My Notes from the Southern Tier Lyme Support Conference

On Saturday I attended the Southern Tier Lyme Support Conference. It was held at Binghamton University in Vestal, NY.

Aside from a local Lyme conference, I attended in Frederick, MD a few years ago, this is the only Lyme conference I’ve attended in the ten years I’ve had Lyme disease and coinfections. This conference was very well organized and the vendors involved were helpful and interesting to talk to.

The morning began with Binghamton University’s professor Dr. Ralph Garruto, Ph.D., and Ms. Amanda Roome, Doctoral Student, Dept. of Anthropology. Ms. Roome shared with us their findings of why Lyme disease is rising. She shared information about ticks, their life-cycle, where they’re typically found and how they transmit disease.

Here are few key points from Binghampton University Research:

• Nymphal ticks transmit 90% of infection.
• While lab controlled studies show that Lyme transmission can take between 36-48 hours, they are finding that this doesn’t translate to real life experience and ticks can, in fact, transmit much sooner.
• Deer are not the primary host of Lyme disease.
• Deer have a no or low rate of Lyme disease because they have prophylactic protection.
• Deer are the primary breeding ground for ticks.
• The white-footed mouse is the primary host of Lyme disease.
• Lyme infections are higher in communities, because of “broken ecosystems”, than they are in the woods where the ecosystem balances out the number of rodents.
• The BU Research Team have found that infection in mice is greater in their organs than in the blood.

Next, we heard from Robert Giguere, Director of sales, IGeneX, Inc.

Here are few key points from Mr. Giguere

• There are 37 different species of Borrelia but only 7 are known to cause disease in humans.
  Borrelia Burgdorfer (Lyme
  Borrelia lonestari
  Borrelia afzelli
  Borrelia garinii
  Borrelia miyamotoi
  Borrelia Hermsii
  Borrelia mayonii
• There are other emerging species possibly causing disease in humans.
• Explained the clinical presentation of Lyme disease as well as common symptoms.
• Discussed Lyme testing, why the 2-tier tests fail and why IGenix tests are different and more specific.
• Because of the Lyme vaccine, Lymrex, the CDC removed two necessary bands of antigens from testing, creating a high rate of false negatives.
• Having an IgM for Lyme appear positive is not always indicative of a new infection because the Lyme spirochete moves in and out of the blood. As it does it produces something called Quorum Sensing making it look like a new infection to the immune system.
• An Indeterminant result of a necessary Lyme band means something is going on in the immune system indicating a possible Lyme infection.
• There are over 700-800 peer-reviewed articles supporting chronic Lyme.
• Softshell ticks are a growing threat and can transmit disease in less than an hour.
• Softshell ticks are carrying B.miyamotoi, B.hermsii, B.duttoni, B.parkerii and relapsing fever.
• Tick-borne relapsing fever caused by B.hermsii is endemic in the higher elevations and the western United States as well as southern British Columbia.
• B.miyamotoi may be prevalent in areas where Lyme is endemic and doctors are not looking for it, nor will the standard Western Blot detect it.
• More ticks are positive for Bartonella than for Lyme.
• There is no test for proof of cure.
• If you find a tick you can and should send it in for testing to either The University of Massachusets or Bay Area Lyme.
• The CDC detection for cases of new Lyme infections has risen from 300,000 to 386,000.

A low dose of Doxycycline to treat an early Lyme infection or to treat prophylactically will only lower the immune system and cause the Lyme bacteria to hide.

[bctt tweet=”A low dose of Doxycycline to treat an early Lyme infection or to treat prophylactically will only lower the immune system and cause the Lyme bacteria to hide. #lymedisease #Lymeawareness” username=”aboundinginhope”]

Next, we heard from Dr. Kenneth Bock, MD, Bock Integrative Medicine, Presenting-Brain Inflammation: The Role of the Dysregulated Immune System in PANS/PANDAS, Lyme Disease and ASD.

• Discussed the immune system and the gut-brain connection.
• Explained that 70-75% of our immunity is in the gut and when we eat a SAD (Standard American Diet) it creates inflammation in the body and affects the brain.
• Stress, infections, drugs, enzymes, proteins from milk, grain and gluten, heavy metals, PCBs and air pollution all cause a dysregulation in the immune system of the gut.
• The cases of Autism Spectrum disorders have risen in the United States and now 1:45 children between 3-17 have Autism.
• The primary underlying genetic vulnerability may be caused by an impaired ability to detox from environmental (heavy metals, pesticides, and other chemicals) and agricultural toxins, food allergies, and infections.
• Discusses dealing with brain inflammation as well as how the immune system works and what happens during exposure to toxins and inflammation.
• Gave descriptions of PAN/PANDAS and the similarities and differences between those and Lyme disease and coinfections.
• Discussed the treatment protocol for children with tick-borne diseases that present like PANDAS.
• Lyme disease and co-infections masquerade as MS, RA, RM, CFS, Autoimmune disorders, neuropsychiatric disorders, ADHD/Autism, Neuropathic disorders, Neuropathies, Pain Syndromes.

• Tick treatment – advises against waiting for symptoms. Advises 3 weeks of antibiotics for a tick bite and 6 weeks or longer for a bite with a rash.

Finally, we heard from Dr. Richard Horowitz, MD, Hudson Valley Healing Arts Center, Presenting – How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease.

