https://www.envita.com/lyme-disease/missing-the-mark-with-chronic-lyme-disease

Missing the Mark with Chronic Lyme Disease

Missing the Mark with Chronic Lyme Disease

It is important as one of the nation’s leaders in chronic Lyme disease complex, and after nearly two decades of helping patients, to point out how the CDC has missed the mark entirely with their current study and publication on prolonged treatment for Lyme disease. Unfortunately this information is quite literally too little and too late. Too little, because it is old information and too late, because it offers nothing new to help the many patients that have been suffering. On its face, this small study is designed to discourage physicians from helping their patients.

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Chronic Lyme disease Complex, Not Just Chronic Lyme

Patients with chronic Lyme never have just the one infection, they have multiple infections that have gone untested and untreated for extended periods of time. Antibiotics are not even effective for many of these infections, such as with viral, fungal, and parasitic infections.

When chronic Lyme disease is mentioned, most often they are actually referring to chronic Lyme disease complex which involves the spirochete which causes Lyme, Borrelia burgdorferi, and also associated co-infections, which enter the body with Borrelia in the initial tick bite: Babesia, Ehrlichia, Bartonella, Rocky Mountain Spotted Fever etc. Chronic Lyme disease complex can also include secondary infections which occur as a result of a compromised immune state. This is important to keep in mind because antibiotics do not work against viral infections and similarly, fungal infections require antifungal medication and so on. The secondary and co-infections must be identified in order for treatment to be effective. This is the number one reason why antibiotics alone cannot be used to treat these patients.

It is important to understand that Borrelia has a number of mechanisms both for evading and distracting the immune system and that Borrelia is capable of burrowing and spreading throughout most of the body’s tissues, including the blood-brain barrier. Antibiotics cannot easily pass the blood-brain barrier which allows borrelia and others infections like babesia to attack the brain and central nervous system unimpeded. Borrelia implants itself in tissues and within individual cells to avoid being consumed and lysed by the immune system. The microbe is also adept at countering the adaptive immune system through constant variation in its surface proteins, or antigens, a feat enabled by its complex single chromosome and its circular DNA plasmids. Usually, by the time the body can create antibodies to target Borrelia, its surface has already changed so much that the new antibodies are no longer effective. In serum, Borrelia has the ability to inactivate C3, a protein marker which would normally trigger the immune response for free floating microbes. When Borrelia does find a place to settle down and multiply, the microbe secretes a protein mesh called biofilm which shields it and its progeny from direct exposure to many antibiotics and other compounds that might otherwise harm the infection. Our team has published on this subject extensively and we have assembled a great deal of information on the biology and survival mechanisms used by Borrelia in our published study Borrelia burgdorferi: Cell Biology and Clinical Manifestations in Latent Chronic Lyme.

While the spirochete Borrelia is responsible for causing primary Lyme disease, it is usually not the only factor to consider when approaching treatment for chronic Lyme disease, or more commonly, Lyme disease complex. When a tick bites, various bacteria and parasites enter the wound besides just Borrelia. These simultaneous infections are called co-infections and can include Babesia, HHV-6, Epstein-Barr, and Rocky Mountain Spotted Fever, just to name a few. These co-infections are able to gain a firmer foothold in the body and potentially become chronic since Borrelia excels at distracting and depressing the host immune system. Secondary infections can also be picked up after the initial bite due to a depressed immune response from the infected person. The result is a condition that is chronic and can linger for months or even years, typically worsening over time without proper treatment.

In our published study, Chronic Lyme Disease Complex and Its Commonly Undiagnosed Primary and Secondary Co-Infections, we discuss the various co-infections which can coincide with Lyme to form Lyme disease complex. The presence of multiple different infections in the body simultaneously seriously complicates any potential treatment as is discussed below. Many of these other infections complicate treatment and increase the risk for auto-immune diseases depending on the patient’s genetic background and can also be a precursor to various cancers. Treating these infections in their totality is essential to full recovery and for the patient to achieve health which is why often antibiotics alone don’t work clinically.

Single Antibiotic Treatments Inevitably Fail against Lyme Complex

The organism Borrelia has multiple strategies for evading, inactivating, and depressing the immune response including the ability to insulate itself inside tissues and biofilm to avoid contact with substances which might kill it, like antibiotics. A critical flaw with the four randomized trials funded by the CDC to study chronic Lyme disease is that they all used a single antibiotic regimen (ceftriaxone) compared against placebo. As well, this is not typically the antibiotic of choice with a resistant chronic Lyme. Patients’ co-infections also need to be identified in a case of chronic Lyme disease complex. Each patient should receive a personalized regimen based on their infection profile, neurological involvement, immune state and genomics. Also, their ability to eliminate toxins from the body should be evaluated.

