Archive for April, 2019

Brussels Becomes First Major City to Halt 5G Due to Health Effects

https://takebackyourpower.net/brussels-first-major-city-to-halt-5g-due-to-health-effects/

Brussels Becomes First Major City to Halt 5G Due to Health Effects

3 days ago
Josh del Sol Beaulieu

Great news. A Belgian government minister has announced that Brussels is halting its 5G plans — at least for now — due to concerns about health effects.

The statement was made by Céline Fremault, the Minister of the Government of the Brussels-Capital Region, responsible for Housing, Quality of Life, Environment and Energy. From an interview last Friday, with L’Echo:

“I cannot welcome such technology if the radiation standards, which must protect the citizen, are not respected, 5G or not. The people of Brussels are not guinea pigs whose health I can sell at a profit. We cannot leave anything to doubt.”

– Céline Fremault, Minister of the Government (Brussels-Captial Region), responsible for Housing, Quality of Life, Environment and Energy

Ms. Fremault accurately identified that a 5G pilot project is not compatible with Belgian radiation safety standards (9 V/m, or 95 mW/m2 according to this online converter), and stated that she does not intend to make an exception. (In the Building Biology guidelines, the threshold for extreme concern is 1 mW/m2. However, many government agencies still only consider thermal effects, instead of the cumulative body of thousands of peer-reviewed scientific studies.)

Perhaps with Brussels heading up the European Union, and with one of the two major 5G appeals being addressed to the EU, officials there are better informed and motivated to protect themselves.

May support increase for Ms. Fremault and all officials who are hearing the call to sanity and prioritizing the people over the technocratic oligarchy.

2-MINUTE ACTION: To send a brief note of support to Ms. Fremault, go here; and to Brussels city councilors, go here. Encourage them of the importance to keep this ban permanent, despite industry’s forthcoming pressure.

The 5G Situation in Summary

There is almost no question that a 5G-world would place us all under an unprecedented level of surveillance and control; granting unheard-of powers to soulless corporate algorithms.

That should be enough to permanently delete the agenda right there, filed under “useful technology gone bad.”

Though perhaps an even bigger question for our time is: does 5G pose a major threat to all biological life? The independent evidence overwhelmingly indicates that it does.

That is, unless you ask wireless industry sources, who own the FCC and who recently put out this CNBC propaganda/commercial in a thinly-veiled attempt to quash pushback.

The talking heads of the wireless industry even brashly admit — when forced, in a US senate hearing — that they have not done any safety studies… and they don’t plan to.

The fact is, hundreds of scientists are trying everything to sound the alarm.

One such voice, Dr. Martin Pall, the WSU Professor Emeritus whose research actually lays out the mechanism of how wireless radiation causes harm in our cells, calls 5G “the stupidest idea in the history of the world.”

However, within the corporatized halls of government, there is a well-worn pattern of voices of reason being drowned out by the frothed frenzy of technocratic corporations, who envision 5G as an unprecedented economic opportunity for the full-on commercial exploitation of reality.

But 5G pushback is starting to get viral. The compilation of truth assembled in videos on 5G like this one provides a much-needed reality-check on the shocking state of greed and depravationamong the agenda-pushers in our world.

While it may sound stark, after observing this for a long while, to me it honestly now appears that those pushing this agenda are stuck in a type of hive-mind syndrome, so frenzied with dollar-signs and “us-versus-them” progress-obsessions that they are in a mode incapable of self-corrective thought. Or at the very least, incapable of seeing where all of this is obviously heading — for them and their kids, too.

When the industry sheep are being presented with an avalanche of scientific evidence for a catastrophe-in-the-making, and yet they refuse to listen and instead continue to tow the profit-pushing line, what becomes visible is the shadow-expression of utter disdain for life. That may sound harsh, but I encourage you to consider this deeply.

Perhaps it’s the global, unconscious ‘death wish’ that is at the core of the 5G push. Perhaps this is also at the core of the desire to darkly exit the human condition via AI and transhumanism. Apparently this thought-form sees its escape and salvation through technology, instead of through humanity and/or our connection with divinity.

In any case, to any sane human with normal values, the situation is indeed bewildering. Though once we get over the distress, we are called into a kind of soul-led response. Perhaps it’s first a resolve to be sovereign in our thoughts, and to be steward of our mind. Then, inspiration and true Connectedness come when we become involved in manifesting the bigger solution — the choice of a positive future.

