Archive for the ‘Lyme’ Category

WI Lyme/MSIDS Patients – Contact Senator Tammy Baldwin Today!

Please contact Senator Baldwin today on this URGENT legislation and ask her to cosponsor the TICK Act (S. 1657) which establishes office oversight and coordination at HHS, reauthorizes regional Centers of Excellence in Vector Borne Disease, and authorizes grants to state health departments. This important bipartisan legislation, introduced by Senator Susan Collins (R-ME) and Tina Smith (D-MN), would significantly improve coordination at the federal level and provide communities and states with resources for prevention, early detection, and treatment of Lyme disease and other tick-borne diseases. 1571860110653_TICK Act One-Pager

The email to contact Senator Baldwin is: Erin_dugan@baldwin.senate.gov

I’ve included a generic template to simplify the process:

October 23, 2019

[ADDRESS]

Dear __________

[As your constituent, I am writing and asking you to cosponsor S.1657, the TICK Act. The TICK Act stands for “Ticks: Identify, Control, and Knockout Act”. This important bipartisan legislation, introduced by Senators Susan Collins (R-ME) and Tina Smith (D-MN), would significantly improve coordination at the federal level and provide communities and states with resources for prevention, early detection, and treatment of Lyme disease and other tick-borne diseases. Specifically, this legislation would:

(1) Establish an Office of Oversight and Coordination at HHS, to develop a National Strategy to expand research and improve testing and treatment affordability to fight tick-borne diseases; 

(2) Reauthorize $10 million per year over the next five years for Regional Centers of Excellence in Vector-Borne Disease. These Centers collaborate with academia and public health agencies for surveillance, prevention, outbreak response; 

(3) Authorize $20 million per year over the next five years in CDC Grants to States and communities across the country to raise awareness about Lyme and other tick-borne diseases, support early detection and diagnosis, and improve treatment. 

Your support of S.1657, the TICK Act, is urgently needed. The overall number of Americans infected by Lyme and tick-borne diseases is rising and there is no end in sight. Last year, there were 450,000 cases of Lyme, a 1,400 percent increase from 2003. 

[Please WRITE YOUR OWN STORY HERE or DELETE. For example: I got Lyme disease in 2015, while hiking on my favorite trail in… The disease has been devastating, and I am still fighting it everyday].

Lyme disease costs our nation more than $75 billion per year, including direct medical costs and indirect costs such as loss of work. As your constituent, I urge you to join the effort to combat Lyme and other tick-borne diseases by co-sponsoring S.1657, TICK Act, and become an advocate for this urgently needed, and long overdue, legislation.

Sincerely,

________________

 

 

Category:

Activism, Lyme

Tickborne Triggered Seizure Disorder – A Case Study

https://www.somerdelsignore.com/the-lyme-corner/lets-talk-lyme-disease/pans/pandas/somer-delsignore/2019/10/16/tickborne-triggered-seizure-disorder-case-study-of-a-teenager-with-new-onset-seizure-disorder-and-the-neurological-impact-of-tickborne-diseases

October 16, 2019

By SOMER DELSIGNORE

Tickborne Triggered Seizure Disorder: Case Study of a Teenager with New Onset Seizure Disorder and the Neurological Impact of Tickborne Diseases

The Neurological impact of Bartonella and Rickettsia

This next case study is of an 18-year-old female who was adopted at the age of 5. Her adoptive mother described her as a malnourished premature baby who eventually received good foster care. This young lady was diagnosed with a growth hormone deficiency that was left untreated in her country of origin at the age of two. By the age of five, she was adopted and moved to the US with her American family. She was fully immunized twice, diagnosed with hypothyroidism and inadequate growth. By this time, an Endocrinologist was onboard and treating her thyroid and growth deficiencies. She seemed to rebound, reaching puberty by the age of 13. Life was stable for some time until January of 2016. She was nearly sixteen years old and developed sudden neuropsychiatric symptoms with acute confusion, severe obsessive-compulsive disorder, frequent urination, insomnia, auditory hallucinations, severe sensory issues, leg tremors and eventually catatonia.  Given her acute changes, her mother rushed her to the Emergency Room for evaluation. EEG was negative and she was hospitalized for apparent acute psychosis treated with Risperdal and Ativan.

After her hospitalization she followed up with a well-known Neurologist who identified positive Mycoplasma and initiated a course of Azithromycin. By the fourth dose she began to return to her normal state and began sleeping again. She was treated for over a month with antibiotics and seemed stable.

