Archive for the ‘Lyme’ Category

Tick Bites, Lyme & the Disease Divided

https://pjharlowwellness.com/blog/2019/6/4/tick-bites-what-to-do-amp-what-to-know

Tick bites, Lyme & the Disease divided.

June 26, 2019

By PJ Harlow

TICK BITES, LYME AND THE DISEASE DIVIDED:

A RESOURCE FOR LYME DISEASE

Lyme Disease is everywhere, and growing fast. The notion that this debilitating disease only dwells in the northeastern region of the United States, a place that I call home, is, frankly, preposterous. Likewise, the concept that only ticks carry Lyme is equally frustrating. According to well respected, veteran Lyme Literate M.D., Dr. Dietrich Klinghardt and many more practitioners who treat Lyme patients primarily, it’s agreed that Lyme is carried not only by ticks but additionally fleas, mosquitoes, some spiders, mites, lice & biting flies. While this is not to scare anyone, it’s meant to be used as a cautionary yet educational tool. Not all insects carry Lyme, but many do, to be armed with knowledge is the best thing we can do.

It’s a daily event that I see women, parents, young adults and even grandparents across the world, posting frantically within my numerous Lyme forums. They remind me of myself in our previous life, before we were thrown into the rabbit hole of Lyme & environmental illnesses.

Their questions about tick-bites, rashes and all things à la novice Lyme, inspired me to write this. For anyone new to this, take a deep breath. I see your confusion and I will try my best to help you understand the disease, and the divide.

While I strive for objectivity, surely my emotions will come to light. This story is my experience, knowledge & studies of Lyme. Stacks and stacks of books, years of research, and a mother determined to save herself, her family and help those who may resonate with what I have to say.

PREPARE LIKE THEY ARE EVERYWHERE

With Lyme Disease rising and expected to reach high numbers this summer, it’s best you prepare before you get a bitten. It’s also important to understand, if you are outdoors, spring, summer, autumn, winter, you should take preventative measures. To be outside means you take a risk. It takes temperatures below 10 degrees to kill ticks, and our winters are milder now.

It’s a different world than I knew as a child, and that realization alone, I can’t express enough.

Ticks are everywhere.

Last spring after being bedridden from mold toxicity, Lyme and a number of other environmental issues making me Tox-sick, I had spent a majority of the year in our bedroom, unable to leave the house. When the first 80 degree day came, I decided to venture out to our front steps and enjoy the floral air.

It wasn’t 15 minutes before I looked down, feeling a tickle on my arm. There it was! A tiny, creepy crawling tick, my mortal enemy. I couldn’t believe it, I was legit sitting on concrete! I scare-screamed like a baby just because of the circumstances. The sheer thought of contracting more pathogens, more co-infections, more sickness is pure terror for a Lyme sufferer. When I looked around I saw a potted flower next to me and realized he hid in there, just waiting to hop on whoever came out the door.

None the less, my points made, I hope.

There are some places & activities that you should be extra cautious of:

  • Hiking, Camping, Walking on trails

  • Beach Grass, Sand Dunes, Walking the beach

  • Off-road biking

  • Concerts, Festivals, Picnics, Firework displays

  • State Parks, Any park, Any high grass

  • Hunting, Fishing

  • Golf, Baseball, Lacrosse, Field Hockey, Outdoor Sports

  • Gardening, Grass Cutting

  • Playing in the leaves

  • Horseback riding

Someone might think, beaches? Weird right?

Here in my home state of Delaware, we have high tick populations at our beaches. Ticks love to populate the dunes and seem to favor nesting there.

My daughter Zoe once stepped into a tick nest and had hundreds of baby nymphs all over her ankles. It was a moment cemented into her memory. Needless to say, her fear of ticks is warranted. Eeeeek.

Ticks will latch on while your moving, so be aware: you don’t have to be standing still or sitting, for them to catch a ride.

Some say that ticks don’t go up into trees, but in my husband Peter’s experience, his yard was once infested, and ticks were jumping out of the tree branches, attracted to the CO2 of human breathing.

Almost all bugs including ticks and fleas search for potential hosts by sniffing out carbon dioxide. Human and animals all give out carbon dioxide while exhaling and especially while sleeping. Ticks reach out to potential hosts by tracking the carbon dioxide levels and heat radiated by them.

Teach your kids about ticks, talk to friends, teachers, doctors, your community. Talk about places they might like to hide and that it’s essential for everyone to check daily if they are outdoors a lot. Talk about Lyme Disease and that its spreading, fast.

As much as I don’t believe in fear campaigns, I do respect the truth, and Lyme Disease should be a huge concern, especially for kids.

When’s the last time you heard about Lyme Disease?

TIPS FOR PREVENTION

PREPARE now, so you aren’t in a panic when you encounter a tick bite. There are tools to use for tick removal, and treatment options, like essential oils, herbs or homeopathy. These can be used at home, are easily attainable and can help lessen the chances of contracting chronic Lyme. We recommend building your emergency tick kit asap.

UNDERSTAND how a tick bites and its anatomy. This will give you the insight that relays the importance of the tick removal tool. You won’t feel it as they pump saliva into the skin which has special properties to numb the bite area, so the host doesn’t feel the tick feeding. It keeps the blood from clotting so the tick can continue to feed for a number of days until its full.

anatomy of tick.gif

A TICKS MOUTH

When seen with a microscope, a tick’s mouth has what look like twin saws (chelicerae) with an appendage (a hypostome) in between those. The hypostome looks like a long, jagged or barbed sword.

As it cuts, it looks as if it is doing the breast stroke with its pair of minuscule mouth saws. That movement cuts and pulls back the skin, plunging the hypostome deeper with each stroke, barb by barb, which, of course, makes them difficult to extract.

PROTECT your bare skin by wearing compression shorts, long pants, sleeves, high socks, and/or tucking pants into socks. I know, it’s a pretty hot look.

Wearing white makes the ticks more visible, but is more visibly attractive to ticks. Dark clothing is less attractive but not visible for anyone to see the ticks. Catch 22. Wear closed toed shoes, which if you know me I have never been a fan of flip flops anyway.

There is gear available if you must work outside in an endemic area. Keep in mind, we do not promote Pemethrin treated clothing, especially for children and would not wear this ourselves. Permethrin has been shown to be a neurotoxin and is classified by the EPA as a likely carcinogen. However, the gear is shown to work well preventing ticks. We feel risk should be researched individually and is a personal choice. (We are not affiliated)

AVOID areas where ticks & insects thrive. Wooded areas, thick brush, wood piles, leaf piles, long grass, dunes and beach grass. Stone walls are frequented by mice & rodents that can leave ticks behind, so it’s important to be particularly careful in these areas. Bird feeders are helpful since birds feed on ticks.

PURCHASE a tick removal tool. Tweezers, while usually the easiest thing to find in your home, are not ideal, and no matter how careful you are, you still run the risk of passing bacteria if you do not have a tick removal tool on hand. Its best to be prepared considering it’s highly likely you will have a run in. The tick removal tool is very inexpensive.

APPLY Tick & Insect repellent. Treat your yard. Treat your pets. We are a non-toxic family, and use essential oils for skin protection. We can no longer handle toxic ingredients of any kind. Some of my favorites oils to use are oregano, thyme & bergamot since they contain carvacrol & thymol. Badger Organic & Wondercide™ also make non toxic bug sprays, if you are not into making your own. We have been successful with oils, particularly the ones I mention.

You can also take herbs which are known to prevent insect bites and support your immune system. Cistus incanus, also known as Mediterranean rockrose, is an herb recommended by Dr. Dietrich Klinghardt to prevent tick and other insect bites. General dosing are as follows: BioPure Cystus Tincture: 2 droppers 3 times per day or for BioPure Cystus Tea start with 2 cups per day & you can increase to 8.

Stephen Buhner, renowned master herbalist specializing in Lyme Herbs, recommends Astragalus to optimize immune function taking 1,000 mg per day. 10 drops of the tincture to the diet of the one year old 3x daily.

I have a good friend who uses the herb, Andrographis. It has immune strengthening and preventative effects as well. 1 dropper 2-3 times per day.

For a homeopathic remedy, there is Ledum Palustre . Its botanical name is Rhododendron Tomentosum and is used for insect bites, bee stings, arthritis, eczema and paresthesia.

If you’re unable to find 200c, 30c will work fine as well, with the same instructions. -Every 3 hours for the first day -Twice a day for the next week -Twice a week for the next month -Once per week for another month according to Dr. Jay Davidson

For an overview of tick repellents click here.

christin-hume-505815-unsplash.jpg

TICK REPELLENT

10 drops clove oil

10 drops vetiver oil

10 drops citronella or bergamot oil

6 drops oregano oil

4 tbsp fractionated coconut oil (or fill up a glass spray bottle with water + the essential oils for a diluted spray version)

4 oz glass dropper bottle

Combine all oils in a glass dropper bottle. Apply about 7 – 10 drops on exposed skin just like a lotion before heading out. (Keep in a dark place.)

PROTECT your lawn/yard & Pets. While I love trees, it’s safest to have a yard with high sunlight, (less mold too) short grass, and no piles of wood, rocks, or grass clippings.

With our cat, we have struggled with fleas previously. Its a rule in our home that shoes be kept at the door, and I recommend Diatomaceous earth to sprinkle around the yard. It is not harmful and it can be used to treat fleas indoors, which you can learn more about here. It kills by physical action, not chemical and is something I wish I had known sooner. This is a brand we recommend, or you can find it easily yourself, just make sure you are getting a good quality.

EXAMINE yourself, your kids and your pets for ticks, bites & rashes daily. Check everywhere — ticks love to hide!

Children are at the most risk of becoming infected so it’s something parents should be prepared for. We should all be checking young children consistently.

