Archive for October, 2014

ILADS Sound Bites Day 3: 10/11/14

It’s Day 3 of the ILADS 15th Annual Conference! Here are some sound bites from your fantastically-fatigued, note-taking Lyme Whisperer.

Dr. Daniel Kindelehrer: Opening Remarks

“There’s a huge problem out there and we are going to do our best to alleviate suffering.”

Dr. William Padula, OD: NeuroVisual Processing Affected by a Tick Borne Event

“In Tick borne disease, the visual system is disconnected. And requires Neuro Optic Rehabilitation (NOR).”

“Indications of visual dysfunction included headaches, blurred vision, pain around the head/shoulder/neck area, disorientation, motion sickness.”

“There are two visual processes. The Focal process, which allows you to be able to look at something. And the Ambient process, which allows for spatial processing and balance. These two symptoms must remain in balance. Otherwise, there will be problems.”

“A Lyme related event causes dysfunction of this neurovisual process. A Lyme related event compromises the balance between the focal and ambient processes. There is a mismatch.”

“It causes an effect much like when you are driving in a snow storm at night, and suddenly put your high beams on. It causes a borage of rapidly falling snow flakes to appear in front of you and you get tired from the overstimulation.”

“There is something known as the Visual Shift Syndrome. It affects posture and balance. A person can start from one end of the room and try to walk a straight line but will veer off to the right or left instead as if a magnet were pulling them in that direction, unable to walk in a straight line…unless they where corrective prism lens. A regular prism wouldn’t work. It has to be a corrective prism lens.”

“In a study with 20 subjects diagnosed with tick events, we had subjects view a checkerboard pattern and measured Visual Evoked Potential (VEP). In the normal response, we would observe the stimulus, an amplified response, and a release. In Lyme patients, we observed a negative depression before the amplified response. This N75 wave shows the system is in focal collapse. The focal process is not balanced by the ambient process. There were lots of negative numbers in the experimental lyme group.”

“In conclusion, N-75 amplitude identifies visual stress in Chronic Lyme Disease. It represents chronic spatial dysfunction caused by stress from a chronic long-term infection. Maybe what this is really saying…is that there IS Chronic Lyme Disease!”

“Presented by the Padula Institute of Vision Rehabilitation in Guilford, CT.”

Richard Horowitz, MD: Relapsing Fever Borrelia

“There is a new Borrelia on the block. Borrelia Miyamotoi.”

“There is no reliable blood test. But it could explain the reason why some people are resistant to Lyme treatment. They are being treated for Borrelia burgdorferi and it is not B. Burgdorferi.”

“There are 100 species of Borrelia in the U.S. and 300,000 world wide.”

“The three Borrelia species that cause relapsing fever are: Hermsii, Turicatae, Parkeri.”

“Symptoms include a fever of up to 106, headaches, drenching sweats, chills, nausea, vomiting, conjunctivitis, cough. Very non specific symptoms, symptoms you’d expect in lyme or babesia as well. The symptoms will be gone for 2-9 days then recur.”

“Ticks in California have a 0.7-7.5% prevalence of Borrelia miyamotoi in the San Francisco Bay area. It’s as abundant as Borrelia burgdorferi.”

“4% of 639 healthy people in southern New England had evidence of Borrelia miyamotoi. 10% of those with a history of Lyme had B. miyamotoi.”

“2-10% of ticks that transmit Lyme may contain B. miyamotoi.”

“People might test Lyme, but they should also be tested for Borrelia miyamotoi.”

“B. miyamotoi causes unusual hemolytic abnormalities, including strokes, myocarditis, and arrythmias.”

“It can cause fetal death and spontaneous abortion. It is a real concerns and OBGYNs are not screening for it.”

“15 days of antibiotics usually works.”

“One patient I had had severe psychosis. Which babesia can also cause. We finally did a PCR (DNA culture test) for B. miyamotoi and he was positive.”

“This is the new co infection and we need to start thinking about it.”

Dr. Neil Nathan: Methylation

“Got methylation?”

“Methylation is essential for energy production, gene regulation, detoxification, DNA, myelination, neurotransmitter function. There are 200 major reactions in the body that require methylation.”

“The end product of methylation is glutathione. There is no other substance more important than glutathione. If you don’t have proper methylation, your body just can’t “bake” glutathione.”

“Infection is a major disrupter of methylation. Infections result in a deficiency of magnesium, zinc, B12 and B6, all of which are key methylation cofactors.”

