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Lyme Disease: A Hard Road to Diagnosis and Recovery

 

When it comes to diseases spread by insects, all the headlines these days focus on the mosquito borne Zika virus. But for decades, Americans have struggled with another vector borne illness that can cause many years of pain and suffering, even death.

Like Zika, Lyme disease seemed to come out of nowhere. Although it was first described by a dermatologist in the Midwest in the early 1970s, a cluster of cases that emerged in and around Lyme, Connecticut, a few years later garnered nationwide attention. Lyme disease has now been documented in nearly every state.

The ELISA test is the first screening, and it misses two thirds of the people that have Lyme.

Today, the Centers for Disease Control (CDC) estimates that 300,000 people are diagnosed with Lyme each year in the United States, more than six times the number of annual diagnoses of HIV/AIDS.

Lyme is primarily transmitted by a tick bite, but the mechanism behind the disease is a bacterium called Borrelia burgdorferi. Under the microscope, this organism looks like a long, thin, vigorously wiggling corkscrew. Such curly fry-shaped critters are known to microbiologists as spirochetes. Spirochetes are also the driving force behind syphilis.

(Kyle Besler/Shutterstock)

Don’t get tick bites, and don’t have sex with someone who has Lyme. It’s also sexually transmitted just like syphilis is. It’s also transferred by other biting insects. People have told me they’ve developed [bulls eye] rashes from mosquitos, horseflies, and sand fleas. (Kyle Besler/Shutterstock)

For those infected with this bacteria, Lyme disease can feel like a really bad flu, with symptoms that include headache, facial paralysis, joint pain, fatigue, super sensitivity to light and noise, and depression. If left untreated, spirochetes worm their way deeper into the body, causing brain and spinal cord inflammation, cognitive dysfunction, hepatitis, and heart palpitations. Symptoms can become severe, even crippling, and are often mistaken for other diseases. It can take years before patients receive proper treatment.

If you just read official reports, Lyme doesn’t seem like much to worry about. If a patient presents a bullseye-shaped rash (a sign typical of a tick bite), doctors simply call for a Western blot test and ELISA (enzyme-linked immunosorbent assay) test to detect Lyme antibodies. Once Lyme is positively identified, treatment seems simple.

 

“Lyme disease can be treated successfully with a few weeks of antibiotics,” states a recent report from the CDC.

However, for many Lyme sufferers, the road to diagnosis and recovery is far from easy.

Dr. Ann Corson knows firsthand what a profound challenge Lyme can be. Corson was an emergency room physician who became an expert in tick-borne diseases after her son contracted Lyme in 2001.

Today, Corson specializes in treating the tough Lyme cases other doctors aren’t able to resolve. She uses herbs, homeopathics, lifestyle changes, and other unconventional techniques. She is a member of the International Lyme and Associated Diseases Society (ILADS), a group that is often at odds with the Infectious Disease Society of America (IDSA).

Epoch Times talked to Corson about her experience with treating Lyme disease, and why the standard of care fails so many patients. Answers are edited for clarity and brevity.

Dr. Ann Corson

Epoch Times: How did you get involved treating Lyme disease?

Dr. Ann Corson: My son was dying and no one could tell me why. I couldn’t figure it out. I took him to a lot of other doctors and they tried to give all these kinds of medicines which were actually poisonous, or they would tell me that it was all in his head.

I remember my son had had a deer tick bite. He came to me and I took it off, but he never had a rash. He had no symptoms as first, but then he became insidiously sick. I thought about Lyme disease, but I had done the ELISA test three times and it was negative.

Then I went to see a lecture by Dr. Joseph Burrascano. He is the first doctor to really figure this whole thing out. I learned more in that lecture than in the prior 10 years of my medical career. He opened a whole new door for me about tick borne diseases.

I was curious if he would let people observe what he was doing, and within a few weeks I was precepting in his office.

I learned a tremendous amount from him, came home, and two weeks later opened my own practice treating tick borne diseases. By April 2004 I was invited to do my first lecture about pediatric Lyme disease. I hit the ground running and never looked back. I think I’ve given up to 65 lectures: to the medical community, community organizations, the Pennsylvania Department of Conservation and Natural Resources, and the Pennsylvania Health and Human Services Committee.

My son’s story became very well known in the Lyme community. We were a beacon of light for my patients, showing them that they can get better, and move forward in life.

My practice has been very busy. I treat people from all over the world.

Epoch Times: Why is there so much controversy over treatment and diagnosis?

Dr. Corson: Back in the 1970s and 1980s, all of the academicians were saying the same thing Dr. Burrascano was saying: that patients needed long term treatment, and that it wasn’t easily treated with just three weeks of antibiotics. But sometime after the Dearborn Conference in 1996 that established the ELISA and Lyme Western blot testing criteria, all of a sudden they did an about face and turned against the clinicians. They started saying Lyme was easy to treat and easy to diagnose, and that if you don’t have a positive ELISA you don’t have Lyme. But the literature has shown the ELISA misses two thirds of the people that actually have Lyme.

Borrelia (Juan Gaertner/Shutterstock)

At Stony Brook in New York, there is a neurologist named Patricia Coyle who had a patient who kept coming back with recurrent Lyme in the nervous system: neuroborreliosis. Despite repeated courses of oral and IV antibiotics over five years, the patient continued to relapse.  Dr. Coyle did a spinal tap on this fellow 13 times, poor guy, and nearly every single time she found evidence of Borrelia in his spinal fluid but only twice did she find antibodies against the organism. Why would the neurology people say you have to have antibodies against Lyme in order to prove neuroborreliosis when she proved that this wasn’t the case?

In another example, there was a textbook for infectious diseases of the infant and newborn where a doctor by the name of Tessa Gardner wrote a whole chapter on congenital Lyme disease. Because Lyme is like syphilis—it goes from mother to baby. Gardner wrote a whole chapter about the passage of Lyme to the baby in 2001. When the next edition of the book came out, they removed her chapter.

When the Lyme disease community had a committee meeting with the U.S. Health and Human Services, we presented I don’t remember how many hundreds of documents from the peer reviewed medical literature that support our position.

It’s just a small number of people in control who are trying to spread their lies and rhetoric, and they’ve successfully done that. Lyme doctors in many states are actually persecuted by medical boards. Burrascano was raked over the coals in New York, as well as several other doctors in other states.

Epoch Times: Why would officials want to make people believe Lyme is so easy to treat and diagnose?