On this path, our root challenge is to remember: the power in our individual reality is truly within each of us, because who we are is not limited to the realms of duality and separation that we experience here.

If you’re reading this, be welcomed into the humanity protector’s club. 🙂

Where You Live: The Pushback Against 5G is Going Viral

While Brussels becomes the first major international city to block 5G, dozens of local governments have passed legislation to prevent or restrict 5G rollouts due to health effects. Environmental Health Trust lists legislation from 21 local governments in the USA.

And on March 13, the Portland (OR) city council demanded that the FCC update its research on the health and environmental impacts of 5G.

Websites such as EMF Safety Network, WhatIs5G.info and My Street, My Choice provides guidelines for how to put the brakes on 5G where you live.

This industry-promoted summary of state-by-state 5G legislative actions is also useful, and gives an insight into their modus operandi.

Below is a partial list of resources where you can learn more and get involved. We applaud everyone out there who is taking the reins and leading from their heart.

Brussels story – sources:

Scientific Evidence on 5G Harm

Grassroots Communities & Organizations

Note: Several of the organizations listed below are still promoting actions limited to contacting your elected representatives and pleading for help. With that being said, there is a resounding increase in awareness that a firmer response is now required.

“UN Staff Member: 5G Is War on Humanity” (6 mins, 2019)
Documents the UN Secretary General being notified of harm from 5G and wireless proliferation.

Thanks to Dafna Tachover of We Are The Evidence for helping to break this story.

 

 

Category:

Activism

Post Treatment Lyme Disease Syndrome: A Review of its Origin & its Consequences in the Socio-economic Sphere

https://www.ommegaonline.org/article-details/The-Post-Lyme-Disease-Treatment-Syndrome-(PTLDS)-a-review-of-its-origin-and-its-consequences-in-the-socio-economic-sphere./2407#.XKLo6qbumDo.linkedin

Mini-Review
Publish Date : 2019-03-04
Investigative Dermatology and Venereology Research

The Post-Lyme Disease Treatment Syndrome (PTLDS) a review of its origin and its consequences in the socio-economic sphere.

DR. JOSE LAPENTA
Lapenta J, Lapenta JM

Abstract

In the 90s patients treated for Lyme disease, caused by the bite’s tick, which transmit the spirochete Borrelia burgdorferi began to show a set of signs and symptoms that started months after concluded the treatment; they began to be reported by various scientists around the world and called Post Treatment Lyme Disease Syndrome (PTLDS), mainly characterized by cognitive deterioration, recurring headaches, fatigue, memory problems, musculoskeletal pain and many others. For some individuals the syndrome is clinically evident, while for others it has a psychosomatic element. In this research we will make a chronological description of post-Lyme syndrome, when it appeared, its symptoms and if it really deserves to be recognized by the World Health Organization (WHO) in the new ICD-11 codes. In addition to this aspect, we will clarify the meaning of this term and scope in medical and non medical practice. We will propose a management regimen for Lyme disease that could eliminate this bacterium that is causing so much deterioration in the affected population worldwide.

Main Objective

Make a chronological description of the Post Treatment Lyme Disease Syndrome (PTLDS) from its beginnings to the present, its clinical characteristics in all affected age groups regardless of sex, age, race and nationalities.

Secondary Objectives

  • Determine if Post Lyme Syndrome is a scientific reality that should be:
  • Considered within the new ICD-11 codes (International Classification of Diseases year 2018). ?
  • They are cognitive symptoms after the treatment of Lyme disease?
  • It’s a term clearly defined?
  • Lead to new alternative treatments for Lyme disease that would mainly cover the second, third and sequel of the disease.

Methods

The methods to used include analysis of all the databases and articles published in this regard, both for or against Lyme disease post treatment syndrome (PTLDS), using the National Library of Medicine of the USA. (Pubmed, Medline). Scientific and technical literature on Health in Latin America and the Caribbean (LILACS), and Europe (SCOPUS, EMBASE); make a chronological description of the post-treatment syndrome of Lyme disease from the first time it was mentioned in the scientific literature to the present day, highlighting the most relevant. The objective was to determine if this syndrome is a clinical reality, a psychosomatic disease, or a spectrum of conditions needing better defining. In addition to that, we will explain why this term is causing so much controversy today, and we will propose a new treatment regimen that should be considered by the world health authorities for the treatment of Lyme disease.