“The methylation pathway goes from methionine to SAMe (s-adenosyl-methionine) to SAH (s-adenosyl-homocysteine) to homocysteine back to methionine which goes down to glutathione. This is also connected to the folic acid cycle. And it’s also connected to dopamine and serotonin.”

“If you use methyl B12, the active form of B12, the body will say I have all I need. And it shuts down its own process of methylation rather than stimulating it. That’s why we focus on using hydroxycobalamin B12 in our practice.”

“It’s the same thing for glutathione. If you take glutathione, your body will think it has all it needs and stop making it on its owns. As a result, you run the risk of shutting down methylation. I know what I am saying is highly controversial.”

“A methylation protocol I follow involves L-5MTHF, hydroxycobalamin B12, phosphatidylserine, and vitamin B6 in the form of pyridoxal-5-phosphate. I have this protocol to 51 patients with Chronic Fatigue and Fibromyalgia. Low and behold the majority got better.”

“You can improve things dramatically with these simple vitamins. First, we made sure to address food allergies, adrenal function, thyroid function before hand if these were underlying factors.”

“My study results showed that after 9 months, all patients were in the normal range for glutathione and methylation factors.”

“Typically, it takes 5 weeks or so to improve. 53% of patients did report side effects. This is not rare. Many patients cannot be put on full protocol immediately. Give much less and less often when first starting out. Like one dose every 3-4 days then nudge it up.”

“What to avoid? Folic acid and cyanocobalamin.”

“What to measure? We use Health Diagnostics for the methylation panel and you can use 23 and Me or Genova for genomic markers.”

Joseph Brewer, MD: Mycotoxins

“In an April 2013, study involving detection of mycotoxins in patients with Chronic Fatigue Syndrome, we showed that both chronic fatigue syndrome and mycotoxin exposure caused the same symptoms: fatigue, neurologic issues, endocrine abnormalities, immune dysregulation, oxidative stress and mitochondrial dysfunction. Half of the patients had a background of Lyme Disease.”

“Mycotoxin induced immune abnormalities could make individuals more susceptible to the effects of Lyme.”

“Mycotoxins suppress ALL aspects of the immune system.”

“Some immune suppressants used in medicine are derived from mycotoxins/mold.”

“You can do a urine assay for mycotoxins. Chronic mycotoxin exposure will cause a positive urine assay.”

“Mycotoxins exposure can come from exposure within buildings or ongoing internal mold colonization, such as in the sinuses.”

“How does your body excrete mycotoxins? Through the urine, liver and sweat.”

“The sinuses are a chronic reservoir for mycotoxins which can readily form biofilm. If treated with antifungals this can improve.

“Biofilm is somewhat of a nightmare. To break up biofilm you can use EDTA, polysorbate 80, mupirocin, intranasal nystatin, liposomal amphotericin.”

“We use the NasaTouch Device. We’ve seen a 25-50% reduction in symptoms with these intranasal treatments.”

Dr. Burrascano, Dr. Fallon, Dr. Lee: Laboratory Advances

Dr. Burrascano:

“PCR testing, a urine test, has low sensitivity because the urine contains nucleases.”

“The T-cell assay is another indirect test. The test available through InfectoLabs of Europe has a specificity of 80%.”

“The Sapi culture method takes up to 16 weeks and has a sensitivity of 94%. It covers both European and U.S. based Borrelia species because of the polyclonal antibodies used.”

“Borrelia often exists partially or wholly in red white blood cells and white blood cells. We need to use chemotractants to free up the organisms.”

“In order to increase the spirochete load for a specimen, blood should be drawn in the afternoon. Or at the time of symptom flares. And there should be no previous antibiotic exposure for at least 4-6 weeks.”

“The Sapi culture technique to date has collected 5,500 samples since 2011. This represents the largest Borrelia burgdorferi culturing experienced in the world. Culturing B. miyamotoi requires special media.”

“It’s always been thought that Borrelia burgdorferi has yeast like properties.”

“Borrelia serum banks are great but they are not helpful for using to culture Borrelia, as the blood has to reach the lab in 24 hrs to be cultured. Otherwise, it will get stale.”

Dr. Brian Fallon on the SpiroFind Assay (Lyme Research Center at Columbia)

“The holy grail of testing would be to test for all species at all stages.”

“Current tests query the weaker immune response, which is the Innate response consisting of macrophage activity, phagocytosis, and the inflammatory response. In school, we were taught that the innate immune response does NOT have memory.”

” I have NEWS for you. The innate immune response does in fact have memory and can be trained to sustain an immune response to a specific pathogen. Monocytes retain an “immunological scar” that allow them to have “trained immunity”. They can be trained to sustain an immune response to a specific pathogen.”