Our kids are teens and older, but it doesn’t stop me from literally waiting outside the bathroom as they check themselves. I still will do a body scan of their back and head, behind the ears and armpits, considering we all have Lyme already, we are extra careful.

Ticks hide in warm, moist places, such as the groin, back of the knees, armpits, the back of the neck, navel, and ears, but ticks will feed anywhere on the body, so look carefully.

A primary spot for boys is under the testicles, so do not skip this area -If your kids are big guys be sure to tell them to check themselves. It’s not even summer yet and we already had a traveler on my son just from going to school.

The nymph is only the size of a pinhead and may be missed during your daily examination. Be sure to feel skin for any tiny bumps that might indicate a tick, especially on the scalp. If a bump is found, do not squeeze or press the bump.

WHEN YOU FIND A TICK

Grab+here+%281%29.jpg

REMOVING A TICK

If a tick is attached to your skin, it needs to be removed properly and promptly.

Use the tick removal device (link above) to spin and remove the tick. This is the best way, so preventative measures are necessary to purchase ahead of time.

If you must, you can use tweezers, but it’s not recommended. (Ticks have jagged mouths that are or special tick removal tweezers as close to the skin as possible, apply steady & even pressure, & gently pull the tick upward from the opposite direction from which it is embedded.

DO NOT squeeze, twist or jerk the belly of a tick. This will increase the risk of infection and you may also tear apart the tick leaving part of it embedded in the skin.

DO NOT try to burn the tick with a match or douse it with alcohol, creams or nail polish remover. This will only irritate the tick and make it dig in harder, passing more pathogens.

  • The longer the tick is attached, the greater likelihood of transmission of disease.

  • There is no real proof that a tick must be attached for a certain number of hours to transmit. Use caution no matter what.

For more information and items to add to your Prevention Kit, such as Tick ID cards and magnifiers, the GLA (Global Lyme Alliance) has more items here.

TESTING FOR TICKS

  • Place tick in a zippered plastic bag or sealed container with a damp cotton ball or blade of grass to bring to your local health department or private lab for testing, if they provide this service. The blade of grass or dampened cotton ball provides moisture to keep the tick alive. Both dead and live ticks may be tested, but live ticks yield quicker test results.

  • You can also simply flush down the toilet. A tick should never be crushed with your fingers.

  • Check out the Global Lyme Alliance website here or Tick Encounters here for detailed information & instructions with regards to having ticks tested. Tick Encounters gives the option to mail in a Deer Tick, American Dog Tick, or Lonestar Tick. For $50, they will test for various strains of Borrelia and other co-infections, such as Babesia microti, Rocky Mountain Spotted Fever, and Ehrlichia chaffeenis. By testing the tick, you will for sure know if you or your child has been exposed. Some states also offer free testing

TREATMENT OPTIONS FOR TICK BITES

  1. If you are in a metropolitan area that offers it, you can inject the bite with ozone. This is recommended within 72 hours of getting a bite.

  2. Doxycycline 200 mg twice daily for 3 weeks or doxycycline 100mg twice daily + minocycline 100mg twice daily for 3 weeks. (Children under 8 cannot take Doxy and would be on Amoxicillin 50-100 mg/kg per day orally, divided into 3 doses for 21 days)

  3. Probiotics should always be a part of the treatment plan when using antibiotics. A spore based probiotic should always be used rather than conventional probiotics for optimal health. We like Just Thrive’s brand.

  4. BioPure Cocktail Tincture, Hyaluronic Acid Tincture and Cistus Tea and/or Tincture

  5. Astragalus 3,000mg daily for 30 days & decreasing to 1000mg per day indefinitely.

  6. Andrographis tincture and green clay. Mix the two ingredients together to make a past and apply to the tick bite area, as a way to prevent active infection.

SO, NOW WHAT?

lyme disease.png

Most people will tell you to run and get tested for “Lymes”. Ok, just so you know, there is no such thing as “LymeS”.

Lyme Disease is pronounced & written as LYME, always, both singular & plural.

I don’t know where the “S” got added, but I decided to make note so we can recognize the error.

While this may seem nominal to some, it is important in the bigger scope.

We have enough issues w/ Lyme Disease already. Admittedly, I am a grammar, spelling, pronunciation & diction aficionado, so those kind of things have meaning to me. There is absolutely no judgement here, just spreading formal awareness.

TESTING

Before we go any further, I want to express our opinions on testing. We don’t put everything into it.

Why?

It’s stressful, costly and often not conducive to getting you better. Lyme is also a clinical diagnosis. Meaning you don’t have to have a positive Lyme test to have Lyme Disease.

The level of technology we have with Lyme tests is poor, and in our own personal story, I knew we all had Lyme due to our symptoms, my intuition and what our Lyme Literate doctor stated later on. I found myself wanting tests to prove to other people and even myself, because I was gaslit and doubted so much. In the end, they still didn’t believe me or anything I expressed and testing didn’t make a difference in beginning my treatment of Borrelia.

METHODS OF TESTING

The standard method of testing in the United States is with a two tier test method called the ELISA and the Western Blot. Both are inaccurate, and both are testing you for antibodies. Although of the two, the western blot is better.

ANTIBODY: a protective protein produced by the immune system in response to the presence of a foreign substance, called an antigen. Antibodies recognize and latch onto antigens in order to remove them from the body.

There is other testing called PCR that looks for Lyme DNA in the blood, however, the blood is not a place stealth microbes like Borrelia like to hang out. Borrelia likes to drill deep in your tissues, and can even hide in what’s called biofilm, it can enter your cells, and can evade the immune system by changing forms. It takes a little as a few minutes for it to change from it’s natural spirochete form to cystic form, which is 1000x’s more protective then the spirochete. It does this when feeling threatened or it doesn’t like the conditions of your body at a certain time. These cysts are so stealthy, they can survive 600 degrees centigrade as well as hydrochloric acid.

In my State of Delaware, we just passed a law that patients who get tested for Lyme MUST be told the testing is inaccurate. This means if you come up negative, it does not mean you don’t have Lyme Disease.

ANOTHER MYTH, “LYME FREQUENTLY COMES UP FALSE POSITIVE”.

This is incorrect. It’s highly unlikely and rare.

The CDC requires you to have positive antibody markers on the ELISA test first, and then only after it’s positive, they will require multiple antibody markers or bands on the Western Blot. This doesn’t happen in most people. Lyme is not only known to cause a wealth of symptoms but it suppresses the immune system.

Having tests based solely on measuring those immune markers of activity, its pretty much a no brainer. If you’re sick, and not producing antibodies, why would you be able to produce them for a test, let alone, multiple ones.

So when you hear people saying I have Lyme but I am not “CDC positive” it means they didn’t meet the CDC high expectations of testing requirements, which for Lyme warriors, really means nothing. It’s honestly just another low blow aimed at our integrity.

ACCURACY

Now that we understand the methods are not sufficient, the next issue is the testing sensitivity and accuracy.

To simplify, The ELISA is like a general antibody test, and the Western Blot looks at multiple antigens found on the Lyme bacteria and measures the antibodies or “bands”. The tests will look for two types of antibodies.

  • Acute (early) infection are evaluated with IgM antibodies

  • Late acute or chronic infection with IgG antibodies.

The IgM antibodies show acute Lyme disease. Testing can be positive as early as one week after infection, and remains positive for six to eight weeks after initial exposure. CDC guidelines require two positive bands out of three (23-25, 39, 41). IGeneX labs add three extra bands (31, 38, 83-93), the first two of which were removed from the CDC criteria during the development of an unsuccessful vaccine and was never replaced in the original testing.

The IgG antibody is typically present a few months following initial infection. IgG antibodies are indicative of chronic Lyme disease. CDC guidelines require five positive bands out of 10 (18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93). The IGeneX criteria is two bands out of six (18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93). Band 41 is specific for the flagella (tail) of spirochetes (corkscrew bacteria), but is said to not be absolutely specific for Borrelia. It’s been stated that this particular spirochete may also be related to syphilis spirochetes or whats called dental spirochetes. Many people with Lyme that I have interviewed have all had band 41, sometimes in testing it was the first and only band. So the theory that it’s more common to have “dental spirochetes or syphillys spirochetes” more so than having Borrelia spirochetes seems to mystify me. I had band 41 and so did everyone in my family. None of us have syphilis or dental spirochetes.

westernblotbands.png

WESTERN BLOT BANDS

Some Lyme specialists and scientists believe that there are five very specific bands on the Western blot test that are highly indicative of Lyme disease, band numbers 23-25, 31, 34, 39 83 and 93.

If any of these bands are positive and the patient is experiencing symptoms of Lyme disease, they may feel treatment is warranted.

This test is generally considered the most reliable test currently available although it is estimated to be only 57% accurate according to IGeneX labs. Other Lyme literate physicians such as functional M.D., Dr. Todd Watts has stated it to be 70% inaccurate in his practice.

Many allopathic doctors will not consider using the western blot unless the ELISA is positive, thus missing an important diagnostic tool.

The western blot is only focused toward the diagnosis of Borrelia burgdorferi, the primary bacteria associated w/ Lyme, & not other species of Borrelia that may cause Lyme disease or other problematic co-infections like Bartonella, Babesia, Mycoplasma, & more.

STIGMA

Its almost like a rite of passage at this point. We all end up having a run in with doctors and/or pediatricians, people you know, family, or friends at one point. With Lyme Disease it’s not long before you’ll see exactly why people with this illness are so passionate and determined. We have had to fight for everything, especially our dignity, honor & integrity. Through the process have become so self sustaining, many of us know more than our primary care physicians and the established healthcare system. Lyme is heavily ignored, mocked and stigmatized. It’s truly a crime of humanity.