In the chronology of Post-Treatment Lyme Disease Syndrome (PTLDS) we will highlight the most relevant ones in the timeline, describing the term first, by the health authorities, and by the scientists concerned in the study of these clinical manifestations.

Introduction

Definition of the Term According to the CDC the definition of Lyme disease as:

“Lyme disease is an infection caused by the bacterium Borrelia burgdorferi. In the majority of cases, it is successfully treated with oral antibiotics. Physicians sometimes describe patients who have non-specific symptoms (like fatigue, pain, and joint and muscle aches) after the treatment of Lyme disease as having Post-Treatment Lyme Disease Syndrome (PTLDS) or Post Lyme Disease Syndrome (PLDS). The cause of PTLDS “is not known.”

The CDC also dismisses the use of the term “Chronic Lyme Disease” (CLD), arguing that this term is confusing in the scientific community and has been used at times to describe symptoms in patients who “never had actual or past contact” with Borrelia Burgdorferi infection[1].

In summary: For the CDC, Post-treatment of Lyme disease syndrome (PTLDS) is of “unknown cause” and in addition the term “Chronic Lyme Disease” (CLD) should not be used.

Definition of the term According to the researchers: Lyme disease is caused by a bacterium Borrelia Burgorferi. Some patients show persistent neurological and organic symptoms (Post-Treatment Lyme Disease Syndrome (PTLDS), even after proper antibiotic therapy. The PTLDS symptoms include: cognitive changes: memory loss, verbal flexibility, association changes, speeds of thought, fatigue, musculoskeletal pain, weakness. It is thought that the cause of this is a chronic encephalopathy caused by the Borrelia burgdorferi when it reaches the brain[2,9-15].

Also many, perhaps most researchers recognize the term “Chronic Lyme Disease (CLD), widely described in the literature[2], and could be considered the same Post-Treatment Lyme Disease Syndrome (PTLDS). In addition, it is considered that in many cases the diagnosis was made late due to failures in the blood tests and resistance to the treatment with antibiotics.

In summary: for the scientific community, the term “post-treatment of Lyme disease syndrome (PTLDS)” is a reality and, in many cases, the cause of this is a chronic encephalopathy that causes the symptoms. The failure of the treatment with antibiotics, or the late establishment of it by misdiagnoses, could contribute to the symptomatology.

Chronologic Evolution

Decade from 1990 to 2000

In the year 1991 Krupp et al[3].; describes 15 patients treated for Lyme disease who complained of persistent cognitive difficulty after 6 to 7 months of treatment with antibiotic therapy; they were compared with 10 healthy controls. Post-Lyme patients showed a marked deterioration in cognitive tests: memory loss mainly in selective recognition. Memory deterioration did not correlate with anti-Borrelia burgdorferi antibodies titers in the blood or cerebrospinal fluid. No evidence of alterations in the magnetic resonances was found in the affected patients, also symptoms of depression. The authors conclude that it is an encephalopathy of unknown cause, where factors such as the sequelae of systemic infection by Borrelia and other toxic metabolic factors may be partly responsible for these symptoms[3].

Perhaps this represents the first study in Post-Treatment Lyme Disease Syndrome (PTLDS), or Post-Lyme Syndrome (PLS) because patients were evaluated months after receiving treatment and presented neurological damage symptomatology in this case chronic encephalopathy[3].

Note: In all the previous studies of Lyme disease the term Post-Lyme Treatment Syndrome (PLTDS) is not mentioned; they describe chronic manifestations as part of the second or late phase of Lyme disease, but not this term until 1991 where these researchers publish the study[2-3].

1995: After the description of Krupp et al., another scientists: Benke, et al.[4], in the year of 1995, published a study on 20 patients with Lyme Borreliosis previously diagnosed several years earlier, with an average of 4.3 years after the acute phase of Lyme, compared with a control group; This study revealed that patients with Lyme revealed deficits in verbal memory, mental flexibility, verbal associative functions and vocal articulation. The authors suggest that these findings are similar to those reported by Krupp et al. in 1991 and reaffirm that it is an encephalopathy associated with a long-term neuropsychological deficit that predominantly affects internal functions[4].

1996: One year later Bujak, et al. in 1996 published a study of 23 patients after had Lyme positively tested with ELISA, and previously treated with standard antibiotic regimens for the disease; neurocognitive impairment, persistent arthralgia, fatigue and memory loss were evaluated, finding the following facts: 7 patients (30 %) had fibromyalgia, 3(13 %) had chronic fatigue syndrome and 22 of 23, they complained about memory problems or decreased concentration. The scores for the attention scale, verbal memory, visual memory, sleep problems, mood swings and depression symptoms were higher for Post Lyme patients (PLS) than the normal.