There was a great deal of stress in the family, a close family member died and within two weeks she developed new onset grand mal seizures while sleeping. Another ER visit with a normal EEG at the time determined perhaps the stress and trauma of her family member’s death may have triggered the event.

In January 2018 she had another grand mal seizure early in the am. Her neurologist began medications to address. She had no additional seizure activity but noted increasing anxiety. By December 2018 she suffered another grand mal seizure.

Further evaluation by the neurologist showed negative Lyme screening only, viral panels negative, tick-borne co-infections were not obtained, thyroid studies, electrolytes and inflammatory markers were all within normal limits.

This patient presented to me in February 2019. Upon further evaluation she was found to have progressive muscle weakness, cognitive dysfunction ongoing psychiatric symptoms, tremors and noted random striae or “stretch-marks” that would appear and disappear all over her body. She stated that this had occurred since the age of fourteen.  She admitted several evaluations with psychiatric acute hospital admission for escalating neuropsychological symptoms that included visual and auditory hallucinations, compulsions, rage, emotional lability, delusions, anxiety as well as the ongoing physical symptoms. Neuropsychological meds were ineffective. The patient upon presentation was taking high dose Depakote, gabapentin and folic acid to control her seizure activity.

Initial lab work up at my office showed an IGM positive Bartonella Henselae, Lyme Western Blot with an IGM indeterminate band 23-25 and IGG positive bands 18,23-25,28,31,34,39,41,45,and indeterminate bands 58 and 66. She also showed IGG positive Rickettsia and Anaplasma. She carried one copy of MTHFR A1298C and had significant GI bacteria overgrowth with Streptococcus, Citrobacter, Proteus and Bacillus.

She was started on a course of Azithromycin and Bactrim as well as biofilm busters and herbals.  Two months later she reported significant improvements noting striae lightening, energy improvements, mood stability, resolution of hallucinations, and her sleep was improving. She noted ongoing body and hand tremors as well as struggles cognitively with word finding but was back in school full time.

We decided to continue the treatment course and repeat her bloodwork in two months as well as continue follow up with her Neurologist to monitor. By June the patient was feeling great. She began a Depakote wean with her Neurologist and graduated High School.

Her lab results showed improvements with Bartonella levels as well as GI bacterial overgrowth. Rickettsia antibodies lingered unchanged as did Lyme bands. I added to her regimen Doxycycline and Cefdinir as well as an antifungal and supportive herbals to prevent yeast.

This patient is still a work in progress, however what is important to note is her complete reversal of the neuropsychological symptoms once antibiotics were initiated as well as the ongoing, successful wean of seizure medications.

Bartonella and Rickettsia infections both have an affinity for the central nervous system. It is challenging to identify given their non-specific symptom presentation at times. Rickettsia isn’t well understood regarding brain parenchyma and central nervous system transmission. We know in mouse studies, Rickettsia and Bartonella both contribute to neuroinflammation which can contribute to acute psychological symptoms. We see this type of neurological process in classic PANS patients related to strep. Although I see the trend clinically, I don’t feel that autoimmune encephalopathy related to tick-borne infections in children and young adults is well documented.

My hope is thru case study presentations you’ll connect real world, everyday struggles of these vulnerable patients with the disease process. I strongly feel further exploration of autoimmune encephalopathy as it relates to Lyme and other Tickborne illnesses in pediatrics should be a collaborative effort with mental health practitioners and welcome those interested to contact me.

__________________

For more: https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

https://madisonarealymesupportgroup.com/2019/05/05/good-news-for-bartonella-patients-identification-of-fda-approved-drugs-with-higher-activity-than-current-front-line-drugs/

https://madisonarealymesupportgroup.com/2016/02/07/mycoplasma-treatment/

https://madisonarealymesupportgroup.com/2016/03/08/anaplasmosis/ (Treatment)

https://reference.medscape.com/article/968385-treatment  (Rickettsia treatment)

 

 

 

Category:

Bartonella, Inflammation, Lyme, Mycoplasma, Psychological Aspects, research, Treatment

Dealing With Lyme Disease and Mold Illness at the Same Time

https://www.lymedisease.org/patel-lyme-mold/

LYME SCI: Dealing with Lyme disease and mold illness at the same time

By Lonnie Marcum

Dr. Raj Patel discusses Lyme disease & mold illness

According to Dr. Raj Patel, if you have been treated for chronic Lyme disease and are not getting better, toxic mold could be a contributing factor.