With the advent of multi-drug resistant (MDR) strains of bacteria, we have found in our clinical experience that chronic Lyme disease will not respond effectively to antibiotic regimens without the addition of MDR blockers. In chronic patients, these infections have often become “super bugs” and blocking MDR is essential. Also, multiple organisms can survive and propagate within biofilm communities formed by the Borrelia bacteria. This enables Lyme disease to essentially shield other infections from treatment. Adding compounds which are designed specifically to break up biofilm is part of the treatment often needed to help chronic Lyme disease complex. The signs and symptoms of chronic Lyme and the ways in which it evades treatment by antibiotics is outlined in our published paper Chronic Lyme Disease: Persistent Clinical Symptoms Related to Immune Evasion, Antibiotic Resistance and Various Defense Mechanisms of Borrelia burgdorferi.

Another factor which is not considered in any of the published studies listed by the CDC is the genetic variation in the patients. Each person responds to medication in a slightly different way. A lot of this variation is due to Single Nucleotide Polymorphisms (SNP’s) which also make up a large portion of physical differences between humans. SNP’s will cause each patient to metabolize drugs at a greater or lesser rate than the “average person” which is an amalgamate based off of data from thousands of studies rather than a patient’s own particular medical history. Treating patients based off national averages is always risky, which is why people continue to have adverse reactions to medications prescribed by doctors. This personalized testing is essential for several reasons. Finding blocked genes and variations in HLA-DR are highly common in chronic Lyme disease patients, which is why this disease is often linked to autoimmune diseases. Knowing how to access a genetic profile in the Lyme patient is essential to better tailor the therapy and support pathways of elimination as dealing with biotoxins and neurotoxins is a complex problem.

Other than the terribly flawed placebo-driven studies released, the CDC would have you believe that treatments for chronic Lyme disease complex are risky and potentially life threatening. Below, we point out that…

Treatments for Chronic Lyme Are Not Any More Dangerous than Other IV Therapies

The CDC listed five cases of patients who sought treatment for chronic Lyme disease and experienced adverse events due to intravenous therapy. While the article seems to imply that the resulting infections were due to the treatment for chronic Lyme disease, an impartial reader will notice that each of these adverse events occurred after the installation of a permanent port, in particular PICC’s or Peripherally Inserted Central Catheter. The PICC is essentially an open line directly into a central artery near the heart and thus is extremely prone to infection when proper care is not adhered to. That is why at Envita, our physicians and specialized nursing staff do not prefer to use PICC’s with our patients. Instead, if the patient is to undergo extended intravenous therapy for their condition, an implanted subcutaneous port is recommended and we work with the best interventional radiologist to ensure safety. The implanted port is a soft silicone tube inserted below the skin into which a small needle can be used to deliver drugs in a similar way to a PICC. However, a subcutaneous port is covered by skin which makes it lower maintenance for the patient and reduces the risk of infection drastically. Our nursing staff works in this environment daily and excel at making sure patients ports are properly accessed and maintained.

Whenever the skin is broken for any reason, however, there is always a risk for infection, even in a hospital with trained staff; and nowadays, you may be at greater risk of a MDR infection while in a hospital than not. This risk is reduced when doctors and staff follow rigid sterilization protocols while adverse events tend to occur when discipline relaxes. While the risk continues over a greater length of time in treating a chronic ailment like Lyme, the risk does not inherently grow as a result of the duration and just like at any medical facility, the risks are managed with careful attention to detail and patient compliance. As a facility with many years of helping patients we rarely see any infections because our team is very good at what they do and our facility is clean.

There is nothing inherent about therapy for Lyme that places patients at greater risk than other kinds of treatment. The antibiotics and nutritional IV, immune modulators, phytotheraptics and other medications that are prescribed are commonly used as required. At Envita, we prioritize attention to detail and patient safety, that’s why we personalize our treatments to each individual patient and are confident in our work and outcomes.

The articles released from the CDC seem to imply also that chronic Lyme disease is not even a real phenomenon at all and insist that other factors must be the cause for the patients’ symptoms. However the CDC is sadly mistaken. In our many years of work with these infections, we know that they are the cause of many auto-immune diseases and neurological problems. The message the CDC wants everyone to take home is to get “real” medical care for your problem, to keep using pain medications, neurological drugs, steroids, and deal with being bed ridden while suffering and letting your health decline because the conventional approach is best. The fact is these infections are real and patients can improve. Real hope exists when you treat the cause of your disease and not just the symptoms.

