Archive for the ‘Treatment’ Category

Chronic LD Summit #3

 

Lyme Disease is the fastest growing, vector-borne infectious disease in the United States and has been found all over the world! It knows no borders and can affect anyone at anytime.

The Chronic Lyme Disease Summit #3 is ONLINE and FREE starting April 30th!

 

MEET YOUR HOST… 

Hello, I’m Dr. Jay Davidson,

I know first hand what its like to almost lose a loved one to Lyme disease. My wife Heather was diagnosed with Lyme at seven years old and battled it almost her entire life until recently. After she gave birth to our beautiful daughter Leela, we went through the most terrifying and isolating time of our lives, searching endlessly for a way to help her.

After finding a solution and bringing Heather to the point where she is the healthiest she’s ever been in her entire life, I have now dedicated my life to helping others who are struggling with Lyme to overcome this terrible disease and start healing. I believe you deserve to be happy, healthy and live a fulfilling life.

I am so excited to bring to you the Chronic Lyme Disease Summit #3 with over 35 truly INCREDIBLE Lyme disease expert interviews. I can’t wait for the summit to start and I hope you gain tremendous value from it– you won’t want to miss this!

See you inside, Dr. Jay

 

Register here:  http://chroniclymediseasesummit3.com/?

 

 

Category:

Activism, Lyme, Treatment

Mushroom Extract Shows Promise For LD

http://www.rheaheraldnews.com/online_features/health_and_wellness/article_f766b28f-313c-57f4-81e8-79c29707a6ae.html  North American Precis Syndicate Mar 26, 2018 

Unique Mushroom Extract AHCC® Shows Promise For Lyme Disease

(NAPSI)—Once almost unheard of, Lyme disease is now a household word. The U.S. Centers for Disease Control and Prevention estimates there are 20,000 new cases a year, and 10 percent of Americans say they know someone with chronic Lyme disease.

Yet the illness is tricky to diagnose. In the early phases, Lyme disease causes symptoms that can easily be mistaken for a case of the flu. And while some people see a distinctive bull’s-eye−shaped rash, not everyone does, and the rash doesn’t always look the same. As a result, it can take weeks or even months to get a correct diagnosis.

Worse yet, as time elapses, the bacterium that causes the disease becomes much harder to eradicate—making it more difficult to treat it effectively. Fortunately, a new pilot study shows that AHCC, a proprietary medicinal mushroom extract developed in Japan, can help alleviate the symptoms of both early and chronic Lyme disease.

Lyme disease: A hidden time bomb

Spread by black-legged ticks, Lyme disease initially causes symptoms such as rash, headaches, fatigue, fever, muscle aches, and joint pain. Timely treatment with antibiotics can be effective, but if the disease is not caught and treated early, more serious symptoms such as short-term memory loss and heart palpitations can emerge, as the bacterium spreads to the brain and heart.

Although early-detected Lyme disease can be treated with antibiotics lasting 14 to 21 days, untreated chronic Lyme disease can continue for weeks, months, or even years after the tick bite. Those who have reached the chronic stage of Lyme disease run the risk of symptoms worsening and becoming long-term—causing emotional and physical stress.

AHCC: a potent immune system modulator

AHCC is an extract of the mycelia (root systems) of medicinal mushrooms and the best-selling immune supplement in Japan. It has been shown to modulate the body’s immune system in more than 20 human clinical studies and is used in more than 1,000 health care facilities around the world.

Rather than being directly anti-bacterial, AHCC increases the numbers and/or activity of several kinds of immune cells such as natural killer cells, T cells, and dendritic cells, as well as cytokines, the chemical messengers of the immune system.

Thanks to this ability to dial up immune response, AHCC has been shown to help prevent or treat a variety of bacterial and viral diseases such as HPV and hepatitis C in humans, and MRSA, influenza, and West Nile in animals. That impressive track record inspired a group of scientists to study how taking AHCC would affect Lyme disease patients.

Lead researcher says study results are “a truly exciting finding”

The study, conducted at The Salerno Center for Complementary Medicine in New York by Dr. John Salerno, enrolled 12 patients with a definitive diagnosis of early or chronic Lyme disease.

The participants took three grams of AHCC per day for eight weeks. At the beginning of the study, after four weeks, and again after eight weeks, Salerno and his associates measured symptoms such as rash, flulike symptoms, lymph node swelling, neck stiffness, and issues with the eyes, joints, and muscles, as well as neurological and cardiovascular symptoms. In addition, they looked for evidence of the bacterium and examined markers of immune activity.