After our mold toxicity diagnosis, we soon found that a big portion of people who have mold toxicity/CIRS are also usually Lyme positive. We lost our house & everything we owned from the mold, and like most families who would experience such a tragedy, couldn’t afford the out of pocket testing for each of our 2 younger kids, my husband and myself. (IGeneX, Armin Labs & DNA Connextions run in the hundreds to thousands for testing, so when you have multiple people- it can get astronomical)

I made a list of labs I wanted (to interpret myself) and had Peter (my husband) ask our primary care provider (family doc) to have them done through Lab Corp. Instantly our doctor became offended & just “knew” Peter didn’t have Lyme. He started a barrage of accusational questions, as he hemmed & hawed over Peters determination.

Shocked at his obvious depth of knowledge in the subject, that trumped his own, he refused. Peter is not one to back down and tried to negotiate. While looking at my list of lab codes, the doctor finally said he would do a western blot based on his symptoms but reiterated that, “he knew it would be negative.”

It was somewhat of a glorious moment when the testing came back CDC positive. His doctor was shocked, mystified and still treated the situation like we somehow cheated the system. He was angry after learning Peter went to a LLMD (Lyme literate medical doctor) and had such a temper tantrum over it he stormed out of the treatment room when Peter went for a follow up. He treated my husband with such condescension that would later result in us leaving the practice all together. We have yet to find a replacement PCP that doesn’t mirror the same disdain for Chronic Lyme Disease, the sufferers of Lyme & a righteous amount of cognitive dissonance.

While most practitioners may have had 8 hours or less- total, of training for Lyme Disease- 1520+ years ago, we have been studying the latest methods, procedures, protocols, discoveries and treatments, for sometimes 8 or more hours per day.

And no, we don’t get all our information from Facebook posts and mommy blogs while we roll around on the floor in essential oils. LOL. (I get a bit sassy when I am forced to defend my own illnesses, my intellect, education & character that is constantly challenged & judged by the general public, the media, and the medical establishment. (But seriously where do people come up with this stuff?)

Anyone with Lyme knows exactly what I am talking about, and lives with it. That however, seems to be questionable too, as we supposedly aren’t aware or capable of our own bodies either, according to most. Insert sarcasm here.

DIVIDED

As you have read, and maybe experienced yourself, there is a huge divide among our medical system. Many practitioners are either uneducated or biased and egotistical. There are two opposite sides to Chronic Lyme. The sooner you realize this, the less pain and suffering you will experience.

  1. The truth seekers, believers, the sufferers, victims, warriors and people who know without a doubt that Chronic Lyme exists. These people have spent years researching, learning, advocating; and treat Lyme Disease as a worldwide, debilitating & serious chronic illness with numerous symptoms, mirroring numerous illnesses.

    • Does not require a positive blood test for diagnosis, nor requires rash as a symptom.

    • Lyme is worldwide

    • Lyme is an epidemic

    • Cannot accept insurance since there is no ICD-10 Coding for Chronic Lyme Disease (Must pay OOP-out of pocket)

    • Agrees Lyme is congenital, and passed via breast milk.

    • Some agree it is additionally an STD, but not all.

    • 50/50 believe it’s passed additionally by mosquitoes, fleas, spiders, and biting flies.

    • Agrees that Mold is a trigger for Lyme, but not all know how to treat.

    • Differing in treatment, some do antibiotics, some do herbal & homeopathic, some do both.

    • (Does not agree with the CDC) A group of patients, children, parents & caregivers, LLMD’s-(Lyme Literate Medical Doctor), Functional medicine practitioners, Integrative practitioners, naturopaths, environmental health coaches, functional nutritionists, herbalists.

    • GLA-(Global Lyme Alliance), ILADS-(International Lyme and Associated Disease Society)

  2. The people that think Lyme doesn’t exist as a chronic illness, is nothing to be concerned about, & has a variety of symptoms like fever, rash, facial paralysis, and arthritis.

    • They believe it is an acute illness, “easy to diagnose and treat”.

    • Most doctors believe you must have a bulls-eye rash present to be positive.

    • Must have positive ELISA & Required Bands on Western Blot.

    • It only exists in the northeastern states from Virginia to Maine, in California, Minnesota and Wisconsin ONLY.

    • Believes Lyme is only passed through ticks, not congenital or an STD.

    • Does not recommend skipping the first test (ELISA) and just doing the Western blot. Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment.

    • Believes testing is highly accurate and is so sensitive it often comes back “false positive”

    • Believes “Chronic Lyme” is when people have another illness not related to Lyme, usually mental health issues.’

    • States only 30,000 people per year get Lyme.

    • Believes Lonestar tick, American dog tick, Brown dog tick and Rocky Mountain Wood tick cannot be carriers of Lyme Disease.

    • States it’s there is no proof of Lyme being transmitted via blood transfusion, and if you were infected, once you are done a course of 2 weeks of antibiotics, its ok to donate.

    • States prolonged antibiotics are no different than treating with a placebo.

    • Refers to Chronic Lyme in their own terms called: (PTLDS) or post Lyme disease syndrome (PLDS).

    • They will presume you’re psychosomatic, have mental health issues, making it up, diagnose you with Fibromyalgia or some other collective symptom diagnosis.

    • Believes patients are incapable of understanding their own bodies or symptoms and unable to do research, that you have no intelligence, will gaslight you and refuse to listen or think otherwise.

    • Lyme is curable

    • (Agrees with the CDC) Your family doctor, pediatrician, rheumatologists, ER docs & nurses, infectious disease doctors, big hospitals, & large groups, health insurance companies, med school students, interns, allopathic practitioners.

    • CDC, IDSA (Infectious Disease Society of America, ALDF-(American Lyme Disease Foundation)

Every doctor we went to, stated it was easy to diagnose, testing was accurate, treatment was simple and that not me, nor my husband or children had Lyme.

I was told that my own symptoms were “all in my head” and that I needed to see a psychologist. My testing was negative because I only had one band, 41. I was “making this up for attention”, my labs were “normal” and yet another told me I was trying to get narcotics, when I didn’t even ask or mention it!

At one major children’s hospital, the infectious disease doctor refused to look at my kids prior diagnosis’ of mold toxicity from another M.D. in Washington, DC and proceeded to mock us by saying mold was a quack illness. His nurse held our positive labs (which were so many, each child had a 3 ring binder) the entire time while he didn’t bother to even look. They included pages & pages of inflammatory markers, low CD57, EBV, High C4A, susceptible biomarker HLA-DR genetic tests, positive Rocky Mountain Spotted Fever and multiple positive western blot IgG & IgM bands.

He did a scoliosis back exam, looked in their ears and eyes, had them push up with their hands & legs with his hands pushed them down and remarked they were both “psychosomatic”. I hopped up instantly and said, “C’mon kids” and calmly grabbed our lab binders from the startled nurse and immediately said, “Thank you for your time, but I don’t agree with your assumption, and I know exactly what you support here, which it hurts to know, is not children with Lyme Disease. I may not know much according to you, but I do know your absolutely wrong”, and walked out.

I often think about how many kids are misdiagnosed with ADHD, Allergies, OCD, Gut issues, Eczema, Obesity, Depression, Mental health issues, etc. Those are all just names that match a grouping of symptoms. None of them are the root cause of the illness. Many people and children are being put on medications that only suppress their symptoms, and conclusively we are stuck using a system of medicine that no longer serves chronic illnesses of today. The pill for every ill is not healing anyone.

These symptoms that clearly are Lyme Disease or related to the environment continue to be denied in ignorance, which creates this huge divisional problem we have. I get teary-eyed thinking to myself that there is a child out there, who is alone right now, his/her parents perhaps don’t believe them, not on purpose, they think they are doing the right thing since doctors say they are “psychosomatic”- when that is so far from the truth.

I am fighting for you sweet child, and you too Mom and Dad, you are not alone.

We are growing, and uniting for all of us.

WE ARE IN THE MIDST OF GREAT CHANGE WITHIN THE FIELD OF HEALTH CARE.

sai-de-silva-41029-unsplash (1).jpg

“THESE SYSTEMS ARE NOT EQUIPPED TO ADDRESS ROOT CAUSES, HANDLE CHRONIC ILLNESS, NOR SEE PEOPLE THROUGH TO DISEASE RESOLUTION & LONGEVITY. IN FACT, THEY WERE NEVER DESIGNED TO DO SO.”

-Carla Atherton, MA, Director, Family Health Coach, Healthy Family Formula

SYMPTOMS

There are many symptoms of Lyme, hence the “great imitator” tag line. Some are ones that you may not even notice or take serious. This is another belief that has slowly rooted throughout society. We have come to accept certain symptoms as “normal” and lost the ability to recognize when some things are wrong.

Lyme is rumored most notorious for it’s “bulls-eye rash”, which even a majority of physicians unknowingly hold regarded as the “one and only sign” of true Lyme transmission. I want to be clear, this is false.

Less than 50% of people get the classic EM (erythema migrans) rash.

In my personal experience, myself, my husband and 3 of my children all have Lyme, and none of us had a rash. I have hundreds of Lyme Disease warriors and friends through the power of technology and 98% didn’t see a rash either, so, take that for what it’s worth, when you need to make a judgment call.

Early signs of Lyme are like flu symptoms, you feel tired, better yet, fatigued. Netflix and PJ’s are your top priorities. You may have a sore or stiff neck, muscle aches, fever, anxiety, irritability or paranoia, sore throat or what feels like a sinus infection that won’t go away. Some people have headaches, numbness, facial palsy (weakness in the face), seizures, or a rash that’s so pale or oddly positioned that it’s barely noticeable. If you get a rash, it’s just as likely to look like a simple rash that is easily mistaken for a skin infection or spider bite.

