MIA, Let the Truth be Told
Experts in the medical and scientific community, as well as key legislators, have deemed Lyme disease an epidemic. Warning to all… Lyme is a national public health crisis. How much do you really know about Lyme disease?
The first step towards change is spreading awareness in a truthful way —
I am still fighting Lyme disease, in search of remission, and a little less MIA these days. I am wondering, am I being a bit vacuous by writing a series and a book with a brain disease? I guess I’m answering my own question, because it’s full force forward with what I believe needs to be said, so let the truth be told…
For years now I have been asked the question ‘are you okay’ at least a thousand times. This question generally leads to me utilizing my acting abilities and then sneaking away, or just answering the question I try to avoid, It’s Lyme disease. Giving the answer ‘it’s Lyme’, there always seems to be a sigh with a look of confusion, and then an interrogation — How did that happen? Where did that happen? When did that happen? Why did that happen? Then I will go into answer mode knowing a redirect of examination will soon follow, because nothing I can say will ever please the confused. And Lyme is confusing.
How did I contract Lyme disease? It is a difficult question to answer because I do not know myself. A lot of people just assume I was bitten by a tick in the forest because I spent a lot time in the woods. Before Lyme, the forest was a place I found peace and yes, I did spend a lot of time in the woods. I would hike, ride my mountain bike, camp, meditate and walk in the woods for hours. I cannot blame the forest, or a tick, because I never physically removed a tick from my body while being in the woods, and I did not have the typical Bullseye rash. I may have contracted Lyme from a tick while in the forest but I will never know for sure. What I do know is that before Lyme, I practically lived outdoors, playing sports, jogging in my suburban neighborhood, playing with my dog at the park, sitting in my backyard, socializing in a friend’s backyard, cheering on my son at sporting events, and sleeping in my bed. All places where you can “catch” Lyme. It is stereotyping the disease by saying it comes from a tick or spending too much time in the woods.
Lyme disease has received a new definition. It now refers to the disease being transferred by insects as opposed to just ticks. It is now known that mosquitoes, biting horseflies, spiders, dust mites, fleas, lice and other insects can all carry Lyme disease.
I can honestly say that I never knew much about Lyme disease until I was affected by it. I never knew that Lyme was so severe and life altering. Lyme has been a silent and downplayed disease but it is one of the most controversial diseases in the history of medicine. Despite being around for decades, Lyme has been a serious health concern since first being reported to CDC through the National Notifiable Diseases Surveillance System in 1982. The number of Lyme cases have significantly increased since then, but the CDC has finally admitted that they were under-reporting cases of Lyme disease. It is believed that there are half a million new cases of Lyme each year. This making Lyme disease twice as common as breast cancer, six times more common than HIV/AIDS, twenty times more common than hepatitis C, and thirty times more common than tuberculosis in the United States. According to the CDC, Lyme disease is the fastest growing vector-borne infectious disease in the United States, over taking Zika Virus and West Nile Virus. Four years ago I knew more about Zika, West Nile, HIV and AIDS than Lyme disease.
Lyme is a serious health concern and deserves a lot more public awareness —
I share in this story what I have gathered through my own experience with fighting Lyme and forming opinions through my own research. I am not a doctor or a scientist; I am a person who is suffering from a disease that is highly evolved and complex. I am a person who wants to spread Lyme disease awareness starting with how the disease was named and the actual discovery behind its name.
The town of Lyme, Connecticut played a major role in the Lyme disease history as it was here in 1970s that an outbreak of mysterious and debilitating illnesses took place affecting around 51 children. These children were diagnosed with juvenile rheumatoid arthritis. The parents of these children were confused and concerned so two of the mothers became patient advocates for all the children. They sought help and gained attention while doing so. This caused an investigation of the mysterious illness and led to a group of researchers describing the symptoms as a new disease. The group of researchers then named the disease Lyme.
Lyme was a newly named disease but had no solid explanation of its cause. Most of the children who were stricken with Lyme, recalled being bitten by a tick. A scientist by the name of Willy Burgdorfer took an interest. He had a meticulous method of dissecting ticks to study the diseases they spread. One day, Dr. Burgdorfer was analyzing ticks and stumbled across something unexpected. As he looked through his microscope, he spotted the microorganisms called spirochetes, a bacterium shaped like a corkscrew or snakelike organism. Was this spirochete bacterium the cause of Lyme? The ticks, suspected of being the cause of Lyme, were collected and sent to Dr. Burgdorfer. After examination, he hypothesized that the spirochetes residing in these ticks, were in fact, the cause of Lyme disease.
The medical community honored Dr. Burgdorfer’s discovery in 1982 naming the spirochete Borrelia burgdorferi in recognition of his discovery.