After eight weeks, AHCC had improved the following symptoms: flulike symptoms; eye, joint, and muscle problems; and neurological and cardiovascular issues. Of the three patients who tested positive for IgM antibodies (produced by the body at the beginning of a Lyme disease infection) at the beginning of the study, none still had the antibodies at the conclusion. Of particular note, AHCC also significantly decreased inflammation.

“Inflammation is what makes Lyme disease so debilitating,” Salerno commented. “The fact that AHCC could reduce inflammation and improve Lyme symptoms is a truly exciting finding.”

AHCC may offer protection against Lyme disease infection

It is possible that taking AHCC proactively could prevent Lyme disease infection in the first place. A weak immune system makes the body more vulnerable to any kind of infection, whether from a virus, parasite, or bacterium. The stronger your immune system, the more likely it is to either prevent infection in the first place or clear an established infection more quickly.

In the case of Lyme disease, giving the immune system an assist in the form of more immune cells—and more active immune cells—could mean the difference between the infection being eliminated by the body in the early stages or developing into chronic Lyme disease, with its more serious symptoms. And as the new study demonstrated, even for those with chronic Lyme, AHCC can help mitigate debilitating symptoms through reducing inflammation, offering new hope for those who often feel hopeless.

How AHCC works:  http://ahccresearch.com/how-ahcc-works.html

For more information about AHCC or this study, visit www.ahccresearch.org.

On the Net:North American Precis Syndicate, Inc.(NAPSI)

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Comment:  Inflammation is a killer.  Anything you can do to lower that will help you.  Many things are available including DMSO & MSM:  https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/  These, cheap, effective, and safe substances are available over the counter and help with pain, inflammation, detoxing, chelating, and more.

 

 

 

 

Category:

Activism, diet and nutrition, Inflammation, Lyme, research, Supplements, Treatment

Dementia and Lyme Disease With Dr. Cameron

https://www.youtube.com/watch?v=RqJbOnQ6NVo  Approx. 57 Min.  CASE STUDY: KRIS KRISTOFFERSON’S DEMENTIA WAS UNDIAGNOSED LYME DISEASE.  For several years, legendary singer and songwriter Kris Kristofferson was believed to be suffering from Alzheimer’s disease or dementia. However, the musician’s memory problems were later identified as undiagnosed, untreated Lyme disease.  According to a story in the June 6, 2016, issue of Rolling Stone, doctors had believed the 79-year-old singer’s “increasingly debilitating memory loss was due to either Alzheimer’s, or due to dementia brought on by blows to the head from the boxing, football and rugby of his teens and early twenties.” He reportedly could not remember what he was doing from one moment to the next, the magazine reports.  For 10 years, Kristofferson was treated unsuccessfully for Alzheimer’s disease. After he was diagnosed and treated for Lyme disease, his life changed. Kristofferson’s wife, Lisa, explained that once her husband stopped taking medication for Alzheimer’s and depression; and underwent three weeks of treatment for Lyme disease; his memory and mood changes were shocking.
“All of a sudden he was back,” she says. “There are still bad days, but some days he’s perfectly normal and it’s easy to forget that he is even battling anything,” she told Rolling Stone.  From Kris Kristofferson: An Outlaw at 80. by Neil Strauss in Rolling Stone at http://www.rollingstone.com/music/features/kris-kristofferson-an-outlaw-at-80-20160606. Last accessed 6/12/16.                                                                                                  _______________                                                                                                                                   For more:  https://madisonarealymesupportgroup.com/2017/01/18/a-bug-for-alzheimers/           https://madisonarealymesupportgroup.com/2018/03/25/a-brief-history-of-neuroborreliosis-research-dementia-an-inside-look-at-two-researchers/ https://madisonarealymesupportgroup.com/2016/04/10/bugs-causing-alzheimers/  https://madisonarealymesupportgroup.com/2017/06/26/important-example-of-iv-antibiotics-for-lymemsids/https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/

Category:

Activism, Alzheimer's, Lyme, Psychological Aspects, Treatment

The Agony of MCAS

https://www.lymedisease.org/lyme-sci-mcas-agony/

LYME SCI: The Agony of Mast Cell Activation Syndrome (MCAS)

Lonnie Marcum, March 2018

In the winter of 2016, my 17-year-old daughter was dying. She had severe allergic reactions every day, was in constant pain, and was losing weight at a rate that was not sustainable to life. She had reached the end of her rope, and I was completely out of ideas on where to turn for help.