Dr. Corson: It comes down to money. Insurance companies don’t want to pay for long term antibiotic treatment. Workers compensation doesn’t want to pay for the electric linemen who get Lyme disease walking near the woods.

The CDC misleads people. It is very difficult to kill this organism. It has a life cycle of about four weeks, and it’s very fastidious. It has multiple ways of evading the immune system which are just elegant. You can’t kill something that has a month lifecycle with three weeks of antibiotics. It doesn’t work. What the “powers that be” say about it is not correct.

Epoch Times: One story I read talked about a woman who had to see 10 doctors before she found out she had Lyme disease. What makes Lyme so hard to diagnose?

Dr. Corson: That’s very common, and it’s because the tests they use are very, very poor. The ELISA test is the first screening, and it misses two thirds of the people that have Lyme, and the antibody response is highly variable.

Every system in the body is affected by Lyme disease. It’s a multisystem illness. It can manifest differently in different people.

(Steven Ellingson/Shutterstock)

Lyme disease is not the infection of just one organism. If you find a tick, it should be removed properly. (Steven Ellingson/Shutterstock)

Lyme disease is not the infection of just one organism. Vector borne diseases come in groups. Ticks, mosquitoes, biting horseflies and a lot of other bloodsucking insects inject all kinds of garbage into the body. They give you not only Borrelia burgdorferi, they give you Babesia, Bartonella, and Ehrlichia [co-infections]. They give you all kinds of viruses, parasites, nematodes, you name it. People actually have a polymicrobial infectious disease.

Lyme damages immune system function. It disables important parts of the immune system so the body isn’t able to fight against a lot of other common chronic infections. That’s why people with chronic Lyme disease often have chronic Epstein Barr infection, chronic CMV infection, chronic herpes infection, and chronic shingles.

Epoch Times: It reminds me of AIDS—another disease which evades the immune system and makes you more susceptible to other infections.

Dr. Corson: It’s like AIDS, but it’s not a virus. It’s a complicated bacteria and it takes a lot longer than AIDS to kill you. It’s a long-term degenerative disease.

Whether we ever successfully eliminate it, I don’t know. Lyme probably stays with you your whole life, but if you eat well, exercise well, stay strong, and maintain a good strong immune system, you can keep it locked away and tamped down. It’s only when things go awry that it’s able to rear its ugly head and become active again. Patients need to know this.

So I don’t think there’s a cure, there’s only management.

Epoch Times: How bad can Lyme disease get? Can it really be fatal?

Dr. Corson: Lyme is associated with all neurodegenerative diseases: Alzheimer’s, MS, ALS, Parkinson’s.  People die from these every day. Lyme infects the heart and all organ systems and can lead to deaths that are attributed to other causes.  Lyme can cause miscarriages, stillbirths and SIDS. Many, many people have died of Lyme disease, even young people.  Many have also committed suicide to end their agony when unable to find help from the medical community.

Epoch Times: You single out mold as an important factor to target when people are trying to get their Lyme disease under control. What is it about mold that exacerbates this illness?

Dr. Corson: I’m not talking about mold that is growing on the trees in the forest. I’m talking about mold that grows inside water-damaged buildings.

A quarter of the population tends to develop chronic inflammatory immune responses with exposure to mold toxins. These are the same group of people genetically who are more susceptible to become chronically ill with Lyme. It’s a double whammy.

You need to be treated until you have no more symptoms. Period.

The problem with a lot of doctors is that they don’t look at all the things that create chronic illness. If a patient is living in mold, where they are breathing in these toxins and particulates all day and night, if their work, home, or school is moldy, we’re never going to be able to reduce the inflammation and calm the firestorm in the immune system to get it to help us kill the Lyme. You need to remove the patient from the moldy environment. You need to remove the mold toxins from their body, you need to reduce the inflammation, and then you can go after the bugs.

What I do is really complicated because of the type of patients I see—the sickest of the sickest—but for the garden variety Lyme patient, as long as they’re treated adequately and for long enough, they do okay. You need to be treated until you have no more symptoms. Period. You need to be treated for about two months until you’ve had no more symptoms.  If you get a cold or a flu, have a surgery, or an emotional stress and Lyme symptoms come back, then you need to be treated again.

Epoch Times: Tell me a bit about your protocol. How did you come up with it, and what got you interested in natural medicines for treating Lyme disease?

Dr. Corson: I use all the tools that are available to me, which are allopathic medicines, herbs, homeopathics, and nutraceuticals. I use everything, and try to use what works best for each individual patient.

I got into this when people’s bodies started rebelling after being on antibiotics after three or four years. Their guts were crying uncle because they were still sick. I had a patient ask me about some homeopathic products that she really liked. So I investigated that company, found the importer, and a lot of educational materials.

Then I learned about German Biological Medicine, which is really not that well known outside the naturopathic and chiropractic communities, and some of the integrative doctors in Europe. It just resonated with me because it made so much sense. I realized that this was a better, safer, and more logical way of treating people. Because you don’t just chase surface symptoms, you are trying to go to the root cause and untie that knot down deep. Then the surface fixes itself.

I tell my patients, we aren’t just going in to battle. We’re not just trying to kill things, which is what an antibiotic will do. I want to pick the battle ground myself so that I have the advantage. I want to choose which soldiers I send into the battle. And after the battle I have to clean up all the debris, carry away the dead bodies, chop the debris into pieces that can be carried away, wash the battlefield down, get rid of all the gunk, then allow it to grow green grass and wildflowers again.

That’s the analogy I use to explain to patients what it is that I do. I came to this by trial and error, using my years of practice experience and clinical judgment.

My protocols are very individualized for each patient. I do a detailed review of their symptoms, a physical exam, and then I do my assessment, and I think about multiple factors that can influence a patient: different kinds of toxins, different kinds of infections, different kinds of allergies and inflammatory dysfunction, structural problems (which I may need to refer them out for), and environmental problems. I also look to see if they have any metabolic derangements. Do they have genetic set points that make it difficult to get rid of toxins?

For example, a lot of people have very sticky blood because of the inflammation and infection, and the vast majority of mainstream medicine doesn’t recognize that. They don’t recognize this until someone has a blood clot, pulmonary embolism, stroke, or a heart attack. A lot of this can be relieved by giving people enzymes to dissolve away that excess stickiness. It’s a huge part of what I do.

Of course, you also have deal with the emotional and spiritual stuff. People have to understand that they can’t blame the rest of the world for their problems. They need to start looking at themselves, and realize they can only improve themselves. They can’t control other people. They are never going to get well if they continue to blame the world for their misfortunes. I do that kind of coaching as well.