Borrelia burgdorferi is a bacterial species of the spirochete class responsible for Lyme disease. It is transmitted to humans through a bite from a tick or an insect and can affect any organ or system within the body, including the brain, nervous system, joints, and heart.
When a Borrelia spirochete enters its host it quickly moves throughout the bloodstream secreting enzymes, making copies of itself. The replicated copies head for places in the body where they can go undetected. An infection in the host body will occur from the spirochete bacterium and if not treated early, treatment can become a game to the organisms and difficult to treat for the host. The game begins by using their corkscrew shape to drill themselves into the hosts joints, tendons, muscles, bones and organs, creating a storm of pain.
If the spirochetes feel threatened (help, my host wants to eradicate me) they will morph into a cyst form within a second. While in a cyst form, they are dormant and immobile, and can remain undetected from the human immune system. While in the dormant and immobile state the host will start to feel better. If treatments are stopped, the spirochetes will no longer feel threatened and they will return to their games and destructive behaviors.
Borrelia burgdorferi can also have the added protection of a biofilm. It can hide inside a biofilm within its host, shielding itself from antibiotics and the immune system. Biofilms are groups of microorganisms sticking to each other in a slimy bed of goo. An example of a biofilm is dental plaque, a slimy buildup of bacteria that forms on the surfaces of teeth. (Hey spirochete buddies, lets jump into this pile of goo and hide out… ha-ha antibiotics, you will never find us here) —
Borrelia burgdorferi can also trick the immune system while under attack by shedding its cell wall and several proteins that are markers to the human immune system. The immune system is looking for a specific cell-wall protein that was once there but is now gone, so the immune system stops the attack. Borrelia burgdorferi is now in an L form and begins to merge together with other L forms. This mass of L forms will cause inflammation and painful symptoms that alert the immune system, now the immune system identifies what it believes to be a new form of bacteria and produces new antibodies for an other attack. This can take several weeks.
Lyme prevention is easier than a cure and it starts with an understanding —
A tick emerges from an egg; happy birthday, little tick, and then starts its life cycle feeding on different animals. The tick has three stages of its life: its larval, nymph, and adult stage. The tick most often becomes infected (if not already infected at birth) during its larval or nymph stage. The majority of small animals the larval or nymph tick will feed off of are the responsible reservoirs for infecting the tick. These small animals carry the bacteria causing Lyme disease (Borrelia burgdorferi), and also carry other bacteria, viruses and infectious diseases. Rodents, squirrels, rabbits, chipmunks, and migratory birds are top contenders of infecting ticks.
There is an 80 — 90% chance that ticks will become infected with Lyme disease (and other disease-causing agents) when they feed off of a rodent.
Ticks use their blood meal to grow, and once they transform into nymph ticks, they are able to transmit infections, thus causing whatever they feed off of next to become infected too.
Once the tick becomes an adult, it prefers to feed only on larger animals, with white-tailed deer being one of its favorite hosts. Unlike smaller animals, deer do not infect ticks with the bacterium that causes Lyme disease. Deer are the reproductive host for adult ticks. This does not clear the deer’s part from being a contributing factor of a Lyme outbreak. They are harboring infected ticks.
If you want to protect your loved ones and yourself keep the deer population at bay and avoid areas frequented by deer.
Another way to protect your loved ones and yourself is to eradicate the rodent population and/or remove other small animals that are disease carrying reservoirs.
Fleas and ticks stick to rodents, spreading disease when they come into contact with humans.
Like ticks and fleas, there are many other insects that spread Lyme and other disease-causing agents. Protecting yourself and loved ones can prevent a lifelong illness or even death from a single bite of an insect.
No bitting —
- It may be too hot — or just plan unrealistic — to cover yourself from head to toe, but that is the perfect insect protection, while adding DEET to clothing.
- DEET is the active ingredient in many popular tick and mosquito repellants. It is the most effective repellant, but also the most toxic. Below is a link to some natural recipes for tick and insect repellent. Wellness-mama is one of my favorite bloggers.
Every year as warmer weather approaches, I make several homemade products for summer including my homemade sunscreen and…wellnessmama.com
- There is a lot of research suggesting that turmeric oil works as well as DEET to repel mosquitos.
Tick talk —
Ticks are small crawling bugs (arachnids) in the spider family. There are roughly 850 species of ticks around the world, but only 90 of them are found in the United States. Many of them carry bacteria, viruses or other pathogens that cause disease in humans and/or animals; however, not all ticks carry Lyme, or other diseases.
Below are the most commonly found ticks in the USA.
- The Dog tick or Wood tick, is known to carry Rocky Mountain spotted fever, Tularemia, Powassan encephalitis, Bourbon virus, and several other diseases.
