Archive for the ‘Uncategorized’ Category

Dear Lyme Warrior…Help!

https://globallymealliance.org/dear-lyme-warriorhelp-10/

lyme warrior

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Below she answers some that she’s recently received. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.

How can I keep anxiety under control while waiting for test results?

Waiting is one of the hardest parts of being sick. You are waiting for results, waiting for medication to work, waiting to get your life back on track. Despite the label “patient,” it can be very hard to practice patience when you have a complex illness such as Lyme.

The important thing to remember with tick-borne illness is that testing is faulty and cannot be fully relied upon as the sole indicator of whether you have Lyme disease. Specialized testing can help support clinical diagnosis, but that’s a judgment call made by your doctor, who needs to take your symptoms and full medical history into account. Tests for inflammatory and immune markers can help your doctor make an accurate assessment. If you are seeing a good Lyme Literate Medical Doctor (LLMD) and feel comfortable with their diagnosis, don’t hang too much on test results.

It’s also critical to face the fact that tick-borne illness can physiologically cause anxiety. The Lyme bacteria can get into your brain and cause symptoms of anxiety on top of the natural worries you may already be having about how your illness is affecting you. Be sure to tell your doctor if you are experiencing psychological symptoms (including depression, confusion, an inability to concentrate) that may affect your treatment plan. I also highly recommend talking to a therapist who understands chronic illness. Doing so really helped me manage my own anxiety.

How can I help someone who has severe anxiety about treatment, and is resisting it?

As hard as it is for Lyme patients to deal with anxiety, it can be just as hard for caregivers to watch their loved ones become fearful and, at times, irrational. Lyme can cause inflammation in the brain, which can lead to all sorts of out-of-character behavior. Patients who were once calm and cheerful may become nervous, obsessive, angry, and confused. They may not be able to make sense of treatment options and may feel overwhelmed by all the conflicting information being thrown at them from health care professionals and the internet.

It’s important for Lyme patients to know that they are not alone. First and foremost, reassure your loved one that you are on their team. Validate their feelings and concerns rather than arguing against them. For example, instead of saying, “You just need to do x,” tell someone, “I hear your fears about treatment. I have fears, too.”

Then, demonstrate that you understand the risks and benefits of treatment options by showing insight into their suffering. In order to do this, read books and articles about the lived experience of tick-borne disease. This way the patient will know your advice is coming from a well-informed place. Offer to accompany the patient to one or more doctor’s appointments, so that you can help them make sense of what’s being said.

Finally, you may need to be direct with the patient, though in a loving way. If someone had said to me,

“I think the illness is affecting your ability to make this decision, and I want to help you because I want you to get well,” that would have really reassured me.

You might even bring up the patient’s anxiety when you’re together at the appointment, to get the doctor’s advice—just make sure you ask the patient about whether he or she is alright with this. You could also offer to go to therapy appointments with them to talk about both of your concerns and the best methods for communication.

Do all Lyme symptoms go away if you kill off the bacteria, or do some symptoms remain?

The answer to this question is different for every patient. It depends on how quickly you’re diagnosed, how well you respond to treatment, whether you are also battling co-infections, and whether the bacteria has crossed into the central nervous system. Many patients who are diagnosed immediately after a tick bite and take a standard course of antibiotics get fully well. Some 20%, though, develop Post Treatment Lyme Disease Syndrome (PTLDS) which means symptoms persist after treatment. Still others enjoy remission with periods of flare-up.

All it takes is one dormant Lyme bacterium (spirochete) to start replicating for the infection to return. This is more likely in long-term, complex cases like my own, which took eight years to diagnose. I have Lyme plus two tick-borne co-infections. My Ehrlichia seems to have gone away completely, while Lyme and babesia still flare-up. It’s babesia that still gives me the most trouble. However, all of my symptoms are greatly decreased and are far more manageable than they once were.

Since no two cases of tick-borne illness are alike, the fact that some of my symptoms have persisted doesn’t mean that yours will. Here is what I can tell you for sure: under the care of a good LLMD, you may not be cured, but your life can get much, much better.


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

 

 

Dr. Jemsek Vindicated!

https://www.facebook.com/JemsekSpecialtyClinic/videos/827014311079433/  Video Here

One of the physicians featured on the documentary “Under or Skin” has just made a major announcement:

Dr. Jemsek announces the action by the North Carolina Medical Board to overturn their 2006 decision to restrict Dr. Jemsek’s medical license by rescinding and abolishing that wrongful decision.

He was disciplined for prescribing long term antibiotics to treat chronic Lyme disease.
This is vindication for patients suffering from this disease.