The authors conclude that despite treatment with appropriate antibiotics for Lyme disease, sequelae mainly neurocognitive disorders, persistent arthralgias and fatigue can arise[5].

1997: In this year, Gaudino, et al. published a study to evaluate the differences and similarities between chronic fatigue syndrome (CFS) and post-Lyme syndrome (PLS) studying 25 patients with chronic fatigue syndrome (CFS) with exclusion criteria for Lyme disease, 56 healthy controls and 38 patients with Post Lyme syndrome (PLS), seropositive for Borrelia burgdorferi with positive criteria by the CDC for Lyme, who presented symptoms of severe fatigue 6 months after having complied with the treatment of antibiotics for Lyme disease. All the patients underwent structured psychiatric interviews, evaluating: attention tests, verbal memory, verbal fluency and motor speed.

Patients with chronic fatigue syndrome (CFS) and Post Lyme syndrome (PLS) were similar in several somatic symptoms and in the psychiatric profile. Patients with PLS had a worse performance on cognitive tests compared to healthy controls.

The authors conclude that despite the overlap of symptoms, patients with Post Lyme Syndrome (PLS) show greater cognitive deficits than patients with Chronic Fatigue Syndrome (CFS) compared to healthy controls. This fact became more evident among patients with PLS who lacked premorbid psychiatric disease[6].

1998: Bloom, et al. studied 5 children from the neurocognitive point of view after having been diagnosed with Lyme. They were treated for 2 to 4 weeks with intravenous ceftriaxone and evaluated comprehensively including detailed neuropsychiatric tests. The main objective of the study was to consider the possibility that Lyme disease after treatment left a sequel in children as well, as it had already been demonstrated in adults.

The 5 children were followed up for a period of 2 to 7 years after the treatment with antibiotic (ceftriaxone) and it was found that months after the treatment the children after having had the classic erythema migrans, cranial neuropathy or Lyme arthritis, developed behavioral changes, forgetfulness, decreased school performance, headache, fatigue and in two cases complex seizure disorders.

The five patients were found IgG antibodies against Borrelia burgdorferi in serum, intrathecal IgG antibodies and two of them pleocytosis of the Cerebro Spinal Fluid (CSF). Despite normal intellectual functioning, the five children had mild to moderate impairments in auditory or visual sequential processing.

The authors conclude that children can develop neurocognitive symptoms together with or after the classic manifestations of Lyme disease, and attribute it to an infectious or postinfectious encephalopathy related to Borrelia burgdorferi, confirming previous studies in adults[7].

In this study it was demonstrated that the Post-Treatment Syndrome of Lyme Disease (PTLDS) not only affects adults, but also children, and it is reaffirmed that the cause of it is an encephalopathy caused by the infection by the Borrelia burgdorferi.

1999: In the year of 1999 Elkins et al. published a work on 30 patients with Post Lyme Syndrome (PLS), who were surveyed to determine the neuropsychological status found as a fundamental aspect: the mood of PLS ​​participants was characterized by reduced levels of positive affect (PA) and typical levels of negative affect. Authors conclude that these symptoms are the most useful markers in patients with Post Lyme Syndrome (PLS)[8].

That same year Kaplan, et al. conducted a study where they claim that a small group of patients with Lyme develop encephalopathic symptoms months to years after diagnosis and treatment. The most common symptoms reported were fatigue, memory loss, sleep disorders and depression with a controversial etiology of the syndrome (PLS). The study was done comparing patients with Lyme and abnormal Cerebro Spinal Fluid (CSF), patients with Lyme and normal CSF and healthy controls. Both groups with Lyme showed memory deficits, but more accentuated and measurable in those with abnormal CSF; they also showed higher score in the depression in relation to healthy controls[9].