MINOT -- It is the season of the wood tick -- and another new dangerous virus carried by the creature has been been…www.google.com
•The Deer tick, Black-legged tick, and in some parts of the USA as the Bear tick, are all known to carry Lyme (the spirochete Borrelia burgdorferi), TBRF(the spirochete Borrelia miyamotoi), Babesiosis, Anaplasmosis, Powassan encephalitis, Bourbon virus, and several other diseases.
Opps, the CDC forgot to add a few other states.
Like forensic detectives, using a bank of frozen blood serum from the 1980s, tick researchers from both the west and…www.lymedisease.org
Thanks to eight years of advocacy work by the group LEAP, Arizona's health department website now provides factual…www.lymedisease.org
•The Lone Star tick or the Turkey tick can cause an allergy to meat and gelatin. It is known to carry STARI (the spirochete Borrelia lonestari — Lyme’s cousin), Tularemia, Ehrlichioses, Heartland virus, Bourbon virus, and several other diseases.
- The Gulf Coast tick is known to carry Rocky Mountain spotted fever, Ehrlichia, Rickettsia parkeri, and other diseases. This tick can cause a fatal form of tick paralysis.
I am showing the CDC maps for two reasons. One, it is important to know that these are the areas where the CDC has found ticks and diseases to be prevalent. Two, I will point out later that the CDC surveillance methods are, in my opinion, inaccurate. The maps may show certain areas of the country with tick disease carrying attributes, but that does not mean other areas of the country are risk-free.
On to more tick talk —
Nymphal ticks cause most cases of Lyme disease. Because nymphs are as small as poppy seeds and their bite is painless, people often don’t realize they have been bitten. Adult ticks can also infect humans, but are easier to spot and remove.
- It’s a good idea to ‘Tick check' yourself and loved ones, including your pets. Ticks are difficult to spot and some are smaller than a poppyseed. Put on reading glasses, or use a magnifying glass if you need help spotting a tiny tick.
How to properly remove a tick
Burning an attached tick with a match is not the proper way to remove a tick.
- Use fine-tipped tweezers to grasp the tick as close to the skin’s surface as possible.
- Pull upward with steady, even pressure. Don’t twist or jerk the tick; this can cause the mouth-parts to break off and remain in the skin. If this happens, remove the mouth-parts with tweezers.
- After removing the tick, thoroughly clean the bite area and your hands with rubbing alcohol, an iodine scrub, or soap and water.
- SAVE THE TICK. You can have the tick tested for Lyme and other co-infections through ‘tick check’.
Great service for peace of mind! Impressively easy to navigate the process of getting a tick examined. Online…www.tickcheck.com
If you go to the TickCheck website, the process is explained how to collect the tick and mail it to a location for testing. There are other tick tests available but I have found that some companies are only testing for Lyme Borrelia burgdorferi, I would personally want to be tested for other spirochete species and co-infections.
The “classic” telltale sign of Lyme —
A bull’s-eye rash which is called a Erythema migran, a skin infection that arises 1-10 days after a tick bite.
Not everyone who has Lyme will exhibit a bull’s-eye rash or any rash at all. Others may develop raised or oblong rashes. I did not have a rash, but if I had seen any of the rashes above or below, I would have gone to my doctor immediately.
DISCLAIMER: What I share is based on my own research and experience and is not intended to diagnose or treat anyone. This disclaimer provides that such medical information is merely information — not advice. All information is intended to motivate readers to make their own health decisions.
The initial stage of Lyme often causing flu-like symptoms and migratory pain but that is not all —
Symptoms can progress as days and weeks continue. All of the symptoms shown in the checklist below are symptomatic of Lyme, but each symptom could easily be diagnosed as something else. If a person has several of these ‘new and unexplained’ symptoms, then Lyme should be considered, not dismissed.
The great imitator —
A practicing MD who treats patients from around the world from his headquarters in New Jersey, states “We never had in the last 5 years a single MS patient, a single ALS patient, a single Parkinson’s patient, who did not test positive for Lyme, Borrelia Burgdorferi (quote from the film “Under Our Skin”). Lyme disease can masquerade as other conditions such as MS, ALS, Parkinson’s, Lupus, Fibromyalgia, Dementia, Rheumatoid arthritis, mental illnesses, etc. That means a lot of people are either never properly treated for Lyme, and/or they are taking a lot of dangerous drugs for conditions they do not have.
Ally Hilfiger, whose father Tommy Hilfiger committed her to a mental institution where her disease was discovered after years of suffering undiagnosed Lyme. Her testimony…
Time is of the essence doctor —
Lyme is not a disease to ponder a selfish thought, your patient is your priority. Lyme disease can become a lifelong illness if not diagnosed quickly. How many times must I repeat myself? There is a window of opportunity to treat the Lyme infection before it becomes a lifelong (late-stage chronic) disease. I believe that the medical community should clinically diagnose and treat Lyme disease with a sense of urgency. If they do not have the knowledge, they should be educated. If they do not have the authority, then the system needs to be fixed. A lot of doctors will not give a clinical diagnosis based on symptoms alone; they are forced into a codependency with diagnostic testing. The problem with relying on diagnostic testing for Lyme disease is that testing has a low rate of accuracy, especially during the vital time of needing a prompt diagnosis. The highly evolved species can hijack a person’s immune system within a matter minutes of its arrival and throw off diagnostic testing, causing a negative test result. Doctors need to become more clinically skilled and given the ability to clinically diagnose Lyme so that their patients can begin treatment immediately.