In his experience, one half of all unresolved Lyme disease cases are due in part to inflammation caused by mold illness.

Dr. Patel has over 20 years’ clinical experience in medicine, treating chronic Lyme disease, chronic fatigue, mold illness, autism and related conditions.

He recently shared information and insights about his approach to Lyme and mold at LymeDisease.org’s MyLymeData2017 conference in San Ramon, California.

Exposure to Lyme and mold are very common occurrences, Dr. Patel says, but not all people who are exposed will come down with symptoms. Patients with a strong immune system may be unaffected, but those with a weakened immune system, or other contributing factors, can become chronically ill.

Signs and symptoms

The signs and symptoms for mold illness are very similar to chronic Lyme disease:

  • Fatigue, weakness
  • Focus/concentration issues, word recall, memory issues
  • Confusion, disorientation, mood swings
  • Muscle aches, cramps, joint pain, morning stiffness
  • Skin sensitivity, light sensitivity
  • Cough, shortness of breath, dizziness
  • Excessive thirst, increased urination, static shocks
  • Numbness and tingling, unusual pain, “ice pick’ pain
  • Abdominal pain, diarrhea, appetite swings
  • Headaches, tremors, metallic taste
  • Temperature regulation problems, day/night sweats (more at night)
  • Red eyes, tearing, sinus problems

Dr. Patel’s backstory is particularly intriguing. He suffered years of progressive fatigue after attending medical school in New Jersey before finally being diagnosed with and treated for Lyme disease.

Years later, after repeated exposure to a water-damaged building, he came down with mold illness and all of his Lyme symptoms came back. The treatment he recommends to his patients is the same method he used to heal himself.

Predisposing factors for mold illness

  1. Genetic predisposition
  2. History of exposure to mold or water-damaged buildings
  3. A weakened immune system due to viral, parasitic and/or bacterial co-infections
  4. Autoimmune illness

Genetic predisposition

According to Dr. Patel, common genetic defects seen in patients with mold illness are within the methylation detox pathways (MTHFR), and the Human Leukocyte Antigens (HLAs).

We each receive a set of genes from our parents, so any person has the potential for no defects, to be heterozygous (1 defect from 1 parent) or homozygous (2 defects—1 from each parent).

MTHFR is a gene that instructs the human body on how to convert folic acid from the foods we eat to a usable form of Vitamin B called methyl-folate. Methyl-folate is involved in the proper function of almost every system in the human body including: cell repair, making neurotransmitters (that control sleep, moods, memory), metabolizing fats, activating the immune system and clearing the body of toxins and heavy metals.

People who have methylation defects will have more difficulty healing from infections and clearing toxins like mold and heavy metal.

HLAs are antigens that are found on the surface of nearly every human cell in the body. These antigens help the immune system identify foreign invaders.

If there is a defect on an HLA gene a person will have difficulty clearing toxins and infections. Approximately 24% of the normal population carry an HLA defect, making them more susceptible to mold illness.

What is mold illness?

Dr. Patel says mold is the number one cause of uncontrolled inflammation involving the innate immune system. Chronic Inflammatory Response Syndrome (CIRS) happens when repeated exposure to toxins causes the immune system to go haywire. CIRS can be triggered by the combination of mycotoxins, volatile organic compounds (VOCs), and other inflammatory toxins found in water-damaged environments.

Over time, this inflammation causes damage in the following:

  • Disrupted melatonin (sleep disturbances)
  • Gut inflammation (food sensitivities, irritable bowel, immune deregulation)
  • Compromised Hypothalamic-Pituitary-Adrenal (HPA) axis (severe fatigue)
  • Disrupted Vitamin D metabolism (increased viral activity)
  • Low testosterone (fatigue, low libido)
  • Caudate atrophy (diminished motivation)
  • Swelling and enlargement of the forebrain and cortical gray matter

Testing for mold

Environmental Relative Moldiness Index (ERMI) is a DNA analysis of settled dust collected in buildings to determine the concentration of 36 species of mold associated with water-damaged buildings. For more information on ERMI see mycometrics.com

Dr. Patel recommends using the ERMI cloth method, and collecting samples from each room in the building where dust has settled for 4-6 weeks. The top shelf, above cabinets, above door jams, along baseboards, above ceiling fans are all good places for collecting dust.