 

WI – Amazing Testimonies on AB546 – Now Email Health Committee

THANK YOU, Wisconsin Citizens for

Amazing Testimonies Last Week on AB546!

Now Let’s Ask for the VOTE in the Assembly Executive Committee!

Support the Bill to Protect Complementary and Alternative Healthcare

We need your help NOW to contact your legislators to support Wisconsin’s “Safe Harbor” Practitioner Exemption bill, A546, a bill that will protect the right of homeopaths, traditional naturopaths, herbalist, energy healers and many more to offer their services to consumers in Wisconsin.  Help Wisconsin become the twelfth state to have a health freedom law protecting these practitioners!

How YOU Can Help:

1. Click Here to Email the Health Committee members and your personal legislators to ask for their support of AB546 and for it to be heard in an Executive session.  They heard the bill in Committee on January 7th and now, in order to VOTE it out of Committee, they have to hear it in an Executive meeting in order to move it and pass it out of the Committee.

2. Use this simple form to send WIHFC your testimony and we’ll submit it to the committee for you. See below for an example.  Sharing your story – in person or in writing – is crucial to the success of this bill!  Legislators love personal stories and your positive experience using complementary health could sway committee members to vote yes.

Example Message for Legislators: “Members of the Committee, my name is [insert name].  I live in [city].  I support AB546 and I want you to please VOTE YES on AB546, the “Consumer Protection for Complementary Healthcare” bill.  This bill is important to me because [insert your own brief reason why you support access to complementary and alternative health care]. Thank you.”

[i.e.,

– I depend on complementary and alternative health care for myself and my family and I want Wisconsin law to protect my rights as a consumer to a free and educated choice in health care providers.

OR

– I am a practitioner of complementary healthcare and a small business owner in Wisconsin. I want to serve my clients without the fear that my state’s laws could be used to treat me as a criminal.  Please update WI law to reflect what is happening in our state.]

Thanks in advance for helping pass AB546 into law.  Together, with your help, we can convince Wisconsin legislators to protect WI residents’ health freedom rights to access the healing modalities and practitioners they want.

For more about what this WI bill does for complementary and alternative health practitioners and their clients, see our website here (bill originally introduced as LRB-1960/1).  Read the bill here.  Read about Safe Harbor bills here.

_________________

**Comment**

I know a lot of bills are coming out and it can be very confusing.  Please know the bill in this email has to do with protecting complimentary and alternative health care like homeopathy.  It is NOT the WI bill (AB313) about the 16 member panel that we are trying to squash as it is huge government overreach and could affect the way our Lyme docs treat us here in the state of WI.

 

 

 

 

 

Reminder: WI Lyme Patients Contact Legislators to Stop AB313

This is a plea from Jeannette Wheat the former head of the Madison Group and an experienced medical professional.

Hello All People with Lyme,

I have written before about this bill, AB313, but now it is becoming urgent.

The WI Senate has already passed this bill and it will likely be passed in the Assembly if people don’t get active and contact their state Assembly people right now!

This bill will essentially create a new IDSA Lyme Guidelines committee, Infectious Disease Society of America, except that it will be WI based.

I am attaching the bill to this email, but just to give you a glimpse into it, a couple of the tasks assigned to this committee are to make recommendations to the legislature to make policy (ie law) about diagnosis and treatment of Lyme disease in Wisconsin and the Insurance Commissioner of the State of WI will be one of the committee members!  Just think for a moment how that will work against people with Lyme.

We all know how damaging the IDSA Guidelines are and how opposed to the ILADS, International Lyme and Associated Diseases Society, Guidelines they are. We just can’t let that happen in WI! Please contact your WI Assembly person NOW!!! This is likely to voted on in the next week or two.

The Senate has already passed this. So don’t bother to contact your state Senator about this now. If you don’t know who your representative is or how to contact them, here is a link to a page where you can input your address and it will find him/her for you.

https://legis.wisconsin.gov/ It says “Who are my legislators?” On my browser this shows up on the lower, right side of the page.

Tell your representative that the diagnosis and treatment of Lyme disease is not a state issue and that the insurance commisioner should not be involved in deciding how to diagnose or treat Lyme disease.  Tell them this committee thing has already been done with disasterous outcomes by the IDSA.  Tell them to vote NO on this bill- AB313!

Please take action now!  Your ability to be diagnosed and receive treatment for Lyme disease in WI is at risk!

Thank you, Jeanette Wheat, RPh MBA, and long time Lyme sufferer, support group leader (in days gone by)  and advocate..