Doctors should never think about how diagnosing Lyme will affect them. They should only think of their patients well-being. Unfortunately, many doctors are having to pick a side between two arguing groups the IDSA and ILADS. This has been going on for over a decade. Sadly, many of the arguments between the two groups are based on political and financial gain at the expense of suffering and dying people.
The debate over Lyme disease, is one of the most vicious debates in medicine, with two arguing sides —
IDSA (Infectious Diseases Society of America), is a hugely powerful and well-connected private organization with government preference, whose guidelines have ruled over Lyme patient care since 2001.
ILADS (International Lyme and Associated Diseases Society), is a nonprofit organization founded in 1999 by Lyme practitioners that deal specifically with Lyme.
According to the IDSA (Infectious Diseases Society of America), Lyme disease is ‘hard to catch and easy to cure’ because the infection is rarely encountered and easily diagnosed by distinctive clinical features and accurate commercial laboratory testing. Lyme can be effectively treated with a short course of antibiotics over 2–4 weeks and the spirochete organisms simply go away — Despite hundreds of scientific studies documenting cases of persistent infection after short-term antibiotic treatment the Infectious Diseases Society of America restricts antibiotic treatment and dismisses the existence of chronic Lyme disease.
The CDC’s website links to Infectious Diseases Society of America guidelines instead of the International Lyme and Associated Diseases Society. Doctors fear medical board investigations if they treat outside of “certain” guidelines. This limits the doctors as to how they can treat their patients with Lyme. They are under scrutiny from the medical board if they should decide to give their patients longer doses or another prescription. The insurance company will want to know why the doctor is prescribing more meds and they will refuse to pay anymore of the patient’s bills.
Lyme patients either remain untreated, causing serious health issues and death, or they go elsewhere for alternative medical treatment.
According to the ILADS (International Lyme and Associated Diseases Society), Lyme disease is not rare because it is spread and facilitated by rodents, deer, and migratory birds, and can be found in an unpredictable distribution around the world accompanied by co-infections that generally complicates the clinical presentation. Commercial laboratory testing for Lyme disease is inaccurate. Consequently, the disease is often not recognized and may persist in a large number of patients, requiring prolonged antibiotic therapy to eradicate a persistent infection with the evasive Lyme spirochete. The International Lyme and Associated Diseases Society has years of research finding that spirochete organisms do NOT simply go away. Under-treated infections will resurface, usually as chronic Lyme, with its tremendous problems of morbidity, and will become difficult to treat. ILADS recommends that the “duration of therapy be guided by clinical response rather than by an arbitrary treatment course.” A doctor cannot rely on a laboratory test or clinical finding at the time of the bite to definitively rule in or rule out Lyme disease infection, so the doctor must use clinical judgment as to whether to use antibiotic prophylaxis.
Doctors should not have to pick a side. There shouldn’t even be any sides to pick between; two sets of guidelines for Lyme is ridiculous. Sure, different doctors may have different opinions on how best to treat their patients but a divide which makes it difficult for patients to get properly diagnosed and treated should not exist… and yet it does.
We, the Lyme suffering community, want proper medical care and a cure. As we fight our battle with Lyme, we also have to fight the people who should be protecting us by giving us proper care and treatment. And what do we find — racketeering and scandal.
Racketeering antitrust lawsuit against the Infectious Diseases Society of America
Recently, 28 patients filed a federal racketeering antitrust lawsuit against the Infectious Diseases Society of America, eight health insurance companies and seven medical doctors. The suit claims health insurers are denying coverage using bogus guidelines established by the doctors, who were paid consultants, to falsely say the disease can be cured with a month of antibiotics and that longer-term treatment is unnecessary. Insurers enlisted the help of doctors who were researching, not treating, Lyme disease, paid them large fees and together developed arbitrary guidelines for testing the disease. Once the guidelines were decided, the insurers denied coverage for patients if they did not meet their new stringent Lyme disease testing protocols. Since most Lyme patients would not test positive under the new protocols, the insurers could deny coverage for many people suffering from Lyme disease. The insurers, with the help of the paid IDSA panelists, decided that long-term antibiotic treatment was not necessary and all Lyme disease patients could be cured in less than a month.