“The goal of the Columbia Lyme Diagnostic Study is to conduct a rigorous validation study of the SpiroFind Assay for the U.S. market.”

“The primary hypothesis is that the SpiroFind will be positive in the early infection (EM) and significantly more so than the ELSIA or Western Blot. It will be negative after standard antibiotic treatment for antibiotic based assays. It will have good specificity and distinguish between Lyme, non Lyme, and healthy individuals. The study will involve 200 previously treated individuals and 200 controls.”

Dr. Lee: Novel PCR Lyme Testing, 16S rDNA

“In science, you don’t have to be polite. You have to be right.”

“You don’t have to use a two tier system to diagnose Ebola?!”

“My approach to PCR testing is to first use a DNA primer and a DNA sequencing based test. 16S rDNA has been in the literature for 20 years. It can be used to amplify diagnostics. If you have a test kit that can amplify DNA and then do DNA sequence testing, you can test for Borrelia.”

“There is no false positive for Lyme bacteria identification of Borrelia burgdorferi w/16S rDNA sequencing.”

Once again, thank you speakers and thank you ILADS! You’ve given us all much to read up on and to hope for.

ILADS Sound Bites Day 2: 10/10/14

It’s Day 2 of the ILADS 15th Annual Symposium in Washington, D.C. Here’s some sound bite highlights:

President Daniel Cameron

“Today, we open with our largest opening ever…500 attendees representing 42 states.”

Dr. Monzayeni, MD: Bartonella: Scientific and Clinical Considerations in Lyme Disease

“Suspect Bartonella especially when there are neurological or neuropsychiatric findings…especially when Lyme treatment fails.”

“It is possible to get Bartonella with out Borrelia. In fact, I think it is quite common. Bartonella can cause false positive on IgM Western blots.”

“Rodents. Birds. CATS. Dogs. Wildlife. Notice my emphasis on CATS?! Cats have 1,000,000 fold higher Bartonella levels in their blood than other animals. People can get Bartonella from cat (scratches) and flea exposure. That’s why they call it cat scratch fever.”

“Bartonella’s infection strategy is to get in the vascular system. It is a Small Vessel disease. Small Vessel disease causes working memory impairment and mood disruptions. Other signs include peripheral neuropathy (tingling), POTS, tremors, muscle/joint/pain, headache, fatigue.”

“With Bartonella, nerves are like the most sensitive trip wires.”

“When testing for Bartonella (Galaxy Labs), take a sample. Test the serum for presence of Bartonella DNA. Culture the blood. Test that. If negative, wait for awhile. Then repeat.”

“Bartonella is bizarre. It is an immune suppressant. Yet a B-cell stimulator.”

“In one case of a 30 year old veterinarian, a breast cyst tested positive for Bartonella. What is fibrocystic breast disease? Is there a connection? I don’t know. Liver cysts have also been seen.”

“You know you’ve arrived when you get a nasty letter from the editor from the CDC Lyme Team.”

“In my practice, 1/3 of my patients with Bartonella have Lyme, 1/2 have psychiatric issues and most have neurological issues.”

“There is no data on transmission of Bartonella during pregnancy. Over the last 4 years, I’ve seen five pregnancies, and the umbilical cord blood was negative for Bartonella in all 5. All the children are well. Nature may have developed a way of dealing with Bartonella.”

“My overall experience with Bartonella is generally positive, when using antibiotics.”

“Endocrine dysfunction is very common in Bartonella and this dysfunction interferes with treatment drugs. The adrenal and thyroid dysfunctions must be treated first or treatment will fail.”

“Typically with Bartonella, i.v. antibiotics is not needed. And there is a low rate of true relapse.”

Dr. Joseph Annibali: The Role of Spect in Diagnosing & Treating Lyme

“Modern psychology may reflect and lead to connections to infectious disease. Like Bartonella.”

“What is my connection to Lyme? My friend Gary, my daughter, her dog, our horse. And our cat at home, Valentino..My friend Gary was in a cardiac unit for 10 days after having palpitations. They wanted him to get a pacemaker. It ended up he had Lyme.”

“SPECT stands for Single Photon Emission Computed Tomography. It measures blood flow to the brain, not brain activity. It shows areas of the brain that work right and areas that don’t work right. It doesn’t give us specific answers. But it helps us ask better questions. There are other causes of low blood flow, or hypoperfusion, such as drug use or HIV.”