For more:  https://madisonarealymesupportgroup.com/2019/11/06/wisconsinites-a-reminder-to-please-write-oppose-assembly-bill-ab313-today/

Exact wording of the bill: Assembly Bill 313

AB 313, previously LRBs 1652 and 3362Establishes a sixteen-member Tick-Borne Disease Study Committee to create a report for the legislature on consensus-based recommendations for policy changes on awareness, prevention, surveillance, diagnosis, reporting, and treatment of Lyme Disease.

This bill would allow Governor Evers to appoint a 16 member advisory panelto offer recommendations on how doctors diagnose and treat Lyme disease.

Many of us have explained to our representatives about the potential for that bill to go side-ways since nothing about Lyme/MSIDS is agreed upon in the medical community as well as the fact that appropriate Lyme guidelines already exist.

This bill is huge government overreach – telling doctors how to diagnose and treat patients.

All of the Lyme literate doctors I spoke with oppose this bill for numerous reasons – one of which is the fact this bill could seriously interfere with the way they currently treat patients as well as could increase scrutiny of their medical practice. They are already under severe scrutiny with many having to pay fines to the state medical board:  https://madisonarealymesupportgroup.com/2012/03/04/dr-hoffmann-updated/  My own doctor spent over 50K to protect his practice against such a witch hunt.

All we have to do is look across the state border to see problems in Minnesota:  https://madisonarealymesupportgroup.com/2019/11/17/minnesota-medical-board-reinstates-sanctions-on-controversial-lyme-disease-treatment/

 

Bartonella Found in Dogs After Infection With Rickettsia

https://www.ncbi.nlm.nih.gov/pubmed/31891215/

2019 Dec 31. doi: 10.1111/jvim.15675. [Epub ahead of print]

Detection of Bartonella spp. in dogs after infection with Rickettsia rickettsii.

Abstract

BACKGROUND:

Dynamics of infection by Bartonella and Rickettsia species, which are epidemiologically associated in dogs, have not been explored in a controlled setting.

OBJECTIVES:

Describe an outbreak investigation of occult Bartonella spp. infection among a group of dogs, discovered after experimentally induced Rickettsia rickettsii (Rr) infection.

ANIMALS:

Six apparently healthy purpose-bred Beagles obtained from a commercial vendor.

METHODS:

Retrospective and prospective study. Dogs were serially tested for Bartonella spp. and Rr using serology, culture, and PCR, over 3 study phases: 3 months before inoculation with Rr (retrospective), 6 weeks after inoculation with Rr (retrospective), and 8 months of follow-up (prospective).

RESULTS:

Before Rr infection, 1 dog was Bartonella henselae (Bh) immunofluorescent antibody assay (IFA) seroreactive and 1 was Rickettsia spp. IFA seroreactive. After inoculation with Rr, all dogs developed mild Rocky Mountain spotted fever compatible with low-dose Rr infection, seroconverted to Rickettsia spp. within 4-11 days, and recovered within 1 week. When 1 dog developed ear tip vasculitis with intra-lesional Bh, an investigation of Bartonella spp. infection was undertaken. All dogs had seroconverted to 1-3 Bartonella spp. between 7 and 18 days after Rr inoculation. Between 4 and 8 months after Rr inoculation, Bh DNA was amplified from multiple tissues from 2 dogs, and Bartonella vinsonii subsp. berkhoffii (Bvb) DNA was amplified from 4 of 5 dogs’ oral swabs.

CONCLUSIONS AND CLINICAL IMPORTANCE:

Vector-borne disease exposure was demonstrated in research dogs from a commercial vendor. Despite limitations, our results support the possibilities of recrudescence (reappearance) of chronic subclinical Bartonella spp. infection after Rr infection and horizontal direct-contact transmission between dogs.

_________________

**Comment**

Bartonella isn’t even on most GP’s radar, yet patients with tick-borne illness often have it.  This dog study shows how Bartonella can be chronic, subclinical, and reactivated by other pathogens.  Subclinical can mean a few things – either the patient appears asymptomatic (without symptoms) or it isn’t picked up on testing or both.

This issue highlights an important field of study that’s begging to be done.

Does a tick bite lower the immune system so that what was a subclinical issue now triggers an active infection?  It makes sense that a tick bite would do this, as vaccines have been shown to do this. Vaccines are designed to lower the immune system so the body mounts an immune response and creates antibodies to whatever is in the vaccine.