You can read the court document here: https://www.courthousenews.com/wp-content/uploads/2017/11/LymeDisease.pdf
This kind of self-righteous behavior has been going on for more than a decade.
The most common diagnostic tests for Lyme disease are the ELISA and the Western blot. The CDC recommends that the ELISA is ordered first, and this is considered a form of epidemiological screening. Then, to confirm Lyme disease, a Western blot is run. In theory, this sounds great but, in reality, both tests are measuring the patient’s antibody response to the infection, not the infection itself. That may work for other diseases such as HIV, but not so well with Lyme. In the beginning stage of the Lyme infection (the crucial stage to diagnose), most people have not yet developed the antibody response that the test measures. The organism may not even be in the bloodstream . Lyme bacteria is known for its stealth activity, and likes to hide and trick the immune system. So with all the hiding from, and hijacking of, the immune system measuring the patient’s antibody response to the infection seems to be one of the reasons why there are so many negative test results.
Another possibility of negative lab results while having Lyme could be the inadequate lab testing —
The ELISA being the first test ordered and considered a form of screening is unreliable. The test has a 65% sensitivity, and that is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least a 95% sensitivity.
The ELISA test was designed as a surveillance monitoring tool for the CDC to track the number of Lyme disease cases throughout the country. It was not meant to be used in making a diagnosis. Many doctors have dismissed the possibility of Lyme disease when their patients have a negative ELISA result and choose not to perform the Western blot.
The Western blot is the second test ordered to confirm the ELISA screening test. If the patient has an antibody to a specific protein, a “band” will form at a particular place on the Western blot. If the blot has bands in the right places, and the right number of bands, then the test is positive for Lyme.
The CDC has removed two vital bands, 31-OspA and 34-OspB from this test. These two bands are highly specific bands for diagnosing Lyme. With the bands removed, this makes an accurate diagnosis extremely difficult. OspA and OspB proteins of Borrelia burgdorferi, are considered to be among the MOST species-specific proteins of the organism, and yet they have been removed.
Why have the bands been removed??? —
Several doctors who originally decided on the band criteria were involved in an effort (at that time of removal) to create a Lyme vaccine, OspA and OspB were part of the vaccine. Anyone who had been vaccinated against Lyme would test positive for 31-OspA and 34-OspB even if they did not have Lyme. So, they deleted those two bands from the list of Lyme testing.
Two companies developed vaccines for Lyme disease in the early 1990s. From December 1998 through July 2000, 1.4 million doses of the vaccine were distributed. The vaccine was taken off the market due to its causing autoimmune reactions and severe health complications.
After the CDC stopped using the vaccine (oops), they forgot to put the highly specific bands back into the criteria for Lyme testing. Did they really forget, or is there a huge vested interest in producing another vaccine? Of course there is a vested interest… the vaccine competition has been going on for quite some time. I compare it to ‘The Space Race of 1957–1969… Who will land on the moon first?Who will come up with another Lyme vaccine first?
If the CDC, or anyone involved with a Lyme vaccine feels that there will be confusion between the vaccinated and those trying to receive adequate Lyme testing, then put together a legal form to be signed by those that have been vaccinated against Lyme.
Once again, put the bands back.
Clinical Laboratory Improvement Amendment —
I was not aware of the Clinical Laboratory Improvement Amendment during the time I was being tested for Lyme. If I had awareness, then I would have done exactly what the LDo (Lyme disease.org) recommends.
This bit of information may help with testing in the event that a Western blot is needed. LDo recommends that you use a CLIA-approved lab that specializes in testing for Lyme/Tick-borne diseases and reports all bands on the Western blot. The healthcare professional ordering the test must ask the lab to report all bands except in the case of IGeneX, which automatically reports all bands.
It is my opinion, Igenex is the leader in developing tests to accurately detect Lyme disease. Igenex automatically reports all bands. It was Igenex laboratory testing that diagnostically tested me positive with having Lyme Borrelia burgdorferi. The end to a long health mystery was finally discovered. No, more tomfoolery with the IDSA, the CDC, vital bands being removed due to a failed vaccine, and no more doctors being scared of becoming targets to their own incompetence. Igenex was not covered by insurance and cost a pretty penny. But a pretty penny was worth a proper diagnosis. Igenex helped me and I hope it helps others seeking out answers to their medical mystery.
Dr. Jyotsna Shah is the President and Laboratory Director of IGeneX Clinical Laboratory, Palo Alto, CA. Dr. Jyotsna Shah…igenex.com
Some people do not receive proper testing for Lyme because the medical community and insurance companies have sucked them dry financially, while trying to figure out their medical issues. These people feel helpless and give up due to their financial devastation. This is seen all too often with Lyme and it never ends well. I want to pass along something I recently stumbled across, or possibly God placed it in front of my eyes to help others.