IT DOESN’T HAVE TO “LOOK” LIKE A BULLS-EYE.

bullseye rash.png

An important factor to understand, with Lyme disease your symptoms aren’t raging 24/7. It fluctuates in time & severity. This is another reason why people imply we don’t look sick.

For me, I fought illness with excuses at first. I spent a long time thinking what I was experiencing was normal aging (I am not that old mind you) or I made excuses like I was working too much, stressed out or my bed was worn out. My hands were the first to hurt, aching at work, I thought it was carpal tunnel honestly. Then came the “fibromyalgia” diagnosis. Was it Lyme or the mold that triggered my down fall in health? We will never know, and I am good with that for now.

Symptoms can also disappear for years and then reappear when it’s optimal for the pathogen to fire up again. I am a prime example having contracted Lyme when I was a child, then it went into hiding until I got exposed to mold, years and years later.

SIGNS IN YOUNG CHILDREN

If your child is ill, see your pediatrician. If they won’t treat or you know there will be push back, move on. Signs of illness or infection in kids include:

  • being tired often or getting tired easily

  • being listless or less active than usual

  • complaining of aches or pains including headaches, stomach aches

  • glassy eyes, circles under the eyes, paleness, loss of appetite, loss of interest in activities

  • dizziness, fever, mood changes, and irritability.

BIOINDIVIDUALITY

Every single person is bio-individually different, meaning we all have differing variable factors. We have different genes & epigenetics, different diet and nutrition, different exposures throughout life (GMO’s, pesticides, heavy metals, viruses, pathogens, chemicals, electro-smog, EMF’s, vaccines, pharmaceuticals, pollution, toxins passed in utero, etc.) and therefore differing levels of toxicity. (Everyone, even infants have some degree of toxicity in the world we live in today). We all have different allergies, as well as our microbiomes contain completely different strains of bacteria-both good and bad.

Our lifestyles are all complexly differing as well. I know for me, I have experienced a lot of deep trauma early in my life, whereas you may have grown up without ever getting exposed to such dark emotions. This equivocally plays a role into our immunity, our body burden and the way our body will heal in the future.

Each of our immune systems react individually different. Because of this concept its been much easier for us to understand why chronic illness presents so diversely, and equally why there is no one cure or answer in treating chronic illness. What may be harmless to me, may take down my husband.

MICROBIOMES

I mentioned our microbiomes earlier, which the body actually has many. Most notable being your gut, but equally we have a skin microbiome, sinus microbiome, vaginal microbiome, eye microbiome, colon microbiome, etc. All of us have tiny microbes working within and on us, since the moment we were born.

The first microbes babies get, if delivered vaginally are a film of microbes as they pass through the birth canal. This is a critical part of our early life to which I was unaware when I had my kids. This would of changed my opinion of the 2 c-sections I had, and I would of fought harder to have a VBAC (vaginal birth after Caesarian), to which I was told was impossible at my hospital.

It’s essential to understand that microbes/bacteria get a bad rap. There are good bacteria and bad bacteria. Much of my own life I spent thinking all bacteria was bad, and that it was healthy to constantly be dousing myself with anti-bacterial soaps, wipes and sprays. To me, bacteria was synonymous with sickness or infection, and I went to great lengths to keep my home and body practically surgically sterile. This has now been to my own detriment.

We are bacteria, more so than we are human in a sense. The body is so sophisticated, and contains thousands of differing ecology with 3.5 million microbial genes inside of us. The human body is coded with 90% of bacterial DNA. This means that only 10% of our own DNA is actually driving the ship. When you break this down, it helps to understand this design of our bodies, and how it all symbiotically plays a part.

CO-INFECTIONS

Without adding more complexity, it’s essential to understand ticks and bugs carry much more than just “Lyme”. What’s referred to as co-infections, are additional pathogens, viruses or bacteria that get passed via bite or that can be passed congenitally from mother to child in utero. Some of us may already have existing co-infections present in our bodies and never knew. This would be a reason why I would encourage & invest in testing. You may hit a plateau in treatment. Some of these include:

  • Bartonella

  • Babesia

  • Mycoplasma

  • Ehrlichia

  • Rickettsia

  • Rocky Mountain Spotted Fever

  • Tulermia

  • Powassan Disease

  • STARI

  • Anaplasmosis

  • Heartland Virus

  • Brucella

Not to mention there are over 20 different known species of Borrelia worldwide and an unaccounted number of different strains of each species.  This is just what we know, I am sure the real numbers are astounding at this point.

The symptoms that present will also take into consideration the amount of time you have been sick (particularly prior to diagnosis), and the immune-response of the individual. It is therefore difficult to look at patterns, particularly in teenagers, when hormonal factors can also influence symptoms.

PRESENTATIONS IN CHILDREN WITH LYME

1. Many with Lyme disease do not look sick, particularly those for whom the neuropsychiatric symptoms are the primary indications.

2. Fluctuations in moods may occur, such as irritability, hostility, extreme sensitivity, anxiety, panic attacks, and even combativeness and opposition. Female adolescents often have extreme PMS symptoms.

3. Fatigue and depression are very common and stem from the illness itself, as well as the situation of the patient.

4. Cognitive problems, such as problems with attention, concentration, executive functioning (planning, organization, prioritizing and multitasking, concentration, and working memory), short-term memory, and word retrieval can occur with people who have been diagnosed with Lyme.

5. Eating disorder symptoms, though not common, can be seen in both male and female adolescents, as well as in adults, with Lyme disease.

6. Sound and light sensitivity can impact a student’s ability to tolerate the noise and fluorescent lighting of most school settings.

7. Abilities to perform well and consistently, in the academic, athletic, and social arenas can be seriously impacted, and the student with Lyme disease often loses confidence in him/herself. Sound and light sensitivity can impede a student’s involvement in social activities (sporting events, school dances, etc.)

8. The effect of Lyme disease on the brain and body can even impact a gifted athlete’s ability to perform:

  1. Spatial perception may suffer; thus an athlete may lose the ability to judge distances.

  2. He/she may lose the ability to recall and execute plays, as well as understand and follow directions.

  3. Reduced speed of processing can inhibit the ability of an athlete to compete at his/her pre-Lyme disease potential.

  4. Extreme sensitivity to light and sound might impact performance (even watching an athletic event can be difficult for a student who has late-stage Lyme disease).

  5. Physical symptoms that impact performance include: intermittent fatigue, muscle and joint pain, dizziness, loss of balance, strength, coordination, and flexibility; even asthmatic symptoms may be worsened by Lyme disease.

yuris-alhumaydy-671913-unsplash.jpg

“LYME DISEASE HAS BECOME, AFTER AIDS, PROBABLY THE FASTEST SPREADING INFECTIOUS DISEASE.”  Dr. Dietrich Klinghardt, PHD., MD

9. Part of the pattern of this illness is that symptoms may come and go, or become more or less severe, from day to day, both due to the illness itself, (and to the response to treatment.) Because of this, Lyme disease patients often are met with doubt from those around them who have difficulty accepting that they are suffering from a serious, debilitating illness. Lyme disease is often an invisible disease because the patient may not always appear to be ill.

10. Students who are ill with Lyme disease may respond in different ways, partially due to their gender. Female students may be more likely to display emotion, some having tearful “meltdowns” when they feel overwhelmed. Male students are more likely to withdraw—exhibiting the bravado common to adolescent males, perhaps denying the illness—and appear angry and belligerent. Adolescence, a time of change and pressure on several fronts, is far more difficult for students struggling with Lyme disease.

11. Some students with Lyme disease are truly isolated, missing school for long periods of time, not being able to predict when they will be well enough to return to school and remain there.

12. Non-acceptance by peers and the isolation that comes from long periods of time out of school can lead to feelings of alienation and loneliness. This can result in a tendency to further withdraw and isolate. Some feel embarrassed about an illness they cannot control.

13. Returning to school after absences may be a problem, as the student struggles to catch up, and returning to the social arena can be particularly difficult.

EDUCATIONAL SIGNS

1. Loss of school time:

  • Too sick to attend school at all

  • Too sick to attend full day

  • Frequent absences

  • Late mornings/start of school

2. Interrupted school day:

  • Falling asleep in class

  • Frequent visits to nurse

3. Cognitive impairments (often dramatic):

  • Word-finding deficits

  • Impaired memory, short- and long-term

  • Forgetfulness

  • Reduced processing speed

  • Impaired auditory and visual processing

  • Impaired visuospatial ability

  • Inability to multi-task

  • Impaired attention and concentration (ADD-like symptoms)

  • Difficulty planning and organizing school work

  • Reduction in IQ, sometimes dramatic

  • Inconsistent performance across all aptitude, achievement and functional tests

  • Poor concentration

  • Very Distracted

  • Difficulty organizing schoolwork

4. Other impairments that impact learning:

  • “Brain fog,” described as the inability to think, remember or articulate clearly

  • Profound fatigue, as well as other physical symptoms (see symptoms)

  • Vision problems (floaters, blurred vision, etc.)

  • Sensitivity to light and sound

5. Despite the student’s best efforts, the effects of Lyme disease can impact academic performance in all areas, resulting in:

  • Low or inconsistent test scores

  • Poor or inconsistent class participation

  • Poor or incomplete homework assignments

6. Standardized tests:

  • A dramatic lowering of IQ can be seen on tests

  • Other standardized tests can give a false (negative) impression of the student’s potential (including college entrance exams)

For more information & resources for Teachers, Educators & Schools to teach students of all ages, visit the GLA here.