Yet curiously, the CDC does not deny that these symptoms do exist and cause detrimental harm to people’s lives, up to and including hospitalization for pain, fatigue, and neurological problems. The CDC does not discuss why, if Lyme disease is not a contributing factor to these symptoms, the patients do not recover after traditional therapy and why these cases continue to appear in areas prone to tick infestations. To dismiss out of hand a potential explanation with inadequate evidence is unusually irresponsible of this institution responsible for guarding the public against infectious agents. Therefore, in our professional opinion, it’s too little (not enough helpful detailed information), too late (leaving patients to suffer and still question the cause of their illness). Maybe the CDC should read our published studies and look at our materials to help them better design studies for the future instead conducting studies of which they already know the outcomes only to mislead and misdirect the public. We make this statement as the CDC has had a very untrusting relationship with chronic Lyme disease issue in this country.

However, at Envita, we have taken the time to specialize and gather all available information about Lyme disease and its impact on the body. We are proud and blessed to see our patients return to health and we let our success stories speak for themselves. If you are interested in learning more about the risks of Lyme disease, feel free to give us a call at 1-866-457-9956 and one of our trained patient care coordinators will be more than happy to answer your questions. You can also learn more about Lyme disease at our webpage here.

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**Comment**

Envita puts out great materials and we are the better for them.  I just love how this article essentially states that the CDC is full of crap – something we all know but it’s nice to hear it from professionals treating this complex disease(s).

For more: https://madisonarealymesupportgroup.com/2019/07/31/post-lyme-disease-syndrome-vs-chronic-lyme-disease-syndrome/

https://madisonarealymesupportgroup.com/2019/03/06/top-7-overlooked-factors-for-treating-lyme-disease/

https://madisonarealymesupportgroup.com/2019/02/25/how-lyme-evades-the-immune-system-video/  Great video

This short 7 min. video from Envita explains:The helper T-cells come along and pick up the processed antigen off the dendritic cell and then passes it along to the killer T cells. The Killer T cells follow the spirochete throughout the body and proceeds to destroy healthy tissues and organs because they can’t differentiate between the antigen of the spirochete and the antigen of healthy tissue.As the killer T cells come into contact with the antigen on the healthy tissue it becomes inflamed and destroys healthy tissue and is autoimmune in nature.

 

Interview With Morgellons Expert, Dr. Ginger Savely

November 8, 2019

You have to fast forward to 8:24 for the start.

Thank God for Dr. Savely.  Morgellons patients are believed even less than Lyme disease patients which hardly seems possible yet is. These poor patients are marginalized and told they are making it all up.

For more on Morgellons:   https://madisonarealymesupportgroup.com/2019/05/29/mixed-borrelia-burgdorferi-helicobacter-pylori-biofilms-in-morgellons-disease-dermatological-specimens/

https://madisonarealymesupportgroup.com/2016/06/17/morgellons-believe-it/

https://madisonarealymesupportgroup.com/2019/08/19/interview-marianne-middelveen-on-morgellons/

https://madisonarealymesupportgroup.com/2019/05/19/skin-deep-the-battle-over-morgellons/

https://madisonarealymesupportgroup.com/2016/12/10/morgellons-in-dogs/

https://madisonarealymesupportgroup.com/2016/12/05/new-book-on-morgellons/

https://madisonarealymesupportgroup.com/2016/10/27/research-on-morgellons/

https://madisonarealymesupportgroup.com/2018/11/16/study-strengthens-association-between-tickborne-infections-morgellons-disease/

 

https://globallymealliance.org/the-difficulty-and-importance-of-asking-for-help/

black and white photo of handing holding a wooden heart. The heart is the only part that has color

by Jennifer Crystal

WHY IS ASKING FOR HELP SO HARD? SOMETIMES IT’S NECESSARY, ESPECIALLY WHEN YOU ARE CHRONICALLY ILL

Last winter an acquaintance sustained an injury that made it difficult for her to do any heavy lifting. She managed well enough until a big snowstorm hit her area. Her doctor warned her not to shovel her driveway. But because she lived alone, she was either going to have to ask someone else to shovel or stay snowed in.