2000-2001: In 2001 Klempner, et al. conducted a study to test the efficacy of antibiotic treatment in Lyme-positive patients with persistent symptoms and a history of Lyme disease. Two groups of patients were studied: 78 seropositive patients and 51 seronegative patients for Borrelia burgdorferi. Patients received intravenous ceftriaxone, 2 g daily for 30 days, followed by oral doxycycline, 200 mg daily for 60 days, or corresponding oral and intravenous placebos. Each patient had well documented and treated Lyme disease, and had persistent musculoskeletal pain, or dysesthesia associated with fatigue. The authors conclude that there is a considerable deterioration in health-related quality of life among patients with persistent symptoms despite prior treatment for acute Lyme disease. In these two trials treatment with oral or intravenous antibiotics for 90 days did not improve symptoms more than placebo[10].

Morgen, et al. performed a brain Magnetic Resonance (MR) study in 27 patients with post-treatment Lyme disease syndrome to try to help identify the pathological mechanisms of the disease. Of the total, four (4) patients had focal neurological deficits, recurrent remitting disease and lesions in a typical electron microscopy (EM) distribution; 23 (85 %) patients presented non-focal symptoms, such as fatigue, subjective memory deficiencies and mood disorders. Twelve of these patients (44%) had normal magnetic resonance imaging (MRI); 10 (37 %) had mainly punctate and subcortical lesions, and one patient had multiple periventricular lesions.

The authors concluded that in a portion of patients with Lyme disease syndrome after treatment, hyperintensities of the white matter tend to occur in subcortical arteriolar watershed areas and are not-specific[11].

These last two studies show:

  • Many patients do not improve with long-term antibiotics after presenting chronic symptoms post Lyme and
  • It is demonstrated that there are obvious findings of the damage of the cerebral white matter in post-Lyme patient’s treatment, found by means of Magnetic Resonance Imaging (MRI).

This means that in the line of time and for the 90s and the beginning of the 2000s, a harsh reality is uncovered: Lyme disease is an illness that in many cases becomes chronic, months or years after symptoms begin, even after having disappeared with proper treatment.

The most frequent symptoms of Chronic Lyme Disease (CLD) or Post-Treatment Lyme Disease Syndrome (PTLDS):

2001-2018

Chronic Lyme Disease Symptoms:

  • Fatigue and lack of resistance
  • Nocturnal sweating
  • Pale, dark circle under the eyes
  • Abdominal pain
  • Diarrhea or constipation
  • Nausea
  • Cardiac anomalies: Lyme carditis
  • Orthopedic disorders: sensitivity, spasms and generalized muscle pain, rigidity and / or retarded motion
  • Respiratory infections of the superior tract and otitis
  • Arthritic disorders and painful joints
  • Neurological disorders: Headache Drowsiness, Loss of memory, Convulsions, Facial paralysis, Irritability, Bad mood
  • Suicidal thoughts; Anxiety; Anger or rage; Hallucinations
  • Eating disorders and humor changes: Cognitive speaking, Speech delay, Reading-writing problems, Problems of vocal articulation, Auditory / visual processing problems, Word selection problems, Dyslexia
  • Aggression or violence
  • Irritability
  • Emotional disorders
  • Depression
  • Hyperactivity
  • Photophobia
  • Gastroesophageal reflux with vomiting and coughing
  • Secondary eruptions
  • Other eruptions
  • Ocular problems: posterior cataracts, myopia, stigmatism, conjunctive erythema (Lyme eyes), optical nerve atrophy and / or uveitis
  • Sensitivity of skin and noise (hyperacuity)[12-45].

Probably there are more, the evidence is that there really are chronic symptoms in Lyme disease, with or without adequate treatment.

Conclusion

It is demonstrated that the chronic symptoms of Lyme disease are a reality, referred to as:

Chronic Lyme disease (CLD); or Syndrome- Post-treatment of Lyme disease (PTLDS).

As we said at the beginning, the CDC does not recognize the term Chronic Lyme Disease (CLD) because it is confusing[1].

With respect to this, we conclude that the CDC is wrong because data demonstrated that months or years after adequate treatments with antibiotics, patients can have the same or worse symptoms, which gives truth to the term: chronic Lyme disease (CLD).

On the other hand, the CDC alleges that the term Post-treatment of Lyme disease syndrome (PTLDS) is used by some scientists to define symptoms after the treatment of the disease and that it is due to “unknown cause”:

With regard to this aspect, the “so called” Post-treatment of Lyme disease syndrome (PTLDS), is the same chronic Lyme disease, consisting of:

  • Lyme positive patients who were never treated.
  • Positive Lyme patients who after treatment in acute phase relapsed months or years later, and reached the secondary or late stage with symptoms equal or more severe than at the beginning.