Eighteen months earlier, after a long illness and finally completing treatment for Ehrlichia chaffeensis, Bartonella and Lyme disease, she had been doing great. Unfortunately, she soon caught the flu and then everything went south.

Over the next year, one setback after another landed her in the hospital every other month with atrial-fibrillation (irregular heartbeat) and/or near-anaphylaxis (acute allergic reactions). Each trip to the doctor took one more piece of hope away from us, since no one could pinpoint the cause of her rapid decline.

Over time, my daughter developed allergies to soaps, perfumes, juices, fruits, vegetables, and lunch meats. Eventually, she was down to only two foods that didn’t make her lips swell, mouth break out in blisters and throat tighten–sauteed chicken and brown rice noodles.

Not knowing what to do, I reached out in desperation to the “LymeParents” Yahoo group. Another mother recognized the symptoms I was describing as mast cell activation syndrome (MCAS) and connected me with Dr. Lawrence Afrin at University of Minnesota. Dr. Afrin consulted on my daughter’s case, then referred us to Dr. Mark Renneker, a mast cell specialist at the University of California, San Francisco.

Soon, she received a diagnosis of MCAS, and with it a path to healing.

Coincidentally, one month after my daughter’s diagnosis, I attended Dr. T.C. Theoharides’ lecture on mast cell activation at ILADS in Philadelphia. In his words:

Mast cells are the “universal alarm cell” that starts the inflammatory cascade. They can be triggered by infection, allergens, environmental factors like pollution, or even emotional stress. Once that happens, mast cells set into motion a series of inflammatory reactions, including the activation of immune cells and the release of tumor necrosis factor-alpha (TNF-a), a pro inflammatory protein or cytokine.

If you or a loved one are in a similar situation, here’s what you need to know.

The Diagnosis

MCAS is a clinical diagnosis based upon signs, symptoms and response to treatment. There are a number of tests available to confirm the diagnosis, but negative tests do not rule out MCAS.

(For a complete guide to the diagnosis of MCAS, click here:  https://jhoonline.biomedcentral.com/articles/10.1186/1756-8722-4-10)

Mast Cell Activation Diseases

Mast cells are a normal part of our immune system. They are located in every organ and connective tissue of the body. When mast cells detect stress, injury, toxins or infection, they release specific chemicals which trigger an immune response. Think of them as sentries or guards.

When mast cells perform properly, they are our friends. When mast cells are agitated or over-reactive, the immune system goes haywire and starts to attack the body, triggering auto-inflammatory processes or some types of autoimmune illnesses.

There are two major forms of mast cell activation diseases (MCAD)

  • Mastocytosis—the abnormal accumulation of mast cells in one or more organ systems (cardiovascular, central nervous, digestive, endocrine, genitourinary, lymphatic, muscular, peripheral nervous, respiratory) which is diagnosed by a bone marrow biopsy or a C-Kit genetic mutation.
  • Mast Cell Activation Syndromes—the inappropriate release of mast cell mediators including: histamine, interleukins, prostaglandins, cytokines, chemokines, and heparin.

As far back as 1999, researchers were able to demonstrate how Borrelia burgdorferi induces mast cell activation, contributing to greater illness in Lyme disease.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC96436/

Somehow, I feel this fact has remained under-appreciated until just recently.

(To view my previous blog on symptoms of MCAS, click here: https://www.lymedisease.org/mast-cell-activation-immune-system-goes-haywire/)

PTSD of the Immune System

When I describe my daughter’s condition to non-medical folks, I say it’s like her immune system has post-traumatic stress disorder (PTSD). After going a year with multiple untreated infections, her immune system was very depleted, and the combination of antibiotics she needed to fight her infections added additional stress. As she completed antibiotic treatment for her infections, we added supplements to boost her immune system and promote healing. Or so we thought.

Unbeknownst to her doctors and me, one of her prescription medications (ketotifen) contained lactose, which she is intolerant to. In addition, she had developed an allergy to microcrystalline cellulose (MCC), one of the most common fillers in prescription medications, vitamins and supplements. Eliminating these allergens was a major turning point in her healing.