For two-story buildings, he recommends using two separate ERMI kits. If the ERMI score comes back borderline, clean the building then re-test. If the score comes back with high levels of mold, it is considered a dangerous living environment for those with mold illness.

Patients with severe mold illness will need to decide whether to remodel (remediate) or remove themselves permanently from the environment.

Diagnostic tests for mold illness*

There is no single test for detecting mold illness in humans. In addition to a full workup that would include testing for autoimmune diseases, he recommends testing for specific hormones and inflammatory markers as listed below.

Tests for detecting chronic inflammation specific to Lyme and mold illness:

  • Low VIP (Vasoactive Intestinal Polypeptide) – lower than 23 (Lyme &/or mold)
  • Low MSH (Melanocyte Stimulating Hormone) – lower than 35 (Lyme &/or mold)
  • Low VEGF (Vascular Endothelial Growth Factor) -lower than 31 (Lyme &/or mold)
  • Hi TGFb1 (Transforming Growth Factor Beta-1) – greater than 7,000 (Lyme &/or mold)
  • Hi MMP9 (Matrix Metallopeptidase-9) – greater than 500 (Lyme &/or mold)
  • Hi C4a (Compliment Component 4) above 2,800 but below 10,000 (Lyme w/out mold)
  • Hi C4a (Compliment Component 4) greater than 10,000 (Lyme & mold)
  • NeuroQuant MRI swelling and enlargement of forebrain and cortical gray matter, caudate atrophy, pallidum enlargement. (Lyme will have putamen atrophy, right thalamus enlarged)

*For more information on laboratory testing see SurvivingMold.com

Treating Lyme disease in the context of mold illness

  1. Eliminate exposure. Most importantly, people must eliminate their exposure to mold from the home, school, workplace and regular hangouts including church. It is absolutely critical the Lyme patient have a mold-free sanctuary. Regularly changing central heat A/C filters and adding freestanding HEPA air filtration systems will help. If high mold content is found, the only options are remediation or vacating the premises.
  2. Reduce inflammation. Dr. Patel recommends using binders like bentonite, cholestyramine (CSM), Welchol, or activated charcoal to reduce inflammation. Patients who are immunocompromised and have signs of chronic viral reactivation (HHV6/EBV/CMV/Parvovirus) may need to treat with antiviral medication. If C4a markers come down on the antiviral, that is diagnostic of viral reactivation. If C4a markers come down on the binders, it indicates mold illness.
  3. Treat Lyme and coinfections. Once the mold is eliminated and the inflammatory markers have come down, you can begin treatment for Lyme and co-infections. If treatment is begun before the CIRS is under control, the patient will not get better. Dr. Patel recommends treatment at a low and slow pace with patients who have genetic defects in their detox pathways and a history of CIRS.
  4. Treat MARCoNS (Multiple Antibiotic Resistant Coagulase Negative Staphylococci). Diagnosis of MARCoNS is made with a deep nasal swab that is sent to the lab for culture. If positive, the patient it treated with BEG (Bacitracin/EDTA/Gentamycin) nasal spray. If the MARCoNS is resistant to Gentamycin, treat with BEC (Bacitracin/EDTA/Clindamycin). Typical dose is two sprays four times per day for four weeks (ramped up to full dose slowly).
  5. Prepare patient for VIP (Vasoactive Intestinal Peptide). Dr. Patel says VIP helps his patients repair the chronic inflammatory damage left behind by mold and Lyme, and regain the last 30% of their health. VIP is an 11-step protocol devised by Dr. Ritchie Shoemaker. It reverses the inflammatory pathways so that patients will become less reactive to mold in the future, and should be overseen by a practitioner who is trained in CIRS. You can learn more about how Dr. Patel treats mold illness here.

Avoiding mold exposure

Dr. Patel says, “quite simply, the more mold exposure is avoided, the faster the patient responds to antimicrobials.”

Dr. Patel is board-certified in Family Medicine and has completed extensive post-graduate studies in autism spectrum disorders, Lyme disease and mold illness. He is an active member of Defeat Autism Now (DAN) and the International Lyme and Associated Diseases Society (ILADS), and has completed advanced training in pediatric Lyme disease. He currently practices integrative medicine at Medical Options for Wellness in Foster City, California.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org .