Patients who were misdiagnosed due to lack of effective diagnostic tests and reached the chronic stage. Today the CDC recognizes that its diagnostic tests are not 100% effective.

Well-diagnosed Lyme patients who never responded to the treatments recommended by the CDC.

  • We also disagree with the CDC about the definition of “unknown cause” when most studies and research show that it is a chronic encephalopathy produced by Borrelia burgdorferi, either by:
  • Its persistence in the bloodstream, cerebrospinal fluid and tissues due to resistance to treatment, under the well-known mechanism of “Biofilm”.
  • Generation of neurological damage due to the persistence of Borrelia burgdorferi in tissues that do not regenerate, such as the nerve cells.
  • An inflammatory process that remained in the nervous system and tissues after eliminating the causative agent.
In some patients, the coexistence of other diseases such as Erlichiosis, Babesiosis and Bartonellosis, which worsen the symptoms and obstruct the treatment.

We find with an unprotected society, the reality is that thousands of patients are discarded as positive Lyme after 4 months of treatment, because the treatment guidelines of the CDC say that in that time or less you will be cured, which we prove is false in a good proportion of patients.

In 2019 May, is the limit for the recognition of ICD-11 Codes of Lyme disease (International classification of diseases), and the WHO refuse to recognize them all, which will cause patients without coverage for their treatments. One of the unrecognized codes is congenital Lyme[46-54] .

The global community of patients with Lyme must organize well and adequately claim from health authorities such as the World Health Organization (WHO) to recognize the entire Lyme codes, and ensure coverage of their treatment at all levels.

The Syndrome post-treatment of Lyme disease (PTLDS), which is nothing more than the ”chronic symptoms” of the disease, is being used perversely to cover the reality of this disease, avoid coverage by health insurance, and tell patients: “you have nothing, go to a psychologist” … when their blood and brain are sailing in a sea of ​​Borrelias.

Comments

With regard to the proposal of new treatment guidelines for Lyme disease, we prefer to wait for what the health authorities at the world level will propose; then we will make a new publication about it.

Dr. José Lapenta Dermatologist

Dr. José M. Lapenta Md

Acknowledgments

To the Lyme world community that fights for its rights to be treated as real patients and not as psychiatric patients.

To my son J. Miguel MD, for his logistical support and co-author.

To all patients with Lyme especially Stacy Cellier Gomez whose story was quite motivating.

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  1. Crowder, L.A., Yedlin, V.A., Weinstein, E.R., et al. Lyme disease and post-treatment Lyme disease syndrome: the neglected disease in our own backyard. (2014) Public Health 128(9): 784-791.

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  1. Weinstein, E.R, Rebman, A.W., Aucott, J.N., et al. Sleep quality in well-defined Lyme disease: a clinical cohort study in Maryland. (2018) Sleep 1: 41(5).

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  1. Cervantes, J., Doctor says you are cured, but you still feel the pain. Borrelia DNA persistence in Lyme disease. (2017) Microbes Infect 19(9-10): 459-463.

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For a list of 700 peer-reviewed articles on the persistence of Lyme:  https://www.ilads.org/wp-content/uploads/2018/07/CLDList-ILADS.pdf

Great article by microbiologist Holly Ahern where she takes the PTLDS moniker head-on showing that the actual number of those with persistent/chronic symptoms is more like 60%:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

Please spread the word on this as researchers seeing the falsely skewed low percentages of 10-20% aren’t going to see the relevance in studying this further.  If; however, they see that 60% of patients are affected chronically, that puts the whole matter into a different urgent category.  We need to point out CDC/NIH errors.

 

 

 

Category:

Lyme, research, Treatment

Be a Victor Not a Victim

https://globallymealliance.org/be-a-victor-not-a-victim/

by Jennifer Crystal

Many patients of tick-borne disease take years to get diagnosed. A lucky few ones find a bull’s-eye rash or an embedded tick, go to a physician who just happens to be Lyme literate, and get started on antibiotics right away. If they respond well to initial treatment, they can be cleared of Lyme in a month’s time.

Most patients are not this lucky. Even of those who do get treated right away, 10-20% go on to suffer after treatment. And for people who are not immediately treated, Lyme bacteria and quite possibly other co-infections the tick has introduced to ones body can spread through their bodies and brains for months, years, even decades before they are  accurately diagnosed. By the time of diagnosis, the person is often bedridden, plagued by exhaustion, joint aches, migraines, brain fog, and other neurological impairments. The unluckiest can suffer paralysis or schizophrenia.