If you are in need of financial assistance for Lyme testing, the Lyme Testing Access Program may be able to help you.
The Lyme testing scandal doesn’t seem to end even when help is on its way —
In the USA an unprecedented anti-trust law suit of $57 million against the CDC. The CDC accused of deliberately suppressing the use of accurate DNA direct diagnostics for Lyme disease testing.
In 2013 two highly respected researches, Dr. Lee, and David Shearer contacted the CDC for collaboration in Lyme testing. The CDC sent the researchers a collection of blood serum from their Lyme disease repository. These samples were provided for the purpose of evaluating the accuracy of a new nested PCR diagnostic test for Lyme disease that the two researchers had been working on for several years. Dr. Lee uncovered a Borrelia in one of the serum samples tied to a patient in the Hudson Valley, who had been previously treated for neurologic Lyme disease. Dr. Lee also found Borrelia miyamotoi in one of the CDC’s Lyme disease serum samples. As a result, Dr. Lee informed the CDC that the sequence analysis has been shown to be an effective testing platform for accurate diagnosis of Lyme disease, chronic Lyme disease, borreliosis (neurological Lyme disease), and chronic Lyme disease. Dr. Lee and David Shearer, along with many researchers came together to form a national study program to further evaluate and promote new Lyme diagnostic tests. The CDC agreed to organize the study program. Based on this agreement a research protocol was drafted December, 2013 by Dr. Lee and Shearer, and submitted to the CDC for their review. The draft was reviewed, commented on and edited, and the protocol was returned to Dr. Lee and Shearer. In January 2014, the study was to be finalized and implemented. The CDC’s commitment to the national study abruptly stopped with no reasons given. Rather than supporting a group of innovators who have superior diagnostics with rapid detection of the different strains of bacteria that cause Lyme and Lyme borreliosis (neurological Lyme disease), the CDC began to focus on developing their own newly patented test —
Dr. Lee’s technique can detect early infection with as few as 25 bacteria per mL of blood. What a breakthrough with Lyme testing. To think that this technique could have possibly been implemented years ago gives me a sicker- than-Lyme feeling.
As for Dr. Lee —
Through the law firm of Moore Leonhardt & Associates LLC, Dr. Lee submitted the SF-59 form with documents to support the $57 million damage claimed. Dr. Lee intends to donate the money to a non-profit organization to set up nested PCR/16S rRNA sequence diagnostic laboratories in hospitals so that all Lyme patients can be diagnosed early, within a few days of first symptomatic presentation, and receive timely and proper treatment.
Keeping up with the CDC —
Deep breath… Keeping up with the CDC is exhausting. I would like to continue writing with no mention of the CDC or even write the letters C or D, but feeling as though they play a part with Lyme awareness, I believe it’s necessary to continue.
The pointing finger may have tick all over it —
The CDC says that reporting Lyme cases will help government health officials monitor trends in Lyme disease. However, not all cases are being reported.
The cases are not being reported you say, CDC? Now let’s think about how this lack of reporting could possibly be happening —
- Doctors rely on inadequate Lyme testing resulting in fewer Lyme positive results. What is your part in that, CDC?
- Doctors treat Lyme patients under the radar because they are scared. This results in fewer Lyme cases being reported. What is your part in that, CDC?
- People with Lyme disease who struggle financially, due to the “Lyme runaround” with lab testing, doctors’ fees, and insurance billing, are unable to continue their fight for diagnoses. This resulting in fewer Lyme cases. What is your part in that, CDC?
What can we do??? —
We are in a world of technology. Magic math, playing games for profit, and hiding the truth will eventually be found. If an agency is not informing us properly then we, the Lyme suffering people (and others), need to let the truth be told in a different way…
•If you or anyone you know has a positive Lyme result, reporting the Lyme case to My Lyme Data is one way to help.
YOU CAN BE PART OF MAKING THIS HAPPEN MyLymeData is a patient-powered research project. It was conceived by patients, is…www.lymedisease.org
•Also, if you have the Sickweather app, reporting Lyme to them is another way to help. I have been working with the Co-Founder on adding Lyme disease into their app for surveillance.
Online Social Health Network, Sickness Forecasting & Mappingwww.sickweather.com
The sickweather app is easy, free, and will also benefit those that do not have Lyme. The app sends off an alert if a Lyme case shows up in an area. This is beneficial for Lyme surveillance. The sickweather app works well with other illnesses, so I see this as being useful for Lyme.
Just in —
As I am writing about Lyme awareness — one week or so away from posting and publishing — the CDC admits to more Lyme and tick-borne cases, and puts out another surveillance map that appears to override the previous maps on their page which was updated January 19, 2018. So, from January to May (4 months later), a drastic change has developed.