Dr. Burrascano, a highly experienced Lyme literate doctor, found that multiple tick bites caused greater disease severity:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

Others have found that vaccines have reactivated dormant infections:  https://madisonarealymesupportgroup.com/2016/04/24/gardasil-and-bartonella/

Excerpt:

There is further damning evidence that Gardasil can produce life-threatening reactions in those who have been close to a cat, fleas, or ticks, since many of these animals are infected with Bartonella, Babesia, or Lyme (borrelia). Also, since many MSIDS patients (multi systemic infectious disease syndrome) also struggle with viruses such as Mono or active EBV, a cytokine storm can resultwith mucus being over manufactured in lungs and airways and well as wide-spread inflammation.

Asymptomatic girls after receiving Gardasil activated dormant Bartonella which was confirmed by testing.

https://madisonarealymesupportgroup.com/2017/12/02/scottish-doctor-gives-insight-on-lyme-msids/

Excerpt:

He has started treating Lyme Borreliosis patients 20 years ago in the USA and during the last 5 years in Ireland. He has also successfully treated a number of young women who fell ill after their HPV vaccination, which seems to have stimulated a latent Lyme infection to reactivate.

Here, we clearly see that vaccines caused active infection in previously asymptomatic patients.  It makes complete logical sense that a tick bite would do the same, yet mainstream medicine hasn’t a clue and continues to treat this as a simple disease requiring 21 days of doxycycline.

There are pressing answers needed by doctors and patients yet current research seems hell-bent on focusing on climate change.

More climate data will not help patients or doctors one iota.

Pyrethroid Exposure Increases Risk for Death

https://www.medscape.com/viewarticle/923256

Pyrethroid Exposure Increases Risk for Death

Ricki Lewis, PhD

December 31, 2019

Environmental exposure to pyrethroid insecticides was associated with an increased risk for all-cause and cardiovascular disease mortality in an observational study of a nationally representative sample of US adults, according to findings published online December 30 in JAMA Internal Medicine.

Exposure to pyrethroid insecticides has been widespread since the phasing out of organophosphate-containing products, such as DDT, from agricultural fields as well as home gardens. Pyrethoids are synthetic analogues of pyrethin, a naturally occurring insecticide found in some chrysanthemum flowers. More than 1000 synthetic variations of chrysanthemum extract have been made, but only about a dozen are main ingredients of pesticides used in the United States. Thousands of kilograms of pyrethroids have been released to the environment over the years.

The pyrethroid insecticides are popular because they kill bugs and have no acute toxicities in mammals. However, because the compounds can damage DNA and cause oxidative stress and inflammation, effects of long-term chronic exposure are likely. Epidemiologic studies suggest links to diabetes, cardiovascular disease (CVD), Parkinson disease, and interference with reproduction and neurodevelopment.

Wei Bao, MD, PhD, of the University of Iowa, Iowa City, and colleagues investigated a link between pyrethroid exposure and mortality using data from the US National Health and Nutrition Examination Survey of 2116 adults. They assessed levels of 3-phenoxybenzoic acid (3-PBA) in urine samples provided at the time of the survey using analytical chemistry techniques (high-performance liquid chromatography, electrospray chemical ionization, and tandem mass spectrometry).

The survey was conducted from 1999 to 2002. The researchers used mortality data from the time of the survey through December 31, 2015, and analyzed data from May to August 2019. They tracked mortality from all causes, from cardiovascular disease, and from cancer, using the National Death Index database.

During the observation period (median 14.4 years), 246 of the participants died. Of those 246, 41 had cardiovascular disease and 52 had cancer.

Participants with higher levels of 3-PBA were at a higher risk for death during the follow-up period, occurring in 8.5% (unweighted, 75 of 709), 10.2% (unweighted, 81 of 701), and 11.9% (unweighted, 90 of 706) of participants as 3-PBA levels increased.

The researchers adjusted results for age, race/ethnicity, sex, socioeconomic status, dietary and lifestyle factors, body mass index, and urinary creatinine levels. Hazard ratios for all-cause mortality, CVD mortality, and cancer mortality among participants with the highest tertile compared with the lowest tertile of 3-PBA were 1.56, 3.00, and 0.91, respectively.

“Our findings are in line with epidemiologic evidence, which, although limited, indicates a significant association between pyrethroid exposure and CVD,” the researchers conclude. The increase in all-cause mortality is likely a result of the insecticides’ effect on the cardiovascular system, they add, noting that animal studies also link pyrethroid exposure to cardiovascular damage.

Researchers acknowledge limitations of the study: The study did not address the mechanisms of effects of pyrethroid exposure, and the assessment of a biomarker sampled at one time. The findings might not apply to countries that use different pyrethroids, and exposure to other agents might have contributed to 3-PBA levels.