Our Five Steps to Healing

Step 1 Reduce or eliminate mast cell triggers (common triggers)
  • Infection (bacteria, fungi, parasite, virus)
  • Insect bites (spiders, ticks, fleas, mosquitos, bed bugs)
  • Stress (heat, cold, fatigue, emotional stimuli)
  • Foods (dairy, fermented or aged foods, wheat, shell fish, sugar, preservatives)
  • Drugs (alcohol, hormones, antibiotics, anesthetics, opioids, aspirin, NSAIDS, excipients)
  • Dyes (food coloring, radiographic dyes, pigments in makeup)
  • Environmental toxins (pollen, dust, mold, animal dander, heavy metals, pesticides)
  • Noxious odors (perfumes, smoke, exhaust fumes, smog)

Step 2 Assemble the “A TEAM” (sample)

  • Physician knowledgeable about Lyme and other tick-borne diseases (treat infections)
  • Physician knowledgeable about mast cell activation syndrome (lower histamine, stabilize mast cells)
  • Psychotherapist (emotional support)
  • Physical therapist (modalities for pain, lymph drainage, home care instructions)
  • Doctor of Osteopathy (functional medicine, supportive hands-on therapy)

Step 3 Find the right combination of medications/supplements

Many people with mast cell issues will improve by taking antihistamines. Antihistamines are medications that block or inhibit the histamine receptors on mast cells and other cells found throughout the body.

Histamine is a unique chemical produced primarily by mast cells that causes inflammatory reactions and the itching feeling most of us are familiar with. Histamine also signals the immune system, regulates the digestive system, and acts as a neurotransmitter in the brain, spinal cord and uterus.

There are at least five different types of cells that respond to histamine (H1-H5 receptors) found throughout the body, although H1 and H2 appear to be the most common.

Antihistamines are classified by the type of receptor that they inhibit as listed below:

  • H1 blockers—act throughout the body (Allegra, Benadryl, Clarinex, Claritin, Silenor, Vistaril, Xyzal, Zyrtec, etc.) Note: Those that cause drowsiness cross into the brain.
  • H2 blockers—act mostly in the stomach (Pepcid, Prilosec, Tagamet, Zantac, etc.)
  • H3 blockers—act in the brain (Mostly experimental: Ciproxifan, Pitolisant)

Leukotrine inhibitors —act primarily in the airways (Accolate, Singular, Zyflo)

Mast-cell stabilizers—strengthen or stabilize the mast cell to reduce the release of histamine and other inflammatory chemicals (Cromolyn, Ketotifen, Hydroxyurea)

Tricyclic antidepressants—antidepressant that also sedate H1 receptors in the brain (Amitriptyline, Doxepin, Nortriptyline etc.)

Tyrosine kinase inhibitor—inhibits certain types of proteins that control a wide range of functions including cell growth (Imatinib)

Natural antihistamines and mast-cell stabilizers—natural supplements that act to block or clear histamine and stabilize mast cells (alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, etc.)

Step 4 Customize Nutrition

Patients with certain genetic defects are more prone to MCAD. Looking into your genetics can help determine your predisposition to MCAD and/or histamine intolerance and help you design a customized nutrition plan.

Genetic defects related to MCAS:
  • KIT-D816V—KIT is a master regulator protein found on and in mast cells. A KIT mutation typically results in the mast cell being constantly activated. About 90% of patients with mastocytosis have a KIT-D816V mutation (there is a PCR test for this mutation).
  • MTHFR—The body makes several enzymes called MTHFR that are critical for the production of folate and many cellular functions. Patients with MTHFR defects may have an inability to clear histamine leading to MCAS and histamine intolerance.
  • HNMT—In the central nervous system, histamine is broken down by histamine methyltransferase (HNMT). Patients with a lot of HNMT defects will have trouble clearing histamine from the brain and nerves. Moodiness, sleep disturbance and frequent rashes or hives can be a sign of this.
  • ABPI—In the digestive tract, histamine is broken down by diamine oxidase enzymes (DAO). Defects in ABPI lead to lower levels of DAO and higher levels of histamine.
  • HLA—Variations in the HLA gene can increase the chances of gluten intolerance.
    VDR—VDR defects may lead to lower levels of Vitamin D, which is critical to immune health.
  • MAT—MAT gene is involved in the conversion of the amino acid methionine into SAMe. SAMe has 100s of critical functions throughout the body. If vitamin B12 makes you feel sick, you may have a lot of MAT defects. Your doctor can order blood work to check methionine and SAMe levels.

Nutrition

Genova Diagnostics, Tree of Life, Nutrahacker and Genetic Genie are the tools we used for my daughter. We also ran a complete vitamin and mineral panel to pinpoint nutrient deficiencies. Then, we designed a custom nutrition plan that was specific to her needs—I’ll describe it in detail in my next post.

Basic diet: Clean, fresh (nothing cured, processed or fermented), organic, gluten-free, dairy-free, dye-free, sugar-free, low-histamine, low-citrus, low-oxalate, low-nightshade.