Epoch Times: It sounds like this is a treatment you have to engage in at every level.

Dr. Corson: Yes, I’m engaging from the microscopic, chemical level all the way up into the spiritual level. That’s what I think good doctors should do.

Epoch Times: How can we prevent Lyme?

Dr. Corson: Don’t get tick bites, and don’t have sex with someone who has Lyme. It’s also sexually transmitted just like syphilis is. It’s also transferred by other biting insects. People have told me they’ve developed [bulls eye] rashes from mosquitos, horseflies, and sand fleas.

If you find a tick, it should be removed properly. You’ve got to be careful not to squeeze the contents of the tick back into you as you remove it. Then you should clean the area, contact your doctor, and look for signs and symptoms.

The problem is a lot of people don’t develop signs and symptoms right away. And they also develop signs and symptoms they don’t realize are related to Lyme. A little kid gets a tick bite, and a couple months later he has learning problems in school, anxiety at night, or behavioral problems. They don’t ever associate that with Lyme disease, and they end up taking him to a psychiatrist and putting him on toxic medicine when he actually has an infection in his brain.

A lot of this is about education and understanding that there are many symptoms of it. Lyme is one of the most important things that needs to be ruled out when anybody has new and unexplained symptoms. It’s in the differential diagnosis of just about anything.

Epoch Times: If someone suspects they have Lyme disease, what do you recommend they should do?

Dr. Corson: They should find a doctor who is willing to listen to them, and willing to do testing at labs that are skilled in doing the testing. If they just use the regular LabCorp or Quest ELISA tests, you’re only going to get a one in three chance of getting a positive test if you have Lyme.

Go to a doctor who is willing to treat you empirically based on your clinical symptoms, which is what the CDC says anyway: this is a clinical disease, not a laboratory based disease.

If you get better with treatment, your doctor should continue to treat you for about two months after you have no more symptoms.

You have to educate your doctor and play a little bit of hard ball with them, and say, “If you missed the Lyme disease in me and I go on to develop all kinds of chronic problems because you didn’t treat me appropriately, I’m sure you will not want to be sued for malpractice.”

You also need to get your head out of the sand and read the literature about this yourself.

SOURCE: theepochtimes.com

Ticks Now Carry A Virus More Deadly Than Lyme Disease – Here’s What You Need To Know! Term life

quick-moving and potentially fatal virus has been found in the U.S. in the Northeast and Great Lakes area.

Carried and transferred to people and pets by ticks, the Powassan virus can infect the central nervous system, causing similar symptoms to Lyme disease, but more severe and without any cure.

Once bitten by an infected tick, it only takes a matter of hours before symptoms begin to occur. The patients infected are likely to become susceptible to neurological damage due to inflammation of the brain, which can lead to both encephalitis and meningitis.

Currently, approximately ten percent of cases have led to death, with only 50 people affected in the U.S. each year (compared to the roughly 20,000 people who are affected by Lyme disease).

Although contracting the disease is quite rare, because of the possible fatality, doctors are urging people to do everything they can to prevent being infected. For people who work outdoors or camp in any of the affected areas, the chance of becoming infected is much higher.

Here are the main guidelines to follow to protect your family:

  • Avoid wooded and bushy areas with high grass.
  • Complete a full body check on yourself, children, and pets when spending time outdoors.
  • Carry and use bug spray.

Please SHARE this video to help spread the word.

MS is Actually Lyme Disease- Drug rehab center

The world must be a very scary place for a conspiracy theorist. In their world there is a vast sinister conspiracy that can control entire industries and professions, that supersede governments, and have almost limitless power.  In the mind of a conspiracy theorist the very people who are supposed to help and protect us are instead villains exploiting the public in the most heinous way for their own profit – and not just some individuals, but entire professions.

As experienced as I am examining conspiracy theories I always experience an uncomfortable cognitive dissonance when reading a new conspiracy theory – how can someone actually believe this stuff? Their brain must operate under a different set of algorithms from my own.

Recently I was sent a link to this website claiming, without a hint of self-doubt, that there has been a 100 year conspiracy to lie to the world about multiple sclerosis (MS). Scientists and doctors, they assert, know that MS (and many other neurological diseases, like ALS, Parkinson’s disease, and Alzheimer’s disease) is really caused by a Borrelia infection of the brain – Lyme disease.

The story the author has constructed is a simplistic cardboard caricature with the usual villains and motives. There isn’t even any imagination in this one. Because the website is monetized I always have to suspect that the author is not even sincere – they are just packaging a standard conspiracy theory for their intended audience, in whom they have utter contempt. I have no idea if this is the case, we just cannot assume that those selling conspiracy theories like this always believe their own nonsense.

In any case – what we have here is boringly predictable: Big Pharma wants to maintain their billions in profits from symptom management of disease X so they suppress knowledge of the real cause and cure of disease X and bribe doctors and researchers with funding and kickbacks to toe the corporate line and keep it all hush hush. Yawn. You can substitute any chronic illness for disease X and monetize your own website.

I am always stunned by a couple of things about such claims. First (assuming sincerity) is the utter moral and intellectual arrogance of the conspiracy theorist. They have to believe that they are better able to understand and interpret the scientific research than legions of experts in multiple related fields. Either that or that the entire scientific community is corrupt to the core.  In either case they believe their powers of perception are so keen they can see the conspiracy that others do not. Further, they casually slander entire professions with the most vile of accusations while maintaining their own moral superiority.

It’s a very black and white world with bright lines of demarcation between right and wrong and the conspiracy theorist as the white-hatted crusader.

For the record, MS is not caused by Lyme disease. MS has existed for a much longer time – Borrelia burgdorferi arose in the 1970s and probably existed for longer than that before it broke into the human population. It is possible for MS patients to become infected with Lyme and this does tend to worsen the course of their disease, but it is not a cause of MS.

After Lyme was discovered it was investigated to see if it was the cause of known neurological diseases, including MS. This was almost 40 years ago and much less was known about MS and the extent of Lyme pathology at that time. The research showed, however:

Clinical, neuropathologic, laboratory and epidemiologic features indicate clearly that tertiary Lyme borreliosis of the CNS is a distinct entity and there is no etiologic association with multiple sclerosis.

Every line of medical evidence points to the conclusion that MS and CNS Lyme disease are different diseases.