“In 75% of Lyme patients, we see hypoperfusion. Blood flow is reduced and the brain looks less healthy. It indicates low activity in certain areas. Abnormalities in an MRI are found in 14%. The SPECT is much better than an MRI.”

“There are two patterns in a SPECT. The first pattern is scalloping. These looks like bumps in the image of the brain. It has a toxic-looking bumpiness to it.”

“The second pattern of a SPECT is limbic overactivity, or inflammation.”

“How does a SPECT ultimately help? It emphasizes the need to decrease inflammation and/or calm the limbic system. It helps parents and families and even the affected to understand and accept why they are acting or feeling a certain way, including moodiness. It’s validation. It reduces guilt and shame. It can also help follow the progress of treatment.”

Stephen Phillips, MD: Brucellosis

“Brucellosis has been studied for over 100 years. We still have no agreed upon treatment.”

“When given, Vitamin C 1 gram per day for 15 days, 75% reversal of Brucella anergy was observed. Edible mushrooms are also helpful.”

“Liposomes are spherical vessels with lipids. Their structure mimics cell membranes. The immune system sees liposomes as invading cell and gobble them up. This makes liposomes an ideal drug/nutrient delivery system.”

“Liposomal gentamicin is 20,000 times more effective than free gentamicin.”

“If you miss a case of Brucellosis, it’s a tragedy. We don’t have the diagnostics, but we shouldn’t miss it by looking for increased CRP, fevers mostly in the evenings, hobbling and pain.”

Robert Bransfield, MD: Sleeping Disorders Impacting Lyme Patients

“Recovery is associated with sufficient REM sleep”

“Chronic stress and non restorative sleep from Chronic infections contributes to disease perpetuation which leads to compromised immunity.”

“With Chronic Lyme, you are half awake, half asleep all the time. You are never fully awake and never in a deep sleep.”

“Lack of sleep causes mitochondrial stress and shrinkage of the brain.”

“Delta sleep deficiency and sleep problems result in increased proinflammatory cytokines. Sleep deficiency blunts the immune response.”

“I’ve seen patients with horrific and intrusive images in the form of nightmares.”

Wayne Anderson, ND: Parasites

“Abdominal pain and constipation are two of the main signs or symptoms.”

“My Constipation Hypothesis: Chronic Lyme patients will have great difficulty or never get better when they are constipated. It blocks and locks the system. I’m highly sensitive to constipation in my patients.”

“Magnesium and vitamin C can be helpful.”

“When the constipation is recalcitrant, think parasites!!”

“Constipation happens because there is a lack of communication between the brain and gut. And inflammation of the lining of the gut.”

“The worse the abdominal pain, the most likely to be parasites. My suspicion index goes way up.”

“Antiparasite pharmaceuticals include Alinia, Albenozole, Ivermectin.”

“Antiparasitic herbs include Byron White A-P formula (15 drops 3x/day), gamma oryzanol, artemisia (helpful for babesia)”

Dr. Horowitz: Case studies

“For neuropathy, we used methyl B12, alpha lipoic acid and benfotiamine.”

“For OCD, inositol 2 grams several times per day.”

“For detox, oral liposomal glutathione which also helps with memory and fatigue.”

“Adrenal dysfunction is the largest nail that needed to be pulled. Find all the nails by using the 16 point MSIDS map. Once all of the things on the map are addressed, the patient will start to get better. It’s all in my book.”

“Thank you all for your compassion. It’s really people like you that are the future of medicine.”

“Joe Burrascano is one of the father’s of Lyme disease. He taught me what I know. Now I teach you what I know.”

Thank YOU all for YOUR compassion speakers and ILADS!!

500 docs from 42 states learning how to diagnose and treat Lyme!

500 docs from 42 states learning how to diagnose and treat Lyme!

Great kick-off day at the “ILADS DC 2014 Fundamentals of Diagnosing and Treating Tick-Borne Illness”!

Did lots of note taking today, but only enough mental energy right now to share some sound bites!

From Daniel Kinderlehrer, MD:

“Based on restricted criteria, the CDC estimates 300,000 new cases of Lyme each year. However Boltri and Hash believe that is closer to 1.2 million cases each year, almost 500,000 of which will end up being Chronic Lyme.”

“Remember, first the truth is ridiculed. Then it becomes outrage. Then…it is said to have been obvious all along. Folks, this ILADS movement will become mainstream, it will.”

“Syphilis is the original Great Imitator. This bacteria has 30 genes. Borrelia is the new Great Imitator. It has 132 genes. Syphilis is Lyme’s dumb cousin.”