SYMPTOMS LIST

This is a not a full list, there are many possible symptoms and many illnesses that mirror Lyme: Fibromyalgia, Parkinson’s, MS, Dementia, Alzheimer’s Disease, ALS, ADHD, Allergies, Autism, Rheumatoid Arthritis, Mold Toxicity & Autoimmune Disorders.

General Well-being: Chronic Infections, Chronic Flu Symptoms, Sleep disorders, Insomnia, Never get enough sleep, Extreme Fatigue, Extreme “Mono-Like”Exhaustion, Hair Loss, Swollen Glands, Sore throat, Weight Gain, Weight Loss, Irritable Bladder Dysfunction, Change in bowels, Upset Stomach, Constipation, Tingling, numbness, burning, or stabbing sensations, Light-headedness, poor balance, difficulty walking

Cognitive Symptoms: Difficulty with concentration, reading, spelling, Difficulty in multitasking, Math problems, Difficulty making decisions, Memory Loss, Disorientation: getting lost; going to wrong places, Stuttering, Speech Problems, Poor school or work performance, Attention deficit problems, Distractibility

Skin Problems: Erythema migrans (rash), Acne, Strange Rashs, Eczema

Ocular: Floaters, Double or Blurry vision, Vision changes, Excessive Sensitivity to Light

Auditory: Ears Ringing, Vertigo, Hearing Loss, Excessive sensitivity to sound

Musculoskeletal System: Joint pain, swelling, or stiffness, Migratory joint pains, Muscle pain or cramps, Body stiffness when awaking

Neurological System: Burning/stabbing sensations in the body, Burning in feet, Spinal Pain, Neuropathic Pain, Numbness in body, Tingling, Pinpricks, Numbness in face,

Nervous System: Tremors, Dysautonomia,

Head, Face and Neck: Headache, Neck Stiffness, Facial paralysis (Bell’s palsy), Tingling of nose, cheek, or face, Twitching of facial/other muscles

Respiratory/Circulatory Systems: Heart palpitations, Heart block, murmur, Chest Pain, Irregular Heart Beat, Shortness of Breath

Psychiatric Symptoms: Mood swings, Anxiety, Personality changes, Feeling as though you are losing your mind, Depression, Hallucinations, Suicidal Thoughts-Ideations, OCD, Panic Attacks, Delirium, Autism-Like Syndrome, Mania, Delusions, Rage, Irritability, Agitation.

TREATMENT

Chronic Lyme is difficult to treat. This is not only due to its stealthy constitution, but because Lyme is not the only thing 99.9% of people are dealing with. While Lyme Disease itself can cause debilitating symptoms and wreaks havoc drilling within the body, it needs to be understood why your body is reacting the way it is. Many people have Lyme and don’t know it, similarly it doesn’t cause any discomfort or reasons for them to be concerned.

I carried Lyme practically my entire life, but it wasn’t until I had my first flu shot & got exposed to mold that my body shut down and the Lyme took over. Meaning, it waits until the opportune time – when your total body burden is peaked and overflowing.

Much of what we have been taught & experienced with medicine and health is so departmentalized that we have to go back and relearn that the systems all synergistically work together, each part affecting the other, sometimes to our detriment.

When I spoke about bio-individuality earlier in this article, that plays heavily into understanding how Lyme & co-infections will act within your body. Your immune systems strength, the amount of inflammation you have, your mitochondrial & cellular health, the autonomic nervous system, your detoxification pathways, gut microbiome, epigenetics, your environment, nutrient levels, etc. All of these things need to be evaluated before you can have success with treatment.

While western medicine has it’s place, and I appreciate the people who work hard within it’s practices, it’s concepts don’t apply when it comes to Lyme Disease, it’s co-infections and the new chronic illnesses of this decade. This is one reason why people do not have any progression treating the disease. We have been indoctrinated to believe that taking a pill to kill is the answer for mostly all of our illnesses & symptoms. While antibiotics, antifungals, & other pharmaceuticals have a role and are necessary for some people, the percentages of people that are in remission solely by taking them is very low to none.

Working with a experienced practitioner to peel back the layers of the onion, so to speak, is where I like to point people. The disease is complex, and if you are just stepping into this, there is no simple answer unless you are dealing with acute Lyme, which above I listed the most common protocols.

Treatment for chronic Lyme varies, and many would argue that their way, is the way. Its a personal decision, and one that as a health coach I try to help empower my clients with enough information that they can make the best decision for their path to wellness. Their is no cure for Lyme, only balancing the body back to its stasis of harmony.

BUILDING YOUR WELLNESS TEAM

Finding someone to help you do this will be a challenge, however it is possible. Due to the recency of Chronic Lyme & it’s environmental factors which have only surfaced in the past decade, and from the divide in medicine & beliefs as well as the lack of experience in this field, there is not going to be an overflowing selection in your home town. Chances are you will have to travel, or may even decide that treating remotely via skype is a better option for you.

The options that fit the best description for this will be a functional medicine practitioner, a naturopath or functional/environmental health coach. The doctors that treat Lyme are called LLMD’s or Lyme literate medical doctors. They do not take insurance as there are no ICD-10 health codes for chronic Lyme so treatment will be an out of pocket expense as I explained above.

UNDERSTANDING THE TOTAL BODY BURDEN

As I spoke of earlier, most people have multiple sub-root issues which affect the total body burden and need to be carefully evaluated and treated as well, so choosing someone who understands that, and bridges that knowledge into protocols is important.

Healing is a lifestyle that took me a period of time to understand and accept. In our new toxic age, preventative measures, a comprehensive plan and modification of habits will be crucial for progress.

People who have Lyme often have the been affected by the following issues:

  • Mold toxicity, CIRS and many other toxins present in buildings that have sick building syndrome (have been damaged by water through flooding, roof leaks, plumbing leaks, etc.)

  • Infections or viruses such as Epstein-Barr virus, Cytomegliovirus, HHV6, Retroviruses, Chlamydia Pneumonae, parasites, small intestinal bacterial overgrowth (SIBO), Candida

  • Asbestos, lead, fiberglass, and other toxic substances found in many buildings

  • Formaldehyde, flame retardants, and toxic chemicals often present in drywall, carpeting, flooring products, OSB board (used in construction), insulation, glues, sealants and other products used to build homes and offices. Many toxic chemicals also are found in mattresses, upholstered furniture, clothing and other products.

  • Glyphosate, pesticides, herbicides & chemicals used in fertilizers that also contain high amounts of heavy metals

  • Pesticides, hormones, mycotoxins, arsenic, and other irritants found in produce, grain, meat, fish and other foods

  • Phthalates and parabens found in cosmetics and personal care products

  • RF, EMF, and microwave radiation

  • Cyanobacteria and other biotoxins present in many lakes, rivers, ponds, and in soil

  • Amalgam dental fillings

  • Pharmaceutical drugs, vaccines, antacids & other prescriptions that contain: Aluminum, mercury, & other heavy metals

  • Industrial air pollution & vehicle exhaust

  • Cosmetics & beauty products that contain numerous heavy metals & toxic chemicals

  • Public water that contains lead, fluoride & other sediments, heavy metals & toxicity

Everything is connected. For example, a person like me who has CIRS and Lyme, I am now more sensitive to chemicals and EMF’s. I now have MCS (multiple chemical sensitivities) and EMF sensitivity. We have to use toxin-free everything because my body reacts to soaps, products, makeup, etc. I also can’t talk on my phone too long, my hands start to burn, and ache. Similarly a person with Lyme may not realize they react to mold and have become more sensitive to water damaged buildings and the toxins within them.

It is thought that many illnesses may be caused or exacerbated by a person’s exposure to Lyme & environmental toxins. These include:

  • Alzheimer’s disease and dementia

  • Epilepsy and other seizure disorders

  • Dysautonomia such as postural orthostatic tachycardia syndrome (POTS)

  • Parkinson’s disease

  • Autism & Autistic spectrum disorders

  • Depression, anxiety and other mental illnesses

  • Autoimmune diseases

  • Cancer

  • Diabetes (Type 2) and metabolic syndrome

  • Obesity

  • Cardiovascular disease

  • Celiac disease, and other food sensitivities

  • Leaky gut syndrome (LGS) and dysbiosis

  • Asthma and allergies

  • PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)

  • Pneumonia and COPD (chronic obstructive pulmonary disease)

  • Psoriasis and eczema

  • Rheumatoid Arthritis

If you would like to learn more about mold toxicity, CIRS and environmental illness, we have a wealth of information here.

HEALTH COACHING

I am currently finishing school for my certification in functional health coaching, and found my passion in helping others with these illnesses. I have spots open for a select few clients so if you are interested, contact me for a free 15 minute consultation and we can see if I fit your needs.

References: 2019, Global Lyme Alliance, Dr. Bill Rawls, Dr. Jay Davidson, Dr. Dietrich Klinghardt. Thank you for all you do!

PJ HARLOW

PJ serves as the Founder of PJHW after transitioning a 20 year career as a Executive & Customer Success Manager for one of the largest, Fortune 500, Finance & Insurance company’s in the U.S.

Ms. Harlow has worked intensively with young women who have struggled with trauma, eating disorders, substance abuse & body dysmorphia. Centered on coping mechanisms & self love she was effective providing support & resources to assist these women in both crisis & daily life situations. A big part of her coaching was applying integrated nutrition & fitness to regain focus into a form of moving mindfulness.

Ms. Harlow has multiple certifications & has completed professional coursework in Functional Medicine and Clinical Diagnosis & Treatment of Lyme Disease w/other tick borne Illnesses. She has studied extensively with regard to EAI- Environmentally Acquired Illnesses, CIRS, Mold & Heavy Metal toxicity, Detoxification, & much more.

PJ is the resident Environmental Health Coach for PJHW as well as the primary author of the blog. She is working continuously to further advance her professional education & certifications.