Think about how prescient “Big Pharma” must be in order to engineer the conspiracy being claimed. They must have recognized very early on that this new discovery of Lyme disease was actually the cause of MS and started manipulating the world’s medical research to keep that from ever coming out. I wonder how they figured this out before the very researchers they are supposed to control? Once you start asking these questions the house of cards starts utterly collapses – unless, of course, you are a conspiracy theorist. If you are, you just broaden the conspiracy, involved more people and institutions, and give the conspirators more and more reach and power until they are secretly controlling the whole world.

One section of the conspiracy article caught my attention as an excellent example of how conspiracy theorists perceive sinister motives in benign places. They quote from a neuroradiology lecture on a Dutch website (the internet is excellent for data mining and cherry picking). They characterize the quote this way:

What we found is deeply worrying. The radiologists are instructed in ominous, derogatory language never to disagree with the “suspicion of MS”. So when the doctor says:  “I think it should be MS”, the radiologist should just shut up and agree, even if he disagrees and thinks it’s Lyme disease.

This is what the text actually says:

If a patient is clinically suspected of having MS and the MR-images support that diagnosis, then you should not consider the possibility of Lyme disease and neuro-SLE in the differential diagnosis, because they have such a low prevalence.

There must be other ways to impress your colleagues. These diagnoses are only worth mentioning if there are clinical findings that support these diagnoses.

Yes – very ominous and derogatory.  This is all, actually, standard fare. Radiologists are not clinicians. They are not in the business of making diagnoses, but in interpreting radiographic studies. Findings on MRI scan and other such studies are rarely specific enough to establish a diagnosis by themselves (although this is changing as MR technology progresses, but that’s another story). Radiology findings need to be put into clinical context, and making a diagnosis is often a collaboration between the radiologist and the clinician.

The MRI findings of MS, Lyme disease, small vessel disease, and various causes of brain inflammation can all look similar on MRI scan – white matter demyelination. So when this is seen on the MRI scan the radiologist will typically give the standard differential of white matter demyelination in the interpretation – “This can represent, in the proper clinical setting, multiple sclerosis, Lyme disease, small vessel ischemic disease, and other causes of demyelination.” I can’t tell you how many times I have read some variation of that in the impression of an MRI scan.

This can be a bit confusing to the inexperienced and scary to patients who increasingly get direct access to their lab results. The radiologists mention everything, and it’s the clinicians job to put it into context.

Further – while MS and Lyme look similar on MRI scans they are not identical. MS often has a distinct distribution of lesions. There are “classic” MS features on MRI scan, although they are not always present. Radiologists, however, tend to cast a broad net, naming everything and letting the treating physician sort it out.

What this lecturer is saying is that radiologists should not just throw in rare diseases in the differential diagnosis on their reading if there is no clinical reason to suspect such illnesses. This is a reasonable suggestion. This was on a Dutch website, so I suspect the lecturer is not practicing in New England. Here radiologists always mention Lyme disease in the differential.  There is nothing sinister or ominous about this recommendation – it simply refers to the relationship between radiological and clinical findings in diagnosing a patient, and the proper role of the radiologist.

I don’t expect a non-expert to understand these nuances, but that is the point. The conspiracy theorist is profoundly naive about how medicine actually operates, and enthusiastically fills the void of their ignorance with sinister assumptions.

While this is all standard grand conspiracy nonsense, such accusations always take on a different dimension when they apply to people you know personally. I do not treat or research MS, but I know many people who do, including colleagues with whom I work. The notion that they are involved in any kind of cover up like this is absurd. These are academics trying to understand the underlying immunological basis of MS, improve our treatments, and help their patients.

To casually slander them as this conspiracy theorist has is vile and reprehensible. Further they are encouraging patients to distrust their doctors and the medical profession, and to forgo effective treatment for a conspiracy fantasy.

Source

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Avril Lavigne: ‘I’m Doing a Lot Better’ After Lyme Disease Treatment- Term life

Singer Avril Lavigne said she’s seeing progress in her treatment for Lyme disease, which struck her last year while she was on tour.

Her treatment regimen has included multiple antibiotics and ample rest.

“I’m about halfway through my treatment,” the Canadian singer said in an interview with ABC News’ Jesse Palmer. “I’m doing a lot better. Seeing a lot of progress. … I’m just really grateful to know that, like, I will make [a] 100 percent recovery.”

Lavigne, 30, said trying to get a diagnosis was the worst time of her life.

Avril Lavigne ‘Doing Well’ Amidst Lyme Disease Fight
“I literally became bedridden last October,” the “Complicated” singer said, adding that she saw multiple specialists who failed to get to the root of the problem. “They would pull up their computer and be like, ‘Chronic fatigue syndrome.’ Or, ‘Why don’t you try to get out of bed, Avril, and just go play the piano?’ It’s like, ‘Are you depressed?’”

Lavigne said she would wake up with night sweats and felt as though she had the flu.

“This went on and off for a month,” she said. “And I saw my doctor right away, got blood tests, got swabbed, and they didn’t really know what was wrong with me.”

It wasn’t until two months into the symptoms that she said she suspected Lyme disease.

“I started going to other doctors and, like, specifically telling them and asking, like, ‘I have Lyme disease. I know I do. Can you check me?’” she said. “Then I finally figured out, ‘Find a Lyme specialist.'”

“And the thing is, when you’re a specialist, you also really know the disease inside and out and you can diagnose their symptoms,” Lavigne said.

After getting the diagnosis of Lyme disease, which Lavigne believes she got from a tick bite last spring, the singer was bedridden for five months in her Ontario home.

Lavigne, who is married to Nickelback frontman Chad Kroeger, said her family and fans have helped her through her ordeal.

Many fans, she said, made videos and sent her letters and posters and other items to show their support.

“I sat there in my bed and I watched the videos and, like, did exactly what I’m doing now. I cried through the whole thing,” she said, laughing. “Honestly, I felt very, very loved. And it sounds silly saying it, but I really truly did feel my fans through the process.”

She took the opportunity to share encouragement to others with Lyme disease.

“There is hope. Lyme disease does exist. And you can get better,” she said.

She called this period her “second shot at life,” adding: “I really just want to go out there and truly do what I love. So I’m so excited for life after this.”

Lavigne is set to perform her song, “Fly,” on July 25 at the opening ceremonies of the 2015 Special Olympics World Games next month in Los Angeles.

Source

Jill-family

A Mother and 2 Children Make Their Long Journey Back to Health- Term life

Jill Justiss and two of her children have been making their way back from years of devastating chronic illness through hard work, personal research and dogged perseverance.