Category:

Detoxing, Inflammation, Lyme, Mold

October WLN Newsletter

Image from At_A_Glance_WLN_Newsletter_October_22_2019, page 5

At_A_Glance_WLN_Newsletter_October_22_2019

Highlights:

Wisconsin Lyme Network is a statewide nonprofit organization whose mission is to raise awareness, provide education and support, and promote research for vector-borne illnesses to the patients, medical community and the general population in Wisconsin.

 

 

 

Category:

Activism, Lyme

A New Rapid Test for Lyme Disease

https://www.lymedisease.org/rapid-diagnose-lyme-disease-nih/

Researchers get closer to rapid diagnostic test for Lyme disease

Borrelia burgdorferi

A study published in the Journal of Clinical Microbiology describes a new rapid assay for Lyme disease that could lead to a practical test for use by healthcare providers.

The researchers found the assay, which uses several biomarkers to detect Lyme disease infection, was more sensitive than current laboratory-based tests when diagnosing Lyme disease early after suspected infection.

The research was supported by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health.

Lyme disease is caused by Borrelia burgdorferi, a spiral-shaped bacterium transmitted by deer ticks. Many cases of Lyme disease can be treated effectively with a short course of antibiotics.

However, Lyme disease can be difficult to diagnose because it causes a wide range of symptoms, from fever and rash to neurologic and cardiac symptoms and joint pain. Current Lyme disease tests also can miss an infection if performed too early.

The Centers for Disease Control and Prevention recommends a two-step blood test for diagnosing Lyme disease that looks for antibodies against Lyme disease. These tests require specialized laboratory equipment and can require days or weeks to return results.

Faster, more sensitive Lyme test?

The authors of the paper plan to develop a simpler, faster, more sensitive test that could be used at the point of care during a single visit to a healthcare provider.

The researchers first screened a set of known Lyme disease biomarkers for their ability to indicate infection. They then tested for the top three biomarkers on samples from people with early Lyme disease, from healthy individuals from areas where Lyme disease is endemic, and from people with Lyme arthritis.

This was compared to results obtained using the standard two-step testing procedure.

Overall, the new set of biomarkers was more sensitive than standard Lyme disease tests. These biomarkers were better at picking up signs of Lyme disease infection in early stage samples—possibly because they were able to detect antibodies that peak in the first two to six weeks after a person is infected with Lyme disease.

These results open the possibility of developing a point-of-care test for Lyme disease. The assay will require more refinement and testing before it can be approved by the Food and Drug Administration. However, the researchers say that these results show great potential.

SOURCE OF PRESS RELEASE: National Institutes of Health

Click here for more about Lyme disease testing.

_________________

**Comment*

Please note a few things about this test:

  • It’s for EARLY detection –  NOT for those who have struggled with symptoms for weeks to years.
  • It ONLY tests for Borrelia burgdorferi – ONE strain of Lyme disease. To the best of my knowledge there are still 300 strains of borrelia and counting worldwide and 100 strains of borrelia and counting in the U.S. These strains are influx as new strains are continually being discovered.
  • It DOES NOT test for coinfections which can cause symptoms identical to Lyme. It’s also common for patients to be infected with numerous pathogens. For instance a person might be infected with Lyme, Babesia, Bartonella, and Mycoplasma. There are nearly 20 diseases transmitted by ticks.
Lyme disease has ALWAYS been something that demands a clinical diagnosis by a trained health care provider.

While I appreciate new technology and efforts to simplify a complex illness – this illness is NOT for dummies. The best advice I can offer health care workers is to get educated!  Do not be lazy.  People are literally suffering untold agony, and dying from this.

For more information on how to get educated on tick borne illness:  https://madisonarealymesupportgroup.com/2018/06/06/lyme-education-for-healthcare-professionals/

https://madisonarealymesupportgroup.com/2018/02/19/calling-all-doctors-please-become-educated-regarding-tick-borne-illness-heres-how/
Many call this a “tick-borne” illness, but please be aware that a PhD believes there are many, many modes of transmission including sexual and congenital:  
And a nurse did a boatload of work collecting 33 years of research showing congenital (mother to baby) transmission:  https://madisonarealymesupportgroup.com/2018/06/19/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review/
My initial symptoms were ALL gynecological. I sincerely believe I obtained this from my husband:  https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/  I wish I knew then what I know now…..

Category:

Lyme, research, Testing, Transmission