Here are key points from his talk:

• Staggering statistics – 1 out of 5 Americans are disabled, 15 million have autoimmune diseases, 5% CFS/Fibro, and every 67 seconds someone is diagnosed with Alzheimer’s.
• 86% of health care costs are due to chronic disease.
• Recommends his 16 point keys in his book.
• The key to getting better is getting to the underlying causes of inflammation.
• It’s Not Just Lyme!
• Ticks are not the only vectors transmitting Lyme or these other diseases.
• He prefers to call Chronic Lyme MSIDS or Multiple Systemic Infectious Disease Syndrome.
• Recommends completing his checklist found here.
• Discussed persisters. They are spirochetes that go dormant and can come out years later. They hide in biofilms and it takes 3-4 intracellular drugs for the worst cases.
• If you’ve been diagnosed with Chronic Fatigue Syndrome or Fibromyalgia and you have good and bad days with migrating pain, it’s Lyme.
• 90% of Lyme patients have migratory pain.
• Best Repellents – Lemon eucalyptus oil, IR3535 (Skin So Soft), and Picaridin. Repels ticks, doesn’t kill them.
• Infection Transmission: Lyme = 6 hours, Powassan = 15 minutes, Rocky Mountain Spotted Fever = 10 minutes, Hermsii = 5 minutes
• There have been 15 new Borrelia species in the past 20 years.
• Discussed the different strains in the different states and suggested there may need to be state specific Borrelia tests.
• Lyme causes Common variable immune deficiency (CVID)
• Lyme is not likely to be Sexually Transmitted because of the low numbers of spirochetes.
• Lyme is transferred from a mother to her unborn baby.
• If you Lyme with a rash 30 days of Doxy is not going to cure it.
• Less than 25% get a rash.
• The standard 2-tier test produces over 500 times more false negatives.
• Discussed inflammation and toxins.
• Discussed the clinical diagnosis process as well as testing.
• Lyme Bingo – If you have any of these bands 23, 31, 34 39, 83-93 you have Lyme.
• Discussed a study stating that 80% of ticks have Babesia and 50% Bartonella.
• Lyme causes viral infections to reactivate.
• Discussed Candida, Immune Dysfunction, Food allergies, and nutritional deficiencies.
• Discussed the need for some to supplement with Magnesium, copper, zinc, and iodine.
• If there’s mitochondrial dysfunction there’s a need for CoQ10 and NAC
• Discussed his recent work using Dapsone.
• ANS dysfunction – POTS (test by taking pulse in a sitting then standing position every 3 – 6 – 9 minutes)
• Discussed heavy metals, pesticides, VOCs, BPAs.
• Detoxification is important
• Oxidative stress and inflammation – 1) curcumin, green tea, resveratrol, broccoli seed extract. 2) low dose naltrexone 3) anti-inflammatories diet including Omega 3 & 6, 4) Minerals 5) Sleep 6) Treat Infections 7) Detox 8) Balance Hormones 9) Heal damage to the body 10) Heal Emotions.
• Detox with Alka Seltzer Gold, Sodium Bicarbonate, and Lemon in a glass of water.
• The need for Lactobacillus gasseri
• Melatonin affects the TH17 helping to reduce inflammation.
• Meditation lowers inflammation.
• Biofilms respond Nutramedix Stevia and Serrapeptase
• Discussed Coconut Oil Extract
• Discussed the autoimmune reaction towards vaccines. Many people with Lyme can have adverse reactions to vaccines.
• For more detailed information and Dr. Horowitz’s complete protocol order his book How Can I Get Better (Affiliate link).

My final thoughts:

Lyme disease is a pandemic. Borrelia can be found around the world and in every state of the United States. Lyme is never the only infection one needs to be concerned with. New Borrelia strains are being discovered and studied. Despite the number of different strains and the number of co-infections, there aren’t quality tests to assure peace of mind. To make matters worse, doctors are not acknowledging this problem and are falling grossly behind the science failing to recognize, diagnose and cure early infections. They have no idea what to do with a patient who has already become chronic and so they label them with another auto-immune disease in order to “do something”.

It’s important for each person to do their own research and be prepared to spend money out of pocket if necessary to get the right treatment, the earlier the better.

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If you don’t have a tick-borne infection here’s what you can do now – start building your immune system, eat clean, limit toxins, practice ongoing detoxification to rid the body of environmental and chemical toxins, limit stress, practice safe tick prevention and have the name of a doctor who will take you seriously and treat your tick-bites with the necessary medication in order to prevent a chronic infection.

If you already have tick-borne diseases – don’t give up hope. Do the things mentioned above and take the steps to find a functional or integrative doctor who can help peel the layers back on your immunity, deal with candida, discover what viral, bacterial and parasitic infections you have, listen to your body and heal emotions.

Learning about tick-borne diseases can be completely overwhelming and living with it can make you feel hopeless, especially the financial aspect of Lyme, but you can take practical steps to work on your immune system and your emotional health even if you don’t have the resources for medical care. Prayer and exercise lower the inflammatory response in your body and increase powerful pain-relieving hormones. Use those two vitally important tools to strengthen you.

[bctt tweet=”Prayer and exercise lower the inflammatory response in your body and increase powerful pain-relieving hormones. Use those two vitally important tools to strengthen you.” username=”aboundinginhope”]

We’re in this together. Thankfully, there are good doctors researching and helping to spread this very important information.

For More Information

Southern Tier Lyme Support