They were the last family you would expect something like this to happen to. She and her husband Mike Stanley live with their three children Jake, Carter and Aaryn in Katy, a suburb of Houston, Texas.

At first glance, they would have seemed like a normal American family, two blonde young people and their three fair-haired children.

Jill had been living the normal life of many young mothers of two small children. At 31 years of age, she was very active and healthy. She hit the gym five or six days a week and would spend hours in the cycling room.

All that changed in 2002.

Instead of moving energetically through her day, Jill now found herself crawling up the stairs.

Jill’s Nightmare Begins

Jill and daughter Aaryn
Jill and daughter Aaryn

“I felt as if all the energy had drained out of every muscle in my body. It was so extreme I was unable to hold my arm up long enough to blow-dry my hair, standing in the shower was painful and it felt like running a marathon to get through the grocery store,” said Jill.

Several doctors put Jill through dozens of blood tests. They asked her about her husband, her children, and whether she had help at home, and gave her a prescription for antidepressants.

Jill took them for a few months but she didn’t like how they made her feel, and they did nothing for her pain and intense muscle fatigue. She stopped taking them.

After about six months, Jill’s energy began to return, but things didn’t go back to normal. She was having shorter relapses of the muscle fatigue. A relapse could last for a few days, or up to several weeks.

When she’d have a setback she’d go to see her doctor. But these visits brought no relief and left her with an increasing sense of humiliation as the doctor continued to misdiagnose her and offered her only antidepressants.

She eventually had a relapse from which she did not recover.

“My symptoms continued to multiply until I was not only having pain in my joints, muscle fatigue and inflamed lymph nodes, but also twitching muscles, flu-like symptoms, burning skin, rashes, blurry vision, dizziness, vomiting, chemical sensitivity, chest pains, migraines, arthritis, numbness and pain and weakness in the back of my neck so severe that I had to support it with a pillow most of the time,” Jill said.

CFS, EBV and Mycoplasma Bacteria

Jill in hat and scarf
Jill in hat and scarf

A rheumatologist later helped bring her pain under control, but he could not uncover the cause for her symptoms. After a year, he told Jill he couldn’t do any more for her than refer her to a specialist in chronic illnesses, including chronic fatigue syndrome.

Jill went to this specialist, who sent her for her first MRI, meant to rule out multiple sclerosis.

She was tested for several conditions, including Lyme disease. The test for Lyme came back negative but she discovered that she was positive for Epstein–Barr virus and a mycoplasma bacteria.

Her doctor told Jill that her symptoms and test results could indicate chronic fatigue syndrome. She put Jill on pain medication, glutathione injections, and antibiotics for the mycoplasma.

“I was thrilled to finally have a diagnosis but soon realized that this carried with it a stigma and there was little support from family and friends,” Jill said. “I think CFS is difficult for people to understand. They hear the words chronic fatigue syndrome and think, ‘I am tired too.’ But it is so much more than that.”

The routine that followed was miserable and taxing. Jill saw the doctor every three months for blood work. She was tested with a western blot for Lyme disease, but her results were always negative. Yet Jill was bothered by the fact that though she was taking antibiotics the numbers for her mycoplasma didn’t get any better, and in fact they got worse.

Having some improvement while on the antibiotics made her wonder about the possibility of Lyme disease, and whether an undiagnosed infection was also being inadvertently treated.

Jill’s Sister Jennifer Gets Sick

Jill’s identical twin Jennifer Justiss lived in Missouri City, another Houston suburb. She had started experiencing health problems that were similar to Jill’s. Jill encouraged her to see her specialist.

When Jennifer went in, the doctor ordered blood work which included a western blot test for Lyme disease. Jennifer’s results were positive for Lyme. This also convinced Jill that what she was dealing with was also Lyme, and that her negative test results had all been false negatives.

“What were the odds of my identical twin sister and I having the same symptoms, but a different disease? I thought they were slim,” Jill said.

Lyme Disease and Other Tick-borne Infections

Nine years after Jill’s first symptoms had appeared, she asked for a test from a private lab that specializes in tests for Lyme disease. Her results were positive.

She began seeing a specialist in tick-borne diseases whose office was a four-hour drive away. She was diagnosed with two other tick-borne infections.

Jill estimates that a year of treatment brought approximately 80 percent improvement, but she suspects that she may never be completely 100 percent cured because she went without proper treatment for such a long time.

Jill’s Son Jake Gets Sick

Jake, Mike, Aaryn, Carter Stanley
Jake, Mike, Aaryn and Carter Stanley

At age five, Jill’s first-born son Jake’s behavior had changed dramatically overnight. He began to have angry meltdowns at school regularly. He had terrible difficulty adapting to changes in his life. He’d gone from being a boy who was generally happy to one was very depressed.

Jake’s teachers suggested that Jill and Mike take him to Texas Children’s Hospital for evaluation, where he was diagnosed with Asperger’s syndrome, an autism spectrum disorder.

“This was the beginning of the most difficult years of our life,” Jill said. “Although we did everything we could to help him through social skills, behavioral therapy, special education and medication, it seemed he only got worse.”

OCD, ADHD and Tourette’s Syndrome

Jake was also diagnosed with obsessive-compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD).

When he was 10 years old, he experienced another dramatic change — once again overnight.

First he had what seemed like some kind of seizure, then tics began to appear. He started to stutter, his face began to twitch and he had arm tics that were quite noticeable. Holding a spoon, writing, or playing his games became difficult for the first time.

Jill and Mike took Jake to his psychiatrist again, where he was diagnosed as having Tourette’s syndrome, and placed on psychiatric medication. They were told that he would have to be on this medication for the rest of his life.

Jill was not prepared to take this as the final word.

Jill Begins Her Own Research

Jill moving on up
Jill moving on up
 

“I never accepted this conclusion or my diagnosis of CFS,” Jill said. “I read everything I could find.”

In Jill’s ongoing research of CFS, she found something written by Richard A. Van Konynenburg, Ph.D. on CFS and glutathione depletion. Van Konynenburg had uncovered what he said were similarities in the biochemistry of people with autism and people with CFS.

Jill felt renewed hope for her son.

She networked online, in forums and on Facebook, and accumulated information from other mothers that might be helpful. She discovered a doctor in Port Aransas who was having success in treating children with symptoms similar to her son’s.

PANDAS and Sydenham’s Chorea

Jake can finally enjoy gluten
Jake Stanley is finally able to enjoy gluten
 

The doctor diagnosed Jake with pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection (PANDAS). He thought that Jake’s tics might have resulted from a case of Sydenham’s chorea when he was 10 years old.