In an invited commentary, Steven D. Stellman, PhD, MPH, and Jeanne Mager Stellman, PhD, of the Mailman School of Public Health, Columbia University, New York City, point out another limitation: Average age at the end of follow-up was too young, at approximately 57 years, to fully assess the long-term consequences of chronic exposure to pyrethroids on the cardiovascular system.

The commentators sound an alarm bell.

“Given the widespread use of pyrethroids and numerous exposure assessments in the general population, including in children and occupationally exposed individuals, the results of this study warrant immediate further investigation, especially because pyrethroids have long been considered of minimal hazard to humans and play a vital role in public health control of vector-borne illnesses.”

The researchers and commentators have disclosed no relevant financial relationships.

JAMA Int Med. Published online December 30, 2019. Full text, Editorial

________________

**Comment**

Permethrin used on clothing is a pyrethroid.  Make sure to spray onto clothing outdoors in a place of open ventilation and don’t breathe it in.

For more:  http://www.idph.state.il.us/envhealth/factsheets/pyrethroid.htm

https://nevegetable.org/insecticides-alphabetical-listing-trade-name

https://madisonarealymesupportgroup.com/2019/08/09/military-eyes-bug-repellent-coating-to-replace-permethrin-in-uniforms/

https://madisonarealymesupportgroup.com/2018/05/27/study-conforms-permethrin-causes-ticks-to-drop-off-clothing/

https://madisonarealymesupportgroup.com/2019/06/16/study-shows-effectiveness-of-factory-treated-permethrin-impregnated-clothing-works/

Bug sprays: https://madisonarealymesupportgroup.com/2019/07/01/what-you-need-to-know-about-bug-sprays/

Tick Prevention: https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

 

 

Atypical Presentation of Lyme Neuroborreliosis Related Meningitis & Radiculitis

https://www.ncbi.nlm.nih.gov/pubmed/31871602/

2019 Dec 2;11(4):8318. doi: 10.4081/ni.2019.8318. eCollection 2019 Nov 29.

Atypical presentation of Lyme neuroborreliosis related meningitis and radiculitis.

Abstract

Lyme disease related central and peripheral nervous system manifestations can occur in isolation or together. Radiculitis or inflammation of the nerve root can be seen 3-5% of the time in acute neuroborreliosis affecting the PNS with a typical presentation and meningitis affecting the CNS is usually seen 1% of the time. The appropriate diagnosis and management of neuroborelliosis can be challenging and require meticulous medical approaches. Herein we present a unique case of Lyme disease with neurologic manifestations including both radiculitis and meningitis due to its atypical and challenging clinical presentation and management with updated literature review.

_______________

**Comment**

I assure you, Meningitis and Radiculitis are NOT atypical with Lyme. The problem is many cases just do not get into the literature for a variety of reasons. Again, to get into research studies they often mandate an EM rash and a positive on testing, which is like winning the lottery.

https://madisonarealymesupportgroup.com/2017/09/06/spinal-meningitis-from-tick-bite/

Meningitis is an inflammation (swelling) of the protective membranes covering the brain and spinal cord. A bacterial (such as Lyme) or viral infection of the fluid surrounding the brain and spinal cord usually causes the swelling. However, injuries, cancer, certain drugs, and other types of infections also can cause meningitis.  https://www.cdc.gov/meningitis/index.html  This link also states that parasites, fungus, and amoebas can cause it (all of which can play a part in tick-borne illness).

Radiculitis may occur with Lyme disease as infection causes a localized inflammatory reaction in the root of a nerve or somewhere along the nerve itself.  https://lymediseaseguide.net/lyme-disease-neuropathy-prognosis-treatment

Ironically, this 2017 states both can be presentations of Lyme:  https://n.neurology.org/content/88/16_Supplement/P1.311

Excerpt:  Classic symptoms of Lyme neuroborreliosis include radiculoneuritis, cranial nerve abnormalities, and meningitis. Without a higher clinical suspicion for Lyme disease or other concomitant signs or symptoms, the diagnosis can be easily missed…..Lyme disease is well-known to have symptoms of radiculitis and should be considered in the assessment of cervical pain. A typical early syndrome due to neuroborreliosis has been characterized as a triad of the symptoms mentioned above including radicular pain, cranial or peripheral paresis, and lymphocytic meningitis and is called “Bannwarths syndrome” (Bannwarth, 1941).

And here we see a cluster of Bannwarth cases right here in Wisconsin and Minnesota:  https://madisonarealymesupportgroup.com/2018/02/07/cluster-of-lyme-cases-manifesting-as-bannwarth-syndrome/