I believe the CDC has not been completely honest for decades concerning Lyme disease. They have been playing games and pointing fingers. But what we can all take from this new surveillance map is what the Lyme community has been saying all along — the overall message is that everyone is at risk throughout the entire country. I believe this map should have been updated years ago, saving the sanity of Lyme-infected victims from hearing the words, “Lyme does not exist in this state.”
Lyme is an epidemic and everyone is at risk unless you live on Mars.
In the last 10 years, ticks known to carry Lyme disease have been identified in all 50 states, including the Hawaiian Islands. I am a numbers kind of person, but with this surveillance map I do not believe the numbers are anywhere close actuality. After all, how could they be accurate when there is a lack of reporting Lyme cases? But, I will give the CDC some credit — at least the CDC now acknowledges that there are cases in states that they previously dismissed.
A second chance —
If you know me well, then I do not have to tell you that I was born into this world with the need to help others. I hope by sharing my story and giving people awareness, that I am able to save at least one person from this horrific disease.
I’m going to tell you what I would do if I suspected Lyme disease and had a second chance. I know that I cannot change my outcome, but perhaps reenacting what I would do could possibly change the outcome for others.
Something is not right, I am terribly ill with very odd symptoms that seem to mimic what I have learned about Lyme.
- I would compose a list of all of the symptoms I am experiencing in the order in which they appeared. I would also add to that list any medications, supplements, and vitamins that I am taking. This list would go with me to the hospital, doctor’s, office and/or a clinic.
- Before leaving, I would ask a family member, friend, or someone to tag along, just in case I forget what is being said. I would ask them to assist me, not because I’m “needy,” but to take copious notes for me as I am speaking with the medical community.
- Once at the doctors office, clinic and/or hospital, I would request a Lyme test immediately. I now have enough Lyme awareness to know that I need to be tested for Lyme.
- I would request an Igenex test. Why Igenex? Because the person that spent so much time explaining the Lyme testing hypocrisy trusts Igenex. I would ask my doctor to please call Igenex at: 1-800–832 3200.
- If the Lyme testing tomfoolery begins and I am forced into giving up my valuable blood for an ELISA via Western Blot, I would lay down my ace of spades ♠️ and evoke the Clinical Laboratory Improvement Amendment.
- I would request to be tested for Lyme Borrelia burgdorferi and other Borrelia species such as: Borrelia lonestari, Borrelia miyamotoi, Borrelia hermsii and Borrelia turicatae.
- I would also request testing for the common co-infections and parasites that accompany Lyme: Babesia, Bartonella, Anaplasma, Ehrlichia, Rocky Mountain spotted fever, Mycoplasma P, Mycoplasma F, Tularemia, Chlamydia P. and Toxoplasma gondii. Having co-infections with microbes other than borrelia is more common than not.
- In addition, I would ask to be tested for reactivated viruses from the families of Herpesviridae: HSV1, HSV2, VSZ; HHV3, SMV; HHV4, EBV; HHV5, HHV6. and HHV7. Also, Cytomegalovirus, Rubella,Varicella-zoster and Parvovirus. — Reactivated viruses are common with Lyme. High IgG titers are relevant and should not be disregarded.
- If I was in an area of the county where other tick-borne viruses are prevalent, just to be safe, I would test for the Bourbon virus, Heartland virus and Powassan virus.
- I would explain to my doctor (without being a know-it-all) there are regular lab parameters that can be affected by Lyme:
- Abnormal lipid profile (moderate cholesterol elevation with significant LDL elevation)
- Insulin resistance
- Borderline low white blood cells, normal SED rate and CRP
- Normal thyroid hormone tests but positive Barnes test an excellent response to giving T3
- Type 2 (high cortisol, low DHEA) or type 3 adrenal failure (low cortisol and DHEA)
- Low testosterone and DHEA
- Decreased urine concentration (low specific gravity)
- Complex changes in cytokines, interferones, NK cells, white blood cell indicators, etc
After the buckets of blood have been drawn —
It’s time to have a chat with the doctor. Depending on the turnaround with the lab results, this chat may be instantaneous, or a waiting game. Despite the timeframe of the lab results, I would request, demand, or ‘throw a fit’ for antibiotics immediately. Hopefully, the doctor is competent enough, and has the courage to make a clinical diagnosis, but if not, then let the fit begin. Why? Because there is a window of opportunity to trick and treat the invading spirochete organisms with antibiotics and that window is not open very long. I would personally request Zithromax or Doxycycline.
Once the day is over I would pick up some probiotics when I am heading home. They are highly recommended while on a course of antibiotics. The probiotics will help maintain the balance of gut flora, and they will also reduce the common side effects of the antibiotics, such as candida.
Now at home, I would try to remain calm. Prayer and meditation works for me. If my head is in an explosive mode, I would put ice packs on the front and the back of my head. This helps the pain and inflammation. Ice works for pain with other areas of the body. Because Lyme makes some people intolerant to heat I would “ice up” my ailing areas.