Both PANDAS and Sydenham’s chorea are thought to be neurologic autoimmune diseases.

According to Susan Swedo, a researcher from the National Institute of Mental Health, “PANDAS can be thought of as ‘rheumatic fever’ of the brain, and just as Sydenham’s chorea gives you abnormal movements, PANDAS gives you abnormal thoughts and behaviors.”

Jake has been treated for PANDAS for the past five years, which has necessitated traveling for three and a half hours to the doctor, every two to three months.

It has been grueling, but it has paid off big-time. Jill said that Jake’s doctors told her he is no longer diagnosed with ADHD, Asperger’s syndrome, OCD and Tourette’s syndrome.

He is in mainstream school. He needs no medications or other additional help, and is in the process of planning for college.

Jill’s Daughter Aaryn Gets Sick

Aaryn in better timesAaryn in better times
 

When Aaryn was three years old, she became quite ill after being given a flu mist.

Symptoms of OCD appeared overnight. She no longer wanted to eat and had gastrointestinal difficulties. Her fatigue was such that Jill had to carry her around much of the time.

Her doctor diagnosed Aaryn as having mononucleosis and fifth disease (erythema infectiosum). Fifth disease is a viral infection resembling rubella and scarlet fever. Its odd name comes from the fact that it was fifth on the list of childhood rashes.

Aaryn’s fatigue lasted for about five months, but while that improved, the OCD and GI issues did not and intense anxiety began to emerge.

When Aarayn was about six years old, Jill took her to Jake’s doctor where she was also diagnosed with PANDAS. Over these past four years, treatment has caused Aaryn’s symptoms to improve greatly. A full recovery is hoped for and expected.

Being Sick with Two Sick Children

Jake and AarynJake and Aaryn
 

Before Jill became ill, she says she was always on the go. Her house was spotless and she made dinner every night for her family.

But when she became sick, all that stopped. With only a small amount of energy, Jill had to prioritize what was most important, and had to let everything else go.

She spent most of her worst days in bed to conserve enough energy for her kids when they came home from school. She sat in a chair and helped them with schoolwork, and dinner was as quick and simple as she could manage.

Jill had to learn to ask for help from her husband Mike and her children. She said that Mike was always there for her, taking over when she needed him to do so.

But learning to ask for help wasn’t the only hard lesson.

“One of the most difficult things I have had to accept is that we will never be like other families. We have missed out on a lot due to illness,” Jill said. “Instead of going on vacations every year and having fun experiences together, we were always going to doctors and dealing with the challenges of new medications.”

Carter Stanley

Carter Stanley

Life, for years, was filled with one crisis after another. Her sick son, Jake, looks back on unpleasant memories of misery at school, as Jill tried to convince the school that he was doing the best he could.

Jill’s healthy son, Carter, missed out on so much, and was confused by the chaos of their lives from all the illness. Jill said that she felt horrible guilt over this as she was helpless to change it for Carter.

“As a family we were robbed of those ‘Enjoy them while they’re young, it goes by so fast’ moments. Forever replaced by memories of pain and turmoil. Chronic illness can be very isolating, especially one that is very often misunderstood,” Jill said.

Aaryn with flowersAaryn with flowers

It has been 14 years since their bleak odyssey began for this family. Jill, Jake and Aaryn have dealt with multiple severe health conditions for too many years. Their personal research, willingness to travel great distances for care, and their stubborn tenacity have led them all to better health.

There is a greater sense of normalcy to their lives, which has been hard-won. Jill and her family stubbornly persevered through a time marked by low stamina, debilitating symptoms and frightening glimpses of a grim future.

They wanted something more, something better. The odds were stacked against them but they went for it anyway. More power to them all.

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red hair girl hungover wanting coffee and medication to help with her hungover in bed

LYME DISEASE – OUR FIGHT TO PAY IT FORWARD- Term life

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My family’s fight against Lyme disease is relatively new, but we learned quickly of the controversy surrounding Lyme Disease. Three months ago, my wife (Theresa) was bit by a tick in our backyard in Calgary, Alberta (Canada). At the time, we didn’t realize what we were dealing with. After a rapid decline in health, my wife was diagnosed with Lyme Disease by a University Research Lab in the United States.

That’s right, we live in Canada, but my wife’s diagnosis came from the United States.

Further, we only received that diagnosis because we independently sent her blood upon recommendation from a Canadian doctor. This is when the controversy became extremely apparent. Let me back up a bit…

On May 27th, Theresa was admitted to Hospital through Neurology to expedite testing for what seemed to be a Pituitary Tumor or perhaps something even worse. She had all the symptoms: persistent headache, dizziness, blurred vision, unexplainable collapses, and she was leaking breast milk, but not breastfeeding a baby or pregnant any time recently.  MRI showed nothing. No tumor of any kind. Next, they checked her brain fluid (CSF) through a lumbar puncture. Pressure was good and no viruses detected. During the testing period, the doctors began to build a case for what they called a New Daily Persistent Headache. Over the course of a week, she began experiencing extreme pain in her joints, and on Saturday June 6th she called and told me she could no longer feel her arms and legs, and her face was going numb. Thedoctors put her in a seizure monitoring room with observation goggles over her eyes. They watched her have a stroke and immediately gave her another MRI – results were clean – still a New Daily Persistent Headache.

At this point, we were wrestling with the fact that our family may never be the same. Theresa was coming to grips with mortality while she lay in bed thinking she could die.


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Despite everything that was happening to her, Theresa had an unrelenting positive attitude. I had learned more about my wife in two weeks than I had in the previous ten years. I was not ready to lose her.  I took to the internet and read about rare diseases for nearly two days straight. I chased down every idea and lead that someone would throw my way.

Then I started reading about Lyme disease.

There was a case that matched Theresa’s symptoms right down to the breast milk – it was a stretch, but then something else happened. Both my sister-in-laws emailed me a contact for someone with Lyme Disease within an 8 hour period. Whether it was coincidence or divine intervention – I couldn’t ignore it. I talked to Theresa about it and she recalled a bite she got while raking in April (I got sick to my stomach).

The next morning I went to the hospital and talked to every doctor who would listen to me about Lyme Disease, and I began to see a pattern. The student told me she was taught that Lyme Disease did not exist in Alberta. The resident said he would consider it, but his body language dismissed me. I went to the head Neurologist in the ward and explained to him that I thought it could be Lyme, and I’d like it to be considered – he didn’t say no. Progress! In fact, he called in specialist that practiced in the hospital. More divine intervention???