The solution here seems simple, but it’s actually quite difficult for anyone who is a natural “helper”. As individuals, we are happy to provide help, but we’re not very good at receiving it, and even worse when it comes to asking for it. To ask for help is to show one’s vulnerability; it is to relinquish some control and recognize one’s own limitations. And that makes a lot of us uncomfortable.

A little more than a decade ago, when I was in the throes of a Lyme relapse, I was in a similar situation. I was living alone in Vermont when the state got walloped with more than two feet of snow. Stuck on my couch, barely able to address my basic needs, I wondered how I would ever dig myself out. I saw neighbors huffing and puffing as they unearthed their vehicles and driveways. I hardly knew any of them. How could I possibly ask them for help?

I resigned myself to staying indoors. But my symptoms worsened, and my doctor said I needed to start a new antibiotic. That meant going to the pharmacy, which meant digging out my car.

I paced around my apartment, trying to figure out what to do. I did not have the physical strength to shovel, no matter how badly I wanted to do it or how hard willed I believed myself. I had no choice but to ask for help; I didn’t like being in that position. It brought on feelings of shame and guilt that have often accompanied me on my Lyme journey.

I called my mom. She lived out of state and couldn’t physically help, but she suggested I call an old college friend who lived in my town.

“I can’t do that!,” I said. “He has a family to take care of! I’m sure he’s busy digging out their own cars. He works full time, too. How can I give him this big task on top of everything else he’s got going on?”

I see now that I was projecting my own fears on the response of my friend. I was trying to think of all the ways my request could be a burden on him, without allowing him a say in the matter. I assumed he’d be annoyed or put out, but those assumptions stemmed from my own discomfort.

In the past, I’d had the experience of asking the wrong person for help. Once during my illness, I planned a lunch with former colleagues. I knew I would have more energy if I didn’t have to drive myself to the restaurant, so I asked a colleague who lived nearby if she could pick me up.

“That’s really going to be tough,” she replied. “I have a lot of other things going on that morning, and picking you up would be an extra ten minutes out of my way.” I’d had to swallow my pride and when my request was rejected, I felt embarrassed and ashamed.

In fact, I’d simply asked the wrong person; that sometimes happens, just as sometimes I’m not available to help others as I’d like to. My former colleague wasn’t very understanding when it came to illness. Some people aren’t. Other people are, though, and there was no reason to believe my old friend wouldn’t be compassionate.

Finally, I bit the bullet and called. “Of course I’ll help,” he said without hesitation. “Give me an hour to finish shoveling off our cars, and I’ll be right over.” An hour later there he was, heaving piles of snow with the strength of a lumberjack, and an hour later he was finished. What seemed an insurmountable task to me had truly been no big deal to him, and he said so when I offered to pay him or at least make him some hot cocoa. “Happy to help,” he said. “Let me know if there’s anything else you need.”

I relayed this story to my injured acquaintance who was also snowed in. Together we created a shortlist of people she could ask for help.

A few days later I called to check on her. She was sacked out on her couch, her injury worse, because she’d never called anyone. She had insisted on doing the shoveling herself. She didn’t want to appear weak, she confided. And besides, no one could shovel her driveway as well as she could.

I understood where she was coming from because I’d once been there myself. Over time, though, I’ve realized that asking for help is not a sign of weakness; it actually takes a lot of strength. I also learned that it’s okay to release control over external matters from time to time, like how well the driveway will be shoveled, in order to focus on one’s precious health.

Doing so will allow you to get stronger faster, so you can get back to helping others. Until then, you can still be a natural helper from bed, just by being a good friend, a good listener, and a confident presence. If it feels overwhelming right now, that’s okay; it means that you need to take this time to focus on yourself and get well, so that one day, you can pay it forward.


jennifer crystal_2Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

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Our next support meeting will be:

  • Saturday, December 13, 2019
  • 2:30-4:30pm
  • East Madison Police Station, 809 S Thompson Dr.

Hope to see you there!

https://www.bca-clinic.de/en/is-tick-paralysis-a-symptom-of-lyme-disease/

Is Tick Paralysis A Symptom Of Lyme Disease?

Though it is caused by one tiny tick bite, the symptoms and subsequent fallout of Lyme disease can be devastating for patients. It is one of the most insidious diseases out there, and it doesn’t seem to be slowing down. Roughly 300,000 new Lyme cases are discovered every year according to the CDC (American Centers for Disease Control and Prevention), and it’s also worth keeping in mind that misdiagnosis rates for the condition are unusually high. Compounding the problem is the fact that chronic Lyme is not a fully legitimate condition in the eyes of most medical bodies, residing in a complicated grey area. A tick bite can also herald other health issues, including co-infections and tick paralysis. These complications can underpin Lyme and compound its effects. But what is tick paralysis? And is tick paralysis a symptom of Lyme disease?