As a precautionary measure, I would appoint a person as my advocate, in case my symptoms become worse and I am unable to represent myself. I would fill out a HIPAA health release form allowing that person to have access to my medical records for assessing my medical needs.
The Health Insurance Portability and Accountability Act, also known as HIPAA, was created in 1996 by the US Congress to…www.healthcare-information-guide.com
I would start my own medical book. Sure, everything is electronic but having everything in a physical book in chronological order… everything from lab results to notes taken, will help a lot if treating Lyme becomes a puzzle, and for most people it does.
- Igenex testing is still a priority. If the call was not made to Igenex, I would still set up testing ASAP.
- If a tick was removed I would follow up with TickCheck, then take my results to a qualified Lyme literate doctor.
Now what do I do??? —
The average person having Lyme sees more than 15 doctors over a 2-year timeframe before being diagnosed. I truly hope my research, awareness and pointing out what I would do if I had a second chance, lowers the statistics and helps those that I love and care about, including all my readers.
I am not a doctor, just a person fighting Lyme for the last four years so what I write is for you to decide what you want to do with it —
If you or anyone you know has obvious signs of Lyme, but has received a negative test result, then testing periodically may change the outcome.
- Remember, the immune system needs a chance to produce antibodies in response to the presence of Lyme bacteria, and sometimes it’s about catching the disease at the right moment, this is why getting tested more than once may help.
- Testing for other Lyme Borrelia species may be beneficial.
- Standard Lyme testing has a high inadequacy rate, so this could be the possibility of a negative test result. Running a more reliable test, such as Igenex, may be a better solution.
- Finding a doctor that can clinically diagnose Lyme, or an LLMD may be worth looking into.
- Is there a treatment plan in place for co-infections and reactivated viruses? These infections can manifest quickly.
- Do not give up.
Lyme positive, now what??? —
Those that have Lyme more than likely do not have Lyme Borrelia only, because other microorganisms, viruses, reactivated viruses, parasites, other illnesses and diseases have hijacked your body. All ailments need to be picked apart and treated separately.
I cannot stress enough that Lyme is a Multiple-Systemic Disease and presents itself differently with each individual. Every person must have an individual treatment plan according to their “Type” of Lyme, their genetic disposition and environmental factors.
A large majority of Lyme patients will end up having to go see many specialists as the diseases can manifest. It is common to see several other specialists; these doctors include but not are not limited to Neurologist, Rheumatologist, Cardiologist, Psychiatrist, MD-Orthopedic, Gastroenterologist, Nephrologist, ENT, Comprehensive Pain Management, Ophthalmologist, Speech Pathologist, Endocrinologist, Pathologist, Physical therapist, Pulmonologist, Hematologist/Oncologists, Urologist, and yes Infectious disease. It is important that these specialists understand the connection to Lyme. I personaly would seek out a specialist that has the knowledge with treating a secondary disease caused by Lyme.
If you are happy with your doctor and seeing results, by all means, stay with that doctor. If you are not receiving the proper care and treatment, then here are some options to consider:
- Lyme Literate Medical Doctor (LLMD)
- Functional practitioner
The Largest Referral Network in Functional Medicine The Find A Practitioner referral network is designed to locate…www.ifm.org
- Lyme Treatment Centers
Call 269.509.0338 or send an e-mail to firstname.lastname@example.org The St. Georg Klinik's everyday concern is you.…lymeandcancerservices.com
We know antibiotics are not enough to treat Lyme disease because of what we see clinically in our practice but a new…www.envita.com
Help for People Suffering with Symptoms of Lyme Disease (Video / Also Discusses Treatment Philosophy at Hansa Center)…hansacenter.com
Dr. Klinghardt studied medicine & psychology in Freiburg, Germany, completing his PhD on the involvement of the…www.sophiahi.com
Self help books
DISCLAIMER: The Lyme disease awareness that was shared in this series of MIA was through my own experiences and my own research. What I point out is based on my own opinions and for you to form yours. Statistics change, so what you read today my increase or decrease in mathematical data. I am not representing government agencies, non-profit organizations, diagnostic companies, or any product.
Please view this short clip
I have taken what I have experienced and what I have researched to spread Lyme awareness. This has been a very difficult task for me. As a lot of you know, I am still fighting a daily fight and have not gone into remission. I do not know what tomorrow will bring for me, but what I do know is that I have given you a tomorrow with awareness of a life-threatening disease. Please accept this request to share my story and Lyme awareness.
One voice can make a difference, a million can change the world.
Stacy Cellier Gomez
MIA, Let the Truth be Told — Series Two
MIA, The Chronic Awakening — Series Three
Questions, concerns, needing help, or just freaking out… feel free to email me at:
I look forward to your comments and claps😊