Two hours into the doctor’s rotation a resident neurologist was sitting at Theresa’s bedside walking her through her testing. I could see what was happening – he was building his case for a New Daily Persistent Headache diagnosis. Explaining how repeatedly increasing her pain medication was helping her get better.

Theresa was desperate, and she was reluctantly accepting.

I was not.

He was not explaining how a headache could cause all her symptoms; simply that he had applied enough narcotics for her to cope with the pain. I was getting infuriated.


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It was at this point, that our lives changed.

“The Specialist” walked into the room with dramatic flair, brushing back the curtain barriers and sitting down at the foot of the bed. Theresa told her story and explained her symptoms, he immediately started her on a thirty day anti-biotic treatment – just in case it was Lyme, as he suspected. Three days later, we sent Theresa’s blood work to New York.  Neurology ordered the provincial test, and requested a consultation from infectious diseases. They still did not believe it was Lyme.

We sent Theresa’s blood work on a Monday and her result came back Thursday. Two of three tests were positive for Lyme according to the United States Centre of Disease Control. Finally, we had something we could treat!

This was a bitter sweet moment for Theresa. She had heard enough to know that Lyme Disease would be no picnic, but at least it could be treated.

WAIT – this is where it gets interesting!!!

What do you mean you don’t believe us “Mr Infectious Disease Dr”? You want to test her for Strep Throat and HIV??? I have a positive test result for Lyme Disease in my hand? How much tax payer money do you want to waste?

The good news, was that it didn’t matter what the results were of any further testing. “The Specialist” had convinced Neurology to transfer care to him, and we were assured she would be treated. The provincial test still had not returned. Theresa was immediately started on IV Antibiotics. The next day her joint pain began to subside. The day after that, she walked to the bathroom on her own for the first time in a week. Two weeks later she walked out of the hospital on her own two feet. Over the two weeks on IV Antibiotics, she had been transitioned off most narcotics prescribed for her New Daily Persistent Headache and was on a Lyme Disease regime.

She sets small daily goals now, and is on a long journey back to her former self.


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So what ever happened with the provincial test?

Well it came back negative for Lyme Disease. The Canadian Standard test is a single test. They only run one test, and will not run the other tests unless the first comes back positive.  It also happens to be the most difficult test to attain a positive result on.  It was the same test Theresa was negative for in the US.

According to Canada, Theresa does not have Lyme Disease.

There is no surprise why there has never been a confirmed case of Lyme Disease contracted in Alberta. Our test system is backwards.

As Theresa continues to recover, I am trying to pay it forward. I realize how fortunate we are: to have self-diagnosed, to have received the consultation from “The Specialist”, and to have been able to afford the US Blood Test. Our Canadian Guidelines are a liability when it comes to Lyme Disease diagnosis. If not for relentless persistence, Theresa could be curled up on a bed in a drug induced coma hoping that someday her New Daily Persistent Headache would magically disappear.

My persistence is now focused on lobbying our government to understand the flaws in our system and support those in favor of making changes. I’ve started by introducing Alberta’s new Health Minister, the Honorable Sarah Hoffman, to “The Specialist”.  Ms Hoffman needs to understand how improvements can be made to our failing system. The Health Minister’s Office has acknowledged my letter, and it has been “actioned for response”.  I’m still optimistic that the response will be a call to “The Specialist” for a consultation, as requested.  With (or without) Ms Hoffman’s support, I will persist, and raise further awareness on this topic.  Help spread the word. Share this post.

Lyme Disease is not uncommon in Canada.  The only thing uncommon about Lyme disease in Canada is a positive diagnosis.

Written by John Stadnyk.

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There’s An Effective Vaccine For Lyme Disease -But You Can’t Get It,Thanks To Anti-Vaxxers- Drug rehab oregon

It’s that time of year again: days are growing longer, trees are blossoming, birds are tweeting, and the ticks are biting. Spring may bring about heightened moods, but in the U.S. it also marks the more unpleasant beginning of Lyme disease season. That’s because the nasty arthropods that transmit the disease are most active from May through August, conveniently when humans begin to frolic in the grass and bask in the long-awaited sunshine.

With around 30,000 cases reported each year to the Centers for Disease Control (CDC), Lyme disease has become the most common vector-borne disease in the United States. While that may not sound like a huge number, it’s estimated that the actual figure could be five-fold higher due to underreporting.

It’s transmitted to humans through bites from blacklegged ticks infected with the spiral-shaped bacterium Borrelia burgdorferi. While the disease is rarely fatal, if treatment is absent or delayed it can lead to arthritis, neurologic problems like meningitis or nerve inflammation, and sometimes even heart problems.

Although most patients will fully recover after a course of antibiotics, prevention—as with any disease—is always better than a cure. Such preventive strategies include reducing exposure to the vector, for example by wearing protective clothing, or vaccination. And there was actually a decent, FDA-licensed vaccine available for Lyme disease, but just four years following its approval for use in the human population it was withdrawn by its manufacturers.

Why? In part, due to a shitstorm kicked up by the anti-vaccination movement.

Developed in the ‘90s by pharmaceutical company SmithKline Beecham (now GlaxoSmithKline), LYMErix was the only licensed Lyme disease vaccine on the market. The vaccine was based on one of the surface proteins expressed by the disease-causing bacterium, which was used to evoke an immune response in the individual. Clinical trials involving more than 10,000 individuals found that LYMErix reduced new infections in adults by close to 80% and conferred protection to 100% of children. Additionally, no serious side-effects were observed.

Despite these positive results, the vaccine was withdrawn from the U.S. market in 2002 due to a combination of factors. Although it was considered a cost-effective approach for Lyme disease, its high cost resulted in slow uptake in clinical settings and reluctance of insurance companies to cough up for it. This, combined with the emergence of a hypothesis that the vaccine sparked immune responses that resulted in arthritis, caused the vaccine’s popularity to plummet.

The idea that the vaccine could cause this “autoimmune arthritis” stemmed from a hypothesis, named the molecular mimicry hypothesis, which suggested that the protein used in the vaccine displayed similarity to a protein found in the human body, but was still different enough to be recognized as foreign by the immune system. This would mean that, alongside attacking the foreign bacterial protein, the immune system would also start targeting the normal human protein and thus lead to an autoimmune reaction.

