years to order all the necessary tests. Make sure you get tested sooner rather than later. One more thing …..you may get tested for Brucella today and 2 years from now may show up IgM positive. The immune system is overwhelmed with all these pathogens
Dolores Claesson


About Jake Nichols

Jake is a work in progress.

2 Comments

  1. Lucy

    November 22, 2013 at 10:15 pm

    Amazing article…one of the best I’ve ever read…it covered so much, but was easy to read. Thanks for spreading the word.

  2. BettyG, Iowa

    November 24, 2013 at 10:50 pm

    Jake,
    Outstanding, detailed article above; best |’ve read in years! Well done.

    Dolores, great info on testings, etc.

    bettyg, iowa activist
    44 yrs. chronic lyme
    35 yrs. MISDIAGNOSED by 40-50 drs.

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