When you’re a victim of unbearable physical and neurological suffering and you’re fighting to get a diagnosis, it can be the most natural thing in the world to also fall victim to a woe-is-me mentality. In some respects, you have to. Just to get people to take you seriously. If you’re like me, you might be used to putting on a good face even in the toughest times.

I’ve always been a glass-half-full person, an optimist fundamentally, but in order to get people to really understand what was going on under my mask of a smile, I had to complain. I was doing myself no favor by remaining stoic. Some might say I was throwing a pity party. But I needed to do so in order to be heard.

When I finally did get accurately diagnosed with Lyme and two of its co-infections, babesia, and ehrlichia, I wanted to shout from the rooftops, “Hey world, guess what? I have Lyme disease!” After eight years battling mystery symptoms, two years being utterly bedridden, and countless pointless doctors appointments where I was told, “Maybe it’s all in your head” or “You just need to exercise more,” I finally felt validated, I had a true physical disease—multiple diseases, in fact three of them—and the tests and clinical diagnoses to prove it.

Getting that validation can make you want to go back to all those naysayers and gleefully howl, “I told you so.” But many of those same people are the ones you will still need support from, whether it’s emotional or financial support from friends and family or medical support from physicians. For that reason, you have to take the moral high road. You have to extend understanding to those people, recognizing that they simply didn’t know enough about tick-borne diseases. Yet you have to educate them so they can meet you where you are and help you the manner best suited for your illness.

Inside, you may be very angry indeed. You may feel like a victim for all you’ve been through. When you start having Herxheimer reactions and start feeling worse than ever, you may even curse the tiny tick that did all this to you, the doctors who wouldn’t listen to you, the friends or family who didn’t advocate for you. You may curse the world for not understanding your suffering.

I say you may only to suggest that this could happen, but also to give you permission to have these feelings. It’s okay to be angry. It’s okay to be sad. It’s okay to be frustrated. It’s okay to mourn the months or years of your life that you’ve lost.

It’s not okay to stay in that place. It’s not okay to get stuck in your own anger. For then, you indeed become a victim, you become bitter. The tick, the disease(s) it carried, and the naysayers all win, because you’ve let them get the best of you. Please don’t do this. You are better than that.

You are a fighter. You deserve to regain your health. But your body cannot heal if you weigh it down with toxic emotions. You can have them, sure; that’s only natural. But at some point you must need to move beyond them. You must release yourself from them, so that your body has a real fighting chance to heal.

Don’t send your body the message that you’re a victim because it will believe you. Send your body the message that you are going to treat it kindly, be patient with it, and support it every step of the way on its journey to health.

Be a victor instead of a victim.

jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

lymewarriorjennifercrystal@gmail.com. 

_________________
**Comment**
Great, great reminder.  You can have all those emotions but don’t stay in that place forever.  Rise above it.  Come to support group and vent.  That’s what we are here for.
One point that is important – way more than 10-20% of us have chronic symptoms.  Microbiologist Holly Ahern wrote an incredible piece pointing out it’s more like 60%: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  This is a prime example of how this plague has been downplayed using statistics and wrong definitions.  
We need to issue well known as it is being used against patients. Researchers are taking the falsely skewed statistic of 10-20% and making this sound rare – when it is not.
Please get the word out.  This PTLDS definition must change.

 

 

 

Category:

Activism, Lyme, Psychological Aspects

The Importance of Gut Health to Healing From Chronic Illnesses Podcast- Dr. Jill Carnahan

https://livingwithlyme.us/episode-63-the-importance-of-gut-health-to-healing-from-chronic-illnesses/

Episode 63: The Importance of Gut Health to Healing from Chronic Illnesses

March 30, 2019

Cindy Kennedy, FNP, is joined by Dr. Jill Carnahan, who discusses the importance of gut health in order to heal from chronic illnesses. She offers an insight into candida and its role in “Gut Dysbiosis.”Dr. Carnahan completed her residency at the University of Illinois Program in Family Medicine at Methodist Medical Center. In 2006 she was voted by faculty to receive the Resident Teacher of the Year award and elected to Central Illinois 40 Leaders Under 40. She received her medical degree from Loyola University Stritch School of Medicine in Chicago and her Bachelor of Science degree in Bio-Engineering at the University of Illinois in Champaign-Urbana. She is dually board-certified in Family Medicine and Integrative Holistic Medicine. In 2008, Dr. Carnahan’s vision for health and healing resulted in the creation of Methodist Center for Integrative Medicine in Peoria, Illinois, where she served as the Medical Director for two years. In 2010, she founded Flatiron Functional Medicine in Boulder, Colorado, where she practices functional medicine with medical partner, Dr. Robert Rountree, author and expert speaker.