Within just one year of the vaccine reaching the market, reports of adverse effects began popping up left, right and center, conveniently mostly about musculoskeletal pain or swelling as would be expected in patients suffering from arthritis. The media then sooncottoned on and began running sob stories on personal experiences that were guaranteed to draw in readers, fuel fear and spark public outcry.

This was enough to spur investigations and safety surveillance, both of which failed to find any evidence for either the molecular mimicry hypothesis nor any spikes in arthritis diagnoses. Yet with an increasing number of lawsuits filed against the manufacturers and its decreasing support among the public, encouraged by anti-vaccination groups, the vaccine was pulled from shelves.

It’s disappointing to see that an effective vaccine was withdrawn due to lawsuits and poor sales fueled by pressure from anti-vaccination groups and fear-mongering from the media, all the while the burden of Lyme disease has continued and even worsened. This highlights the need for better public education around important topics such as this, which seems to be an ongoing issue that is not going to be easy to tackle when battling against the blessing and curse that is the internet.

Read this next: Creationism Banned From Science Classes By Scottish Government

WILL DICKEY/The Times-Union--04/30/09--Kerry Clark, professor of epidemiology and environmental health at the University of North Florida, holds a lone star tick, a species suspected of carrying Lyme Disease Thursday, April 30, 2009 in Jacksonville, Florida. (The Florida Times-Union, Will Dickey)

The Fatal Truth About Lyme Disease- Term life

You have heard, and will hear, it time and time again: “Lyme disease is cured with a few weeks of antibiotics.” If this is the case, why are hundreds of thousands –if not more- suffering for years on end from the disease? According to the CDC, they are not, because chronic Lyme disease does not exist:

“Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme Disease Syndrome. [1]”

For people suffering from Chronic Lyme, this statement is infuriating because they feel they are being told they are crazy; and also because pain, fatigue, and joint/muscle aches are often the least of their worries. Much more serious health complications arise from Lyme, and it is important that the public is aware of these symptoms. When looking at the bigger picture, the infuriating part is just how dangerous this statement is. If left untreated, Lyme disease can and will be fatal. That is the sad and often ignored truth.

Furthermore, it is estimated that only one out of every ten cases of Lyme disease is actually reported and that numerous individuals are misdiagnosed. In 2010 alone, state health departments reported 22,561 confirmed cases of Lyme disease and 7,597 probable cases to the Centers for Disease Control and Prevention. The actual number is believed to be much higher than the yearly number of cases reported. One reason for this is due to the fact that reporting criteria varies from state to state; and most states take time to report only the minimum amount required. Still, the number of reported cases has increased 25-fold since national surveillance began in 1982 [4].

Of course it is three years later, but unfortunately 2010 is the most recent year researched. So if the number of reported Lyme cases was only continuing to increase at that time, and since there has been no evidence of a decrease in cases, it can only be assumed that the number of people with Lyme disease is appallingly higher at the present moment. There are so many angles to touch on this topic, so let’s start with the very basics because there are many, many people who do not so much as know what Lyme disease is, much less how you contract it.

 

What is Lyme disease?

  • According to ‘Wikipedia’, “Lyme disease, Lyme borreliosis is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia [2].”
  •  In lay terms, Lyme disease is an infection from a tick bite.
  • Eloquently put by ‘Tired of Lyme’, “the non-technical term is what can truly depict Lyme disease best.  It involves aspects ranging from every angle of the lives of those affected including physical, mental and social. [3]”

Initial Symptoms

  • Bulls-eye rash is a definite positive of Lyme disease. However, only 50% of people with Lyme disease recall having a bulls-eye rash. The rash can also appear in bruise form depending on a person’s pigmentation. For example, a bruise that is blue/black on the outside, with a lighter color circle in the middle is a clear indication of Lyme disease. If you get to the doctor while you still have the rash, you have a better shot of getting treated right away and not having to deal with Chronic Lyme disease. As I will discuss later, testing is not always accurate, so getting to the doctor when you notice a bulls-eye rash is imperative.
  • Fatigue
  • Flu-like symptoms
  • Muscle and joint aches/pain

The above symptoms describe the typical initial onset of Lyme disease. But what if you, or someone you know, miss the crucial time period in which those are the only symptoms? Unfortunately, there are over thirty other symptoms, each of which can mimic other diseases. This along with the fact that standard testing is only 30% percent accurate is why it is of the upmost importance for the public to be informed on, at the bare minimum, the basic truths behind Lyme disease.

Other Symptoms

  • Low grade fevers, “hot flashes” or chills
  • Night sweat
  • Sore throat
  • Swollen glands
  • Stiff neck
  • Migrating arthralgia’s, stiffness and frank arthritis
  • Myalgia
  • Chest pain and palpitations
  • Abdominal pain, nausea
  • Sleep disturbance
  • Poor concentration and memory loss
  • Irritability and mood swings
  • Depression
  • Back pain
  • Blurred vision and eye pain
  • Jaw pain
  • Testicular/pelvic pain
  • Tinnitus
  • Vertigo
  • Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)
  • Head aches
  • Lightheadedness
  • Dizziness
  • Mysterious migrating symptoms that seem to come and go

Testing

A few blood tests are available for Lyme disease, but none are 100% accurate. The standard test is called an ELISA test. Oddly enough though, the ELISA is not based on the specific Lyme bacteria strain that is most beneficial for diagnostic testing. Therefor, the ELISA has a mere 30% accuracy rate. A negative reading can be meaningless, because false negatives are more common than not. A false positive is basically unheard of, so if you are lucky enough to test positive in the early stages it is a clear indication that you have the infection and need to start treatment right away. I use the term “lucky” here not because you are lucky if you have Lyme, but because you are lucky if you have Lyme and test positive early on. For many, it takes one pain-staking year after another before they are so much as introduced to the idea that they may possibly have Lyme disease. Another available, yet less administered, Lyme test is the Western Blot. While this test is slightly more reliable than the ELISA test, it is still faulty.

Doctors should not rely on test results alone to make a Lyme diagnosis because to date, a reliable test for the diagnosis of Lyme disease ceases to exist. Lyme doctors make a diagnosis based on a patient’s symptoms, medical history, and exposure to ticks –although that last one is not required, since ticks know no boundaries. Contrary to the popular statement that ticks are prevalent only in certain areas, the truth is you can walk outside your own front door and get bit.

If it all possible, it is best to get to a Lyme literate doctor if you believe you may have Lyme disease. This too also proves to be a difficult task, as many do not publicize that they specialize in Lyme disease due to legal reasons. To receive a list of Lyme literate practitioners closest to you.

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