PJ herself is a EAI warrior, wife & mother to 4 children, 3 of which have struggled w/ Lyme & co-infections, CIRS, Asthma, Allergies, & a mixture of MCAS, PANS, Dysautonomia, GAD, & other sensory disorders.

___________________

**Comment**

This is one of the most thorough, honest, accurate, and intimate articles I’ve read. A big thank you to PJ Harlow for writing this and sharing it with others.

Biological Warfare Experiment on American Citizens Results in Spreading Pandemic

Biological Warfare Experiment on American Citizens Results in Spreading Pandemic

CitizensAlert_Bob13

Much of the following information is taken from the paper written by Jerry Leonard in the above link and is a valuable source of information regarding the way Lyme/MSIDS has been handled.

Leonard makes a case that Lyme (a spirochetal disease) is part II of another spirochetal disease (syphilis) experiment known as the Tuskegee experiment. 

The degree to which Borrelia infections such as Lyme disease affects the readiness status of American troops is an ongoing area of government study. (American soldiers were even infected with relapsing fever Borrelia through injections and tick bites in international experiments to understand the transmission of Borrelia diseases. 50) But the truth has been actively obscured from the public’s view, much like the extent of the national epidemic and its premeditated nature.

The benefits of Lyme as a bioweapon are delineated by researcher Mark Sanborne:

“Lyme’s ability to evade detection on routine medical tests, its myriad presentations which can baffle doctors by mimicking 100 different diseases, its amazing abilities to evade the immune system and antibiotic treatment, would make it an attractive choice to bioweaponeers looking for an incapacitating agent. Lyme’s abilities as ‘the great imitator’ might mean that an attack could be misinterpreted as simply a rise in the incidence of different, naturally occurring diseases such as autism, MS, lupus and chronic fatigue syndrome (ME). Borrelia’s inherent ability to swap outer surface proteins, which may also vary widely from strain to strain, would make the production of an effective vaccine extremely difficult. … Finally, the delay before the appearance of the most incapacitating symptoms would allow plenty of time for an attacker to move away from the scene, as well as preventing people in a contaminated zone from realising they had been infected and seeking treatment.”(58)

Leonard asks an important question:

Is the ongoing effort behind treatment denial of Lyme disease allowing the government to conduct another long-term experiment on the public with a hidden agenda of biological warfare? 63 One which allows them to monitor the various chronic symptoms caused by such disabling agents in an untreated public, while generating a demand for vaccine research against them? If so, how much bad publicity will be required to shut this multi-decade experiment down?

Telling quote:

“So far, we are keeping the known positive patients from getting treatment.” — Comment On Tuskegee Experiment, by U.S. Public Health Service Official

In other words, this tactic was used before by our very own government.

Leonard asks the crucial question:

Why would the medical establishment actively prevent doctors from effectively treating Lyme disease, and help destroy doctors who treat it?

His answer:

I believe the CDC is conducting Phase II of its Tuskegee Experiment on an expanded scale for the same reason it conducted Phase I—the development, testing and marketing of pharmaceutical products to treat only symptoms of the disease. In fact, the treatment denial of the Phase I Tuskegee Experiment has become an everyday occurrence for thousands of Lyme patients because the experiment has become institutionalized within the mainstream medical system through the creation and enforcement of treatment guidelines to justify treatment denial. For added protection, the CDC is conducting this experiment in long-term treatment denial through the biowarfare infrastructure as a biodefense exercise.

Medical literature explained away the reason for not treating syphilis patients by stating long-term studies had to occur to understand the pathogenesis of the disease before an effective program could control it.

Leonard states that Lyme disease creates a similar yet different multi-staged, chronic infection and that a similar experimental rational could be used to in efforts of creating treatments and vaccines.

Author Dr. Colin Ross obtained FOIA documents on unethical government experimentation and noted that:

“The Tuskeegee Syphilis Study was eventually shut down in 1972 because of the efforts of an investigative journalist. There is no evidence to suggest that the government or the medical profession had any intention of closing the study as of 1972.”

And here we are today, nearly 50 years after a horrific 40 year human experiment, which allowed patients to suffer and die while the government calmly observed the tragedy unfold. And, bizarrely, there is a current inquiry into the Lyme/MSIDS debacle due to the efforts of another investigative journalist: https://madisonarealymesupportgroup.com/2019/07/16/house-orders-pentagon-to-say-if-it-weaponized-ticks-and-released-them/

https://madisonarealymesupportgroup.com/2019/05/01/interview-with-kris-newby-bitten-the-secret-history-of-lyme-disease-biological-weapons/

We find ourselves in another 40 year experiment where the medical establishment and our government calmly observe us – denying us, refusing to even test and treat us, and worse yet – telling us it doesn’t even exist.

Doctors who attempt to treat this appropriately are singled out:  https://madisonarealymesupportgroup.com/2018/12/15/everything-about-lyme-disease-is-steeped-in-controversy-now-some-doctors-are-too-afraid-to-treat-patients/

https://madisonarealymesupportgroup.com/2017/06/24/llmd-daniel-cameron-disciplined-by-ny-medical-authorities/

My own doctor went through this as well:  http://www.dailykos.com/story/2012/01/29/1059800/-Wisconsin-Lyme-doctor-gets-reprieve

In this Tuskegee slideshow, by Kim Augustine, please note slide #8 that the “participants” were told they had “bad blood.” Could this be the equivalent of Lyme patients all being told they have MUS (medically unexplained symptoms) which in the psychiatric world means you are psychosomatic?  https://www.slideshare.net/kaugustine66/tuskegee-experiement-power-point

Please watch Gene Shapiro accuse patients suffering with Lyme symptoms of MUS:  https://madisonarealymesupportgroup.com/2019/06/11/dr-eugene-shapiro-medically-unexplained-symptoms/  He urges the medical community to develop ways to prevent “healthcare-seeking behaviors” by parents who believe their children may have Lyme disease.

Also, please remember that Gary Wormser, the lead author on the IDSA Lyme Guidelines not only has conflicts of interests, but travels around the country giving lectures on biological warfare treatments. Coincidence?

https://madisonarealymesupportgroup.com/2017/12/02/please-sign-petition-get-wormser-out/

https://sites.google.com/site/jerryleonard999/home/gary-wormser-national-security-menace-and-traitor-to-humanity You have to scroll down a ways, but you will discover Wormser authored, “How Germs Become Weapons: Recognizing Agents – Treating Patients.” For the relapsing anthrax bioweapon he recommends long-term combination antibiotic therapy, yet denies this very treatment for relapsing Lyme/MSIDS. He was also at ground zero for HIV, defining treatments for the AIDS epidemic, which occurred at the same time as the Lyme/MSIDS debacle. You can read about Steere and other biowarfare details within this link as well.

For a complete chronology of events: https://galacticconnection.com/lyme-disease-mycoplasma-and-bioweapons-development-timeline/? This link also exposes DOJ Special Investigator John Loftus’ discovery in America’s Nazi Secret,” that files on Erich Traub showed he was engaged in using ticks as a medium to spread disease:

“Even more disturbing are the records of the Nazi germ warfare scientists who came to America. They experimented with poison ticks dropped from planes to spread rare diseases. I received some information suggesting that the U.S. tested some of these poison ticks on the Plum Island artillery range off the coast of Connecticut during the early 1950’s. I explored the old spies’ hypothesis that the poison ticks were the source of the Lyme Disease spirochetes, and that migrating waterfowl were the vectors that carried the ticks from Plum Island all up and down the Eastern Seaboard. Most of the germ warfare records have been shredded, but there is a top-secret U.S. document confirming that “clandestine attacks on crops and animals” took place at this time. The Lyme Disease outbreak in America was monitored secretly under the cover of a New England health study….sooner or later the whole truth will come out, but probably not in my lifetime. Years from now historians will have to put the secret files into context of events, a job akin to passing dead leaves back on the tree in right order…..” John Loftus

Annie Jacobsen in the groundbreaking “Operation Paperclip” discloses that a Nazi outpost on the island of Riems, (a Nazi biowarfare warfare lab) was managed by Otto Waldmann with assistant Erich Traub. Traub spent several years in America doing research at the Rockefeller Institute and even became a staff member for medical research. He was a virologist, microbiologist, and professor of veterinary medicine, and was an expert in Newcastle disease (contagious bird flu) that was rumored to be weaponized. Traub cited loyalty to the Reich and chose to return to Germany rather than continue his research in America.  He eventually returned under the Operation Paperclip Project, a secret program of the Joint Intelligence Objectives Agency largely carried out by Special Agents of Army CIC, in which more than 1,600 German scientists, engineers, and technicians, were recruited in post-Nazi Germany and taken to the U.S.

Jacobsen states Traub was experienced in the illegal trafficking of deadly pathogens and that the FBI watched him but what they learned remains classified as of 2013.  She also states the Pentagon was able to keep the weapons program a secret from Congress by keeping everything classified.

For more: https://reconsider.news/2018/05/15/deadly-secrets-plum-island-us-animal-disease-center/

The evidence continues to mount.

64357008_10217935576008450_2638357839671721984_n

Please note ALL at one time were CDC employees, working for our government.

“I am Barbara Johnson. I am a biochemist by training and I am speaking today on behalf of the Centers for Disease Control and Prevention concerning serodiagnosis of Lyme disease. Specifically, my statement is in support of (the) IDSA recommendation in the guidelines to use two-tiered serology (an ELISA screening test followed by Western Blots if ELISA positive) to support the diagnosis of Lyme disease in patients who have manifestations other than acute erythema migrans.– IDSA Lyme Disease Review Panel Hearing, July 30, 2009

For more dirty deeds done dirt cheap: ConflictReport

For more: https://madisonarealymesupportgroup.com/2019/07/21/got-15-minutes-the-officially-ignored-link-between-lyme-plum-island/

Will our government own up? Time will tell. Meanwhile, the bodies continue to pile up.