Tick paralysis is transmitted by over 40 species of ticks. It is particularly dangerous for animals, and has caused the death of thousands of livestock over the decades. It is also a threat for domestic animals and can occur in any region where ticks make their home. Fortunately for us, cases are much rarer in humans. The disease usually occurs in children younger than ten, under very specific circumstances. An engorged, egg-laden female tick will produce a neurotoxin in its salivary glands. This neurotoxin is transmitted to the host during feeding, using the saliva of the tick as a conduit. Because such small amounts of saliva make the transition into the host’s bloodstream, research has shown that the most potent form of tick paralysis is transmitted approximately five to seven days after the initial attachment of tick to host.

What’s the connection between tick paralysis and Lyme disease? Read on to find out.

Despite the size of the tick and the tiny volume of saliva being exchanged, symptoms can sometimes be dramatic and concerning. Typical signs and symptoms include ataxia (a neurological sign that causes impaired movement and coordination) and paralysis, which usually starts in the feet or legs and moves upward. Tick paralysis does not include fever or flu-like symptoms, which are common in almost all other tick-borne diseases. The condition can become life-threatening, however, if the paralysis spreads to the torso, as it can hamper crucial organs and muscles, inducing cardiac issues and breathing difficulties. Diagnosis is fairly straightforward: if the individual lives in a tick-heavy area and has sudden-onset ataxia and paralysis in the legs, they should be thoroughly checked for ticks. No individual tests are necessary. So, what to do if you have tick paralysis? Fortunately, treatment is simple. Removing the offending tick will reduce symptoms almost immediately, and there are no residual effects. Patients just have to ensure they remove all parts of the tick from the bite.

This is a crucial difference between tick paralysis and Lyme disease and other co-infections. Tick paralysis can only exist in the presence of the tick, as it is chemically induced by the physical bite. Lyme disease is caused by invading bacteria that the tick actively transfers into the system. Once the bacteria (called Borrelia burgdorferi) invade the host’s system, the residual effects are what form the disease. The tick may be removed successfully when it is noticed, but Lyme disease can still very much be present, as long as it has had time to transfer. Not every tick will cause tick paralysis, and not every tick carries the Lyme-causative bacteria. Unfortunately, though, Lyme disease is much more prevalent than tick paralysis, and is nowhere near as easy to cure.

The first stage of Lyme is known as the acute stage, and it produces symptoms similar to the flu. These are not necessarily severe, meaning many patients underestimate them, or write them off as a mild bout of temporary sickness. The presence of a bullseye rash at the site of the bite is a sure-fire sign of Lyme, but the bite itself is not always noticed by the host. Over a couple of days or weeks, these initial symptoms will clear up, as the disease recedes and lies dormant for a time. Eventually, it will re-emerge as chronic Lyme, which causes a number of generalised, patient-specific symptoms that lend themselves to continued misdiagnosis. At this stage in the disorder, the immune system has kicked into overdrive and is causing symptoms of its own through sustained inflammation. These usually include muscle pains and aches, impaired movement, malaise and chronic fatigue. Bacteria-induced symptoms can include neurological issues and potential cardiac complications.

Aches and pains are a common symptom of chronic Lyme disease.

Treating chronic Lyme is an exceptionally difficult task and requires specialist knowledge from Lyme-literate doctors. Labs like BCA-clinicunderstand that chronic Lyme comes in many varied forms, and that treatment plans have to be tailored to each individual patient. It can be a long, hard road, particularly if additional co-infections are present. These must be addressed and treated simultaneously to ensure there are no residual effects. Fortunately, tick paralysis is not a symptom of Lyme per se, and one is not caused by the other. The two have very different mechanics, with tick paralysis kicking in very soon after a bite, and Lyme disease revealing itself over time. It is, however, vitally important for people to be aware of both of these potentially debilitating disorders, and limit their exposure to ticks when and where they can.

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For more:  https://madisonarealymesupportgroup.com/2017/05/20/child-paralyzed-after-tick-bite/

https://madisonarealymesupportgroup.com/2019/06/28/it-was-a-terrifying-12-hour-7-year-old-temporarily-paralyzed-by-toxins-from-a-tick-bite/

https://madisonarealymesupportgroup.com/2017/11/07/tick-paralysis-in-bc-a-retrospective-cohort-study/