Step 5 Stick to a Routine

Maintain the same sleep schedule
Maintain the same eating schedule
Maintain the same basic level of activity from day to day

Putting it all together

These steps may seem daunting. But when you are in a crisis like my daughter was, you are willing to go to extremes to get your life back. In my next post, I will share more details about what precisely we did.

Note: I am not a doctor. The information here represents my personal opinions and experiences. It is for informational purposes only—it is not intended to treat, diagnose, cure or prevent any disease.

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 .

References:

Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options.

Full List of Publications and Presentations by Lawrence B. Afrin, M.D.

Borrelia burgdorferi Spirochetes Induce Mast Cell Activation and Cytokine Release

Recent Publications and Presentations by Theoharis C. Theoharides, Ph.D., M.D.

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Great, great information here.  Many Lyme/MSIDS patients will improve dramatically when they consider MCAS and take active steps like the ones mentioned here.

Another option not mentioned is LDA/LDI.  My daughter’s Mast Cell issues are nearly resolved after this treatment that helps the immune system recognize “friend from foe.”  Go here for more on LDA/LDI:  https://madisonarealymesupportgroup.com/2016/05/30/new-kids-on-the-block-ldaldi/

For more:  https://madisonarealymesupportgroup.com/2017/04/17/mast-cell-activation-syndrome-lymemsids/

https://madisonarealymesupportgroup.com/2017/03/23/rebecca-keith-on-mcas-parasites-lymemsids/

 

 

 

 

 

Category:

Activism, diet and nutrition, Inflammation, Lyme, Mast Cell Activation Syndrome (MCAS), Treatment

West Virginia Governor Signs Lyme Insurance Bill

http://www.journal-news.net/opinion/editorials/2018/03/lyme-disease-treatment-best-decided-by-doctor-patient/

Lyme disease treatment best decided by doctor, patient

EDITORIALS
MAR 25, 2018

Gov. Jim Justice signed legislation this week preventing insurance companies from denying coverage for Lyme disease treatments.

This is good news for residents here in the Eastern Panhandle, which has the highest number of tick bite reports in West Virginia.

The legislation was promoted by a Berkeley Springs couple, Eric and Linda Pritchard. Since at least the summer, the couple has been conducting a public information campaign. If it weren’t for the couple’s diligence, this law may not have been passed.

We’re grateful for their hard work, and for the efforts of Eastern Panhandle lawmakers, who recognized insurance companies denial of such coverage was unacceptable.

The West Virginia legislation was endorsed by state Sen. Charles Trump, R-Morgan, chairman of the state Senate Judiciary Committee. Senate Bill 242 was also co-sponsored by Sens. Craig Blair, R-Berkeley, and Patricia Rucker, R-Jefferson. A comparable House Bill 4328 was co-sponsored by Del. Jill Upson, R-Jefferson.

Lyme disease is caused by a bacteria infection that is primarily transmitted to humans through bites from deer ticks.

The new law requires insurance companies to pay costs for Lyme disease treatments, including detection tests and antibiotics prescribed by a doctor.

The disease is painful for those suffering from it.

Symptoms of Lyme disease can vary depending on the stage of the disease, according to the Centers for Disease Control and Prevention.

Early symptoms may include fever, chills, headache, fatigue, muscle and joint aches, swollen lymph nodes and rash.

Without proper treatment, these symptoms grow worse. Days to months after a tick bite, the symptoms may progress to severe headaches and neck stiffness, arthritis with severe joint pain and swelling, facial palsy, pain in tendons, muscles, joints and bones, heart palpitations, inflammation of the brain and spinal cord, nerve pain and problems with short-term memory, the CDC reports.

Clearly, Lyme disease can turn into something serious if not treated.

According to Eric Pritchard, insurance companies, however, have adopted policies that rely on medical authorities, such as the Infectious Diseases Society of America, which have questioned whether long-term antibiotic treatment is effective for conditions associated with chronic Lyme disease.

Those suffering from chronic Lyme disease, however, often have low quality of life. Treatment – which is best decided by a patient and his/her doctor and not insurance companies — increases the possibility something can be done to help these patients.

But treatments are often expensive.

Requiring insurance companies to cover such treatments is the humane thing to do. We’re happy to see lawmakers in the state recognize this.

______________

This needs to happen in every state.  Notice that this article acknowledges the dedicated & tireless work of a couple.  This is what is needed.  Dedicated workers who will not take “no” for an answer.  The challenge, of course, is finding enough people who’s brains function & who have the stamina to endure such a process!

 

Category:

Activism, Lyme, Treatment