 

 

 

The Worst Thing About Lyme Disease Is What It Does To Your Mind

https://folks.pillpack.com/the-worst-thing-about-lyme-disease-is-what-it-does-to-your-mind/

The Worst Thing About Lyme Disease Is What It Does To Your Mind

Lyme disease doesn’t just affect your body. It can also cause paranoia, anxiety, depression, and sudden flashes of inexplicable rage.

My friend and I are walking to dinner when it hits. My jaw clenches, my hands curl into fists, and it feels like my head will explode. My mind fills with overwhelming rage over absolutely nothing and everything remotely annoying that’s ever happened to me. I try to distract myself by listening to my friend, but I can’t hear her over the cacophony of my racing thoughts. Intrusive violent fantasies take over. I resist the urge to stomp my feet and scream. There’s not much that I can do at this point. I just tell myself it’ll pass… and a few minutes later, it does.

Rage is one of many mental health issues people with Lyme Disease face. A study in Neuropsychiatric Disease and Treatment found that 68 percent of Lyme patients experienced explosive anger, homicidal thoughts, and/or suicidal thoughts. Other studieshave found that 54 percent of Lyme patients suffer from irritability or mood swings, 23 percent have anxiety, 21 percent experience depression, and 13 percent meet the criteria for obsessive compulsive disorder.

I’m one of those people. And I am far from alone.

Christina Giaquinto experienced extensive anxiety after being diagnosed with Lyme disease. Credit: Christina Giaquinto

The Mental Cracks Of Lyme Disease

Kerri Lynn Neugebauer, a 47-year-old marketing and talent director in Pittsburgh, experienced intense paranoia while she was suffering from Lyme. “I thought I was being followed when I was out,” she remembers. “I would wake up in the middle of the night clawing at the walls because I thought I was trapped. And every time we came home from being out, I thought someone was in the house.”

For Kirsten Stein, a 49-year-old Bay Area Lyme Foundation board member in California, the primary mental health symptom was anxiety. “I have been flying in planes since I was 12 years old, yet while experiencing symptoms immediately prior to being diagnosed, I had a panic attack on airplane out of the blue,” she says.

“I would wake up in the middle of the night clawing at the walls because I thought I was trapped. “

“As someone who has experienced anxiety in the past, I can always tell the difference when it is ‘Lyme anxiety,’” says Christina Giaquinto, a 28-year-old life coach in New Jersey. “When someone experiences [non-Lyme] anxiety, it is because they are thinking of something that causes a physical reaction. With Lyme, it is the complete opposite. It attacks without cause. You feel very trapped because there is nothing you can do to fix it since there is no cause.”

Giaquinto also experienced depression and derealization from Lyme.

“I constantly felt like I was in a video game watching everyone else live,” she says. “It took away my sense of self.”

Why Lyme Causes Mental Health Problems

Understanding of the mechanisms by which Lyme causes these problems is still in its infancy, but what do know that the bacteria that cause Lyme can get into the central nervous system, and inflammation in the brain and throughout the body can lead to mental health symptoms, says psychiatric physician Rupali Chadha, MD.

Because Lyme infects the white blood cells of the immune system, it can also throw off your gut and brain microbiome, which can in turn lead to imbalances of neurotransmitters and hormones, says Bill Rawls, MD, an integrative health expert on Lyme and other chronic illnesses. “While we don’t have definitive data on a cause or prevalence, we do see patients with Lyme disease in psychiatrists offices,” says Chadha.

“Feeling like your brain is on fire is bad enough, but not being understood by the medical profession or by the people around you makes everything 10 times worse,” says Rawls.

Mental illness associated with Lyme can come not just from the Lyme itself but also from certain treatments, as well as from knowing you have a chronic and difficult-to-treat illness. Mike Robinson, a 53-year-old cannabis researcher in Santa Barbara, developed depression and anxiety as a result of receiving a Lyme diagnosis and says it worsened after antibiotic treatment. He also chalks his mental health struggles up to “the way it makes your body feel, the neuropathic pain it causes, and the stigma about it.”

People with neurological Lyme disease often test negative for Lyme, says Wendy Adams, Research Grant Director at the Bay Area Lyme Foundation. This means that instead of receiving Lyme treatment, they’re frequently given labels such as OCD or schizophrenia without receiving help for the underlying issue.

Mike Robinson, a 53-year-old cannabis researcher in Santa Barbara, developed depression and anxiety as a result of receiving a Lyme diagnosis.

What To Do When Lyme Affects Your Mental Health

If you’re struggling with mental health symptoms that may be due to Lyme, Chadha recommends seeing a physician rather than just a therapist about it, since treatment will require you to get to the physical root of the issue. “Therapy may be very useful and may be recommended and added,” she says. “But if someone has Lyme disease and develops psychiatric symptoms, they need to see if physician to see if they require biological treatment i.e. medication.”

Rawls usually recommends antimicrobial herbs to patients dealing with mental illness and other neurological symptoms of Lyme, since antibiotics aren’t always able to kill Lyme in the central nervous system and herbs can also help restore immune function. The herbs he uses to heal the nervous system include berberine, andrographis, cat’s claw, Japanese knotweed, garlic, and sarsaparilla. “Healthful diet, clean environment, low stress, and an active lifestyle are all essential for overcoming chronic Lyme disease,” he says.

Even if Lyme sometimes takes over my mind, it doesn’t have to take over my life.

In the meantime, be as patient with yourself as you can. Due to the myth that mental illness is within your control, it can be tempting to blame yourself, especially with symptoms like rage that people have trouble sympathizing with. If Lyme causes you to engage in behavior you wouldn’t otherwise, Rawls suggests forgiving yourself, as you’re dealing with an illness, and focusing on doing better next time. Reducing your stress and gaining as much control over your life as you can will help, he says.

Though my journey with Lyme isn’t over yet, my rage has gotten easier to deal with because I’ve learned a new approach to it. Instead of just getting more mad about the fact that I’m mad, I validate how I’m feeling and try to do something nice for myself, like getting something to eat or drink or lying down and resting. I remind myself that it’ll pass, and if it comes again, it will pass again after that. Even if Lyme sometimes takes over my mind, it doesn’t have to take over my life.

__________________

**Comment**

Please keep in mind that although Dr. Rawls is a doctor, he’s now in the business of selling herbs.

Regaining Control Of Your Day, Life – Why Agency is Important For Lyme Warriors

https://globallymealliance.org/regaining-control-day-life-agency-important-lyme-warriors/

Copy-of-MyLymeLife_2-4-1


by Jennifer Crystal

Agency—or, having a voice, having the power to make free choices about issues related to you or your body—has been a big buzzword in the news lately. I’ve been thinking about the word in the context of my own life.

For nine months, I was in a serious relationship with a man who seemingly understood and supported my needs as a chronic Lyme patient. And then, suddenly and without warning, I wasn’t. He decided he was done and simply informed me of his choice; I had no say in the matter.

Had the breakup happened mutually, or at least over time—with the discussion and effort we’d promised each other—it still would have been difficult, but at least I would have had some agency. And for a patient of chronic illness, that’s not a small thing.

Having the bottom drop out on my personal and emotional life was a sad reminder of the ways it had dropped out on me physically, many times. The chronically ill, and people who suddenly become sick or injured, are stripped of agency. It happens when we get sick without warning, when we can’t control how or if we’ll get better, when we’re dismissed by medical professionals. As a result, it’s that much more frustrating when we can have a say about something, but aren’t granted it.

Everyone deserves a voice. I learned this years ago as a summer camp counselor. During counselor meetings we would discuss issues campers were having due to behavioral challenges. A wise colleague taught us that every child needs four things: love, safety, fun, and power. When one of those basic needs is threatened, kids act out. I readily understood why children need love, safety, and fun. But I realized they need power, too, because they are often told what they can and cannot do; they don’t feel like they have a say over their lives. Giving them agency makes them feel more in control. Campers were less likely to break cabin rules if they helped create them.

When a Lyme Literate Medical Doctor (LLMD) finally put the pieces of my medical puzzle together and made an accurate diagnosis of Lyme disease—in addition to the co-infections babesia and ehrlichiaI at last felt I was heard and validated. Treatment was long and arduous and I had little control over how I felt day to day, but as I regained strength, I also regained agency. Over time, I could rely on my body more. I eventually knew when I would have good energy and when I wouldn’t, and learned habits to promote the good energy. I learned to speak up for my needs. Tick-borne illnesses were no longer completely running my life.

Then the bottom dropped out again: I relapsed. I fell into a pit of despair, not only because I was physically back at ground zero, but because I’d had no say in getting there. Sure, I’d taken on a lot and gotten overly stressed, factors that I now know can play a role in relapse. But the relapse itself was not my doing. That was up to the spirochetesthat ran rampant in my body. I hated that I was once again at the whim of my illnesses, not of my own free will. I couldn’t work, live independently, exercise or do anything I wanted to do, and I railed against that loss of freedom.

Cognitive behavioral therapy helped me to take control over little things, even though so much was out of my hands. I had no say as to whether the antibiotics would work, how long it would take for me to get well, or if I even would. But I could control choices that would help my chances of my achieving remission. I could parse out my energy. I could limit screen time that riled up my neurological symptoms. I could eat healthy foods. I could say no to going somewhere or doing something when I didn’t feel well enough to do so.