Dr. Carnahan is also 10-year survivor of breast cancer and Crohn’s disease and passionate about teaching patients how to “live well” and thrive in the midst of complex and chronic illness. She is also committed to teaching other physicians how to address underlying cause of illness rather than just treating symptoms through the principles of functional medicine. She is a prolific writer, speaker, and loves to infuse others with her passion for health & healing!

If you would like to read more about Dr. Carnahan, visit www.drcarnahan.com.

________________

For more:  https://madisonarealymesupportgroup.com/2018/10/24/herbs-habits-to-revive-your-gut/

https://madisonarealymesupportgroup.com/2018/08/15/whats-the-best-diet-for-lyme-disease-dr-rawls/

https://madisonarealymesupportgroup.com/2019/01/12/sibo-clinical-implications-natural-therapeutic-options/

https://madisonarealymesupportgroup.com/2019/02/19/germs-in-your-gut-are-talking-to-your-brain-scientists-want-to-know-what-theyre-saying/

https://madisonarealymesupportgroup.com/2019/03/29/cochrane-review-probiotics-reduce-c-diff-by-70-in-high-risk-patients-taking-antibiotics/

https://madisonarealymesupportgroup.com/2018/09/15/prebiotics-probiotics-do-they-really-work-for-gut-health/

 

Category:

diet and nutrition, Gut Health, Supplements, Treatment

Borrelia bissetti Found in Canadian Deer Ticks

https://www.ncbi.nlm.nih.gov/m/pubmed/30395480/

Identification of Borrelia bissettii in Ixodes scapularis ticks from New Brunswick, Canada.

Lewis J, et al. Can J Microbiol. 2019.

Abstract

Lyme disease is a tick-borne disease that is emerging in Canada. The disease is caused by spirochetes of the Lyme borreliosis group, which is expanding as new species are discovered. In Canada, Lyme disease risk has so far been assessed primarily by detection of Borrelia burgdorferi sensu stricto. Of Ixodes scapularis ticks collected between 2014 and 2016 in New Brunswick, Canada, 7 were shown to be infected with Borrelia bissettii by nested PCR and sequencing of 5 B. bissettii genes. Since different Borrelia species are associated with different clinical manifestations and are not detected with the same diagnostic tests, the identification of a previously undocumented or underreported pathogenic Borrelia species has important implications for public and veterinary medicine.

_________________

**Comment**

Again, the important issue here is that current CDC 2-tiered tests only test for ONE strain of borrelia when there are 300 and counting strains worldwide being transported everywhere by migrating birds, rodents, lizards, and mammals – including humans.

Before you discount Borrelia bissetti as being “somewhere else,” please know it was found in Chicago rodents:  https://www.ncbi.nlm.nih.gov/pubmed/11075925. These strains are unlike previous Borrelia isolates from NW Illinois and Wisconsin.

This excellent pdf has studies of bissetti in everything from mice to human heart valves: ws-B.Bissettii1  The pdf also makes an excellent point that desperately needs to be addressed:  Borrelia strains sequenced are strains that have been grown in culture medium. What about the diverse strains identified in the Southeastern United States that cannot be cultured? It also gives two studies showing that changing criteria of the Western Blot & mixing borrelia strains increased testing sensitivity.

 Time for the CDC to roll up their sleeves and deal with this. It is way past time.

For more on testing:  https://madisonarealymesupportgroup.com/2018/01/16/2-tier-lyme-testing-missed-85-7-of-patients-milford-hospital/

https://madisonarealymesupportgroup.com/2018/10/12/direct-diagnostic-tests-for-lyme-the-closest-thing-to-an-apology-you-are-ever-going-to-get/

Key quote:  

“These serologic tests cannot distinguish active infection, past infection, or reinfection.”

In plain English, these tests don’t show squat.

https://madisonarealymesupportgroup.com/2018/09/08/whats-the-best-test-for-lyme-dr-rawls/

Excellent article explaining the tests:  https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/

 

 

 

Category:

Lyme, research, Testing, Ticks