“Twenty-nine percent of ticks in the arctic circle are infected with Borrelia.”

“Lyme has been reported in 50 states.”

“How does Lyme present? Any way that you can think of.”

“Have a high Suspicion Index when it comes to Lyme. Even when the tests are negative, look for the symptoms that present.”

“Morning sweats? Bartonella. Night sweats? Babesia.”

“50% of my patients became gluten sensitive after being diagnosed with Lyme.”

“Doxycycline is the new morning after pill. Morning after a tick bite.”

“After treatment, 42% of Lyme patients are still not well. After three years, 12%.”

“Only 14-16% of the thousands of IDSA guidelines are supported by at least one properly designed trial.”

“301 studies cite evidence of persistent infection even after treatment. Borrelia burgdorferi can withstand antibiotic treatment.”

Joe Burrascano, MD

“Biofilm has a 1,000 fold increased tolerance to antibiotics. Clorox does not even kill biofilm.”

“Borrelia is rapidly transmitted. The 24-36 hour window is a fallacy. A study at reference labs shows that Borrelia can be transmitted from a tick within two hours.”

“Only 17% of those with Lyme recall a tick bite and 36% a rash. Meanwhile, serotologic diagnostics only diagnose half of the cases…that’s a coin toss!”

“Some believe that the most sick will have the most positive Western blot results. The opposite is true. Over time, Lyme forms immune complexes, immune dysfunction and immune suppression. Lyme is either hidden in their bodies unable to be found or they are so sick they don’t produce antibodies anymore. They are actually most likely to have a negative result.”

“Doxycycline 400 mg daily. Not 100 mg. Not 200 mg. That’s not strong enough.”

“Can we cure Lyme Disease? Right now there is no fool proof way to cure it and relapses can occur. Most docs need to treat the patient until they are asymptomatic for 6 weeks.”

“Should you treat a tick bite prophylactically? Should you treat it or wait? There is no single answer. A number of factors need to be considered. The type of tick, how deep it is embedded, whether it is engorged or not, the patient’s health and history (immunocompromised?). If treating, I’d recommend Doxy for the 1st two weeks to target lyme and then switch to a cell wall busting antibiotic to target erhlichia/anaplasma. But treat for 4 weeks.”

“They type of exercise that is beneficial to boost T-cell function is whole body exercise. Like resistance training and weights. Not aerobics. Then best to take a hot shower/bath and lie down or sleep after a workout.”

Ginger Savely, DNP

“Regular commerical Western blots (Quest, LabCorb) are only 46% sensitive. IgeneX Western blot is 90% sensitive.”

“There are 7 bands you need to know: 18, 23, 31, 34, 39, 83, 93”

“Blood culture is a direct way to test for Borrelia, but there is usually such a small amount of bacteria found in the blood, could take up to 5 months to culture, and can cost as much as $700.”

“Other tests that assist in putting the Lyme puzzle together diagnostically are CD57, C4a, C3a, and SPECT scans of the brain.”

“Don’t use the ELISA test. Go straight to the Western Blot. It is not appropriate for you to rule out Lyme just because a test (Western Blot) is negative. Remember the 7 bands we talked about? Any one of them being positive should cause you to be suspicious.”

“Treat the patient, not the lab test.”

Dr. Richard Horowitz, MD

“In my Hudson valley in NY, 71% of ticks had 1 co-infection, 30% had 2 or more co-infections, and 5% had 3 or more.”

“There are over 100 species of Babesia. When testing for Babesia, a full Babesia panel must be done. Otherwise, it is easy to test negative for Babesia on tests that are only sensitive for one strain. Symptoms include fever, chills, flushing, air hunger, flares every 4 weeks, mood disturbances. Treatment includes mepron and zithromax, possibly made more effective with Bactrium. I also use grapefruit seed, artemesia, neem, cryptolepis.”

“There are over 30 species of Bartonella. Bartonella testing is inadequate Symptoms include irritability, rage, insomnia, seizures, red papular eruptions, stretch mark like streaks, subcutaneous nodules, a creepy crawly sensation under the sking, gastritis, constipation, nausea/vomiting, burning pain, burning soles in feet, paresthesias, electric like sensations, inflammation in/around the eyes. Treatment includes doxy and rifampin. Or tetracylcine and macrolides. If using quinolones, take 600 mg alpha lipoic acid 2x per day and 500-1000 mg magnesium to protect tendons.”

Thank you speakers, thank you!

Dr. Horowitz and I at ILADS 15th Annual Symposium

Dr. Horowitz and I at ILADS 15th Annual Symposium