And I could say no even if I did feel well enough to do something. One night during my recovery, my parents invited me out to dinner. It was a sweet and generous offer. They were surprised when I declined, because I seemed to have good energy that night. Why wouldn’t I go out if I could? But I didn’t want to go out to dinner. I wanted to stay home and have a little time to myself, maybe call a friend. Making decisions about what I wanted to do, instead of feeling like I had to do something just because I could, was an important way of maintaining agency.

We can’t always guard against the bottom dropping out in life. But sick or healthy, it’s important that we allow ourselves agency over those small things we can control. And it’s especially important for us to respect others enough to give them a say over matters that pertain to them or their bodies. We all want to take part in our own lives, not have life just happen to us. Everyone deserves that power!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com

 

 

 

A Man Went to the Optometrist With Something Stuck in His Eye. The Doctor Pulled Out a Tick

https://www.cnn.com/2019/07/16/us/kentucky-man-tick-in-eyeball-trnd/index.html

A man went to the optometrist with something stuck in his eye. The doctor pulled out a tick.

Prater didn’t originally think anything of the irritation before the diagnosis. It must’ve been the sawdust that got caught in his eyeball, he thought, and he could easily flush it out later.
Flush he did, but the discomfort persisted. Prater begrudgingly saw an optometrist who broke the news — a deer tick had taken up residence in his cornea.
Before Prater could wrap his head around it, the doctor numbed his eye and plucked the pest out with tweezers.
The tick made a “little popping sound” as it was pulled out, he said.
The doctor sent him off with antibiotics and a prescription for steroid eye drops. And Prater left with one less living thing sharing his body.

Forget why ticks are terrible? Let’s review

When it comes to finding new ways to freak people out, the bloodsucking disease-spreading parasite just won’t quit.
Prater’s tick-in-the-eye isn’t even the first reported: an eye doctor recounted yanking a live tick out of a man’s eye in a 2011 report from the American Academy of Ophthalmology.
And they’re not partial to eyeballs, either. A 9-year-old boy in Connecticut returned from a romp at the playground to find a tick embedded in his ear, feeding on the blood from his eardrum tissue. If it hadn’t been removed, doctors said the tick’s tissue-munching might’ve impaired his hearing.
Oh, and researchers recently discovered that a species that has learned to clone itself and is predicted to “soon occupy a large swath of eastern North America.”
In short: thank you, ticks, for absolutely nothing.
___________________
For more:
So, here’s the question to entomologists who claim ticks don’t drop from trees…..how did this man get a tick in his eye while cutting a tree?
https://madisonarealymesupportgroup.com/2017/07/13/tv-anchor-speaks-out-about-lyme-disease/  I met Mike in person and he stands by his story that he was bit by a nymphal tick that dropped from a tree onto him when he was at a garden party on a deck.
Again, I’ve personally had ticks on my basement screens after a local farmer cut grass and blew them toward my house. Some even made it inside onto my basement walls, where they were promptly crucified.

Seronegative Chronic Relapsing Neuroborreliosis

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24834661?

Seronegative Chronic Relapsing Neuroborreliosis

JUL 17, 2019 — 

The letter below was forwarded to the Tick-Borne Disease Working Group as a follow-up to the first letter sent to Auwaerter which can be viewed here: https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24825076

Lyme Bumper Stickers (Public Service Announcement)
https://www.ebay.com/itm/123659578861

WAKE UP AMERICA!

 

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, chris.smith@mail.house.gov
Cc: (98 Undisclosed recipients)
Date: July 17, 2019 at 11:49 AM
Subject: Re: Lyme disease often misdiagnosed, resulting in unnecessary antibiotics

To the Tick-Borne Disease Working Group,

Please see my second letter below (and attachment) to Dr. Auwaerter referencing Seronegative Chronic Relapsing Neuroborreliosis. 

-Carl Tuttle

2nd Letter to Auwaerter:

——- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: Paul Auwaerter <pauwaert@jhmi.edu>
Cc: psax@bwh.harvard.edu, jli@bwh.harvard.edu, cbusky@idsociety.org, tkobaya5@jhmi.edu, jmstiglich@healio.com, infectiousdisease@healio.com
Date: July 17, 2019 at 11:41 AM
Subject: Re: Lyme disease often misdiagnosed, resulting in unnecessary antibiotics

Lyme disease often misdiagnosed, resulting in unnecessary antibiotics
Kobayashi T, et. Open Forum Infect Dis. 2019;doi:10.1093/ofid/ofz299.

July 17, 2019

The IDSA Foundation
1300 Wilson Boulevard Suite 300
Arlington, VA 22209
Attn:  Paul Auwaerter, vice chair of the IDSA Foundation

Dear Dr. Auwaerter,

While you contemplate your response to my inquiry requesting grant money for the purpose of proficiency testing of direct detection methods for Borrelia (DNA Sequencing). I would like to point out the following 1995 case study from Stony Brook Lyme Clinic.

I understand the patient received thirteen spinal taps, multiple courses of IV and oral meds, and relapsed after each one, proven by CSF antigens and/or PCR. The only way this patient (said to be a physician) remained in remission was to keep her on open ended clarithromycin- was on it for 22 months by the time of publication.

Seronegative Chronic Relapsing Neuroborreliosis.  
https://www.ncbi.nlm.nih.gov/pubmed/7796837

Lawrence C.a · Lipton R.B.b · Lowy F.D.c · Coyle P.K.d

aDepartment of Medicine, bDepartment of Neurology, and cDivision of Infectious Diseases, Albert Einstein College of Medicine, and dDepartment of Neurology, State University of New York at Stony Brook, New York, NY., USA

Eur Neurol 1995; 35:113–117  (DOI:10.1159/000117104)

Abstract

We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.

________________________

This is not the only case where a negative antibody response was identified. In fact I have attached the following document referencing:

Seronegativity in Lyme borreliosis and Other Spirochetal Infections

https://www.dropbox.com/s/3d6m45jzlhhwalu/Seronegativity.pdf?dl=0

“If false results are to be feared, it is the false negative result which holds the greatest peril for the patient.”

Your publication in Open Forum Infectious Diseases and the Healio article is suggesting that a patient couldn’t possibly have Lyme if they don’t test positive on the outdated two-tier testing algorithm. This is misleading to the reader and the medical community.

Please see the following article regarding the difficulty in diagnosing Lyme disease:

The Staggering Cost of Lyme Disease and Other Tick-Borne Illnesses

PR Newswire July 10, 2019

https://finance.yahoo.com/news/staggering-cost-lyme-disease-other-123600606.html

According to the survey:

-45% of patients needed more than three years to obtain the proper diagnosis

-65% of patients were forced to quit a job or cut back on their hours due to their symptoms

-24% of patients saw more than ten doctors before receiving a proper diagnosis

-86% of patients suffer from long-term side effects from not having been diagnosed sooner

Researchers hope that the survey will help educate the public on the risks associated with delaying testing or relying on old testing techniques. “In our view, many patients are missed because much of the testing recommended by general practitioners is based on technology from 25 years ago,” says Dr. Shah. “Science has progressed, and we can now give patients a much more accurate diagnosis than was available years ago.”

_________________________________

Dr. Auwaerter, how many Lyme patients were turned away from your clinic and left untreated because they did not test positive through unreliable serology?

It is time to move forward and find a better approach. Please stop this nonsense.

Sincerely,

Carl Tuttle

Lyme Endemic Hudson, NH

____________________

**Comment**

One of the best quotes on abysmal serology testing:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/

“Setting arbitrary level of antibodies to diagnose a disease that has not been amenable to Koch’s postulates seems open to question.  By the same token, ignoring antibody results unless they meet arbitrary levels seems suspect. The vast majority of patients in this series showed some WB antibody exposure, but many did not meet the arbitrary limits set….in our present state of knowledge, the diagnosis of chronic Lyme disease is a clinical one.  Many of the patients in this series have suffered serious ‘hurts’ when they have been told that they could not have LD because their WB did not meet arbitrary limits.”  – Dr. Waisbren (RIP)

 

Symptom Resolution in Pediatric Patients With Lyme Disease

https://www.ncbi.nlm.nih.gov/pubmed/30060012/

2019 May 11;8(2):170-173. doi: 10.1093/jpids/piy067.

Symptom Resolution in Pediatric Patients With Lyme Disease.

Abstract

We performed a retrospective study to determine the time frame for symptom resolution in 78 pediatric patients hospitalized with laboratory-confirmed early-disseminated or late-stage Lyme disease. The vast majority of the patients improved promptly after receiving appropriate antibiotics. Patients with a longer duration of arthritis before the institution of therapy experienced a longer time to recovery.

________________

**Comment**

The difference between a prospective study vs a retrospective study:  https://www.statsdirect.com/help/basics/prospective.htm

Prospective:  A prospective study watches for outcomes, such as the development of a disease, during the study period and relates this to other factors such as suspected risk or protection factor(s). The study usually involves taking a cohort of subjects and watching them over a long period. 

Retrospective:  A retrospective study looks backwards and examines exposures to suspected risk or protection factors in relation to an outcome that is established at the start of the study. Most sources of error due to confounding and bias are more common in retrospective studies than in prospective studies. You should take special care to avoid sources of bias and confounding in retrospective studies.

In this retrospective study, there is going to be bias as they again use “laboratory-confirmed” testing, which is going to be that same-o-same-o CDC two-tiered serology that misses over half of all cases.  A chunk of patients are omitted right from the get go.

The “vast majority” of patients improving, again is a biased statement as a multitude were excluded from the study. And while it’s true that many improve promptly with treatment, treatment failures have existed from the beginning of time: https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

The only redeeming statement is that those with longer duration of arthritis before treatment required a longer recovery.  Unfortunately, due to bias, so many patients are omitted, so many symptoms were not accepted, and therefore this study only regurgitates previous studies done by The Cabal:  https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/

Many scientists have been ostracized for not following the party line.

https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/